My choice--refusing treatment
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Karuuna, I am post-menopausal and I am taking Tamoxifen. In fact, I'm very thoroughly post-menopausal because I had a hysterectomy in 2008 that included removing the ovaries. Our bodies can still produce estrogen without ovaries. My tumor was very high ER, like 99%. I hadn't done any hormone replacement, so it was just my body overproducing it. So far, I am not having any problems with taking Tamoxifen - and it helps strengthen bones. I have osteoporosis, so if I'd taken an AI, I'd have had more bone loss and had to go on Prolia, which has its own side effects.
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Karuuna, it is Tamoxifen, not AIs, that blocks the estrogen from binding to estrogen receptors, and therefore leaves circulating estrogen in your system. It is the AIs that block estrogen production and leave you with very low (or no) levels.
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hi, I’m new to this site.
IDC in 2005, Stage 3. R breast 12 needle biopsies all positive, L 1 positive. Axillary LN biopsy, LN removed. Many tests, no metastasis found. Oncologist recommended total removal of R breast including areolas, lumpectomy L breast and radiation. I declined radiation and chose modified radical mastectomy (both breasts and right lymph nodes). and I’m still here. I chose to start bioidentical hormones after breast reconstruction completed. MRIs have been clear to this date. I did what my heart felt and it worked so far for me.History of cancer in my family.
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Tlshw, thanks for joining our community and sharing your experience. You are indeed very fortunate, and it's great you've done so well!
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So good to read of like minded people. I told my cancer nurse last week that I had decided not to have radiation treatment and I was subjected to a very unhelpful and insensitive lecture. I understand they are trying to do what they think is best to treat my Stage 1 Mucinous Carcinoma 1 cm, but I feel that people who decide to opt out of the treatment plan must be given respect. I had my lumpectomy the end of January, I have clear margins, clear lymph node. I spent the following 5 weeks studying all about different treatments and alternatives and after much soul searching/questioning myself/ discussion with my husband, I went back to my strong instinctive feeling not to put my body under any more invasive treatment but to boost its own disease healing abilities instead. I am on a super nutritious organic eating plan with various natural supplements, lots of walking the dogs, dry skin brushing, no chemicals, lots of super strength oregano to purge disease. I feel healthy and strong in body and mind - vital for me. If it does recur I'm thinking with regular mammograms I'll catch it early and have another lumpectomy however after the lecture from my cancer nurse I feel like I couldn't go back for such treatment because as she told me I had entered the category of 'incomplete treatment' the first time. Best of health to all.
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glenning - it's your call. Our medical teams are supposed to prescribe meds and treatments. That's their job but they are not the ultimate decision maker. I think some of them believe what they recommend should be done no questions asked. Not true. More and more women inflicted with the C word are not only questioning the treatments and meds but refusing them as well. Good for you and them.
You have done your homework so you already know the odds/stats. The lecture from the nurse I believe is expected but sometimes it's because they don't think the patient understands the repercussions of their decision. There are no guarantees either way. Just don't second guess yourself or look back down the road and wonder what if...
Personally I went through all the conventional treatments and took the prescribed meds. In my case frankly I was scared not to. I did question my MO about taking Arimidex because it attacks the bones and I already had osteopenia. She switched me to Tamoxifen. Duh. I didn't have any issues with my 33 radiation treatments but I also know I could long term. It's a crap shoot.
Btw I'm 7 years out last August
Good luck!
Diane
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Thanks Diane - I only found this forum recently and I find it so helpful even if only to have a voice - and now some positive reaction! It is scary to refuse the treatments they advocate, it's scary listening to their response when you tell them you are not having the treatment, it knocked me back again to that butterflies in tummy, lying awake thinking and all the crappy stuff that comes with c diagnosis. I think the cancer nurses should be given some training about how to re-act sensitively and with respect to women who decide to opt out of their treatment, particularly as, like you say, more and more women are questioning medical treatment. Keep well, I appreciate your response.
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I agree some of the nurses and doctors are insensitive and act like charm school dropouts. They are used to being the last word and most of the time the only word. The one factor that is uniform for BC patients is we are our own advocates. They are experts in their fields but they don’t control our lives. I know they use scare tactics sometimes and whether the fears are legit or not remains to be seen. Bullying a patient is not okay either. Some doctors believe refusing treatment is a hit on their already inflated ego.
I bet we all know women who have declined treatment and are still okay and vice versa. There is no treatment that is side effects free.
Diane
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Hi everyone...I completely agree with all of the above. However I can handle medical professionals being unsupportive of us deciding not to do the conventional treatments as it is their jobs. What really upsets me are fellow forum members being unsupportive. In fact some of them are actually bullies and resort to scare tactics! For the life of me, I will never understand why it bothers them so much. WE need to repeat all treatment decisions made.
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I remember when I told my MO that I am not gonna do chemo, he said think about your life , its not wise, I told him if he could guarantee me that chemo will work?? He said no, even after chemo we can never call you cancer free, I was like WTF???? So my last words to my MO was how do you expect me totrust a medication which you have no faith on it??? He said Nas chemo is not for you, let’s start radiotherapy 😉
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hi all, I always read this thread as I can completely understand why a person would refuse treatment. And I really appreciate reading about how people handle making their choices and how difficult and annoying it must feel to have to stand up to doctors and nurses and family and friends who aren’t being supportive of these choices.
I don’t know what I would have done should I have been diagnosed anything earlier than stage 4 de novo. My family was so worried that because of my “health nut” history, that I would refuse treatment. The anxiety I had around taking the systemic hormonal treatments and the Ibrance was incredibly high. I was so scared to start and even consulted with a shaman to figure out the best direction to move in.
Before I was diagnosed, I had a rotation shift (I’m an acupuncturist) in a oncology clinic treating all types of oncology patients who were undergoing all different types of treatments. The doctors I worked with and I would postulate about what we would do, if we were ever diagnosed with cancer. The one thing we would all agree upon was we would have surgery to remove the cancer and possibly radiation. But not chemo.
Welp, here I am, with stage four cancer! Ugh! What a turn of events
and now ACTUALLY having to face these decisions. At stage 4, they don’t recommend surgery typically unless the tumors are ulcerating through the skin or incredibly painful or infected which thankfully wasn’t the case for me.
At some point, I will move through my treatment options and come face to face with doing chemo. It seems so tricky I hear about people who do rounds of chemo at this stage and then they are NED for a long period of time. Other people do it, but the cancer doesn’t respond. It’s a total crabshoot. And the question is, if I get to that point, do I want to spend my life having chemo which could have an amazing result, of having a detrimental result? And then making my last months here more miserable?
I am not facing this decision yet - but it is something I ponder.
I am grateful for this thread as a place to work out these decisions.
♥️♥️♥️♥️♥️♥️♥️💕
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I understand what you are saying. I'm not stage IV, but I'm a “health nut" (actually Health Educator) and I pondered what I would do if I ever got cancer before getting cancer. I said I didn't think I would treat it. A year ago tomorrow, I had a lumpectomy. I followed up with radiation but I refused chemo and so far I have also refused antihormonals. If I have stage IV in the future, I would be wondering the same as you. I guess I'll cross that bridge when I get there. I think would opt for what would keep me out of pain. Also, if in my lungs, I would have to think about treatment to help me breathe.
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Have you heard of artist Kathy Acker? She was also 50 and got a bilateral mastectomy but refused chemo and sought out alternative treatment instead.
And she died soon after.0 -
Suzanne Somers did the lumpectomy and radiation and refused chemo and hormone therapy. She’s thriving today some 20+ years later.
Another one to look up is Theresa Dinallo who has refused all treatment to go her own holistic path and is doing great. I think she’s 5+ years out?
Shannon Doherty and Julia Louis-Dreyfus both did chemo and while their stories are more recent, they appear to be doing really well too.
The point is that there are success stories and recurrence stories on all sides. Everyone has the right to choose the path that is best for themselves and they should be free from judgement, what we’re all going through is hard enough. I personally take inspiration from the successes than let the scare tactics try to pull me down. Nobody can predict what tomorrow will bring - the best we can do is live and thrive in the present feeling good about the decisions we’ve made for ourselves.
Whether that’s traditional treatment or holistic or an integrative path, I have respect for all and wish success and healing to all
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It is a virtual crapshoot. Steve Jobs went the alternate route at first with his cancer and when that didn’t work he chose the conventional route but it was too late. His family initially begged him to go through the conventional process but he refused. Right before he died he held a press conference and strongly encouraged cancer patients to follow the conventional route.
There are success stories and failures on both sides of the aisle. It’s a personal individual decision as it should be. Family members probably object to alternative methods because they are scared a loved one will die as a result. She might or might not.
So we all need to be our own advocates and not be bullied into treatments or meds we feel uncomfortable with. I had radiation but not chemo and I took Tamoxifen. Idk what I would have done either if chemo had been on the table. Let’s get real no one wants to do chemo for any number of reasons.
I can say with absolute certainty if I had an expiration date and chemo would have bought me just a few months I wouldn’t do it.
Bottom line is it’s our body, our lives and our call.
Diane
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Women die after doing everything their docs recommend too. At this point there is no perfect treatment plan for everyone and no guarantees....
Using scare tactics to justify your own decisions is horribly inconsiderate at the least to women who for one reason or another can't tolerate the recommended treatment.
All we can do is what makes sense to us.....if someone's treatment plan doesn't make sense to you and you can't be supportive then maybe no comment is best.
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Completely agree! Do not say anything if you cannot be supportive!!
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I completely agree as well!!
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Ditto!
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Didn’t help Steve Jobs being rich.
Diane
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Theresa Dinallo and the Chris Beat Cancer guy are not rich as far as I know.
Also my friend's Aunt chose to fight breast cancer holistically and she's not rich and is 5 years out and NED. She made diet changes and learned what to do via books and online. I adapted some of what's she did - cutting down on red meat, dairy, sugar, also because I found other sources like foodforbreastcancer.com echoing the benefit of these things.
Clearly I did not choose a purely holistic path for myself - I chose to do surgery, radiation, hormone therapy so I'm going with traditional treatments. But I'm balancing in the things I'm learning from a diet and exercise standpoint as well and reading these books from people who beat cancer naturally because it's inspirational and informational.
There's a well known study showing that women who exercise 1/2 hour a day for 5 days a week (so 150 minutes a week) reduce their risk of recurrence by 50% and doing that is free.
I read a lot about Steve Jobs too, partly why I still did traditional treatments. Main difference between him and Chris Wark, Suzanne Somers and others is that he (Steve Jobs) did not do the initial surgery to remove the cancer right away. The others did the surgery right away, they just refused the adjuvant treatment.
At the end of the day, like I think other women have said, there are different paths of treatment and different levels of success on all sides. This is hard enough as it is for all of us to go through without us supporting and respecting one another too. Even though I didn't do 100% the holistic path, I respect those who did. Even though I didn't need chemo and probably would have said no to it, I respect those who went through it. I'm choosing for myself an integrated balance path and I don't know if I will be one of the success stories or not, I just know that I feel it's the right path for me and I ask for your respect as well.
Keep fighting, stay strong, and let's support one another!
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Steve Jobs had pancreatic cancer, which has one of the worst survival rates. Alex Trebek of Jeopardy just got diagnosed with it and will probably be dead in 6 months or less? Breast cancer has MUCH higher survival rates.....
Regardless, the woman I brought up, Kathy Acker, did have mastectomy but refused the adjuvant treatment. Unlike some other women I think less information was available back then and it was a semi-uninformed self destructive choice. This happened in 1996. She wrote an article about her experience in the Guardian. She has different things to say than the usual cliches about breast cancer.
https://editions-ismael.com/wp-content/uploads/201...PS... I'm not telling anyone what to do. I would dread having to get chemo. If I was older, aka TWICE my age as I was only 35 when this shit happened, I might deny certain forms of treatment. I know if they wanted to put me on hormonal drugs right now I would refuse. Each case has too many variables. I was really healthy before all this happened, ate a great diet, in the best shape of my life... I have less faith in our personal choices making a difference. Cancer seems so random.. and I don't have any money to fly around the world or let this person try xyz and this person do abc and buy a bunch of supplements.... what's the point of living if you have to devote every movement to undoing cancer? My brain wanted to move on, not revolve around it.
https://www.newyorker.com/books/page-turner/cancer-became-my-whole-brain-kathy-acker-final-year0 -
Also the original poster here hasn't been active in 8.5 months..... too bad they didn't keep us up to date.
Not to be morbid but is she still alive?0 -
The statistics for breast cancer show that there are actually a lot of women with early stage cancer who never recur after being treated with surgery. More for stage 1, fewer for stage 3, but either way, plenty of women.
That means that a lot of us could refuse adjuvant therapy, not change our diet or exercise one tiny bit, and be fine and never deal with cancer again.
It is definitely statistically plausible - and maybe even probable - that every single successful 'natural treatment' story is actually just a lucky person story. They would have been fine no matter what. Then maybe there are small subset of them that would have recurred without the alternative treatments, but the risk reduction from weight loss or diet protected them.
We don't know which individuals are in which basket, and we don't even know statistically how many of them are likely to be in which basket, because we don't have the kinds of standardized testing that would let us know that.
Accepting or refusing adjuvant treatment for most of us is a real, 'do you feel lucky' kind of decision. With my stage, I had an 86% chance of cancer-free survival after 15 years, from surgery alone. That's actually really high. But I don't want to have to deal with cancer again and I don't want to die of cancer, and adjuvant therapy brings me to a 94% chance. To me, that increase was worth quite a lot of trouble and the risk profile of the adjuvant therapy. For other women, it is not. That is just fine.
I could still be unlucky and fall into that 6%. That wouldn't mean that adjuvant therapy is a sham, it would just mean that it's not a 100% guarantee (which the doctors are very up front about) and that I got unlucky. If I survive, it also doesn't necessarily mean that the adjuvant therapy was responsible for that. In fact, it's actually probable that I would have survived without it. The adjuvant therapy is giving me that *extra* 8% chance at being lucky. I'll probably never know if my survival/death was inevitable and I might as well have skipped it, or whether I was one of the 8% that it made a big difference for. Not knowing things for certain, to me, is part of this whole cancer 'ride'.
Each of us is the expert on our own life and our own body. We each deserve the opportunity to make fully informed decisions about our treatment. I trust other women to make the best choices for themselves, even if they are not the choices I would make make for me (at this time).
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I agree Salamandra.
The only time I have trouble holding my tongue is when people are basing their decision on paranoia, bad info, or incorrect presumptions. I would certainly support someone's clear-eyed choice not to do XYZ treatment. (Indeed, if I recur, I would not accept any treatment that wrecks my quality of life without curative intent. I would not cling to life if that meant living in waiting rooms in pain.) So it is a legit choice to die faster rather than live in agony or in permanent medical crisis. But when people think that chemo is a sham, or doctors only want to line their pockets, and THAT'S why they refuse treatment, it is hard to feel the same support. If I had not done neoadjuvant chemo, I would not have had a pCR, I would not have kept my breast (which I wanted to do), and could easily have progressed to stage 4 by now (lymph node of 3 cm!). Those of us w high grade TNBC are different from the low grade hormone positive population. It's a different disease! We are not suckers for choosing western meds. I am the sort of person who rarely takes even a tylenol, so it was a huge shifting of gears, but I wanted to live!!
My MO was very caring and sensitive to my wishes. I made it clear that I did not want him to save my life only to be left with a chronic heart condition, etc. He was thoughtful in his choice of chemos and they served me well. And he was elated, genuinely elated, with my outcome. He told me he saw the BS in the hall of the hospital the day after my results came in, and they high-fived one another about me. Chemo saved my life. I gave it every assist I could with supplements, diet, exercise and complimentary practices.
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Excellent post, Salamandra.
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Hello! Just stopping in to catch up and I hope things are going well. I am havung a good year so far. Ism mos om the sixth minth schedule with my MO; as reports were good in October, I do jot see her until May. The only thing was that my blood calcium levels were high, and she was going to order a parathyroid scan, but as I have not heard anything more about it, I am assuming that she has decided it was necessary. I have promised myself I will not worry About things until it is time to do it. We have just come back from eight days in Mexico, and had a very nice quiet holiday. I am thinking it will be our last trip, as my husband no longer feels able
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sometimes the calls slip through the cracks. I would call and see if she was going to do it. Can't hurt. Offices are crazy sometimes
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JoE777 I had the same thought
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