My choice--refusing treatment
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Hello,
Nice to see all of your posts and admire the choices made by all. It is not easy to go against the grain. I was just diagnosed with my third breast cancer. Originally in 2009, I had lumpectomy and 2 re-excisions. In 2013, I was diagnosed in the same breast and had a mastectomy with DIEP flap reconstruction and spared my nipple. Now in 2020, was just diagnosed with Paget’s in the spared nipple. I have had surgeries but no chemo or radiation. Have seen how devastating those treatments can be with no guarantee that the cancer won’t come back. I have always been stage 1 with local recurrence only. I have changed my diet, do regular exercise and have been working with wonderful doctors who have helped me with herbs and supplements to strenghten my immune system. i would rather feel good and take the best care of myself possible to strengthen my immune system, than deal with the side effects of harsh treatments that don’t offer me any guarantees. I believe in my approach and I feel like it has served me well overall. It is nice to see I am not alone!
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Deni, I had bmx in Aug and also said no to an AI. I was on HRT prior to dx and stopped that immediately, had oopherectomy, have low BMI, so not a lot to produce estrogen. I am using Mediterranean diet and exercise as my tx. The online calculators indicate that AI only improves my recurrence risk by 1%. For that little benefit, i decided at 68 that qol is more important. My breast specialist indicated there was no reason for the MO to follow me and if she was needed in future they would simply set me up w her again. I have no regrets about my decision. By not taking an AI, I risk bc recurrence; by taking it I risk a whole host of other issues. For 1%, not worth it for me.
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Yogatyme, I completely understand. And, when I was going through my initial diagnosis and weighing all of my treatment options, I felt that the 2% absolute benefit of chemo was not worth the QOL issues it would present. My first diagnosis was ER-/PR-/HER+; my second one was ER-/PR+/HER- The current diagnosis is Triple Negative. I have not yet met with a MO, but I am certain chemo will be recommended. I can't find any clear data about recurrence rates for stage 0 TNBC for those who have done chemo and for those who haven't. I still believe that I can do more for myself by doing everything I can to strengthen my immune system as opposed to tearing it down. It's not the route for everyone, but It s a choice I know is right for me. The Mediterranean diet is fantastic. My grandparents were from that area of the world. My grandma always made everything from scratch and lived to a healthy 102!
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I've also refused the AI's for now. It's been almost a year since surgery, but I have needed this past year to rest emotionally or whatever before going on any drugs. I am 70 and did do the radiation after lumpectomy. My cancer was prognostic 1B and clinical 2A so it's pretty early. However being ILC my tumor was pretty highly estrogen positive. Not taking the AI does cause me a lot of stress. I've been doing so much research on the pro's and con's. The Oncotype test determined my recurrence without the AI would increase around 3%. It was 6% with the AI. However, the Onco people don't know that I also have LCIS. I don't trust all these tests unless they know our full story --- like my LCIS. So I have decided to do a circulating tumor cell test. If we are determined to have CTC's in our blood our chance a recurrence is much greater. It's a prognostic test only -- they can't do anything about CTC's . That test is going to make my decision about going on an AI. I am so frustrated that we don't have individualized treatment. I believe that is the insurance companies fault. Have you noticed how little our insurance pays the doctors. No wonder they don't have time to do anything but provide us with standardized treatment. By the way my fear of the AI is Osteoporosis since I already have Osteopenia.
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Jesse, it is so difficult and stressful to deal with these decisions since we don’t know what the outcome will be! Dealing with cancer is terrifying. I think it is so important to dig in and find out as much as we can before we proceed with any course of action. Plus, being at peace mentally with what we choose is vital, regardless of what that decision may be.
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Even before being diagnosed, I knew that I would never take Chemo or Radiation, if I was ever faces with the options. That made it really easy for me after I was diagnosed. It was a simple "No Thank-you". No tears and next to no fears. It was a shock that I was diagnosed with breast cancer, yes, but my difficult decisions were already made. I'm all for strengthening the immune system. There are so many ways to help do that, with amazing results! It will be 2 years in April. Time has really flown by! I've had MRI's, Ultrasounds, and Mammograms since, all with great results. From here on, I will be doing another MRI in July, and then one every 2 years after that. No more Mammograms for me. They are so uncomfortable and show less than the MRI anyways. It's amazing how I have learned not to sweat the small stuff and also how to avoid unnecessary stress. I'm really loving life!!
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Deni63 -- I know triple negative is not a fun cancer to have --- however from what I've read if you can get it in remission or cured you won't have to worry about a recurrence after 5 years like the positive tumor people do. You're lucky in that respect. My periodontist's wife has triple negative and I think she is in an immunotherapy trial - don't know what that involves. I think she's going to be fine. Also I met a triple negative woman at my Oncologist office last month -- she had chemo probably 5 years ago and is fine.
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Yep, jessie, I completely love that my risk of death is very high over the first 5 years, and then I don't need to worry about it as much. Makes life much easier for me than for those non-tnbc patients.
Maybe we could skip comparing diagnoses for how "bad" one kind is compared to another.
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Today I am feeling even more strongly that decisions about treatment are a crap shoot. My brother lost his battle with esophageal cancer yesterday. He did everything recommended re: treatment and was compliant....but his stage1 metastasized within a year and he lost his life after 6 mo @stage IV. I am grateful he was not in pain and only wish his treatment had been more effective. Cancer is a sneaky little b that has a mind of its own.
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Thank you so much, Edj3. Yes, so very heart broken.
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So so sorry about your brother. My thoughts are with you
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Thank you, Deni.
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Yogatyme --- Oh, I'm so sorry. Cancer is horrible. I always thought my parents would die of cancer, but instead they both died from dementia complications. However, I lost my husband when he was just 58 to a horribly painful cancer. You just don't understand it until you or a family member has gone through it.
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Jessie, you are so right about not truly understanding until it touches you personally. Thank you for your kind words
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Sorry for your loss, Yogatyme! I can't imagine losing a sibling that way! Makes me want to fight even harder so that my siblings don't have to go through that.
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Thanks Lori!
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Darlings,
I just feel like venting and I think this might be the spot. First of all, thank you for posting, I no longer feel alone.
This is my 7th year with breast cancer, I'm 62. Bilateral mastectomy, no reconstruction, no chemo. Last fall I had my first radiation which I believe brought on plural effusion.
Having my chest drained of just over 3000ml I was referred back to an oncologist for a "drain".
The standard of care for me is Ibrance and Arimidex. I'm one of those women who gets a migraine if you mess with my estrogen. 4 generations of women in my family have had menstrual migraines. I'm old, I know my body.
The oncologist answered ZERO questions about the drain. He acted as if he'd never heard of menstrual migraines and that I must have cancerous tumors in my brain causing migraines. Though I only have them now related to anti-hormone cancer treatments, he's ordered an MRI on my brain, Ibrance and a full blood work up.
While I wait on an MRI the plural effusion continues in the form of pulmonary effusion. I'm going to the ER this Saturday to have the fluid drained from my heart and to have a drain placed in my chest. Or maybe I should just wait for the stupid oncologist to get his head out of the "standard of care" box.
Not all of us are "standard".
Thanks for the use of the hall,
cb
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cb:
I’m sorry I didn’t reply sooner to your email. How are you doing? Your going to the ER tomorrow right?
I would definitely be looking for a new oncologist. One thing I learned on my cancer journey is we definitely don’t have to stay with any doctors who we don’t like. Or who are jerks. Just a suggestion. I would find a new oncologist.
I hope all goes well tomorrow and you have great doctors at the ER caring for you.
You are right. We are not all ‘standard’ of care. I sure wasn’t. 😉
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Did you have a CTC test? I never had one, but I quit chemo and declined everything else due to QOL. I was 31 @ DX for reference.
I always wondered if maybe I didn't have CTCs
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I thank you, thank you, thank you for this awesome forum & you wonderful group of ladies. Currently, I am opting out of treatment outside of the segmental lumpectomy followed by onco-reduction, I had done. According to the oncotyping, my chance of recurrence is low, & I have an aversion to putting toxin into my body. Unlike the general population, where SOP data comes from, I am changing my lifestyle to a plant based diet, taking supplements guided by a naturopath, & increasing my exercise. The medical team cannot or will not understand my decision. After speaking with one of them, I always feel so vulnerable & filled with self-doubt, but I always feel better after reading this forum. Needless to say, I am scared, but I trust myself & my body more so than the medical community (& I am a nurse), and I am a very active person, who values a quality of life. My question to the group is if there is anyone, who opted out of treatment, outside of surgery, & had a recurrence? Did you regret your choices? I guess I'm simply trying to feel better about my choice. How do you deal with the emotional uncertainty of it all? Well, it turns out I really had 3 questions. Thank you!
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I opted out of radiation and no meds. So far I’m ok. I do have diagnostics every 6 mo tho. For me, it’s important to be watching myself with diagnostics. So I’m having MRI in November. Then in May will probably have ultrasound and maybe mammo too. I am three and half years post surgery
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There's a poster named Pipersdream, I believe, who has chronicled her journey to stage IV after refusing conventional treatment. She posts in the alternative forums. You should check her story out, jpk434. She has a unique perspective.
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Thank you for your reply. Yes, I will also be doing diagnostics every 6 months. I wish the two of us much success in this journey
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jpk434:Thank you! I hope all goes well in your journey and recovery. Have a wonderful week.
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Hi everyone. I opted out of anti hormone therapy from the start. I only had surgery. I'm 51/2 years out! So far so good!
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Jpk,
Many patients are "cured" by surgery alone. So the decision to not have any additional treatment might not be that risky for you. But it really depends on your diagnosis. In a discussion thread like this, people with all sorts of diagnoses post; for some, the decision to take no treatment beyond surgery presents a low risk whereas for others, the risk that metastatic disease might develop is much higher.
To me, the key to feeling better about your choice is not what's happened to someone else who had a different diagnosis than yours, but to understand your level of risk and know that this is well within your personal risk tolerance. What was your diagnosis? And what was your Oncotype score? You indicate you had a low score. While that means that chemo isn't recommended, the score also will indirectly tell you how much risk reduction benefit you would get from endocrine therapy, and what your metastatic risk is without taking these meds. If the benefit from endocrine therapy is small, you can feel much more comfortable with your decision.
Note that I put the word "cured" in quotations because the word is contentious on this site. In reality, because breast cancer can recur more than 20 years after the initial diagnosis, none of us can know that we are cured until we die of something else (hopefully not until decades later), without the breast cancer ever recurring. That said, particularly for early stage patients, many of us consider ourselves cured until proven otherwise.
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dtad: thank you for letting us know your story. That’s great to know you’re doing well! Very encouraging!! Hope all continues to go well for you
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Thanks so much!
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Hi Bessie, Thanks for ur reply. With the new posting u should be able to see my “stats” below. In addition to the oncotype score of 17, I have consulted a naturopath, who found about a half dozen deficiencies in my body, nutrients mostly targeting glucose metabolism & cancer prevention. As a young adult, I was diagnosed with hypoglycemia, but the medical community told me to control it with diet, which worked. However, now I have subtle symptoms, such as borderline A1C & morning nausea. I hope to fix the deficiencies with supplements that enabled extra glucose to feed the cancer cells, in addition to having gone off thEHRT, which was also feeding my ER+ cancer. My naturopath assessed that I should have never been on them due to an appearance of estrogen dominance in my history, but the medical community doesn’t test for it. Behold the blood work confirmed it. So in addition to my relatively low risk according to general medical health hx & tumor pathology, I think I have uncovered more subtle health issues that did put me at risk, which are fixable. It is for this reason that I chose to forego AIs. I understand that with hormonal + cancer, the chance of recurrence never goes down to 0, thus the anxiety, (actually I wonder if I have PTSD). Initially, I was going to do radiation, but learned from this forum (& confirmed by MD) that once I get whole breast radiation, u r then locked into a complete mastectomy (I had a partial one with the segmental lumpectomy, followed by onco-reduction), if it were to reoccur. So my plan is to save the radiation for if I need it later with a lumpectomy. There will be freq monitoring done, & of course, the plan will change based on what happens. Medicine has a tendency to over treat, which is why there is research now going on stating u don’t need this & u don’t need that. Also I believe Big Pharma is involved at some level, which is why I also have trust issues with medicine.
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