So. 2 years ago, a doctor in Ballarat (who told me adamantly that the pain I’d been suffering for 8 months prior, was NOT cancer and that I “DID NOT NEED a CT scan, as the pain was just muscular”, (I’d also been told by a highly recommended osteopath the week before, that my pain was psychosomatic!)
But the next day, on 3rd May, one day later, she told me I was going to die ....soooooon and I “didn’t have long”, and that it was “too late”. I had 4th stage metastatic cancer!
Bang!
My life changed even more dramatically than it had in the previous year when my man had been diagnosed. I thought that was bad enough!
Talk about “truth is stranger than fiction”.
So the reason I don’t keep this tightly to my chest and hide the fact, is that I hope it serves as a reminder to everyone who is touched by my story, that you should never listen to just ONE health practitioner.
Always believe yourself when you feel something is wrong, and get other opinions.
And also, there may be new research, or cures or preventatives, or even as in my case, palliative medicine, thanks to the amazing researchers and scientists that work so hard to provide us with incredible options.
Love to all and I’m hoping for a few more years yet. ❤️
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Timtam56
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Wow - what a story! Amazing the way some doctors don’t even try to nuance their messaging.
I’m so glad you’re still here - 2 years later - to tell it! Brava! You’re so right: we must do our own research, listen to our bodies and when something doesn’t sound or feel right and we’re not getting anywhere with current medical team, seek another opinion.
Thanks for sharing your story. I’m also 2 years on from my MBC diagnosis. My oncologist also told me when my markers started rising over a year (I had tests every 6 months then) that it was nothing to worry about. And then I had the PET/CT scan and it showed Mets to mediastinal and hilar lymph nodes and nodules in right lung.
The thing about "hot spots" is that they could be caused by other forms of inflammation. I have spinal damage that my Orthopedist is watching to see whether it responds to the chemo for my lymph nodes.
I am hoping all of us have a few more good years in us. Your story is similar to yours as I spent 1 1/2 years trying to convince my family doctor and an orthopaedic surgeon that something was seriously wrong with my hip. They didn’t believe me and the surgeon refused to send me for a ct scan. Finally a month later my neurologist sent me for a MRI of my hip. As he said it wasn’t his department but he knew something was wrong and he sent me. What stage 4 metastatic breast cancer.
I hope by each of us sharing our stories we will help another person stand up to their doctor.
Yes Sarcie, there you go. Another one. We are incredible for not being so angry we can’t function. No. Instead we are all just amazing and get on with it, or not, but we are still amazing.
Hi, I had been feeling breathless after always being fit and active, I went to 4 GP's they all told me there was nothing wrong with me and one of them said it was all in my head. Had a car crash then they discovered my breast cancer had come back but this time in my lungs and bones so cant be cured. Now on ibrance, letrozole, zoledex, demunhab. Wish you all the best xx
Your stories help me get out of bed. I was fairly stable for 5 years. Then wham! Told I have less than a year if chemo doesn’t work. The emotional toll is far worse than how I feel. God bless us all and keep the treatments and each new day coming ❤️
Hi Nancy; I don't know how you feel about it but I just marvel at doctors who say things like you have less than a year if chemo doesn't work. I never ask my doctor "how long" because I really don't think they do know...and also I don't want to hear it. We are also so different and there are so many things that factor in to a treatment working for each of us. I say this having been told in January that I could die in as little as two weeks if my extensive liver metastases grew in the wrong place and caused liver failure. I think that was true, but in fact they didn't grow that way and I'm still kicking...and walking, and playing Zoom games with grandkids, and sticking up my middle finger to dire predictions. From what I know of you from this site, you have the spirit of a fighter too. If it helps you get out of bed, remember that. And use that middle finger!
I’m scraping my way out of a tailspin. I am deciding I am not ready to fold up shop, so I’m writing down specific questions about addressing my new mets. How are we going to treat each one? Initially I was too stunned to question much. I was focused on my deadline of less than a year. I am feisty but I have my issues with anxiety and depression. I want to live a decent quality of life. I’m not done. So I am going forward and have that middle finger ready.
I don't like to use the word hate, but I do hate those dire predictions, like less than a year. How do they know?? They don't even get the diagnosis right in the first place! I have a feeling you are going to be around for awhile. Lots of new meds on the way.
Cheers Lynnfish. I tilt my morning coffee to your Prosecco. 🤣
Hi Chris,
Thanks for sharing your story. I'm not sure if it's appropriate to congratulate you, as none of us wants to be in this situation. But you are right that we have to advocate for ourselves. I feel angry for you. How dare the doctors treat you that way!!
It's so annoying when doctors brush off our concerns and tell us we do not have anything to worry about. I went backwards and forwards to the doctor's. I suspect I had cancer in 2014 when I was diagnosed with a severe vitamin D deficiency, but other than prescribing me supplements I was sent away with no further tests. The severe fatigue I was experiencing, and the aches and pains were not taken seriously. When I saw my GP about the lump in my breast I told her about the bone pain and she said it was nothing without even referring me for a CT scan. But she was wrong.
I was initially diagnosed in March 2018 having first visited my GP in the February, and was told it was early stage. My two-year metastatic anniversary is coming up on 16th May. That's when I met my oncologist and was given an update on what was really going on. I think my age was against me. Had I been older, this may have been picked up on a mammogram, but they are not routinely offered to women in their 30s. I have always been a fairly healthy person, I didn't seem to tick the boxes for breast cancer, and so when I was diagnosed it came as a real shock.
I'm hoping that we will soon see a cure for this disease. I will not stop hoping and doing all I can to improve my health and I wish the same for everyone else too.
Thanks Sophie. Also always great to be reminded of your story.
This is why I feel I should never complain at the ripe old age of 63.
You are too young for this to happen! And that’s what I did tell the first doc who’d ignored me and my worry for 8 months. I did go back and say to him! “It’s too late for me. But what about the younger people who come to you, and you misdiagnose them? Mothers of young children? What would it take for you to listen to them next time?” He cried and said sorry and did all the right things. But I said to him, “if you are tired of your job, give it up. If you haven’t got enough passion to question more, give up.” I told him I was not interested in how he felt but that I cared about the other people he’d misdiagnosed! I was very clear, calm and I didn’t say any of this angrily. But I wish I could say it to every doctor!
You have every reason to complain. No one deserves to be diagnosed with this awful disease, no matter how old they are. I knew children in school who had cancer. One girl I went to school with who was a year below me in school died shortly after she turned 18. She was diagnosed with leukaemia at the age of 11, and knew from the start that her disease was metastatic. I'm friends with her mum.
I think you did the right thing confronting the doctor who misdiagnosed you. I do not expect perfection from doctors and nurses. But I do expect them to be honest and competent. His bad judgement proved very costly to you, so you had every right to tell him how you felt. His tears may have been those of regret and genuine remorse, but that does not change your diagnosis or make it any better for you. I just hope that he took to heart what you said and that he treated subsequent patients better. This may have been a turning point for him in his career. As hard as it can be for doctors to hear the truth, sometimes they need to be reminded that we are human beings with feelings, families and lives we do not want to give up. We are not just a set of cancer symptoms.
After being told I had been treated for stage one cancer, and despite glaring signs in my bloodwork plus other symptoms, I had a young ER doctor tell me “I can promise you don’t have cancer” Three months later, after a long saga of begging to be seen by a doctor in a new city, I was diagnosed with bone Mets.
That kid in the ER was so arrogant and self assured. When what he should have said was “I don’t Know the cause of your symptoms, but your blood work is a bit off, perhaps call your oncologist”.
I have debated whether or not I should write to him ever since, just so he is more careful next time. I don’t expect an Er doctor to diagnose metastatic cancer but he should not have dismissed it out of hand. . Your story makes me think I should write to him.
Before him I had 2 other doctors—GP and OBGYN misread my symptoms. Even though they didn’t know their cause (although suspected Lyme or another tick borne illness) neither suggested I call my oncologist just to be sure—I was almost 10 years past my initial stage one.
I wonder if more of us should be speaking up like you did. Or joining our voices. I sometimes think about figuring out a way to speak out and raise awareness for how MBC is dismissed or ignored as the statistics imply we are “cured” after 5 years What bothers me is it’s not just us cancer patients who are misled by how the 5 year “survival” rate for early stage cancer data is presented, but medical professionals as well. My understanding is that over time 30% of women do have progression post that 5 year mark. Not a majority, but a significant number. Enough that if we have symptoms and pain that can’t be explained, cancer should be considered early on as a possibility.
Please please write to him. It’s so hard to do. Walking into that docs clinic that day with my friend made me sick. And looking at his (quite nice looking) face..... he’s not a bad person. I know. And as he said to me, he would not do anything differently..... back then. But he will now. He said I’d “changed his life.” So at least the ones after me will hopefully be treated better.
We really could write a book.
Really. I’m not joking. (And you’re not hijacking, at all.)
So sorry you had a little u0start do that to you. And all here who have had the same. I don’t think it’s bad to feel the anger and move through it, as long as you don’t fall to their level, and we don’t want to hurt anyone.
Chris, I’m so glad that you were able to say that to that doctor. I think women are pushed aside for more mundane diagnosis's because they are women and women complain more. I think that it is quite the opposite and that most women know what is happening in their bodies. Even after a mastectomy 8 years previously my back pain was just a pulled muscle until it was lesions on my spine six weeks later that was found because my husband said to my doc, “You know Elaine had cancer, right? Don’t you think you should follow up on her pain?” Grrr! It still makes me angry! Elaine
Today is one year for me that I was diagnosed. We share the date just one year apart. I had lost a lot of weight quickly, and my primary knew something wasn’t right. I couldn’t eat more than a few bites without being full. I credit her with helping me find out what it was. I wouldn’t have thought to have an endoscopy without her pushing me. I’m sorry you weren’t being listened to. We know our bodies.
Thank you. It was a crazy time, and my husband kept pushing me to keep eating, and I just had to say I couldn’t. I still get full quickly, but my weight is steady, so I’m hoping the meds are still working. I had a CT scan in February, and they see something on my omentum, but we are in a wait-and-see mode until my next scan. They did a PET, and they see a shadow, but it doesn’t light up. My cancer has never shown on scans, so I wasn’t surprised. Thank you so much for asking.
Dear Sandra. Well, yes! It is life limiting. But we are still here. We are still fighting and will continue to do so whit what we have got! I get so down some days about how much energy or ability I haven’t got. It is hard isn’t it? But my sister died very quickly of this very same thing 12 years ago. They didn’t have then what we have now. And we never know what’s around the corner my friend.
So sorry that it was hard to read for you. Never my intention. Just wanting to let others know that we always have to stand up for ourselves! I hope it lights fires in us to keep making sure we are heard. Even now I still get pushed to the side and have to repeat and be more forceful about how I’m feeling.
My 2 year Stage 4 diagnosis is coming up on 25th. I can’t fault my GP I went to him for shoulder pain and he had me xrayed the same day, it was arthritis due to radiotherapy but he refered me back to my oncologist just in case. I had a ct which found asomething on my hip that didn’t look like cancer but didn’t leave it they then did a biopsy and it was cancer. This was 25th May, I was due to fly to Greece on 4th June in that small space of time they scanned me again and had me sign consent forms and I flew out to Greece with my first dose of a trial drug. The NHS can be slow with waiting for results etc but I can’t fault them apart from that. Trial drug worked for 597 days( I was on it the longest of anyone) about to start Ibrance on Wednesday already started Letrozole. Many years hopefully to come 😀
I hope you have good results with ibrance and Letrozole . I was diagnosed de novo stage 4 November 2017 and have been on ibrance (125mg )/ Letrozole since and my low volume bone mets stable . Wish you the same ! x
I hope so too, hope your feeling ok on that combo, been on letrozole for about 5 weeks and feel ok so hoping Ibrance isn’t too bad. I only have 2 bone mets hip and l4 both inactive on last scan. I did have cancer in my auxiliary lymph nodes in Feb but had them removed 5 positive nodes and 5 clear so hopefully that’s sorted that. It’s a roller coaster but still enjoying life 😀😀
I’m glad you’re doing ok ! Just drink lots of water once on the Ibrance ( I even have a bottle by my bed !) and always take Ibrance with a meal ... I have coped very well on it so far . I have had a few side effects , but tolerated them ... check on here if you need any advice from ladies who have had the same side effects and how dealt with . I am similar to you with having had 2 mets to hip and tiny specs to small area of spine , but these have been stable for a good while. I also had positive lymph nodes (16 out of 18 in my case , on my right side ) detected after my right mastectomy / axillary clearance . Good luck with the new protocol ! x
Ive started the water regime yesterday, managed 6 pints!. I plan on taking the Ibrance with my teatime meal. I have a plan in my head to deal with side effects. My trial drug had low blood counts and neuts so hoping to manage the same again. On shielding so stuck at home for weeks but quite enjoying the relaxing pace of life. Stay safe 😀😀xx
I’m shielding too ( with husband and 21 year old daughter home from uni) but I do go out for a hilly countryside bike ride , just on my doorstep , each day .( on an ebike I purchased just before lockdown !. ) I have Sainsburys deliver my groceries once a week (on the governments ‘ extremely vulnerable ‘ priority list ) . And the weather has been good in recent weeks so I’m often out in the garden . Take care ! x
I had my 2 year anniversary in February. I saw the gp twice in the 6 months before my diagnosis and was told that the pain was arthritis and I needed to lose weight (my bmi was 25) but it didn’t feel right and as it took 12 months and 4 attempts to get referred for my primary breast cancer, I was persistent and went another route to get my diagnosis.
I think all our stories demonstrate how important being persistent is when things just don’t feel right.
It makes me so angry to hear how you were treated. If someone is concerned about something, it needs to be checked out. I hope many more years for you. Blessings, Hannah
wishing you many more years, and continued fighting spirit.It’s nice to hear your positivity from someone a year behind you.
So right. As I have said before here, don't take no for an answer. I believed the doctor who told me it couldn't be cancer in my breast. I thought he must know what he was talking about! That was 9 yrs. ago. I am fortunate that my cancer has been slow growing until this year.
It will be my 1 year anniversary being diagnosed with mbc on a May 10. I have had a lot of. Issues with ibrance. I have been on the lowest dose the last 4 months and my scans in April showed everything is stable. I have 12 tumours in my spine. I still had a bit of a sore back and that seems to have gone away and now have issues with nausea.
Congrats on your two years! That is a great beginning. No one knows how long we have and the docs who told you that you didn't have long to live made a huge mistake in doing that! Survival stats are not meant to be applied to individuals and even alot of well educated people, like doctors, don't understand statistics! I'm a long termer with mets--16 years, and it's been one year at a time. I don't remember exactly when I stopped worrying about dying but I don't anymore. I was fortunate to get a really great woman onc right after the lumpectomy showed a very invasive cancer, and right after staging was completed and had revealed extensive bone mets, she referred me to a bc specialist onc at a major cancer center. I didn't especially feel a need for that, but it was sooo reassuring to my husband and grown daughter that it was worth it just for that.
Good results for two years is very promising and probably means you don't have a rip roaring aggressive bunch of cancer cells. Keep us updated about how you are doing.
Wow, 16 years. That is wonderful for you and your family. And is really good news for all of us who are trying to stay well. I don't think Ibrance was around all those many years ago so wonder what drugs you were taking. They were obviously good because you are still well. Thank you so much for sharing your story. You were blessed with a good onc. Hugs Viennagirl.
Loving the bike , but not yet done 20km , as all local cycling in the countryside near my home ... hope to soon ...once pandemic is over and rules relaxed ...looking forward to cycling to farmshop cafes out in the countryside here for coffee and cake ! ☕️🍰x
I have been doing just 5km ... just a circular route in the countryside very near to my home , but no cars on the roads ! Look forward to longer rides on Princess Leia hopefully soon ! x
Congrats on this anniversary! When the metastatic diagnosis comes I know I was terrified. So grateful for survivors here that tell their stories! Keep on rockin’!
I have had to be my own advocate and fight against the system that says not to check if you are under the age of 40. I discovered a lump in my left breast that my doctor said was a fibroid and not to worry. I followed my instinct, changed to a female doctor, she said it was easy to see if it was a cyst or not and did a needle biopsy in the office that day, to help me with my concerns, because she LISTENED to me. No fluid in the lump sent me to a tissue biopsy and that confirmed that I had Breast Cancer at 39. It was diagnosed as stage 2.5 and was treated with radical surgery and chemo. I still believe to this day that I would not be battling the cancer again at this age, because it would have killed me much earlier if I had not listened to my instincts and advocated for myself. You all remember that and keep up the work that Timtam56 and many others have chosen to be your own advocate and listen to your instincts.
Happy anniversary Timtam56 and may you have many, many more!
Thank you. Don't give up the fight. I was diagnosed MBC just about two years ago too, after a doctor for my sciatica completely missed it. I don't think she even looked up from her laptop, typing in USELESS report notes during the consultation, when I was describing what I was feeling physically, and arguing with me practically calling me a hypochondriac! I left her office that day so hopeless...because I KNEW already what my situation probably was. (I try not to think about her too much anymore at all.)
Now, I have a great team, fortunately, and I'm generally doing a lot better. Like you though, I try to make the best of each day, and dismiss those who may not "get it" even if they are trying to be supportive. (I'm talking about personal support...not idiotic dismissive doctors who ruin it for the great ones, who want to know everything so they can try to offer a, hopefully, effective solution.)
Thanks and yes yes yes. Wow. This story really is a book in the making isn't it? So glad to here you're doing well now. And so sad go all of us.... It IS hard to look back on isn't it. I can't stand the thought of seeing that doctors face Shem I told him he'd totally missed something that may have changed my life. That look. He put his hands out for me to hold his. I just looked him straight in the face and didn't move my hands. Eeeeeeyyyyyyyywwww
That email to Timtam56b was for you and it was for her too. I got your names mixed up. Sorry. Stay happy. Hugs Marlene
Sandra, You're an inspiration, truly. I keep looking at my daughter's old bike in the garage, thinking - I mean "knowing" - I should get out there and get the blood circulating, but I'm lazy and a procrastinator. I'm writing the name "girlsptz" on a sticky note so that I do it tomorrow!
Yes, I agree we have to seek out more than one opinion when we get a cancer diagnosis.
I also think and we have to take some responsibility for ourselves and look into alternative cures.
I am struggling with whether to continue taking my cancer drug Ibrance indefinitely. I was very healthy when I was first diagnosed with cancer over a year ago. I looked healthy and felt quite good but I had some pain and discomfort caused by my osteoporosis. So when they explored the cause of the pain they discovered that my breast lumpectomy that I had five years ago had become metastatic breast cancer and had gone into my bones. So I was put on Letrozole and Palbociclib. Now I feel I don't have as much energy and I look somewhat unhealthier. So I am wondering if I shouldn't ask my oncologist to stop the drugs maybe for a while so my immune system can restore itself. All natural health doctors say we need a healthy immune system to get well so how can we get fully well when the drugs we take knock out our immune system. I am such confusion about this. Although my doctors tell me I am doing well after being on the drugs just about one year I am still worried that I cannot ever completely heal following this path.
I am very happy for you that you are still doing quite well after two years after your diagnosis. And your diagnosis makes me aware that doctors are just humans and not always up on all the ways a body can heal itself. I wish you a full recovery. Why not. You are still here and have the option of now doing some research. Keep searching for answers. We live in a wonderful age when we can benefit quickly - via the internet - the beliefs and opinions of many others like ourselves and of other types of doctors. It will hopefully end up in us making good decisions.
I agree with what you said about how we should take some responsibility for our health. No one is as invested in our health as we are. Even our oncologists can only help so much. After all, once we are metastatic their goal is to just prolong our lives, rather than cure us. So in some ways their hands are tied. That's why I do more to help myself and hopefully improve my outcome.
It sounds like you are having a hard time with your treatment. I would talk things over with your oncologist and see if there is a way to manage your symptoms, as I have a feeling you will be advised to continue so long as the ibrance is working at controlling your disease. Do you take any supplements or do anything else that is alternative? Have you made any dietary or lifestyle changes that might help? I try to exercise Monday-Friday, and give myself the weekend off. Maybe a few lifestyle changes will help you.
Hi again and thank you so much for responding to me. I am doing okay most of the time but I can see from looking into my face and eyes that I am not as robust as I was when I started the drugs. Even though my tumor markers are down to 4 from 24 I still feel I am being dragged down from the drugs I take. I will be talking to my main Oncologist in early June and express my concerns to her. I just don't know why I felt so well when I had at least five tumors and now don't feel as good with my tumors shrinking. It just hasn't added up for me so I will talk to her about it. Maybe she will offer me a break from the drugs. I doubt it but I will ask and try. I have heard stories that all cancers can be cured so I wonder why they tell us that stage 4 metastatic cases are not curable. My radiologist said healing is possible. I have talked to her and met with her but never actually had radiation. She doesn't think I need radiation but my oncologist wants me to have it on one location. The radiation doctor is a lovely, warm caring person. When I asked her if I could heal she said yes, why not. So she seemed to think it is possible to completely heal. My oncologist says no. All this is so confusing. I just don't like it when doctors tell people you have 3 weeks or 6 months to live. No one should put a date on you. I think they should tell people to change their life style and try to get well. I have changed my diet and now I am getting more exercise. I am getting outside into my garden and that is mostly my exercise right now although my husband and I walk for about 40 minutes two and three times a week. When I am in my garden, pulling weeds or turning over the soil I think of my old landlady who at 102 was doing her own housework and had a beautiful garden. She was still healthy. She lived at least 3 more years after that because I saw her on TV being interviewed and she still looked fine. As far as I know her only exercise was gardening and making her own wine and playing cards three times a week with her buddies who loved sampling her wine. She was a little, chubby Russian lady. So I ask myself what do I really need to get well......maybe just my garden and the people I love.....I hope so. I want all of us to get well. I still believe we can heal. I love your energy and hopefulness. Hugs Marlene
I don't know why you feel worse than you did when your tumours were larger. That is definitely one of those questions worth jotting down and mentioning to your oncologist. It sounds like it could be a side effect of your treatment, rather than from the actual tumours themselves.
The radiologist sounds lovely. We need more doctors like that who can give us some hope, rather than write us off as incurable. Did she offer some suggestions on how you can heal? It would be interesting to learn what she has in mind.
It upsets me as well when I hear that a person is told when they are expected to die. I find that cruel. If I had been told I only had a certain length of time left to live, I don't think I would be able to cope. When my friend's daughter was diagnosed with leukaemia at the age of 11 she was given six months to live, but she lived for a further seven years. A lot of that was down to her mum's dogged determination to keep her daughter alive and help her any way that she could. I think that if she had been diagnosed now she may well have stood a better chance of survival as she died in 1998 and times have moved on since then.
Like you, I changed my lifestyle and improved my diet after my diagnosis. I asked my oncologist for some advice, but she was very vague. She just said to eat a balanced diet, and that it was OK to have chocolate and Chinese takeaways. That wasn't really what I wanted to hear! I was hoping she would give me more detailed advice on positive lifestyle changes that could make a difference, but I realise she is not an authority on that. Her focus is on oncology.
Your garden sounds really nice, and so does the image of your former landlady. She was obviously doing something right to live to over 100! I spent some time out in my garden this afternoon tending my strawberry plants, mint and I also dug up some potatoes from last year's crop. I need to plant some more. I also sowed some parsley seeds and weeded. I need to spend a lot more time in my garden to clear it of weeds and make sure I give my plants a fighting chance.
I'm glad you feel the same as me that we can heal. I know that it is harder once our disease is metastatic, but it is not impossible. There is so much that we can do to improve the efficacy of our conventional treatment.
Thank you for your thoughtful response. I am glad you have a garden. I hope you have renewed joy in tending to it. I think plants are our friends. I think it is what kept my former land lady living well into her old, old age. So we should all- if possible - grow a garden- even in pots if we don't have a plot. The plants might to talk to us in ways we don't understand but maybe we can develop ways to listen.
Yes, we are in difficult times because our oncologists don't understand how diet plays a role in our health. I am trying very hard to integrate wholistic types of advice into my regime. It is hard because I was told originally to not even take vitamins. I found that so absurd that I just couldn't obey. So when it comes to nutrition or alternative therapies I cannot talk to my Oncologist. I actually have three oncologists that I see. The main one is a woman and she oversees everything and the other two are doctors I see monthly who talk to me to ask me how I am doing. They also don't know anything about alternative therapies. One of them actually looks like he is going to have a heart attack. His face is bright red and he is overweight. Funny how, I can see his poor health but didn't see my own poor health coming. Anyway, at that monthly meeting - if my blood level is high enough they start my next 21 day cycle of drugs. I expect you go through much the same things.
I think my radiologist doctor responded that way to me because I told her that I was changing my diet to be more plant based. She is Asian and very slim and healthy looking. She was pleased that I was making that change. She obviously supports diet as a good way to health. She also told me that she believed my loving family - who she met - was going to be a very big healing force in my life. I have two loving adult children and a kind and thoughtful husband who are helping me keep my spirits up - so she could be right. Having love around is a good thing. Even if it is a pet. I would love a pet but my husband said we are planning to travel in the future so since our cat died we don't have a pet if you exclude the beautiful ravens that come visit us. I know animals and all sorts of pets can also be a healing force.
I harvested some stinging nettle lately and horsetails yesterday. I am drying them and using them to make tea. All these things are hopefully helping me. I have a CAT scan in early June and hope it shows improvements.
I am thinking of all you wonderful ladies who are out there doing such a wonderful job of sharing and caring. I am blessed just knowing you are there.
I agree that having a garden to tend is therapeutic. I just helped my dad with his and came back home to planet some potatoes and water my plants. I have got high hopes this year!
I respect my oncologist, but I do not expect her to fill all my health or personal needs. That's what my family, friends, integrative doctor and other members of my medical team are for. I just see her as one part of the jigsaw. That helps because it means I am not too disappointed if she cannot answer a question I have. I just go elsewhere for the answers.
It sounds like you are on ibrance. I don't take that drug. I am on letrozole, zoladex and zometa, so the only blood test I get is every three months for my pre-zometa checks.
I need a bit of a break! I've been working, then I worked out when I got home, and I have just had a green juice which perked me up. Now I can rest for a while until my husband gets home.
Hi Soph. I enjoyed hearing that you are having green drinks.
I have just started to make myself green drinks. Wish I was doing this long ago. I also now go into my garden and pick fresh green leaves and eat them. And I look for dandelion leaves and wash and eat them too. It is a sort of salad on the go. I am hoping to make my immune system stronger with all these greens. I am now also making myself a cocktail of ground egg shells (organic eggs) and ground flax seeds. I add this ground material to rice milk and drink it daily. Another drink I take frequently is bone broth, mixed with turmeric and fresh dried organic unpasteurized garlic. It just tastes like a bowl of consume - sort of. I have stage 4 metastatic breast cancer as well as osteoporosis so I am trying to incorporate as many good things as I can into my diet. I recently read on line said that cancer is fed by starches which turn into sugar. So now I am wondering what I can eat. I don't want to go on the keto diet although some naturopathic doctors and wholistic healers suggest it.
I don't want to eat too many animal products. Right now I am on a predominantly plant based diet. But I don't know how to eliminate starches which seem to be in everything. I am going to be doing more research on this and try to come up with a diet to help reduce my starch intake and at the same time eat a healthy diet. What makes this so hard is that some of the good advice seems to be contradictory. There is so much praise for eating richly coloured foods such as carrots and sweet potatoes etc. that I don't want to give them up but they are, of course loaded with starch. It is all so confusing because we need the vitamins from these foods.
I wish you the best results with your diet and drugs. Thank you for sharing. Hugs Marlene
It sounds like you are doing a lot to help yourself. I would recommend you speak with an integrative doctor for some specific advice on what you can do to heal. That's what I have been doing, and it has really helped. If I had to figure this all out for myself I would end up tying myself up in knots and I don't need that!
I have consulted two dietitians, a naturopath, pharmacists, my GP, oncologist, oncology nurses and my private doctor for advice. The dietitians were helpful, and the naturopath gave me some advice, but I felt that she was not fully invested in me. She cancelled my second appointment and wanted to reschedule for a long time in the future. It always felt like she was not fully committed. I received an email from her recently asking if I needed any follow up help. I would normally respond, but I found her unprofessional and self seeking, so I won't be returning.
When I met my integrative doctor he ordered some blood tests for me. From those results he was able to devise a plan for me, which included my diet, and many other lifestyle changes. I have had other blood tests done since then, which showed some deficiencies (low folate, vitamin B12 and aldosterone) so he was able to advise me on the best course of action and recommend supplements to address those issues.
My point is that it is best to seek professional help rather than try to work it all out yourself. It can get really overwhelming otherwise and you may end up taking something that could be harmful to you. You want to do things that improve the efficacy of your conventional treatment.
I don't know if we have integrative doctors here in BC but I will check and see if I can find one. I really appreciate you telling me about this. Because I really don't get enough information from my Oncologists. I did go to a Naturopath once but I didn't feel he was very helpful. Just suggested a plant based diet. I know that might be good but he didn't offer blood tests. So I will try to find an integrative doctor. Thank you so much Sophie. Hugs Marlene
I hope you are able to find an integrative doctor near you whom you can consult. I'm not sure how things work in Canada, but there must be options you can tap into. Your oncologist sounds a lot like mine. She will go over my CT scan results with me and ask how I am feeling, but that's about it. She does not advise me on my diet, exercise or lifestyle. I have accepted that this is not her area of expertise, which is why I have gone elsewhere for advice.
I'm sorry to hear that your experience with the naturopath was not very positive either. There is no "one size fits all" approach with this disease. A plant based diet might be beneficial for one cancer patient, but not so good for another. My integrative doctor told me that I did not have enough "good fats" in my diet, so I have started eating more avocados, extra virgin olive oil, nuts, chia seeds and coconut oil. The hardest thing for me was adding the olive oil, as I don't like my food to be oily. I prefer salads to be plain, so I have had to overhaul that view and get used to eating olive oil most days! So my diet is mainly plant based, but I do still eat some meat and dairy.
I hope your search goes well. Let me know how you get on with finding an integrative doctor.
(Loved being in Vienna, by the way. Too short a visit, sadly)
Yes to all the above.
But I worry about you coming off Ibr/Let treatment. I know that it’s keeping me alive. I have asked my Onc a couple of times, some of the really hard questions. And I know the consequences of not being on something to combat this disease.
And I am also on some other alt treatment. Ie cannabis oil, Vit C etc.
But you have to do what you have to do. Just make sure you are looking after number one!
I can get Cannabis oil but wouldn't know how much to take. I also would like to know if you take Vitamin C in tablet or powder form or if you have it injected into your body intravenously. I will try the Cannabis but don't actually want to spend time being high. I have never been good with drugs or alcohol. Isn't it ironic that now I have to take drugs to stay alive. I should have possibly had a bit more red wine in my diet in the past. I come from a very religious background that frowned on alcohol. Although I don't spend much time practicing now but some things stuck with me.
I do have some CBD tablets but don't know if that is the same as what you are taking. Hope you don't mind telling me how you are taking Cannabis and Vitamin C. I do have some CBD tablets but I am afraid to add them to my diet because it might anger my doctor. Is your doctor okay with the CBC. We have some very old-fashioned and straight laced oncologists here in BC. I asked one of them if marijuana would help me and he got mad. So just don't know.
I recently have added bone broth and unpasteurized dried garlic to my diet and recently added turmeric. One of our ladies on this site saw her blood measure go up to 1.5 after her trip to India where she ate lots of veggies and turmeric - so I added it to my bone broth drink in the morning. And I am also crushing organic egg shells and adding them (half a shell) to my drinks. I try to do this every day. The egg shells are 45 percent protein and the rest is minerals and vitamins which makes it easier to digest than the calcium tablets from the retail stores. I also try to work in a miso beverage in the afternoon. And lately I have begun chewing on some greens whenever I can. I still have some of last years Kale in my garden so I chew the leaves and the stalk. I do this because doctor Mark Hyman on You Tube said we need these things for our gut biom. So I am hoping to improve my gut flora. All this is keeping me quite busy. I also spend some time meditating and often spend an hour or so on my Wave Mat.
Bless you and thank you.
By the way... I liked hearing that you enjoyed Vienna. I have never been there but my ancestral name is Wiens which in Europe is how they pronounce Vienna. My father told me when I was a girl that his family originated in Austria. So one day I saw a poster. It was an advertisement for Vienna and it said "Wien hat mere". So maybe a long time ago I was a vienna girl.
I wish you the best in your journey to get back to health.
In answer to your questions. About ......”Cannabis oil but wouldn't know how much to take. I also would like to know if you take Vitamin C in tablet or powder form or if you have it injected into your body intravenously. I will try the Cannabis but don't actually want to spend time being high.”
I now take vitamin .c in the form of lyspsimol, (I haven’t checked with docs yet as I only started this last week.) a natural type of oil that my daughter gets for me, as well as the cbd oil. I was also told by my oncologist NOT to take any supplements, as they can muck around with the medication. But earlier on, I was taking real cannabis oil, and same as you. I didn’t want to be high. (I had a very frightening experience the first time I took it. It was supplied free to me, and I was told to put it into capsules to make it easier to take. And I spilt it so I licked it of the paper I had underneath. Wellllllll. Did we have a funny night that night. Very sad also. Because I was away with the fairies and I could hear my daughter and a friend talking about my cancer, and I kept thinking how sad it was that this person they were talking about was so sick with that cancer everywhere. Then I realised it was me. Oh dear.)
So after that I was very careful and only took it at night time. Didn’t feel the effect as much. Now I use the one that doesn’t make me high and I’m fine.
My doctor has told me I’m coping with the medication. Exceptionally well. And I’m glad for that. But I also know that it WILL stop working one day.
But I also had a thing a few months ago where my niece wanted me to take some ayevedic powder, called triphala. I should this to the pharmacy at my cancer hospital. They said definitely not. As it will make my my ibrance work too well. Does something to the kidneys. So I get we’re they are coming from. I don’t think they don’t like supplements because they don’t work. I think it’s because they don’t know HOW some of them will work against our medication.
That said. All of my docs have said that if I want to take any form of cannabis oil, it’s fine. Whether they believe in it or not!
I have medical marijuana and go to dispensary I get cbd spray that has no thc in it so you do not get high They also have what’s called thca which does not get you high and was told it is best to take cannabis with thc so now With the thca that doesn’t get you high I’m able to take every night to help me sleep. Hope I explained that clearly it’s a big help got me as I do not like the high on the regular thc it makes me paranoid.
Thank you Barb for your information about Cannabis. I think I will add it to my daily drug routine. I will probably take it at bed time so I more relaxed. All the best for a happy, healthy future. Hugs Marlene
Thank you. I am so grateful to you for sharing your Vitamin C information and your Cannabis information. I will see if I can get that Lyspsimol . And I will begin using my gentle CBD capsules at bedtime as I am also reluctant to get stoned. I am sorry you had such a freaky drug trip as that sure didn't help your confidence at the time. I will also ask at the dispensary if they have a spray.
I suppose the Cancer Agency could be genuinely concerned that we might create negative drug interactions but I sometimes wonder if they have another motive. Perhaps we are guinea pigs.
The doctors and the drug csars might not like it if we use alternative therapies because it will skew their research. I hope that isn't true but it does make me wonder. If guess it is possible that if we add things to our regime they are not able to evaluate their drugs. They won't know what is working. I just hope that when the drug agencies prescribe these drugs they already know enough about the effects they are providing to not make us into guinea pigs.
The women who are suing their doctors are obviously not being cared for so I don't have complete trust in our modern doctors because they don't understand the way we get sick to begin with. They are only treating our symptoms and not trying to understand how we got sick and how we might restore our health.
However, so far I have been doing fairly well and maybe that is because I am being cared for by my doctors. I just don't know and I don't want to foolishly let the doctors call all the shots. That is why I keep exploring the whole subject. That is why I appreciate all the information I learn from you wonderful ladies.
My sister told me an interesting story which I have almost forgotten. Because it sounded too fantastical and it didn't fit in with what my Oncologist was telling me. She said that stage 4 is not curable. I do still want to believe I will prove her wrong.
Anyway, I don't know if my sister's story is reliable but it did make me hopeful at the time. She, my sister, told me that she told her hygienist about my metastatic breast cancer. The hygienist told her that her sister also had mbc and was on the same drug Ibrance and Letrozole. Then she said that the drugs completely cured her sister. The hygienist said her sister is off the drugs now and has been given a clean bill of health. Sounds a bit like a fairy tale. But maybe it is true.
I will ask my sister if she can talk to her hygienist again and get more information. If I learn any more I will pass along the information. We all need hope.
I can get that Vitamin C that you mentioned at my local Health Food Store. They call it Liposomal C. I think it is the same Vitamin C that your daughter gets for you. So next trip into town I will purchase this Vitamin C. The herbalist I talked to at the Health Store said it is more easily assimilated into the body. I am so grateful to you for telling me about this Vitamin C. Stay well. Hugs Marlene
I talked to my sister Donna about the woman who had stage 4 breast cancer and was healed completely by taking Ibrance. She no longer goes to that hygienist but is looking into this for us. My sister's daughter in law goes to the same dentist and thinks she can find out more for us. So she is trying to help too. Donna does remember that her hygienist's sister lived in New York. When I have more information I will pass this along to you and hopefully we can all benefit from what I learn. I just hope it is a true story and maybe I can connect with this woman to learn more about her journey.
I hear you it took me two years of complaining to different drs about pelvic pain before I got a doctor who sent me for a CT scan and found growth on my pelvic bone then almost another year before Ongologist I went to at that time to finally do biopsy and discovered it was metastatic breast cancer. Now I never go by just one dr opinion and do some research on my own also. I feel we learn a lot of good information on this site from each other’s experience and am so glad I found this site 💖
Barb. What is it with these people. On the news her in Melbourne, last night, a woman is taking her doctor to court! I cried when I saw it. She’s in a wheelchair. Same as us. 4th stage mbc. But hers is in her lungs, brain, bones lymph, liver..... and somewhere else. She looked very sick. I don’t look sick. But her lower came on for a second and said she’s dealing with 8 cases! I’m glad they are doing that.
But do they need this trauma? I just feel so sad that this is so rife!
But I guess this is why I feel we all need to tell our stories. So the doctors hear it, and so that all the people out there trust in their gut feeling.
Anyway, this post has taken up a lot of AirPlay! I’m so for those who don’t want it to keep going. But thankful to all of you for your responses and hope that we all benefit from each other’s care. Aren’t we lucky to have this?
Yes we are lucky to have this site I learn more here than from doctors. I have good drs now but there is never enough time to get all questions out and I feel we know more about side effects from each other’s experience than they do. Wishing you nothing but the best in life.
Yes, we have the opportunity to help each other and that is just so wonderful. Just knowing you are out there is a healing balm to my spirit. My doctors spend very little time with me. My main oncologist just blasts me with her speach and provides my tests results and then basically rushes away. So I felt lost and so resorted to searching on the internet and that is when I discovered all you very special ladies. Thank you Barb. Hugs Marlene
Wow, I didn't know that so many women didn't get the care they needed from their doctors. I just thought it was my BC doctors who acted so cavalier about the subject. I do have one doctor who is very sweet but I don't get to see him very often. I think if I see him again I will present him with some of my concerns. He might be open to more dialogue. Thank you Timtam for telling us about the women who are suing their doctors. They obviously are angry about the care they have received. I hope it wakes up other doctors. I really enjoy listening to the doctors that I watch on You tube but I am scared to follow their advice. They are against all the drugs but I think at my stage 4 level I should not do anything too radical. However, I am tempted. But I see many of you ladies thriving on the drugs you are receiving and that is helping me stay confident. Hugs Marlene.
Sandra!! I finally got out there on the bike! Just got back from my ride through the neighborhood...It was reasonably pleasant and so I will try to make it a habit!
Believe it or not, knowing that I had not responded to your question above was on my mind and helped motivate me! (i.e. I did not want to answer "No, I haven't" so I waited until I could say "yes!". Thanks!
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Two pet scans cancer free 
My apologies
My first time outside my apt. in Brooklyn, NY since March 16th. (long, as usual)
scared
