Are Frequent Scans Safe.: I have stage... - SHARE Metastatic ...

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Are Frequent Scans Safe.

viennagirl
viennagirl

I have stage four metastatic breast cancer. My Oncologist has me going for a CAT scan and a full body bone scan every three months. Aren't those scans loaded with radiation? If they are damaging is it a good idea to have so many scans. I am quite worried about this. I am on Ibrance and Letrozole for over a year now and staying quite stable but lately I have a slight elevation in the calcium level in my blood. My Oncologist seems to panic about things that have not yet become a problem and she is using this to try to talk me into taking bone strengthening medications that I don't want. She tells me if my calcium level gets too high I could go into a coma and die. So she says I should take the bone strengthening drugs. However the calcium level in my blood - at this time - is only slightly elevated. I really resent being terrorized into doing things I don't want to do. Is anyone going through similar problems with an over zealous Oncologist. I don't feel confident in her treatment of me. She is very difficult to talk to and she has been wrong about a number of things in the past. I feel I should stand up for myself but don't want to jeopardize my care. I have repeated refused to take the bone strengthening drug she wants me to take. I don't want the type of drug because there is a risk of getting necrosis of the jaw. But she is really putting pressure on me. She said there is no other drug that will strengthen bones that is available to me. She is so difficult to deal with and it is causing me so much stress. In the past this doctor recommended I have a bronchoscopy because she was quite sure that the lymph node in my chest was malignant. She said because I was already diagnosed with mbc cancer she didn't know if the bronchoscopy was really necessary but she said we should do it to be sure. As a result I am left with a chronic cough. The cough was a result of the bronchoscopy but it was supposed to clear up two weeks after the bronchoscopy. It is has now been over a year and I continue to cough. Lately I have had infection in my lungs. She also wanted me to have radiation treatment on one of my tumors on my rib. The radiation oncologist has refused because she said it wasn't necessary. I am so lost when it comes how to feel about my treatment from my Oncologist this doctor. I don't have the strength to begin fighting with her but I am very angry at her badgering me. She has been doing this since almost day one. I don't trust this doctor but don't think I will ever be able to get anyone else. I don't even know where to begin. It is extremely difficult where I live to even get any kind of a doctor much less change to another one. I am feeling sad right now and just don't know what to do. Is anyone going through anything similar. I am usually very optimistic but now the anger is pulling me down and I don't think being worried and sad is good for healing.

105 Replies
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Hi Marlene,

I'm sorry to hear that you are having such a hard time with your oncologist. She sounds like quite a bully. Even if she feels that what she is suggesting is in your best interests, she should not be pressuring you to the point that you feel backed into a corner and unable to see a way out. Do you ever take a friend or family member with you to your consultations with your oncologist? If so, they might be able to advocate for you and get your oncologist to listen to your concerns, rather than demanding you follow her advice. I can understand not trusting her given her track record of getting things wrong. In my view, if there is no trust between us and our oncologists then we don't really have much to work with.

Can you at least try to get a second opinion, even if you can't switch oncologists? If another doctor agrees with the bone strengthening drugs, then perhaps you will feel more confident about taking the advice. I have been having zometa infusions to strengthen my bones since June 2018. There is a risk of osteonecrosis, but it is quite rare.

You shouldn't have to fight with your oncologist. She should be taking better care of you and listening to your concerns rather than trying to force her views on you. But rather than write off everything she says I would ask for concrete explanations of why she wants you to follow a certain course of treatment, what the benefits are going to be, and if there are any side effects or downsides you need to be aware of.

I hope things improve with your oncologist.

Sophie

viennagirl
viennagirl
in reply to SophSP

Thank you Sophie. Yes, next time I talk to her I will ask my friend to come with me or be with me in the case of a conference call. I often have my husband with me but he is as easily bullied as I am. He is a wonderful support but I think a friend would be a better solution. They might be able to get my Oncologist to be more aware of how I want to be treated. I really think it is important to be listened to and be able to take part in the decision making. Hugs Marlene

SophSP
SophSP
in reply to viennagirl

You're welcome, Marlene. I agree with you. It is very important that we feel listened to and have a role in the decision making process. After all, we are the ones going through this so have a right to be involved.

Sophie

viennagirl
viennagirl
in reply to SophSP

Hi Sophie,

The good news is that I have requested a new Oncologist.

I contacted the Oncology nurse line at the Cancer Agency and told her how I was feeling. She was very sympathetic and she has started the process for a new Oncologist. She said I might have to wait a bit for someone to have a space for me. She comforted me and told me it is okay to ask for another doctor.

I will have to wait a bit for my new onc - but that is okay with me. I just don't want to spend any more time with my current Oncologist. I just get so down and sad every time I talk to her. I don't like her threatening tone. And she delivers statistics to me like a robot. She practically shouts at me. I just don't need that kind of stress. I am refusing the drug that has the potential to cause necrosis. I am terrified of that drug and believe I would get that necrosis because of my age. I do believe I have a right to refuse certain drugs if I am afraid of them. There has to be something else for me.

I am actually doing quite well. According to my scan results my bone mets are improving. I just need a doctor that is open to having discussions about my care. I want to feel that I am participating and making decisions based on good science. I appreciate your wise words of encouragement. Your words have helped me tremendously. They helped me decide to stand up for myself. I was afraid that I would meet with so much derision if I complained. I was very relieved when I was able to discuss my concerns with a kind, empathetic nurse.

Thank you Sophie.

I wish you well in your treatment journey and I am especially glad that you do not get any bad side effects from your Zometa infusions. Hugs Marlene

SophSP
SophSP
in reply to viennagirl

Hi Marlene,

I'm glad you were able to speak with a sympathetic oncology nurse and that you have changed oncologists. If there was no way to get along with your current oncologist and you were feeling stressed, then you have made the right decision for you. I'm sure the stress must have been getting you down and you don't need that. It is important to feel that we have a say in the treatments we are offered. But I would just carefully consider your options. This new oncologist may also mention the use of bisphosphonates to help strengthen your bones. It sounds like you are looking for alternative ways to strengthen your bones. I would start off by asking your oncologist about supplements that might help.

Thanks for the well wishes. I wish you all the best too!

Sophie

We already worry so much about our diagnosis but to have to stress out about your oncologist is an added burden. Is there any way you can change oncologists? If not, can you see an oncologist in another hospital? My suggestion might not be of much help but I just wanted to sympathize with you.

Thank you for responding. I have been thinking about trying to get another Oncologist but not sure if it is possible. When I was first diagnosed I told my doctor that I would see any Oncologist except the one that had treated me in the past. He didn't listen to me and I found myself back in the care of a doctor I don't like and I think she is a bully. I was so terrified at the time that I just went to her like a sheep to the slaughter. It is not good to be this scared when I am actually doing reasonably well. I think if I had a caring doctor I would accept risks more readily. My Oncologist just seems hell bent on doing things her way and not even allowing me time to ask questions. She is always in a big hurry and she is abrupt with me. Next time I see my GP I will ask him if a change of doctor is possible. I have to travel quite a distance to see him so it won't likely be soon but the next time I make the trek I will bring up the subject. It just doesn't feel good to be treated like a child.

I hope you are doing well and hope you have a kind doctor. I am so grateful to have you to discuss this with. Hugs Marlene

If you do not trust the oncologists judgement you should look at the options of finding a new oncologist perhaps. Trust your instincts, you should feel more at ease with their recommendations for YOUR treatment.

viennagirl
viennagirl
in reply to Cynzona

Thank you. I agree with you and will see if I cannot be transferred to another Oncologist. Hugs Marlene

Hi there

I’ve had to ‘disobey’ my oncologists advice lately but for a different reason...she wanted me to have chemo after my drugs failed but I refused as it terrifies me and I didn’t want to be suffering hideous side effects through what could be my last summer...so I’m trying faslodex injections

I have numerous widespread bone mets and from the beginning of my diagnosis have had a monthly denosumab (xgeva) injection to strengthen my bones....I’m happy with this as I don’t want to die from an elevated calcium level and the risks of getting ONJ are extremely rare and not usually fatal...up to you though but I would seriously consider your bone strength ...you’re risking fractures if your bones are weak......oncologists generally have a certain way of treating us and their knowledge has come from years and years of research and trials but they also can be ‘stuck in their ways’...we’re not all the same and should be treated as individuals

As for the high levels of radiation from scans...I just accept that as a necessary evil as I’m not expecting to live for a long time and I would rather know what’s going on in my body so what’s the point of worrying?

I hope you come to a decision you’re happy with

Barb xx

Thank you Barb,

I am listening to all of you who have responded and will have to think this over again. I will wait to make a decision after I know more about my calcium levels. If they increase I might take the bone strengthening drugs. Still not confident it is the answer. I will continue with the scans because 'yes' I guess it is good to know if I am improving or getting worse. I guess that the scans are a good trade off.

I am glad you have refused chemotherapy because it has some really nasty side effects. I am glad your Oncologist has you on something else. I wish you the best. Hang in there with the rest of us. Apparently there are new meds coming out again soon. There is a doctor, I think he is a doctor - a medical oncologist, who is involved in some trials related to RLT (not sure what that stands for). He said there is cutting edge new cancer treatment on the horizon. It has something to do with molecular imaging and treatments with radio pharmaceuticals. You might ask your doctor about this. I am not sure it relates to us but it does sound like it is something to look forward to.

Thank you Barb. Hugs Marlene

Hi Marlene

I hope you’re right about new drugs on the horizon for us ladies that also don’t have severe side effects...it’s about time something happened

I remember when I had my initial cancer 26 years ago and my oncologist at that time said I wouldn’t have to worry after 15 years as cancer wouldn’t come back and anyway there’d be a cure by then

Wrong on both counts!!!

All the best

Barb xx

Marlene I'm sorry you are frustrated with your oncologist. From reading what you have posted though it appears to me that she is just covering all aspects of your care. Not taking bone strengthening drugs when you have bone mets and higher than normal serum calcium is in my opinion a very bad decision. Your calcium in your blood stream does not need to be grossly elevated in order to potentially cause some serious side effects, not to mention if it is elevated that means the cancer is leaching the calcium out of your bones to cause the increased serum level thus weakening your bones. Your oncologist is not using scare tactics when she mentions the potential of hypercalcemia that could kill you. This is a fact. I had elevated calcium when I was diagnosed and as a nurse I know that is bad as does my oncologist so I went straight from my first appointment with her to get my first Zometa infusion. I've been getting them every 3 months since. As Barb said the benefits of taking the drug(whether its Zometa or Xgeva) by far outweighs the risk of getting ONJ.

A bronchoscopy does not cause you to have a constant cough when you had the procedure almost a year ago. There has to be another cause. Finally the amount of radiation that we receive with getting scans every 3 months is insignificant with the fact that we have MBC. It is a life time accumulation that counts and as all of us will have shortened lives it is not something I would personally stress myself out over. If you have active disease and don't have regular scans to check for progression and the cancer gets a bigger hold that is not something I'm willing to gamble with.

I think you are letting information you read and research on the web guide your thoughts too much and some of what you have posted is not from a sound knowledge base of the consequences. Of course we all make our own decisions but they should be well informed ones. A number of years ago a diagnosis of MBC was a death sentence as people died of fractures. This was before the introduction of bone strengthening drugs to prevent skeletal complications. I'm sorry if my post offends you as I am so blunt but my thoughts are evidence based and I hope you discuss things more without your oncologist who in my mind is trying to do what's best for you.

Sandra

viennagirl
viennagirl
in reply to girlsptz

Hi Sandra, I appreciate your honesty and I am going to think it all over very carefully. I will wait, at least until I know if my blood calcium level comes down to make a decision.

I read on line that not drinking enough water can bring the calcium level up. So I am now trying to be more hydrated.

My main Oncologist - that I communicate with every three months, said she would keep testing the calcium level so by next month I should know more. I would just like to know for sure that this is the only way to strengthen my bones. The cough I am experiencing came after my bronchoscopy. I was told I would cough but that it would go away. It has never really gone away. My doctors know about it but never suggest any type of treatment. So that makes me suspicious. I was told by one of my Oncologists, the one I see every month to check my blood to see if I can continue with the Ibrance, that he saw my scans and said that I had nothing to concern myself about. He said that I was doing very well. Then on the very next day my main Oncologist telephones me and tells me that my blood calcium level is slightly elevated. So this also makes my trust level feel very uncertain. She also said that my tumors were shrinking. I guess I will be confused until I know more about the calcium levels. Thank you again for your honest answer to my worries. Hugs Marlene

I had the same questions as Marlene and your sensible answers from a nurse prospective is so sensible and reassuring. Thank you. Madlyn

Beryl71
Beryl71
in reply to girlsptz

I like your advice. I am only two months into treatment and my oncologist suggested I might need bone strengthening treatment at some time. Although since I started treatment my dreadful pains in my hip and back have gone and so has my cough. Given my cancer markers have decreased already , it feels positive. I am happy to have any scans to know what's going on. Without that I would not have been diagnosed and I know they plan regular follow ups.

I had loads of radiotherapy with my initial cancer 26 years ago and have lived healthily for all that time so radiation doesn't bother me.

I just want the best chance.

viennagirl
viennagirl
in reply to Beryl71

Thank you for your response to my concerns. I am taking in all your comments and it will help me with my future decisions. Hugs Marlene

I have ct scans every three months on my body and every six months including my skull. My body scans are also every 6 months. Realistically it is the only way to check.

viennagirl
viennagirl
in reply to Sarcie

I don't mind the scans all that much but want to make sure they are necessary and helpful. So far they have given me lots of hope. I have had a full body scan and CT scan every three months for the past year. It has helped the doctor to know how my drugs are working. And it has raised my spirits. But, so far, I continue to improve with each scan and that is why I am wondering if the scans could be less frequent. I will soon have a new Oncologist and can discuss this subject with him/her. Thank you Sarcie. Hugs Marlene

Sarcie
Sarcie
in reply to viennagirl

I think that the scans are necessary to ensure they catch anything should it change. Good luck with the new oncologist.

Just want to add a little to all this good support and advice. I also suggest that you reconsider taking a bone strengthener like Xgeva or Zometa. In addition to the risk posed by bone metastases, taking Letrozole can lead to bone loss too. I recently watched a talk by an oncologist about bone metastases and he said that the risk of jaw necrosis is very low, and occurs primarily with patients who have invasive dental work. He did recommend not having things like an extraction or root canal done within a month of having one of these drugs. You also don't have to take them as often as some doctors prescribe. I have lots of bone mets but have only been getting Xgeva shots once every 3 months since Nov 2017. Thankfully no fractures and no more bone pain.

I get CT scans every 3-6 months but bone scans less often because they really didn't provide any more information than the CT did, at least on the reports. I also realized recently that the "reports" aren't necessarily very thorough. The last radiologist's report noted that my liver mets were "stable" but when I actually looked at the CT with my oncologist she showed me how they are shrinking. I like that much better!

I hope you can find a better fit for an oncologist. We literally put our lives in their hands and you deserve to have one who will take the time to listen to you and communicate clearly.

viennagirl
viennagirl
in reply to MacroMom

Hi MacroMom,

Thank you for mentioning those drugs. I made a note of the names.

When I asked my oncologist if there was any other type of bone strengthening drug that I could take that didn't carry the risk of necrosis of the jaw she told me that there was but that it wasn't available for me. Apparently our medical system or the Cancer Agency won't pay for them. I had such a bad visit with my Oncologist last week that I contacted her nurse and as a result of a very in depth discussion about my feelings she has now started the ball rolling for me to have another Oncologist take over my case. I am relieved because I have had such bad experiences with my current Onc and only hope I can get someone more respectful of my feelings and with some empathy. My fingers are now crossed. Hugs Marlene

MacroMom
MacroMom
in reply to viennagirl

Hi Marlene; I'm so glad to hear this! Good for you for speaking up, and good for the nurse for really listening. Hoping you have much better communication with your next oncologist. It's almost like getting a second opinion too, each onc has different experiences and areas of expertise. Keep us posted!

Patty

viennagirl
viennagirl
in reply to MacroMom

Thank you Patty. Yes, I will be posting my news when I get my new doctor.

I have MBC in my bone marrow- is that where you have it? I’ve been on a bone strengthening drug - Xgeva- for a year and I haven’t had any side effects from it that I know of. I look at it as something that is helping me since the other drugs and cancer are weakening my bones. I would have scans 3-4 months apart in the beginning (I was diagnosed a year ago) and now they are spread out to every 5-6 months. I think the radiation isn’t great but how else are you to know if the cancer is spreading or getting better? It’s a catch 22 but if you don’t want to have them so frequently tell her you don’t. It’s hard enough to have to be going through this and to also not like your doctor is extremely frustrating. Good luck. ❤️

Hi SunshineBoss,

It is good news that you are doing well with Xgeva drugs. I am sure you will remain well after all this time on it. If it was going to affect your jaw you would know by now I am sure. However, I am sad to hear that your cancer is in your bone marrow. But there are so many new drugs and treatments now and more coming in the future that you will also get drugs that really help you heal. In Dr. William Li's book EAT TO BEAT CANCER, he talks about stem cells and how to encourage healing and new growth of the stem cells. You might find his talks interesting. I have his book and love it. Since following his advice my neutrophil levels are much better. I think you can find Dr. Li on YouTube.

I was also diagnosed a year ago for MBC. Three years before that diagnosis I had a lumpectomy that seemed to be very successful. There didn't appear to be any spread. But the tumor in my breast had hemorraged so I am not all that surprised that some microscopic cells escaped and got into my blood stream and metastasized.

I don't have any cancer in my bone marrow but it is in my bones - sort of scattered here and there - in my hip, my other breast, my head and in my rib cage. Also a couple of nodules in my lungs that never change and might actually not be cancer. But my Oncologist watches them. I did have a bit of infection in my lungs that showed up on my scans recently but I have not been advised to take anything for that.. I have a main Oncologist who I see or see (lately my visits with the Onc. is on a television screen). That conference happens every three months and comes after I have my full body scan and CAT scan. She is the main doctor who determines my care and how I will be treated. Then monthly I see another Oncologist who is closer to where I live who takes my blood pressure, temperature etc. and does blood tests to check my neutrophils. He then orders a new batch of Letrozole and Ibrance. So they make sure my blood is good and then I go back on my 28 day treatment. I always have a pleasant visit with that Oncologist. But he isn't as qualified I don't think as my current Onc. I contacted her nurse to discuss my feelings and now I am on the way to having a new Oncologist. It is a big relief to know I don't have to talk to her anymore. I feel sad about having to change doctors but I think I should have a doctor I feel somewhat comfortable discussing how I feel. I do feel reasonably well most of the time but I do get down sometimes especially after talking to my main Oncologist. I will also be seeing a counsellor to help me with my sadness. I think I have tried very hard to work with my current, main Oncologist but she will not cheer me along at all. Always focuses on negative things and tries to scare me. I refuse to do the drugs that have necrosis of the jaw but I do all the other things she recommends. I do feel I have the right to refuse certain drugs. I don't want to be completely at the mercy of the medical system without any say in my care whatsoever. I believe I should have my rights respected. The Oncologist that I see monthly is a much easier person to talk to but he isn't in charge of my treatment. He only monitors my blood.

One of my drug related side effects is that I cough quite a bit and the origin of that cough goes back to a bronchoscopy I had done almost a year ago. After that bronchoscopy - which did confirm - cancer in a lymph node between my breasts - I was left with a cough. I was told that it would go away. But it comes and goes now but never quite clears up. My Onc has never expressed any concerns or paid any attention to that subject when I bring it up.

I very interested that your Oncologist has let you have your scans less frequently. I am waiting to hear from my new Oncologist. And hopefully will discuss that with him/her.

Hugs Marlene.

Hi Marlene,

So sorry you are losing confidence in your oncologist. It’s so important we have a good relationship with them. As others have indicated, I’d seek an alternative with whom you feel more comfortable.

I was diagnosed with stage lV MBC a year ago last week and am normally on ibrance and Letrozole with Zometa infusions every month. I too have bone and ct scans every 3-4 months. So far I have been “stable”.

I consider these scans an essential part of our treatment in 1) seeing if meds are working and 2) if and where new metastases are located. I’ve also been told they are not too frequent and not dangerous.

As I also have osteopenia, and my major metastasis is in my spine, I’m happy to have the Zometa infusions and have had no ill side effects. Apparently I will now be having them every three months.

If you read about all the potential and horrible side effects of these drugs and take them too much to heart, one would never agree to be on them! I’ve always thought the pharmaceutical companies are covering their butts by listing all possible side effects as they must, but haven’t heard too many in this group or outside complaining about having them all.

Since Covid-19, mid-March I was taken off ibrance (to keep my immune system in tact) and told I wouldn’t be having the infusions as clinic admittance was only for urgent and essential procedures. I’ll be having my first infusion since February this coming Monday as some Covid based restrictions are being lifted in California.

Hope you will soon find an alternative doc and start feeling good about your treatment. Having a positive attitude is so important as we navigate the MBC world.

All best to you!

Kathleen

Beryl71
Beryl71
in reply to Red1246

That's interesting. My diagnosis and treatment started during lockdown and they put me on letrozole and ibrance rather than a chemo infusion because it would be safer under the circumstances. They did tell me to be very careful though. I'm in the UK.

Red1246
Red1246
in reply to Beryl71

That is interesting, Beryl. It’s not the first time there’s a contradiction in oncologists’ treatments that I’ve read here.

Very few seem to feel the same about any one thing. Is that why they refer to “practicing” medicine I wonder? I think there are many unknowns - even to them and they are all doing what they think is best. I see my onco tomorrow and will tell her you began during the pandemic and see what she says.

Take care and all best,

Kathleen

Beryl71
Beryl71
in reply to Red1246

Yes I was a bit concerned but grateful they dealt with it so urgently. They described their findings as 'scattered but not substantial 'so I imagine they wanted to stop it moving around any further as quickly as possible. I was advised to shield in my home until the end of June. But I have been out for a walk and of course to the hospital for blood tests. And recently have invited friends into my garden. So have not had any close contact with anyone since I started meds.

Red1246
Red1246
in reply to Beryl71

Hi !

I mentioned to my oncologist yesterday that you began ibrance during the pandemic. She reminded me how very different we all are and that our individual cancers dictate the treatment. She says I can take it again in August.

Hope you’ll do well on your treatment plan.

Sending hugs, Kathleen

Hi Marlene

I was diagnosed de novo 18 months ago with mets to my bones and with hypercalcemia (amongst other things). I am on Ibrance, Letrozole and was having monthly zometa infusions until covid19 hit. I have remained on the meds as they have been delivered to me at home (I am shielding) but I have not had zometa since February and my bone pain has started to return. My oncologist has booked me in for an infusion next month which I am relieved about. My last bone scans were in January and they have also been delayed as Covid patience use the same scanners. I am nervous about not having had a scan for five months but feel okay. I have been told that if things change I will be able to get a scan. My point is, as some of the other women here have pointed out, this treatment works and helps us feel well. I recently learned from my oncologist that the NHS guidelines for having zometa is to have it administered monthly for two years then swap to every three months after that. I had always wondered why some patients received there infusions at the different intervals. I for one feel so much better at this point than I did at diagnosis. This would not be possible if it weren’t for these amazing drugs. No one wants to have to take them but no one wants to have secondary breast cancer either. There are also other things you may feel will help like exercise, diet etc. If you have an oncologist you can trust you will feel more confident so do investigate the option to change. In the UK you are entitled to get a second opinion and any oncologist worth their salt would not object.

All the best.

Actually Zometa itself can be given every 3 months from the beginning with excellent efficacy. The literature supporting giving it monthly for a number of months or years is no longer standard of care. There are numerous scientific reports that support this. Of course it is always up to the discretion of each oncologist but I would personally question the need for monthly Zometa. Xgeva is newer and there is a scientific study underway in Spain as to whether it can also be given every 3 months as opposed to monthly and the early data show that it is but it won't be published for probably a year yet so oncologists tend to stick with monthly on Xgeva.

Sandra

SophSP
SophSP
in reply to girlsptz

Hi Sandra,

That has been my experience with zometa too. I have been having it every 12 weeks right from the get go. I'm glad, as I wouldn't want to have to keep going backwards and forwards to the hospital every month, along with more regular blood tests, if it is just as beneficial as monthly infusions.

Sophie

Sandra, thank you for this. As time goes on I have dreaded that needle into the back of my hand more and more each time. I have now gone five months without getting a zometa infusion (due to Covid) so I will ask to change to having it every three months once normal treatment resume. A while ago I did ask my onc if I could change from Zometa but it was not an option (NHS). I really value the medical information you bring to this forum which I have been reading regularly from the shadows. ☺️

Hi Stardust I went a whole year without zometa after receiving it every three months for a couple of years. I asked my doctor how necessary that was and she seemed to think I would be okay without it for a while. There are still lots of things they don't understand about it. But I did have some slight progression in my sternum recently so I had an infusion. I'm not sure if I'm going to get another one in three months or not because I have a tooth that needs attention. And I am on a clinical trial right now which is very interesting so it's up in the air. The only other bit of advice I would give to anyone reading is take care of your teeth because if you ever have chemo they don't want you to have invasive procedures done when you're on zometa

Hi Wolverine19

It is good to get your input into this. I often think this group of women have a collective wealth of knowledge through first hand experience. As a result I feel more confident in tackling secondary BC. I was initially nervous about developing necrosis of the jaw so decided to have a milk tooth pulled. I was missing the adult tooth so never lost the milk tooth. Although it was okay I wanted to avoid trouble further down the line so had it extracted. I didn’t have any issues. My understanding is that Zometa accumulates in our systems over time so having treatment early was less of a risk. I wish you all the best on the clinical trial.

Hi Stardust1965. It is good that the zometa helps you with bone pain. I have rarely ever felt bone pain so maybe that is a good sign. But if the bone strengthening drug helps you with pain then I think it is very good you have something that helps. We are all on such a mystery tour when it comes to all these drugs. When you find something that helps you and is working you have to be so happy about that.

I am not sure what I will do with respect to the bone strengthening drugs in the future but for now I am saying 'no'. I am stubborn I guess.

Hugs Marlene

Hi Marlene

To be honest I am not sure that it is entirely the Zometa alone that keeps the pain in check. The pain I was suffering before diagnosis and before starting Ibrance and Letrozole was hideous and has mostly gone. The meds aren’t without their issues as we all know so well. Letrozole makes my joins ache especially my knees and hands and Ibrance affects my neutrophils so I am now on the lowest dose of 75 but that seems to be working for me. My understanding is that Zometa helps to reduce calcium levels in the blood and also helps with reducing the risk of fractures. (I am simplifying but on this forum you can find more detailed explanations). I have always had back pain unrelated to mets so when my back fractured and scans were taken that is when I was diagnosed with MBC. So I am no stranger to pack pain. In the last few days my back “went” again and I have experienced that dreadful excruciating pain. Whether or not it is a coincidence that it is related to me not having had Zometa for five months remains to be seen. But it is strange that I haven’t had my back “go” since I first started taking the drugs. The pain may last a few days or much longer but it has made me so grateful to normally not to be in that constant state of pain and struggling with putting on my knickers!

Looking at the longer picture I feel I am at greater risk of pain by not taking Zometa. But we can only make the best decision for ourselves as we are all individuals. You may feel differently once you feel properly supported by an oncologist you trust. You have taken the first steps by asking for an alternative onc. It’s not easy navigating MBC but by being our own advocates we are taking back a bit of control that is denied us by this disease.

Good luck with the new oncologist and let us know how you get on.

Thank you Stardust. It is good to hear that Zometa helps you with pain. There is nothing worse than pain. I did have horrendous back pain last year when I was diagnosed with five fractures in my back. It is a long story but I will try to condense it. Not easy for me...heh..heh....

Anyway, here goes: I went to a chiropractor with a pain in my side last year and after about 5 chiro treatments I ended up in the emergency with in credible pain which turned out to be 5 rib fractures - all from the intensive chiro treatments, I suspect. My x-rays taken before the chiropractor treatments didn't show any fractures and he was working on correcting a couple of problems - like disc problems - but nothing serious. But I didn't get too mad at the chiropractor because the fractures resulted in them discovering my mbc and my osteoporosis. That discovery may have saved my life. But lately I am not in any pain and I think it is because of my diet and because the Letrozole and the Ibrance drugs are helping me. I am reading a good book right now on how to starve cancer. I don't know if I will follow the guidelines in the book but I am fascinated and might learn something that I can adapt to my current treatments. Hugs Marlene

Hi Marlene,

I hope you feel better about things today and have had a chance to think over what the other ladies and I have suggested. I agree with Sandra that you need to make an informed decision once you are in possession of the facts. Those facts need to be founded on solid medical evidence rather than what you may have read on the internet. When we are given pamphlets with all the possible side effects that does not mean to say that we will experience them all. Sometimes it's just one or two, and even then it may be temporary.

For example, you mentioned that you are worried about the risk of osteonecrosis. Even though it is listed as a possible side effect of bisphosphonates, like zometa, it is rare. When our oncologists are weighing up all of our treatment options they will be looking at offering us a treatment that they believe is in our best interests. I have not had any trouble with my bones since starting zometa, just a few aches and pains sometimes when I first get up which goes away once I get moving. I have infusions every 12 weeks to help strengthen my bones. I am grateful for this drug, as it has been protecting my bones. Aromatase inhibitors, such as letrozole, can weaken the bones and lead to fractures, so that's why bisphosphonates are prescribed to breast cancer patients. I want to do all I can to protect my bones from fractures. Years ago, these drugs were not available.

I know that you do not have a good relationship with your oncologist, which must make it harder to accept anything she has to say. If you cannot change oncologists I would try to look at her reasoning behind what she has to say and why she wants you to accept a course of treatment. I was thinking about what you said and her forceful approach may just be her way of trying to get you to see the seriousness of your situation and how following her advice can help you. When I first met my oncologist I found her bedside manner virtually non-existent and I did not find it easy to warm to her. Now, two years in I really like and respect her and would not want to change oncologists. She is an excellent clinician and always seems so happy when she delivers good news. It feels like she is sharing in my joy.

As for the scans, I believe they are beneficial. I used to have them every three months, but my oncologist is now allowing me to have them every four months. She did suggest leaving it for six months as I am doing so well, but I didn't want to wait that long for the next one. Scans will show if treatment is working, if there are any new areas of concern or if there is progression. Without regular scans it would not be so easy to monitor a patient's progress. So if a treatment stopped working, you wouldn't know without a scan.

I hope you are able to really think things through and have an honest discussion with your oncologist about her suggestions. I would write down a list of questions and concerns that you have. Remember, she will have the answers to your medical questions and be able to advise you. Please update us with how you get on.

Sophie

viennagirl
viennagirl
in reply to SophSP

Hi Soph,

Thank you for your heart felt concerns for my situation.

I talked this scary situation over with my daughter who told me to slow down and do some more serious investigation it the whole subject. So I am trying to look more deeply into this. My daughter suggested seeing an Integrative Naturopathic doctor and asking for advice and asking her/ him if there are natural ways to strengthen bones and if the calcium level in my blood is dangerous. Or at what point it becomes dangerous. I want to know if there are ways to reduce the calcium level naturally. I know these two types of medical doctors clash and have different perspectives on how to treat diseases but I would liketo have a well-rounded understanding of the whole subject.

The necrosis of the jaw is actually not a rare occurrence according to both my Oncologists. It occurs in 1 out of every 100 cases. That is just too risky for me so I am very reluctant to take that drug. I am 77 years old and that would just be the final straw for me if my jaw started to rot. I couldn't cope with it physically and emotionally. That is why I have been saying NO to the drug.

My main Oncologist who controls my treatment plan is almost impossible to have a discussion with so I cannot get any more information from her. She is young and just works out of the medical books she studied at University. So I have to look to someone else for help with my worries. I think I will talk to her nurse and my other Oncologist as well to try to get perspective on this. And I might have to try to get another Oncologist. Having to deal with this one for the rest of my life makes me just shake with anger. I want my good results celebrated with me. I do want honesty but I also want compassion and understanding. I don't feel there is any excuse for not providing that. Where I live it is so hard to get another doctor I am not sure I will even be able to get anyone.

I will let you know what I decide and what I am doing. We can all benefit from each others experiences and journey.

I do follow my Letrozole Ibrance regime religiously and I have a rich, healthy mostly vegetarian diet. And I feel quite good physically. My blood level relating to the neutrophils went from 100 to 103 this last blood test. That is obviously an encouraging sign and my tumors do seem to be slightly shrinking - especially the ones in my bones. So I feel I am doing quite well in general.

Take care of yourself and thank you so much again for your advice. Hugs Marlene

SophSP
SophSP
in reply to viennagirl

Hi Marlene,

It is so difficult to know what to do for the best sometimes. I take an integrative approach to my health care. I accept the standard of care treatment my oncologist has prescribed, but I also follow the advice of my integrative doctor by taking additional supplements and off-label drugs. He works with my standard of care treatment and has never told me to stop a certain treatment. I would be wary of a doctor who said to stop hormone therapy, targeted therapy, chemotherapy etc and go a completely natural route. I believe that standard cancer treatments are very beneficial, so I would recommend taking on board what your oncologist has to say. Some patients have sadly given up on standard of care treatment and they have suffered for it.

Of course, it is up to you to decide which treatments you are willing to accept. But I would just carefully consider the risks versus the benefits. If you choose to see a naturopathic doctor, I would be careful and do your homework. I believe in taking an integrative approach, rather than just one, but that is my choice. I don't know of any natural ways to boost bone health other than regular exercise and eating more cruciferous vegetables. But I'm not sure if that is enough to address the calcium issue you mentioned. That is where bisphosphonates can help.

You might also want to ask your oncologist if she would recommend a supplement. Mine prescribed Adcal D3 (calcium carbonate and vitamin D3) right off the bat and I also take a vitamin D3+K2 spray for better absorption. My focus is on improving my bone health and preventing fractures. I hope you can achieve that too. I have also been told to try and avoid carrying anything that's heavy. I am a bit naughty sometimes and try to carry too many shopping bags at once!

Your diet sounds very healthy and it seems that it is really helping. It's also good news that your tumours are shrinking! My last radiology report showed that my breast tumour can no longer be readily seen on the scans. It was a large tumour too, so I am pleased it has shrunk so much! I am on letrozole too, but not ibrance.

Anyway, I'd best get going. I need to get to work.

Sophie

viennagirl
viennagirl
in reply to SophSP

Thank you Sophie. I really appreciate your advice.

I definitely will be discussing this drug with my new Oncologist and try to get to a place where I feel safe with taking a biphosphanate. I just feel my age is a factor. I am 77 years old and think it is just too dangerous to keep adding drugs to my body. I think we are more vulnerable to things going sideways when we are older. I did watch Dr. Darren Schmidt's video on line and he is very against those types of drugs. I don't believe everything I see on line but he made sense to me. Since following some of his advice my blood mets have improved so I do have some trust in what he is saying.

But, like I said, I will be talking about this with my new doctor. I just have to hope he or she are less aggressive with me and willing to go into explanations that make sense to me. My current Oncologist did tell me to ask my dentist about whether I could take the drug when I first started the Letrozole/Ibrance treatments. So I did ask my dentist and he said "don't take those kind of drugs". I recently told her what my dentist said and she got really mad. That is what makes me fear her. I don't find her reasonable. I think she should respect my dentist's advice. He obviously has seen things go wrong with women taking the drug. The risks are reasonably high. One in every 100 people get the necrosis of the jaw. That seems to be bad odds for me.

However, I am somewhat comforted knowing that so many of you ladies taking those bone strengthening drugs are doing well on them. So I will discuss this further with my new doctor and trying to get a better understanding of how the drug works. I will mention the Zometa drug you and others are on.

My spirits are much improved. I am just so relieved to not have to see my current Oncologist any more. I like my other oncologists - the ones I see once a month. There are two of them at the cancer clinic and they don't cause me any anxiety. They just monitor my blood levels, take my blood pressure etc. If my blood neutrophils are at 100 or better they then approve the next cycle of Ibrance/Letrozole drugs. They are much easier to talk to but I didn't want to complain to them about my main Oncologist. It didn't seem right - but now I will have to let them know.

Hugs Marlene

SophSP
SophSP
in reply to viennagirl

Hi Marlene,

I imagine the relief is immense now that you know you will not be dealing with that oncologist again. It must have been hard seeing her and dreading each consultation. While she probably had your best interests at heart, she should have been more sensitive to your feelings. I wish you well with your new oncologist. I hope you will get along and have a better working relationship with one another.

Sophie

Oh dear, you are having problems. I was diagnosed with MBC in 2013. I know what it is like to not trust your doctor. This will be a lengthy answer.

It leaves you floating in a very technical world trying to make the right decisions and find some help in research. Impossible as Cancer in general and even MBC is very involved.

Therein lies the problem.

If you do research for yourself you should only go to the two recognized web sites in the world. They are John Hopkins and Mayo. There is one other option and that is your National Cancer Society. Usually there is a 1-800 number to call and talk to a nurse and they can advise you.

I know all this because I was in the same situation as you. I have a new oncologist who is young and to my thinking totally inadequate. I felt she didn't have a good rapport with her nurse. So important that they are a team. For a long time I wasn't sure which one was the bigger problem as I had issues with both.

I knew she was at least consulting other oncologists for answers. I hope your oncologist can do the same. Anyhow, I went for a second opinion and told my oncologist about it. After that she seemed to really come through for me. I now trust her more. She really is trying to find the right answers for me. It does sound like your doctor is doing the same. I think she is pushing you because she knows you question everything. That is good but just be sure to get correct information.

I have been on Zometa since 2013 and no problems. Everyone here is on it . It is very important to take this. I haven't read of anyone with jaw problems.

I had the same question about the radiation from the scans and was told that the amount we receive is very small and not dangerous.

Hope this helps. Relax, we've got this! We will be ok. At least for awhile. It is a roller coaster waiting for scan results, etc. but you will find great support here.

Cheers, June S.

viennagirl
viennagirl
in reply to 8576

Thank you June for your kind and thoughtful response to my concerns. It sounds like Zometa is working for many of you ladies. I asked my Oncologist if there was anything else I could take that didn't have such serious risks and she said that there was nothing my medical system would pay for. I will let you know what I learn from this experience. I am very happy to hear that you got a second opinion and it helped you deal with your current Oncologist. Take care and thank you again. Hugs Marlene

8576
8576
in reply to viennagirl

You are welcome Marlene. You are right. In the end all decisions are yours. I applaud doing all the research and looking for alternatives. I am not sure about my Oncologist yet but she seems to be going the distance for me. That I appreciate. I am contemplating a move to a new area and so will likely be changing doctors anyhow.

Wishing you all the best.

Cheers, June S.

viennagirl
viennagirl
in reply to 8576

I wish you the best with your new Oncologist. Hope you are moving to somewhere nice. Most Oncologists are quite nice people so you should be happy with your new doctor.

I don't think any of us should put up with a doctor that is arrogant and rude. I am so relieved that my discussion with the Oncology nurse at the Cancer Agency the other morning resulted in her being sympathetic and supportive. Her kind response to my concerns has resulted in me being able to have another doctor. Yeah! However, they warned me it might take some time to get a new doctor. I do hope it is soon because my current Oncologist, who is never very nice to me, is probably hopping mad at me right now. I just think she is too young to be aware how much suffering and fear goes into person who are diagnosed with cancer. Only very empathetic people should be in this profession. I will also be seeing a counsellor who might be able to calm me down and help me stay confident about my chances of surviving for a long time. Our modern drugs do give us much more time and I am so grateful for that. Most of us just want some more wonderful time to be with our loved ones. I feel that the drugs that I am taking are giving me that time. I do get sad but I am basically an optimistic person. But I have some sad history to deal with and a counsellor might help me deal with some of that. The pundits safe that people who are ill but get some grief counselling do better than people who don't deal with past sorrows.

My discussions with all you wonderful ladies gave me to the courage to contact the Oncology nurse and describe how I was feeling. It has resulted in such a positive outcome. I wish you the best future.

Take Care. Hugs Marlene

8576
8576
in reply to viennagirl

Thanks Marlene. Glad you have found some help. I find, also, that this forum is so great for support and information. We are fortunate to have Sandra on here as well as her professional opinion often helps so much. Great when she puts on her nurse's hat! I don't know when I will get to move but I hope sooner than later. Stairs are a challenge for both my husband and me.

Cheers, June S.

viennagirl
viennagirl
in reply to 8576

Thank you June. It does comfort me to hear that you take Zometa and feel okay on it. I am happy that I stood up for myself. I do hope my new onc. is easier to communciate with. I feel like a ton of bricks has lifted off of me knowing I won't have to see her again. I appreciate all the good advice I get from you ladies who take that drug. Hugs Marlene

I have stage IV and been on the bone strengthening for 4 yrs now. Injection every 3 months. Jaw problem isn’t that common and it’s sensible to take it but I get your concern.

I would definitely ask to move to a different consultant. Talk to your triage nurses and see what they can arrange for you.

I always take someone with me and openly record the conversations via phone. This allows me to revisit what has been said and cross reference stuff. However I do alternative as well and have used a molecular biologist to go deep into the science of my condition. I now have a lot more knowledge and am managing it all well.

Next step is to go to off label drugs and a protocol that has been successful in terms of removing tumours and putting it into long term remission.

If you need some info on stuff then let me know.

Best

Dawn

viennagirl
viennagirl
in reply to blacksuz

Thank you Dawn. I will start out by talking to her nurse and finding out if there is a way to talk to another Oncologist. I am interested in what you are doing but it sounds like you are getting a lot of help that is likely expensive. I don't have too much money so have to rely on my medical to pay for my drugs. Do you have to pay for the molecular biologist? What do you mean by LABEL DRUGS? i am interested in what you are doing. Does this mean you are going off all your drugs and doing something entirely different? Hugs Marlene

blacksuz
blacksuz
in reply to viennagirl

Hi Marlene, yes I have to pay for Molecular Biologist. It was very cheap considering what I got. Off label drugs are older drugs like metformin that can be used to block the pathways that cancer takes. The idea is to block all pathways to eventually kill off the cancer. I still take conventional but conventional only holds it back and doesn’t really tackle the route cause or eliminate the source. My protocol will attempt to block all pathways and eventually eliminate. People have managed to put themselves into remission for 20yrs plus, so have been termed as cured. Email me dawnbsuz@gmail.com and I can give you the steps and costs. Dawn x

Hi Dawn,

I am reading a book called How To Starve Cancer, by Jane McLelland. It discusses off label drugs. It is a very interesting book and I just started reading it. The author said she cured her cancer using conventional medicine along side of molecular medicine. I think I now do understand what you mean about Off Label Drugs. I will let you know what I think of her methods if I find them useful. The first thing she did was give up sugar. And I think that is a step in the right direction.

I sent you an email. Did you get it? Hugs Marlene

AuntC
AuntC
in reply to blacksuz

Are you getting Xgeva for your bones every 3 months? I was getting Zometa but go. t really sick after my 3rd infusion. Now my onc is going to change me to Xgeva if I can get financial help, the co-pay is very high. If I understood him I would get an injection every 4 weeks.

My onc has me on a 3mth. scan schedule too. I do worry about the radiation too. I think most ladies here are.

I do however feel badly about how badly it sounds like your onc deals with you.

We need to trust and talk to our oncs about everything and be treated with respect and empathy.

I would speak with her and lay it on the line how you feel. I know you said it's hard to find another doctor, but it may be worth even switching facilities if need be.

I am learning the there are oncs and aprns who should not be working with cancer patients. It takes special people.My onc recently left to do research. I will meet my new onc on Wednesday. We will see how that goes!

I also agree with Sophie's suggestion about bringing someone with you, if you could.

girlsptz
girlsptz
in reply to mariootsi

Marianne hope your visit with your new oncologist went well and that you feel comfortable with them. I know I would be devastated to have to change mine but things happen. Take care.

Sandra

mariootsi
mariootsi
in reply to girlsptz

Sandra, my daughter came with me and we both liked her very much. I was so relieved. She is easy to talk to and we both felt very comfortable. Thank God! We are hard to please when it comes to doctors. She passed the test!

SophSP
SophSP
in reply to mariootsi

Hi Marianne,

I'm glad you gelled with your new oncologist. It is so important to feel a connection with them. I don't expect my oncologist to be my best friend. But I do want to know she is on my side and fighting my corner.

Sophie

mariootsi
mariootsi
in reply to SophSP

I definitely got that message from her.

SophSP
SophSP
in reply to mariootsi

That's good! She sounds lovely.

mariootsi
mariootsi
in reply to SophSP

Yes, I'm so grateful.

So glad you and your daughter both liked your new onc ...I have been happy with mine ... she is a strong character, ( I would guess in her forties ) , very down to earth , sometimes with colourful language ! , but very frank , yet always supportive . x

That's the type of onc we all need.

girlsptz
girlsptz
in reply to mariootsi

Excellent news Marianne that you and your daughter felt a connection and was comfortable with her. That's a big load off your mind. Take care.

Sandra

mariootsi
mariootsi
in reply to girlsptz

It really is a load off my mind. God knows I need to lessen my mind load.

I hope your new oncologist is a caring, empathetic doctor. The best of luck. Hugs Marlene

Thank you so much, Marlene.

Hi Vienna!

I know what it’s like to feel like u are talking to a wall! Lol! First question...I asked for my scans to be moved to 6 months...Your bone mets come up on the CT scan. So unless u have them in your legs or on your skull like I do then they are included on the CT...

I’ve take both XGeva and Zometa. My Ca level went from 9.6 to 10.2 on XGeva. That was 2 years ago. I’m back on Zometa. ( I take frequent breaks for 3-4 months) It’s back down to 9.7... It was 9.6 when we started...Not sure why 🤷‍♀️ But my Ca level goes up on this stuff...

Hi Rhwright12,

Thank you for sharing your information with me. I do have one small tumor in my skull so that is why I get the full body scan . The CAT scan is usually just of my body. I have one tumor in my hip. Most of the rest are in my ribs although one tumor is in my lymph node between my breasts. I will soon have a new Oncologist so I can discuss the scans with him or her. And if he or she wants to continue the 3 month scans I won't argue.

My doctor said my calcium level was 6.5 which she said was elevated. It doesn't sound all that high to me. But she was very concerned about it. And described to me the worst case scenarios if it continues to rise and I don't take the bone strengthener drug. I resented being given that much fear. I have also learned that staying very hydrated helps bring the level calcium level down. My daughter also read somewhere that it helps to reduce salt in take. So I am doing both now. I read somewhere that green tea dehydrates the body and I was drinking lots of green tea so that might raise the calcium level. I was also taking a lot of added calcium to my diet. I was grinding up organic egg shells and adding them to my smoothies. I might have over done it. Back to the subject of fluids: Apparently, black tea doesn't dehydrate the body and it is good for cancer patients. But I am mostly just adding more water and juice to my diet.

I am still very terrified of the drugs that cause necrosis of the jaw. There has to be something else. I will keep looking. There is a doctor on line who said bone broth and organic meats boiled for a long time with the bones and fat are also very good to help rebuild lost bone. His name is Dr. Darren Schmidt. Of course they tell us to not pay any attention to anything we watch on the TV or computer. Hmmmm???? Someone did say that we should only feel good about information that comes from reputable places like the Mayo Clinic etc. I think that is good advice too.

Hugs Marlene

Look into AlgaeCal...it’s outta Canada 🇨🇦...I’ve taken it for about 1 1/2 and it has improved my bone density...😀 It’s their go-to for osteoporosis there...I do a generic form here in US with organic Calcium and Strontium pills...

Thank you. I will look into taking AlgaeCal. Not sure why I got osteoporosis in the first place because in the past I was a big dairy, milk and cheese consumer. Now I drink rice, soy and almond milk because I have read that cow's milk isn't good. It certainly wasn't good for me or it didn't save me from osteoporosis. However, I also have Hashimotos hypothyroidism which might be playing a role. My god the body is complicated. It is hard to figure out what to do. But I appreciate you telling me about AlgaeCal. I am certainly interested in trying it at some point in the near future.

I obviously need to find a way to get calcium into my bones to protect them from further damage. I have seen AllgaeCal advertised on line. But wonder if I should take it right now. I am still doing bone broth because it is not high in calcium but is supposed to be good for building bones. A complicating factor is that my blood calcium level is slightly elevated right now according to my Oncologist (she is the one that wants me to take biphosphanates to strengthen my bones). She told me that my cancer might be causing the calcium to leach from my bones. When I asked her if I could take calcium pills she said definitely not. That doesn't make sense to me but soon I should have a new oncologist and I can ask these questions again.

Does the Strontium pills have radiation in them. I have never heard of Strontium pills except in some science documentaries but still don't know what Strontium is.

Thank you for all your help. I hope you are doing well on your journey towards health. Hugs Marlene

Hi Marlene,

I have been receiving excellent care at Mayo Clinic where I work and I will say, my oncologist started me on Xgeva shots immediately for my bone mets. I feel so much better, have no bone pain and was an avid weightlifter which I could not do at all before the shots. I get pet scan, CT and MRI every 3 months. It a normal situation, frequent scans are not recommended, but in our cases, the damage done by missing a progression would be worse than a potential risk of getting another cancer from radiation. The benefit outweighs the risk. I have a team of specialists that work together on a tumor board as they present cases weekly and they collaborate and agree to plans with new developments so I do have confidence in their plan.

With all that said, I will add that they listen to me and their patients and stress that I need to be on board with the plan and they want my quality of life to be priority. The xgeva shots and the scans have not interfered with my quality of life thus far and if the team feels the scans enable them to make the best plan to tackle this, I personally am on board. Ultimately, the decision has to be yours.

Peace and blessings.

Lisa ❤️🙏

AuntC
AuntC
in reply to Lap68

Do you get Xgeva once a month or every three months? I'm getting sick from Zometa so my onc is changing it. I'm on Ibrance & Arimaden also.

Lap68
Lap68
in reply to AuntC

I take Ibrance 125mg and Letrozole and Xgeva shot every 28 days. No terrible side effects with anything. I handled weekly Taxol chemo for 6 months prior to this regimen with no intolerable side effects so I guess I have been fortunate as far as that goes.

AuntC
AuntC
in reply to Lap68

Thanks for your reply. I've been lucky not having any side effects with 125mg Ibrance. Hope I handle Xgeva well also.

Lap68
Lap68
in reply to AuntC

Thank you. I’ve been on Xgeva for 8 months so far. Fingers crossed all of our treatments are successful and more than tolerable. I believe in the power of the mind and the power of prayer.

viennagirl
viennagirl
in reply to Lap68

Thank you. I am looking foward to my new oncologist. I just hope I haven't gone from the frying pan into the fire. But I just couldn't continue with my oncologist. She caused me many stressful and sleepless nights. Because we are all so attached to the medical system for our quality of life I think it is important to be comfortable with our doctors. All the best. Hugs Marlene

Hi Marlene

Having been diagnosed in July 2019 with Breast Cancer Metastasis simply out of the blue without even a hint or a clue that I even had cancer, I have been lucky with both my GP & oncologist. He has been very caring & patient with me, while at times trying to be evasive in trying to spare me some of the gory details which I have insisted on knowing. Both my husband and I, have bombarded him with umpteen questions about various treatment options ranging from medical to alternative therapies such as Japanese mushroom powders and CBD oil. Whilst we always have a healthy argument each month when I see him, he remains committed to my care. Three months ago, I refused to take any more Letrozole due to various awful side effects. He listened, suggesting I try anastrozole, which was even worse. I rang my GP, discussed it with her & stopped taking it. When I met with him, he listened again, deciding to give me a break from the anti- oestrogen drug. but insisted I stay on Ibrance. This month, after being in sheer hell from the terrible side effects of Zoladex, I told him that I would like to stop all medication as my life has become unbearable with the side effects. He listened again. this time he has decided to take me off Zoladex for two months but insisted I stay on Ibrance.

I have tried to stay in the driver's seat with my treatment. whilst I have less than two years left, I feel blessed that my oncologist is so caring and understanding. The scans are done in discussion and agreement with me as well as radiotherapy and chemotherapy. It must be really difficult for oncologists to try to put on a brave face every day, especially when they see an increasing number of stage 4 cancer patients. While they are doctors, they are also human: they struggle with inner demons just as we do.

While my heart goes out to you, you need to understand that you need to be in control with your treatment too. You need to start asking questions, and demanding answers. Perhaps, your oncologist is taking this somewhat bullying approach because you are letting her. I suggest you have a set of questions ready and be forceful in your approach in your next visit.

Make the most of this life while you can. Don't let the oncologist make you miserable. The cancer is already doing that. Chin up and fight.

Stay strong.

Cherie

Red1246
Red1246
in reply to doomkiller

Dear Cherie,

You may have been given X years to live with your diagnosis and you say there are 2 remaining.

I hope you are not offended if I say that is merely a number that you could well beat. I’ve had two friends with glioblastoma who were given 6 months 6 YEARS ago. 😊 I refuse to be simply a statistic and have plans to celebrate my 80th in 7 years.

My oncologist says it’s entirely possible as she has other patients who have been in treatment for 10 years or more. It can happen. A positive attitude is so important.

Sending you all best wishes and big hugs,

Kathleen

doomkiller
doomkiller
in reply to Red1246

Hi Kathleen

Many thanks for your reply.

While I take no offence, I must stress that I am positive but realistic in my approach to beating this cancer. I am simply not allowing myself to 'stick my head in the sand' in the hope that this will all go away. I was diagnosed last year, aged 55. While I was in shock, my husband was utterly devastated. He took it very badly. On the other hand, I found it quite a surreal situation. From mushroom powders to CBD oil to the meds, I am trying it all. At present, my meds are making life sheer hell, but I am pressing on, discussing alternative meds, etc with my oncologist. This is my way of being positive.

I'll take the best wishes and big hugs any time. God knows, I need all I can get.

Sending you best wishes, big hugs too and a great deal of strength, too.

Cherie

SophSP
SophSP
in reply to doomkiller

Hi Cherie,

I picked up on what you said about having less than two years left to live. I know that our oncologists are knowledgeable and we should be able to trust their judgement, but in terms of overall prognosis and survival, I would not accept anyone giving me a specific time. When I pressed my oncologist during our first consultation she said I have "many years" ahead of me and that the disease would be treated as a chronic, long term health condition. I was relieved, and told her I thought she was going to tell me I only had six months left to live!

The thing is, if a patient is given a timeframe like that they may start to believe that their life is almost over and it can turn into a self-fulfilling prophecy. They can also lose hope and that can have such a negative impact on a patient's physical and mental health. Many oncologists may pluck these numbers out of the air based on statistics they have read about and then come to a conclusion based on guesswork. But each patient is an individual. We must have hope, not give in and think we are about to die. I hope you can believe that.

Take care,

Sophie

doomkiller
doomkiller
in reply to SophSP

Hi Sophie

Many thanks for your reply.

I have the utmost respect for my oncologist as he only gave in to my demands when I pressured him into giving me an answer. All my life, I have been busy as a secondary school teacher and examiner, devoting my life to children and others, and have been blessed with a healthy body devoid of any illness until 10 years ago when I was diagnosed with an underactive thyroid, and last year with a sudden stage 4 cancer diagnosis. The lead surgeon who gave me the diagnosis told me she could not operate , and referred me to my present oncologist who has never stopped trying to give me hope in extending my life.

Being a realist, I chose to deal with the reality of my diagnosis to enable me to enjoy life with my family and friends every way I can. Initially, I teared a bit, then put on my sunglasses and walked out of the hospital last summer with my husband holding my hand quite tightly. I resolved to beat this awful disease with the strength I had put into my teaching all these years. However, nothing prepared me for the miserable side-effects of the medication. If anything, my teaching career is over (this is what depresses me) but my family and oncologist are always very encouraging.

Death comes to us all. But for those of us dealing with breast cancer metastasis, time is limited, especially with the limited blend of treatments depending on the specific types of breast cancer we are dealing with. Please know that I am in no way depressed but rather grateful for the care afforded to me by the oncologist that is treating me. He always listens, is patient, caring, empathic, above all, has never just given up on me, even when I opted to stop all treatment.

I have had numerous scans, MRI's to my breasts, and even radiotherapy to both my upper spinal area & sternum all in discussion with two oncologists. I must reiterate that I trust the research, my GP & my oncologists, and would rather deal with reality - this is stage 4 cancer. I do agree that each woman's case is as unique as their bodies, thus the time we are given depends on the science of our diagnosis, treatment and outcomes of the treatment. Treatment if successful, is only effective in keeping cancer cells at bay for a limited period. Until... something new comes along to combat it.

We all live in hope. Not a day goes by when I do not arm myself with a smile and a sense of optimism. I soldier on enjoying what life has to offer every hour of every day.

Cherie

SophSP
SophSP
in reply to doomkiller

Hi Cherie,

I'm glad you have a good relationship with your oncologist. That is a must with this disease! I'm sure your positive attitude has made a real difference in your life.

Take care,

Sophie

AuntC
AuntC
in reply to doomkiller

I pray that you have more than two years. I'm glad your onc is compassionate but unless he has a direct line to God, he just can't give you a date. Pray for a long life and stay positive. I don't mean to be preachy but I believe prayer can change things.

doomkiller
doomkiller
in reply to AuntC

Hi

Oh dear. I really don't want to get into a debate or argument on prayer. So many of us battle this disease every minute of every day. Perhaps, I didn't explain myself clearly. Considering my personal diagnosis, my oncologist when pressed into the amount of time I have left, simply stated that the mix of meds are only effective in keeping my type of breast cancer metastasis at bay for two years therefore the time line. Cancer cells are quick to overcome meds after those two years. At this point, I have had radiotherapy to my sternum, mid to upper spine, and am due to have radiotherapy to my hip where a large mass of breast cancer cells had initially spread to via the lymph nodes.

At present, I'm in hell suffering terrible side effects of Zoladex. And yes, I have prayed. I have prayed to rather go quickly with some dignity instead of prolonging this hell I'm in. Perhaps, my prayers have been answered in having a team of doctors that are so empathic, caring and helpful. I'm receiving palliative care from this team. They are doing all they can. And I'm appreciative of this.

The reality is that unless something new comes along to kill off this breast cancer metastasis permanently, there is no cure for me. Not even prayer.

I pray that you respect my wishes to handle my diagnosis my way. I am not negative but positive in my outlook to life. I have prayed all my life, worked hard, treated others with compassion and kindness but ended up with cancer stage 4 suddenly without any warning or early diagnosis. This is my fate. I accept it without blaming anybody. Who can say what's around the corner.

The hardest thing is tell someone that they have only a specific amount of time left to live. Personally, I grappled with the research before I put this question to him. It is my right to know. I am glad he respected my wishes. Now I can do the things I want to instead of procrastinating. Now I can put myself first - something I never did.

I got onto this forum as a way of trying to connect to others to deal with what I am going through, to try and get some understanding of what I am facing, rather than face any more unnecessary stress. Most family members dismiss me with "Pray! Pray hard! You will get better!"

I'm grateful for the treatment I'm getting. Why shoot the messenger when all he is doing is presenting the facts from the evidence in front of him when pressured. Had I been someone passive and complacent, I would not have known.

And I soldier on with all the life left in me.

Cherie

Hello Cheri, I respect your wonderful strength in facing your diagnosis. We are all wishing for miracles. But in the case we don't get them we all should come to terms with where we are in our journey and try to love and live happily every day if we can. Hugs and best wishes. Thank you for sharing. Marlene

I also agree with some of our ladies that it is not in our best interests to be given a time line for how long we will live. Many people live long past the doctors diagnoses. Hugs Marlene.

Hi Cheri, I believe you will be with us a lot longer than two years. Don't put a time or date on it. So much is going on with cancer research that we all have a chance of being well for a long time. I am trying hard to stay positive. Every day tell your brain that you are healing. Say it over and over again. I have been told that the brain believes everything you tell it. And if it believes you are healing it will send out the microscopic little doctors that will heal your body. At the same time, enjoy every day and someone said "live each day like it will be your last". I like that saying. I now respect myself more. I think this illness allows us to love ourselves. Since my diagnosis I just see and feel more connection with the natural world. Everything looks beautiful. Stay well. Hugs Marlene

Hi Marlene

Trying so hard to believe. My oncologist took me off Zoladex kast Thursday due to a number of side effects. I'm in worse hell since the muscke & bone flares have moved on to flares in the glands too. My body is literally in agony not just from the cancer but the treatment too.

Due for radiotherapy on Tuesday. More hell. Wish I had never known about the cancer. Can't endure any more.

Just want to give up now. Had enough.

Thanks. But this soldier just can't take any more of the burning skin & pain.

Appreciate the sentiments though.

Cherie

I would be glad to have the scan every 3 months. This way you know if the treatments are working. It seems to me that most of the things your doctor is talking about is standard of care for metastatic cancer. We just don't have a lot of choices and that is very frustrating for us. However, if you are not happy with your doctor I would encourage you to get one that you feel more comfortable with.

The good news is that I talked to the Oncology nurse a few days ago and told her how sad I was feeling about how my Oncologist treats me. She was very sympathetic with my concerns and now I will be getting a new Oncologist. I also going to get some counseling. I am so relieved. My grievance with this Oncologist goes back to when I was first diagnosed with cancer about 5 years ago. At that time I had 7 weeks of chemotherapy which shrunk the tumor sufficiently for removal. The Oncologist I was seeing for my chemotherapy treatments said the effect was so amazing that I should just go for the surgery. This made my main Oncologist furious because she wanted me to go with a much longer chemotherapy regime. But the chemotherapy, while it effectively shrunk the tumor, was also almost killing me. I had such violent reactions to it that I almost died. They kept pumping me up with Benadryl but it couldn't stop the allergic reactions I had. So when I was told the tumor was shrunk I contacted my surgeon who said it was okay to have the surgery. So shortly following my last chemotherapy treatment I had a lumpectomy. My surgeon said that the tumor came out very clean with no metastasize and the lymph nodes also showed no metastasis. So I refused the second half of my chemotherapy treatments which my Oncologist was also adamant that I take. I refused further chemotherapy and to this day I don't know if it would have saved me or killed me. I took a chance. It is my body so I do think I have the right to make decisions. My friend has the same situation as I had and asked that her breast be removed and she has refused any radiation and and any chemotherapy and that is about 7 years ago and she is well. So I do think it is up to us to decide what is best. In my case I did end up with metastasis. And that has made my Oncologist furious. To this day I just don't understand why my GP sent me to that same Oncologist after I told him I didn't want to see her. And I really cannot fathom why she would take me as a patient after already telling me that if I got sick again she wouldn't treat me. So my history with her is just bad almost from day one. I am too scared most of the time to comfort these doctors with my concerns so they get away with stuff like that. After talking you wonderful ladies I am gaining some courage. I feel a huge burden has been lifted off my shoulders. Hugs to you. I hope you do put flowers in your hair. That is such a nice image. Marlene

Hi, dont take my advice as gospel. It's only my experience. I was on xgeva fo 6 months. After 3 months my jaws started hurting and then I could see the rods from 4 implants I have. My Oncologist said no more shots. He said walking a mile a day or being up and about a lot is as good as taking these shots. That was over 2 years ago.

Do You have a nurse or key worker to talk to. My hospital has a team. I have an allocated contact but I can talk to them all. I was also put in touch with the local hospice for pain management and they have been in contact and are another source of advice . I am only two months into treatment and was diagnosed during lockdown. I was very grateful for the scans they did and that everyone seems to have done their best for me in difficult circumstances. My oncologist even delivered my ibrance so I didn't have to go to the hospital to collect it. She turned up having come by train and walked as her car had broken down. I thought that was so kind but at least I met her when we had only had phone calls before.

I do hope you get things sorted to your liking.

I imagine we all have different expectations. When I had my original cancer 26 years ago, I just said , give me everything. I want to live! And I feel the same now although I know it's different this time.

SophSP
SophSP
in reply to Beryl71

Hi Beryl,

Your oncologist sounds so caring and compassionate. She really went above and beyond to make sure you received your medication. That's the kind of oncologist who is in the right profession! I'm really impressed.

Sophie

viennagirl
viennagirl
in reply to Beryl71

Thank you Beryl71.

I do have a new Oncologist coming. That is such good news for me. I talked to the Oncology nurse at the Cancer Agency a few days ago and she started the ball rolling. I will also see a grief counselor and I am pleased about that because I have so much difficulty dealing with my worries. I do agree the scans are very helpful. I have been having them every three months for a year now. I just want to know if it is wise to keep up that pace. It might be better to give me scans every four or six months especially since my tumors seem to be shrinking every time. My Ibrance and Letrozole seem to be working well for me. I wish you the best treatment. Hugs Marlene.

Beryl71
Beryl71
in reply to viennagirl

I hope it all goes well. Being early days for me, after a flurry of investigations, I'm just plodding on with the meds and hoping for the best. With that and the virus I just have no plans which is such a strange situation for me. I sort of feel life is on hold, but I also know it's unlikely to ever be any different, so I've got to learn to live in a different way. It's so good to be able to talk with others in the same boat!

The good news right now is that I have the ball rolling to get another Oncologist to take over my care. It was quite straight forward. actually. I telephoned the Oncology nurse at the Cancer Center and talked to her about my grief. I learned that I am allowed to have a change of doctors if I don't feel comfortable with my existing Oncologist. So now I have to wait until someone takes me as a patient. I might have to wait quite a while but I don't mind that. I just feel so much better already knowing I don't have to see my current Oncologist again.

Now, I just have to hope I get someone who cares about how I feel. I want honesty but I also except some empathy along the way. Thank all of you wonderful ladies who help keep my spirits up. You have given me the courage to act. So bless you all. I wish I could give you all a big hug. I will also be seeing a counsellor/therapist person to help me with my emotional turmoil. I will let you all know how this works out. Marlene

Good luck with the new oncologist. Glad you are keeping your spirits up. I agree with the others here. No one, but no one can tell you how much time you have left. Cancer does it own thing no matter what. So I am hereby giving you a new prognosis, that with new drugs on the horizon you will be around for a long time. (I realize that is a contradiction to what I have just written) Ha! I am the hard core optimist.

So sorry you are going through hell with your treatments. I hope you get that sorted out soon.

Cheers, June S.

I’m sorry to hear you are going thru this. It will be 7 years in July that I was diagnosed with metastatic breast cancer. When first diagnosed I did not feel my doctor was one I wanted to put my life in his hands so I changed doctors and the new doctor was basically suggesting the same treatment I think when are first diagnosed we are petrified wondering did we choose the right doctor. What I did was go to Dana Farber in Boston once a year for second opinion I had to travel two hours to get there but made a day of it and sometimes would stay over in Boston because there is a lot to do there. Even tho I trusted and was comfortable with my doctor it made me feel better to have the second opinion agree especially from a top notch place like Dana Farber I did this every year up until last year because my doctor that I really loved moved on to another city anyway the doctor who took her place came from Dana Farber so I no longer go for the second opinion yearly and the doctor that I was seeking once a year there told me if I had any concerns that my new doctor could call her anytime. Sorry it took so long to explain this and hope you understand what I’m saying but I guess my point is there is nothing wrong with getting a second opinion on your plan of care and for me it took the worry away of wondering if I was doing the right thing.

My husband is a medical physicist. He says the risk is very small versus the information you receive. But you can always ask to talk to your radiologist. Also why is your oncologist having scans every 3 months instead of the standard every 6 months? Have you considered speaking to your primary care physician about the treatment you are getting from the oncologist? Maybe she could help you get on with someone else. I'm sorry you ate receiving such worrisome treatment.

Ann

girlsptz
girlsptz
in reply to AnnaP668

Anna the standard of care with MBC where I live is scans every 3 months not every 6 months so it obviously is different depending on where you live. I'm Canadian so my oncologist doesn't get financially compensated with the frequency of scans which I know happens in some countries.

Sandra

AnnaP668
AnnaP668
in reply to girlsptz

Ok. Hope toy can find a doc you're happy with.

girlsptz
girlsptz
in reply to AnnaP668

Thank you. I have a fabulous oncologist and extremely happy and blessed to have her.

Sandra

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