He does the scans every 6 months . Does this sound right to you?
Hello Ladies ! I have a question abou... - SHARE Metastatic ...
Hello Ladies ! I have a question about mammograms . I was diagnosed in sept of 2018 and haven’t had one since. My onc is doing pet scans
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Eliactida1955
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Yes. No mammograms for me too. The PET scan sees it all. Reenie
Thanks🙏❤️
I have CT scans every three months. When I asked my oncologist he looked at me strange and said No you don’t need them, you already have breast cancer. I guess that make sense.
Eliactida1955• in reply to
It makes sense but I have a sit in breast round and flat that looks like a bite or maybe a boil developing. I will call the office on Monday to see what they say. My pet is March the 13. Thanks for responding.
I've been getting bone/CT scans every three months since diagnosed 2+ years ago. They're doing a mammogram and PET next month. I guess they don't do mammograms/PETs on a regular basis.
No bone scan ever for me and petscan every 6 month s . Labs every 2 months and seeing the dr every two unless he stretches it
I get ct scans every three months and bone scan every year, mammogram is due but dont think they will give me one as am already having treatment for mbc
It’s good to see you are getting good care. I think the younger you are it’s treated differently. I’ve had no chemo no radiation no surgery and the tumors show just scar tissue on left and other breast it disappeared. I am taking letrozole and Ibrance. I understand that mammograms are not done bec of The pet but if I develop a new tumor I’m not sure how it’s treated because it might be another type of cancer . I wish all treatments were similar for this type but it’s not. 🙏❤️
Hi,
The only mammogram I had was two years ago when this disease was diagnosed. Like a lot of ladies on here I have CT scans every three months. I had a PET CT scan two years ago, but again that was all part of the diagnostic process. I haven't had one since, even when I asked for one.
Sophie
Eliactida1955• in reply to
There is so much difference in the way this disease is treated. I get the pet every 6 months but I’m calling tomorrow to see if they will do something else. I have a flat round red spot on the breast-I’m diabetic and it could be a boil or a cyst. It is my left breast where theee tumors were and are now scar tissue. It could be another rumor maybe different cancer but thinking positive.🙏❤️
• in reply toEliactida1955
Yes, I agree with you. When the doctors thought my disease was early stage they couldn't do enough for me and were falling over themselves to help and give me surgery options. The moment they told me it was metastatic, my oncologist immediately put the brakes on everything and it felt like I had been put on death row. Each time I get my CT scan results I just feel like it's a reprieve until next time. Maybe I will feel differently tomorrow!
I hope the red spot is nothing serious to worry about. I ca understand your concern though. You need to know what it is.
Sophie
Eliactida1955• in reply to
Yes I really understand what it means to live a day at a time-sometimes I wish I could go back because it’s always on my mind. I try to stay positive but it’s something that never leaves your mind-thoughts . It’s true the moment my onc told me stage 4 the treatment changed. Of course I wasn’t thinking of doing radiation or chemo when he told me I can’t cure you.. God bless us all to be strong. Thank God for this forum.🙏❤️
• in reply toEliactida1955
I know what you mean. I wish we could all turn back the clock, catch this disease in its early stages, and zap it into oblivion and not have to deal with metastatic disease. I remember sitting in the consultation room with a breast surgeon a couple of years ago, trying to decide if I wanted to have a lumpectomy or therapeutic mammoplasty. I couldn't decide, but was told not to worry as I could decide in my own time. I draw strength from you ladies on here. It is such a supportive site!
Sophie
• in reply to
Hi Sophie, reading this I could have written it myself. I feel the same. The Oncologist I have gives me the result from my CT scan every 3 months and asks about pain but that’s it. I asked about a bone scan as I was told I would have one every year when I was diagnosed (last one March last year) and he said it’s not necessary unless I have pain elsewhere. He said they concentrate on where the Cancer / Metastasis are now. When I was diagnosed originally with breast cancer in 2013 they bent over backwards to help. Now I’m ER+ and HER2 neg stage4 Secondary Cancer it’s as if I have to push for everything. It’s almost a case of oh well, that’s it. Gives me no confidence whatsoever. Best wishes
• in reply to
Hi,
I agree. I think with this disease the focus is more on containing what is already in our bodies, rather than trying to cure us as they do with early stage breast cancer patients. I am constantly pushing to get the best possible treatment, as I refuse to be treated like a second rate cancer patient just because my disease is metastatic.
Sophie
Eliactida1955• in reply to
I have never had a bone scan and I hurt but just a bone density was done over a year ago. Today I worry about the spot on my breast but no call back. I left two phone messages and stopped by the office . I know they are busy but I want to know I have the right to know, thanks for responding ❤️🌹
Eliactida1955• in reply to
Well hopefully next visit I will get things done but he’s not calling me back- I worry about this red spot and he should respect that. Thanks for your response❤️🌹
• in reply toEliactida1955
I hope you hear soon. Best wishes
• in reply toEliactida1955
I think it is important for you to get that checked out. I had been told by my oncologist months ago that if I ever get a type of wound on my breast with the tumor I was to call her immediately.
When I was going through the hellish US experience of trying to get SSDI, I had to go to one of their doctors. He told me about a woman with stage iv breast cancer that refused to admit or acknowledge or get treated for it. He said she came to his office ( (he was then in like private practice or a medical group) and he said she had a huge wound (different than you) on her breast. He said the smell of the wound on her breast with the tumor was horrific and he thought he was going to throw up. He did not understand how the woman herself could bear it. He said she worked on the Staten Island ferry boats which take people from and back to Manhattan so she worked outdoors most of the day. She just refused all treatment and was in denial but he said the smell of it always stayed with him and he never understood how she could smell it. But denial is a strong thing and I guess bc she worked outside on the ferries, it didn't cause much concern.
JoyBe• in reply to
What a story, Geez Louise.
Eliactida1955• in reply to
Yes my dr not worried he said wait till the pet scan. Yes that sounds horrible about a wound -I don’t have anything but small spot and skin is not broken-I have cancer and it could be another tumor-we will see -my lab is great and tumor markers too!!!
No mamas here. Pet scan usually every 3 months, for friend with mbc. I get CT, bone and MRI.
So I had a pet scan from base of scull to mid thigh and an MRI of my head and Ct scan of chest abdominal and pelvis done immediately following the diagnoses of MBC. They found a spec of breast cancer in my right ovary when I had the total hysterectomy done. Everything came back clear. They still do a mammogram on my right breast yearly as I only had left mastectomy. I just had a CT scan like above done. This is a year after the last one. I will get a bone density done again here within a month as they can only do those every two years. My understanding is if I start presenting with something questionable or if the mammogram or CT where to show something then they may do another pet scan. Other then that it will remain mammogram and CT scan yearly Bone density every two years. I'm currently on Letrozole only. Hoping it lasts a good long time!!
Wow you have had more testing than me. I have never had ct or mri just pet scan after intinial mammogram and biopsy. I don’t understand why testing isn’t the same for breast cancer. Where do you live? I am calling tomorrow to let them know my worry.❤️🙏
I live in Pennsylvania
• in reply toEliactida1955
I was originally told when first diagnosed stage iv, I had been going to the breast cancer center. She said she was going to order a PET scan for me but that govt. marketplace medicaid would probably turn it down and say a CT scan was just as good. She said to me not to worry that in reality it was true even though pet scan showed more, it was also more expensive. I did get denied and they did just the CT scan and were able to see it was in my lungs. Now, it has been about two and a half years and I have CT scans every three months.
Hi Eliactida, my breast cancer started in left breast and they do not check the right breast as I am being treated for metastatic breast cancer. Good luck. Blessings Hannah
I was diagnosed in 2013 with mbc was found in pelvic bone never breast but because estrogen based cancer it is considered breast cancer anyway I have been having pain in left breast and dr is sending me for mammogram with biopsy as he said I know we already know you have breast cancer but there are different types with different treatments 🤷♀️
That is true well I’m calling him tomorrow because something is going on with the left breast -I am diabetic so it could be a boil or cyst or maybe another tumor. It is red spot round and flat-it doesn’t hurt -pray for me and I pray for all of us. 🙏❤️
Sending many prayers!
That’s exactly what my doc said. My breast cancer was her2- and lung metastasis is her2+. So I had a mastectomy to get rid of her2-. Only treating Her2+ now so he said I need mammograms on right breast in case that type comes back.
❤️
I haven’t had a mastectomy or chemo and radiation. I had a module in my right breast that is gone and the three in my left have become scar tissue. I’m asking him in the am my concerns -thanks for your response❤️🌹
Mine scans every 4 to 6 months.
I'm in the States. I had my mammogram after I broke my arm and the MRI showed cancer in the bone. That is when I had my 1st Mammogram in March 2018. My ONC never provided the results for me to have in my records.
Then in December 2018 I requested a new oncologist.
My new ONC immediately scheduled a Mammogram appt. in Jan. 2019.
When I arrived at the Breast Center at my local Hospital in 2019 they informed me that it's critical to have yearly Mammograms.
In addition, the Mammogram radiologist should provide the measurements of your Breast cancer tumor. I'm blessed to only have a tiny tumor in my right breast.
My right breast tumor has gone from 2018: 1.3 x 1.2 x 1.6 cm, 2019 : 0.8 x 0.6 x 1.1 cm, 2020: 0.8 x 0.6 x 0.7 cm.
Wow -this is a different response. Most say they are not getting mammograms since metastatic breast cancer was diagnosed. I’ll ask tomorrow because if it’s a new tumor the other 4 have disappeared -nothing is lightening up in my body. I started on letrozole and Ibrance in November of 2018. Thanks 🙏❤️
A little additional FYI ......You know, when I had my biopsy in March 2018 to confirm it was MBC, they placed a marker in my R breast where the tumor is located so they can measure every time I have my yearly mammogram.
You have to request and advocate for the measurements because every radiologist has a completely different way of writing up their findings.
In Jan. this year, I had a radiologist that did not provide measurements and thought I would except his remarks of stabilized.
Well, no that doesn't float with me.
I called and had him provide the measurements. When I got his update report with the measurements, I had to call again and correct his measurements because he had reported last year's reversed.
2019 : 0.8 x 0.6 x 1.1 cm ... he wrote 1.1 x 0.6 x 0.8 cm.
That can be important down the road.
He thought I had no change because his error was 0.8 went to 0.7 cm.
No no... it was a 1.1 cm that reduced to 0.7 cm.
2020: 0.8 x 0.6 x 0.7 cm
You have to stay on them. just saying. I intuitively knew the tumor reduced in size. It's important to me... it's my body.
Yes I remember they put markers but havenever done a mammogram since the biopsy -it’s been a year and a half almost. Only pet scans they have done. I will ask tomorrow. The pet scans have shown no tumors only scar tissue where they were and the right breast has disappeared. I go again in March—we will see. Thanks and God bless!!❤️
• in reply toJoyBe
My onco made the same remark to me that some radiologists are more detailed in their reports than others but I would never be allowed to call the radiologist doctor myself. They are not allowed to tell me anything. They send everything to my onco and she is the only person allowed to tell me. Once after the tech did ultrasounds of both breasts and then went to show them to rad. doctor, and came back and then requested mammograms of both my breasts and then I had to go back for more ultrasounds, I knew something was up. The radiologist doctor then came in herself and told me they found a new cancer tumor far from my original one (I Had been off Ibrance and had only been getting injections since I was recovering from an invasive surgery). I found out later that she got reprimanded because she was not supposed to tell me. She was supposed to report it to my onco and let her tell me. So different cancer centers (I am in Brooklyn, NY) have different protocols.
JoyBe• in reply to
It appears to be the case.
I would like to bring some clarity regarding, the difference between the radiologists who do my whole body bone scintigraphy, CT study of chest that includes all organs and bones, and CT abdomen and Pelvis organ scans every 4 months, those radiologist do not communicate with me and are not allowed to by they're employer- a private company.
They send the report to my oncologist. The Breast Center that performs the mammograms and ultrasound if needed initially sends the report to my oncologist.
In this specific instance when the mammogram radiologist provided a vague report w/out measurements, I informed my oncologist I was not satisfied and was provided in 2018 his assistance's phone number for any questions I may need answered at anytime.
My oncologist suggested I call and request a more detailed report with measurements just like the report provided in 2019. So I did.
I also believe the reason why a marker was placed in my breast during the biopsy in March of 2018 was because the tumor is so tiny aka "mini-centimeter" and it continues to get smaller, therefore w/out that marker, my oncologist would never be able to locate the tumor during my monthly manual breast exams.
In spite of different oncology protocols, I am a squeaky wheel, always have been and if I need to be further informed about anything, I always persevere for clarity I need for my own peace of mind.
• in reply toJoyBe
I also have tumor markers in both breasts. They tell me they keep an eye on my left breast because there are a bunch of cells there that appear to be forming a cluster which just means they MAY become cancerous. Not a definite, but they keep an eye on it. I didn't realize you could get breast cancer in both breasts.
I am the opposite. I don't want or need to be overwhelmed with things I do not understand bc I still barely understand breast cancer LOL....so all I need to know is it spread and we have to change treatment or it did not. I let my onco and medical staff worry about the little things. Or what I think are the little things.
I don't worry about the rest and that works for me and my mind and body. I have to give cancer some of my life, but I refuse to give it any more time than I have to.
I am a little more like "it is what it is". Worrying too much or like in my case, not worrying at all really is not going to change whatever is going to happen. When it does, then I will worry until they tell me what the new treatment is. But everybody has a different way of coping that works for them.
Eliactida1955• in reply to
Yes I am like that but when you live with someone who isn’t then I have to deal with it. I try to keep all stress away and it is what it is. I’m glad my onc looked at it and is not worried. March 13 is the pet and my last two they can’t find anything. Like he said I’m doing well and I have cancer so it could be it.❤️🌹
Eliactida1955• in reply to
When they did the biopsy the radiologist told me the mammogram was abnormal and could be cancer . I know from my husband that while he gets ultrasounds for his thyroid cancer they tell him right away. It’s different depending on what facility it is because some won’t tell you. After my scans I call them and pick it up to read it knowing that it’s sometimes over a week before I’ll see my dr.
I like to have details of all my "4 month Scans", every yearly Mammogram and every monthly CBC,CMP,Tumor marker results, Vit D,25-Hydroxy and vitals.
The Minimeter reduction is encouraging and exciting supporting my continued positive state of mind.
All the detail results from all the above mentioned diagnostic results are my body's way of communicating with me by providing insights I need for me to enhance my optimal care for embracing MBC as part of who I am.
I am in communication with my body 24/7 responding to any adjustments I feel need to be made in my diet, in my daily routines as well as being mindful of my mental health and stress levels which is critical for keeping my BP down for supporting my chronic PTSD diagnosis.
Your inquiry "Is it going to change your treatment plan?"
It's always possible, so yes.
Since Ibrance and Femera both impact the liver, all of my diagnostic results are critical with my efforts being vigilant with advocating for full communication from technicians and my oncologist.
In addition, I monitor my dental changes with regard to my Xgeva shots.
I continue researching when needed and share my inquiries and concerns with my oncologist since information from the medical professionals has never been fully disclosed.
My MBC treatment taking Ibrance and several Letrozole brands then Femora, for 2 years has been positive so far.
Stable and diminishing metates in my bones are evident, my "minister" reductions in the breast tumor are significant.
Fortunately I do have one of the least aggressive types of MBC. HER -1 , PR and ER positive.
MBC was my first and only diagnosis of Breast Cancer.
Radiation was offered in the beginning and I refused, suggesting lets wait and see what the results of the Ibrance and Letrozole will be.
I also refused the suggestion from my 1st oncologist who thought I needed a pin in my hip. As it turns out the cancer diminished completely from the hip.
My treatment plan will always be subject to changes since my body is unique and as it continues to respond in subtle ways to every change and event that takes place in my life there will always be adjustments.
Other then the pain from my initial broken arm which is how my MBC was discovered, I have been fortunate to experience no pain.
I believe that has to do with respecting and supporting my body's limitations.
I'll be 62 in June and I plan on at least another 20 years working hard everyday to provide the Love I deserve and require while embracing all my challenges.
Hope my long response was helpful.
• in reply toJoyBe
Wow. I am impressed by all you do to keep on top of things. Good for you. I am definitely the complete opposite. I do not know nor have I ever know why my tumors markers are. I am told my blood pressure is fine and in normal range all the time drives a friend of mine crazy (she does not have cancer) bc I eat what I want whenever I want, I eat no vegetables and I am certainly not physical and she said I dont get it. I overtake care of myself and my blood pressure is all over the place and you have cancer and do not do anything and your blood pressure is normal. Really, all I need to know is that the cancer is spreading or it is not spreading and that is enough.
I am seeing a cancer nutritionist next week because I have gained way too much weight and feeling uncomfortable so my onco said please and I said okay, I will give it a shot but I am NOT adding any vegetables to my diet (except maybe lettuce and cucumbers). I do not juice nor do I do any other kind of medicine or take supplements or whatever some book suggests. For some people it makes them feel better to keep on to of everything. For me, I don't want to spend my time writing and keeping track of any of this, that is what I expect from my onco and the Cancer Center.
So far no real issues. All I need to know is after a CT scan if they see anything new. I take Verzenio and just as a test for myself, I get CT scans every three months. So since the Verzenio was getting on my nerves side effect wise, I was just curious so I stopped taking it two months before my next CT scan to see if it made any change or spread.
And I was stable, even after two months of stopping it. I know I was taking and chance and went back on it, but even now, if I have plans or if its making me feel bad, I take a break for a few days and then go back on it. Probably, once a week I don't take it to give myself a break.
Oh, I Just turned 60 and have been diagnosed for a bit under three years now.
They placed the marker after biopsy because I guess they thought I would have surgery but I did not- I chose to not have any chemo or radiation.My petscan is showing scar tissue where the three tumors were but if the red spot is another tumor or if it’s spread then yes I guess treatment will change. I will call the doctor and see what he says tomorrow. My next petscan is March 13. I think it could be a boil but I don’t know and I never have had this on my breast before
My only diagnosis was MBC and my treatments were lab monthly first 6 months and now it’s every two months. My tumor marker is 24 and I have zometa infusions every 3 months -pet scan every 6 months where everything is stable according to the results. I am on femara and Ibrance but I worry about a red spot on my breast now . I haven’t had a mammogram since August 2018 so today I will call the dr since my pet will not be until March 13. The tumors have disappeared but now I worry with this red oval area about 2 cm. We can only take it one day at a time and it seems your plan is great. I hope the best for all of us. God bless and thanks for responding. 🙏❤️🌹
They are going to seeme in the am-it’s not infected and doesn’t hurt and I’m glad they finally called me to let me know-. I don’t feel like it’s good care we are receiving here and I’m thinking of moving to Greece where I brance would be free. It’s sad that our premiums are so expensive here for Medicare will start for me in a few months. I will pay about 300$ a month and then another 600$ for the meds. Who can afford that? Thanks for the reply-we will make it somehow. 🙏❤️
Hi Sandra ! Hope you and your husband are ok ( I just read that he has had a bad cold too) . My husband has just got over one ...picked up on his work travels in Europe (and his third this winter !). We now have a routine living in 2 sections of the house with 2 TVs ...when this happens !! Just hope that the Coronavirus doesn’t become pandemic !
Just read your comment above , and I do find this confusing too ...I had an annual mammogram in January on my left non bc side ..I rang my breast care nurse to check I needed one , since I have a 6-9 month ct scan
and thought this would cover it ...she said I still needed one as the ct scan is not as good as a mammogram for breast tissue. I don’t know if my situation is different , as I had a right mastectomy which removed my breast tumour , just before I was diagnosed with my bone mets de novo . I haven’t seen my onc since December , but will ask her about it late April after my next scan . Fortunately the mammogram was fine so at least reassured on that front ...until my next ct scan , which seems a long way off ! Love to you and hubby xx
Yes I don’t know about your health system but i bets it’s better than ours. I know a lot of people cannot afford their meds and they suffer. It’s all about $$$ -they don’t really care. It’s sad. I’ll let you know what the dr says.🙏❤️
Hope you can get it checked out and resolved quickly ....Take care! x
Wow Sandra. I have private insurance but will soon get Medicare. At this time Pfizer is paying my copay since nov 2018 and I don’t know for how long . I can’t afford the 14000 a month it is -who can? I can have other meds if this stops working and I guess there will be assistance if I have private but with Medicare they don’t help you . Still with insurance premium for Medicare with supplement is around 300$ then there are copays . After initial 6-ooo paid then it will be about 5 percentco pay of med price. Yikes! We are looking at 8-900$ a month just for this speciality med. we work all our lives and the end is like this. I hope something will change here but I doubt in my life time. Out of pocket is out of the question for me. At least we are alive.. Tommorrow I see the dr and hopefully I will be ok. Hang in there!!!🙏❤️🌹
I had been on Ibrance and obviously I had a large tumor in my breast already but then had to have surgery which was supposed to be a month recovery and turned into four months that although I was getting injections, was not taking the Ibrance or anything else.
When it finally healed enough for me to get back on something, my onco sent me to breast cancer to have an ultrasound. The tech took a much longer time and then came back into room and did it again.
Then she told me the radiologist doctor (Who I guessed look at the ultrascan films) wanted me to have a mammogram. I knew something was up but did not even bother asking bc I know the technicians are not allowed to say anything to the patient. Then after mammograms of both breasts, they called me back again to ultrasound room and did more of that.
So it turned out that during the time I was not on Ibrance and just getting the injections and while recovering from that hideous, painful surgery, they saw a new cancer tumor from the original one that I could obviously feel. I asked my onco (she called me at home) why did I have to have a mammogram when I had one already and we already knew what type of breast cancer I had. I then learned that you can have two different types of breast cancers in one breast. That was news to me so they had to do biopsies of both breasts again (it felt like the beginning all over again) but I was lucky and it turned out the new cancer tumor was the same type I had already ER/PR+ - Her2-. She said if the second tumor tested for a different type, that would have meant a whole different treatment plan. I was happy that it was the same.
Also (just came to me) that it was mentioned that in my left breast (which has no tumor) they had seen cells starting to cluster which (It has a name, I forget it now), but that they would also have to keep an eye on that breast because the cells were beginning to form a cluster that COULD possibly be pre-cancer. But I guess they probably looked when I had the second mammograms and biopsies last year.
I always forget that some people live in England and Canada which is totally different. I passed on the Genomic testing. My onco set it up, I told her I did not want it, she said well I already set it up so I said okay. Then I called and cancelled it myself and she never even remembered bc she never asked me why. That is my onco for ya LOL She didn't even remember that I was supposed to have it.
You are lucky to have a dr like that. None of my dr spend time except maybe the gynecologist -she’s female.. my onc 5-10 min tops and my medical maybe 10 -15 min . I am in and out of the onocologist office quickly but the medical it’s common to take two hours to be seen-I mean the whole visit. I wish the best for you.. 🙏❤️
Still I feel that you have good care there. Here in the U S it’s another story. Different systems and we are hoping for the best care we can have with this disease.. I’m glad you trust because I don’t. I know I have too in a way because what else can I do ? I think with M B C they don’t treat it as my dr told me -I can’t heal you.. I just hope I have a few more years healthy enough to enjoy. We take it day by day!!!🙏❤️
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