My choice--refusing treatment
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jpk434:that’s interesting! Thanks for sharing your journey with us. I chose no hormone blockers and no radiation as well. No radiation for the same reasons, my dr told me mastectomy next time if it returned if I chose radiation. My MO supported both decisions which I am thankful for. Have new MO now. My last MO is not seeing pts just teaching now I believe.
I don’t see your stats below your posting, just so you know.
Have a wonderful week!
Tam
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Jpk, your stats are still not visible on your signature line.
I don't have a copy of an Oncotype report for a 17 score, but I do have the TAILORx study, on which the current Oncotype recurrence risks (for node negative) are based.
Here's a chart from the Appendix of the report; I've highlighted a 17 score. I included both the 'aged 50 and under' graph, and the 'over age 50' graph because I don't know how old you are.
What this is saying is that at an Oncotype 17 score, someone who takes endocrine therapy will have a 9-year risk of metastatic recurrence just below 5%. Since endocrine therapy reduces metastatic risk by about 1/3rd, this means that without endocrine therapy, 9-year metastatic risk will be approx. 7%. What could change this, either increasing or decreasing the risk, is if something about the patient or her diagnosis is way off the average, i.e. a tumor that is significantly larger or smaller than average (average tumor size in TAILORx was ~1.75cm), if the grade of the cancer was higher or lower (the average in TAILORx was grade 2), and if the patient is significantly younger than the average (in the '50 and under' cohort) or significantly older than average (in the 'over 50' cohort). The Oncotype report that patients receive don't reflect any of these differences - everyone with a 17 score will receive the same recurrence information - but Oncotype provide to MOs a separate computer model that allows the MO to recalculate the risk by applying these factors (age, tumor size, tumor grade, and whether the patient will be taking an AI or Tamoxifen) against patient's specific Oncotype score. This is the Oncotype RSPC model (Recurrence Score Pathology Clinical).
In any case, unless your diagnosis or age is way off the average, it appears that the extra metastatic risk that you face by not taking endocrine therapy is in the range of 2.5%. For many patients, trying endocrine therapy is worth it for that additional risk reduction benefit, but for other patients it's not.
Jpk, since you said that "The medical team cannot or will not understand my decision" I would suggest that you ask them for their take on the information I provided. I'm pulling it from the TAILORx report; it would be interesting to see what your doctors tell you about how much additional risk you are exposed to by not taking endocrine therapy.
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Beesie that’s a great point. I had told my MO sorta the same thing....my recurrence rate was low and I sited low amount of studies proving the other sides point of view (take hormone blocker or not). MOdid agree not much out there in the way of proof for stage 1. Probably because it is stage 1. The studies that were out there didn’t scream to me and my husband that I needed them to get a ton lower recurrence rate. So I chose none. But again that’s not to say everyone should do what I did. 😁
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Don't be uncertain, Jpk434! It makes sense to me too, to skip the toxins and work on increasing your body's state of health. Especially in this day and age, it would be scary to wipe out your immune system, when it seems that we may need it to survive Covid19, if contracted.
It does make sense to continue on with diagnostics, Jons_girl. Whether going with traditional treatment or not, we all need the encouragement of positive results to stay on track. Congrats on your three and a half years!! I am two and a half years post-surgery and looking forward to my next 30 years, Lord willing I get to live till 90! lol
Violetkali, you are right, quality of life IS very important and should be included in ones deciding factors.
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Lori: thank you! Congratulations on your 2.5 years!! Yes I hope to be cancer free forever going forward!
I'm waiting a bit to have my next screening diagnostic. This time I will have my first bilateral breast MRI because of a study I'm joining. They are studying whether DWI(uses MRI machine but no contrast) can see breast cancer just as well as contrast MRI. I'm hoping that's the case in their study so women don't always have to have gadolinium contrast with their mri diagnostics. I thought it was a very useful study!
Anyway long story but my mri has been a bit delayed because of the study mri machine breaking down. Now I'm going to be doing the diagnostics at a different study site closer to me that just joined the study.
Study link for those in the PNW who might like to join the study
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hello,
I found a lump myself on my left breast. My surgery will be in a few weeks and I’ve decided on a bi lateral mastectomy. Cancer runs rampant on both sides of my family including my sister, mom and grandma. I’m estrogen and pro positive, Her2 negative and have been tested for 84 genes, all negative. The say I caught it early so I am being proactive. I had a benign lump removed 3 years ago on opposite breast. My choice is no treatment but I feel so much pressure from the doctors. I’ve been taking loads of supplements for years, plus my iodine. I just started drinking Chaga mushroom tea daily, Flor essence detox daily, flax oil daily and am considering oxygen drops. I have no idea if it is in my lymph nodes til after surgery. Is anyone else trying to do alternative methods to stay away from the pills and chemo? It’s hard to find suggestions when everyone leans towards the conventional route. I’ll take any advice or direction I can get
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hi Denise.
You never shared your tumor stage or grade. Can you share that info?
I only had a lumpectomy. I chose no radiation or meds. I didn't need chemo due to my stage/grade and tumor info.
I had gene testing too. I have a variant of unknown significance in the Axin gene I think it was. So basically all negative too.
Chat when you have time. Blessings.
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Denise...yes I only had a BMX. No other treatment. I lost 30 pounds and try to exercise daily. I also take several supplements. Its been 6 years since my diagnosis. So fa so good! Best of luck to you.
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I'm currently planning surgery and have been going back and forth on whether or not to try an AI. I've always been reluctant, but after trying Tamoxifen and seeing how my blood sugar, triglycerides and cholesterol soared in six months, making me prediabetic, and being told I may be a non-responder since my DCIS increased - I have more of a struggle with this. If the drug makes me diabetic, could improvement from the drug be offset by diabetes and inflammation from that? What about my QOL, having to watch every little bit of sugar I eat, being vulnerable to nerve damage, blindness, amputation... plus I already have arthritis, which I know will worsen on the AI. And I have osteoarthritis, so the osteoporosis will be inevitable.
I may just try one for six months and see what happens with my blood sugar and triglyceride levels. I have a low BMI so I have no room to lose more weight, I would then be underweight. I'm also fairly active, although I could increase my aerobic exercise more in the winter. I have been working with a nutritionist and managed to reduce my cholesterol by 70 points, but part of this time, I've been off of Tamoxifen. My triglycerides - not sure yet if I am moving those back down yet. I have been monitoring my blood sugar fanatically for a few months now, and I saw a drop of about 10 points in fasting glucose shortly after stopping the Tamoxifen. My fasting glucose increased more than 30 points when on Tamoxifen! My biggest doubts are - how much will an AI even reduce my risk with DCIS? I did the PreludeDx test and I have a low score - it showed that radiation would have a negligible benefit on my recurrence risk. I wish that I knew the true benefit of an AI with my personal genetic make up!
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Hi PAKNC, You have been through a lot. Tamoxifen decreased my cholesterol some of the other ones like letrozole will increase it. Did you have a liver function lab done? (CMP)? Before BC I had a fatty liver diagnoses. My triglycerides level started to elevate. My doctor said to reduce carbs, but I was unable to do it until this past October. I went on the Keto diet for 6 weeks and then started a low carb diet. My liver panel finally came back normal. My triglycerides are now within normal limits. I feel much better. I had gain about 20 pounds I needed to lose. Best wishes.
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thank you for replying. I do not have a Stage as of yet. My surgery is Feb 25 and that’s when we find out about the lymph nodes. I also have questionable calcifications so that helped in my decision
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thank you. Trying to read a lot of stories here
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Flashlight, thanks for the background on your story. I am planning to ask my nutritionist about the carb restriction and more of a keto orientation the next time we meet. I would say that potentially, I had an average to aging liver pre Tamoxifen and potentially, I have the genetic predisposition that was tipped by Tamoxifen and stress. I was under extreme stress the year before diagnosis with a job that required travel, working all the time and then, the first 3 months on Tamoxifen, severe nerve pain from dental surgery. Labs done pre-Tamoxifen and dental surgery in May 2020 showed an A1C of 5.0, liver and kidney function was not as good as 2018 but still normal, however I was anemic. Then, in October 2020 - A1C was 5.7, and I was even more anemic. Also, liver / kidney function was worse and no longer in the top normal band. The anemia was not present in 2018. My iron level is normal so my PCP passed off the anemia as normal for me, but I did not and questioned - why is it worse than May and wasn't there in 2018? My nutritionist agreed that there's something going on.
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Hi dtad, bessie, Monetswaterlillies and all others. I'm 65 years young, so most similar to you dtad, in my diagnosis and choice of no hormonal treatment because of my low risk as best they can tell. But if I was in my 50's or younger, maybe I'd not be so certain. I don't feel my age, was always healthy, but have stepped it up with more exercise and many supplements. I discontinued hormone therapy replacement therapy in May after my diagnosis. I felt it did me favors, even though I was on a low dose. I was on them for 10 yrs. which is not recommended. My heart and bones benefited. ( had above normal bone density, and good heart blood pressure, etc.) , but it may have caused/ contributed to my cancer, dr.s say not necessarily, so who knows? Anyway, I'm now getting hot flashes, hair thinning, most discouraging is high blood pressure and am taking a med for that.
Supplements include mushroom extract, DIM, curcumin, melatonin, and also recently added calcium D glucarate to help increase estrogen elimination from the body. Found these with my own research, and by no means am I a medical professional. I look at the NIH website and Nature.com at medical studies. Sadly, many are never completely finished because more trials and research needs to be done. Everything takes many years. However, I think they don't get as much support/ money from pharma. And if they want to discuss serious side effects as a reason not to approve, it can be said that current approved meds have several. Other men and women on this and other platforms were helpful with natural supplements. I'm currently looking for a cancer specialist/naturopath that can give input, tweak the amounts, etc. This is what I chose, what I feel is best for ME.
Bessie you are so helpful in these threads, and I'd encourage those younger, like waterlillies to consider options by the medical team, combined with your own research ( which needless to say is very time consuming and needs to be highly reputable).
My best and much love to all!
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Denise how did your surgery go today? When you have recovered can you update us? Sending a hug your way.
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PAKNC Does TAMOX impact glucose ?
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Here are a few articles that discuss insulin resistance and breast cancer. I think one needs to be somewhat predisposed to the metabolic disorder but research indicates a statistically significant increased risk of diabetes. The first article discusses the endocrine therapy and diabetes link for some women.
https://www.breastcancer.org/research-news/link-be...
https://wjso.biomedcentral.com/articles/10.1186/s1...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC70450...
The last article notes that "While it is not standard of care to test for insulin-resistance during the course of breast cancer screening and treatment, it is standard of care to screen and test high risk women for insulin-resistance as part of whole woman care. Given the important role insulin signaling plays in driving signaling pathways that promote aggressive cancer biology, more attention should be paid by cancer physicians to screening and treating insulin resistance."
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Hi Leia, I just had a hysterectomy for endometrial cancer. 3 lymph nodes removed and all tested negative. I am supposed to talk to a radiation oncologist in a couple weeks. I have just found the Budwig diet and have begun the protocol. Was your doctor supportive? I live in Kirkland WA and I am looking for doctors who support alternative therapy.
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hello all - i'm interested in hearing from anyone on this thread who has opted out on all or part of the recommended treatments. xo xo xo
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edge of no return:
I chose adifferent treatment option, only surgery. And I get diagnostics every 6 mo.
I was told by my breast surgeon to do radiation and go on hormone blocker post surgery. Said it would probably return. My surgeon changed her tune when my medical onc dr supported my decision. She said I'd probably be fine. My medical oncologist nurses tho were not kind to me. He ended up just going to teaching and not seeing pts anymore (teaching hospital) and I didn't stay at that office. I have a very supportive medical oncologist at a new office who has great supportive staff. It's amazing how much we have to advocate for ourselves
Looks like we had cancer the same year. Has yours returned? Hoping all goes well for you
XO, XO 💐💐
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hello jons_girl! wow our profile is indeed similar. you have been NED since the lumpectomy? and no treatment whatsoever? it's been hard to add info to my profile, a pain in the butt. i had my first dx at the end of 2016, lumpectomy early 2017. surgeon directed me to take arimidex and based on extensive reading thru this community board - OUR GODSEND - i opted to not. i was not in a place mentally or physically to do so. and oh yes - similar to your experience - my surgeon was VERY unhappy with me. five years later June 2021, in a bizarre synchronicity of things, i've learned it's metastasized, a tumour/lesion L1 vertebrae & an indeterminate spot on 1st rib. this time it's arimidex & ibrance. i made it 5 months without side effects. i can handle pain, but not exacerbated fatigue - i have fibromyalgia and already fight like a motherf*cker to keep myself afloat: in 2017 i made a 180 in my diet and started working out w a personal trainer, who i am still with today. things go to hell when i can't get out of bed for days on end and i absolutely will not jeopardize my job by missing work. i will be doing radiation to the spot and will like to see what goes from there - same as you, diagnostics every 6 months. this has been an unnerving decision; will my mo & ro now dismiss me as a person/patient? i'm sure i'll be viewed as not trying hard enough. thanks again for your response and will love to hear more about your experience.
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I hope that you are bearing in mind that metastatic bc is a whole different animal than lower stage bc. Your horse is out of the barn so to speak. I don't think anyone would say you're not trying enough. Despite what you read here, many folks do not have intolerable se’sfrom AI's. A support site is not a true representation. I have had over 10 progression free years on an AI alone which has allowed me to live an almost normal life. I am not suggesting that this is the way for everyone but just hoping you don't shut doors. Comparing your situation to those who don't have MBC is unrealistic IMO.
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exbrnxgrl - you've hit the nail on he head so many times here that it's been quite a bit of ringing. horse & barn - ro basically said the same thing; the mbc is coursing through your body, despite it not showing on the scans. these shares are indeed lending thought to omitting the ibrance and giving the arimidex its' own try. and i try to keep in mind that trying to compare my path to anyone else's is folly; i've been taking everything with a grain of salt since the day i got dumped out on the sidewalk after the on-the-spot biopsies that had just been done, when i had had a day of running errands planned. BAM!!!
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edge,
That is one one of the crazy making things about bc; two people can seem to be very similar in terms of dx but their treatments, even if they are the same, can effect them differently. It really is frustrating. Again, I want to emphasize that cancer confined to the breast won’t kill you. It’s the metastasis to other organs that is incurable and fatal for almost all. Lower stages are trying to prevent mets. At stage IV we’re just trying to keep the weeds down before they destroy the garden.
Taking an AI only is rarely the path most people with mets take these days. As I mentioned earlier drugs that most mbc patients take with an AI were not approved 10 1/2 years ago. My mo is fine with me just being on an AI as it has worked well for me. She sees no reason to add Ibrance or anything else. I think it’s worth asking about given that you have limited bone mets. Take care.
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edgeofnoreturn: Sorry for my delayed reply. Yes I'm NED since surgery. No treatment except surgery. Exbrn is right we can't compare each others dx's. We are all different which is true. I am thankful it hasn't returned for me but it may return and I'm ok with the decisions I've made. I've actually read many stories now of people here who have had awful AI experiences. So while it may not be the best comparison as exbrn says, it does show us that women have a lot of trouble with AI's But not all women do I'm sure. It's great exbrn doesn't have issues with her AI.
I'm a pretty strict plant based eater now. And I'm trying to actively remove stress from my life. The stress factor is something that really makes a difference in my life. I'm still learning how to make my life much less stressed. I don't think all of us on this site that have gone through cancer are type A very driven people. But I've met a lot on this site who are that way. I tend to be very driven it's not a bad thing But it's not good for a persons health to be so driven and busy that you can't take time to relax and enjoy life. Im learning to learn to cut back in my life.
Im sorry to hear about what your going through with your fibro and Mets. 💕That's a lot. A friend of mine has fibro.
Our dx were somewhat similar the first time you had cancer. But my grade and stage were different. Grade 3 is supposedly much more aggressive than Grade 1. I do think there are people in this forum however where their stage 1 cancer returned. I Don't know much about howgrade plays a role in Mets and returning cancer?? I'm definitely not a expert.
If your MO and RO dismiss you, I'd find new ones. You should have support and if they don't fit that description there are many others to choose from usually
We are here for you. Chat anytime. Sending love andsupport to you💐💐
Edge and exbrn have a great weekend
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Grade is an indicator for aggression but like almost everything related to bc, it’s not set in stone. Both my breast tumor and my bone biopsy were grade 1, so yes, even grade 1 can metastasize. However, once you have mets, the grade becomes less important as the only goal at that point is to contain the progress of mets. Metastatic breast cancer and early stage bc are different animals.
To be clear, I do have some se’s from AI’s which is why I have switched between all three. My hands and knees experience joint pain but I manage with naproxen sodium and cannabis so it has not had limiting effects on my everyday life. I taught first grade for years before my recent retirement and still sub 2-3 days a week. Obviously I couldn’t do these things if the AI effects were crippling. Clearly the best se is being alive and mostly living a normal life for over 10 years with no progression.
As for diet, I do what a lot of stage IV folks do. I eat what I want when I can. I follow no regimens or protocols and am not compulsive in any of my health habits. This doesn’t mean I live on candy bars and pizza, it just means that moderation in all things works for me. Take care all.
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Exbrn: you don't have listed under your posts about your dx both times. Sorry if I'm being nosy. Can you share that with us? That's interesting to me that both dx you were grade 1. What stage were you at the first dx? And we're you positive er and pr and her2-? If you don't want to share that's ok. Just wondering.
Also, if you don’t mind sharing, how was your Mets found? Maybe you shared that already on this thread.
I'm sure there are lots of people who do just fine on AI's. No worries. That's good you don't have bad se's. Some women do have that.
For me, it was the right decision to not go on tamoxifen at the time I was pre menopausal. I'm post now.Yeah I am a moderation diet person too. I am plant based. But occasionally eat stuff I wouldn't normally eat. I try to eat as healthy as I can tho most of the time.
Hope everyone has a great week!
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I only had one dx, but let me explain… I had a bilateral mx and was staged IIB. Six weeks later, on an unrelated PET, my bone met was found and then confirmed by biopsy. Since it was 2cm and a grade 1, it was agreed that I was actually stage IV de novo and never actually IIB. Yes, I am ER and PR + as well as HER2-.
With respect to AI's, of course I realize that not everyone does well on them. My point was that if one is stage IV, like edge of no return, we are talking about very different situation than lower stages. At lower stages we are not talking about a terminal disease, at stage IV we are! Stage IV is incurable and folks like me are outliers.Stage IV is a whole different animal than lower stages.
I removed my dx line because it was a mess after the site update. Too lazy to try to re-enter it. You are welcome to ask me anything as I am very open about my mbc.
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jons_girl and xbrnxgrl - thank you again for your input. i started my mbc journey just last year and am clumsily mucking through it all. i follow the stage 4 forum discussions for bone mets, arimidex and ibrance and a couple of others. i'm finding myself re-reading what all of the fantastic people have posted two or three times, and i get a new perspective each time. still trying to get my signature line to make sense. haha that may never happen.
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Hi Exbrn sorry it’s taken me forever to post after you shared your experience above. Wow. Thank you for sharing what you’ve gone through. your grade was same as mine. Tumor was larger but er/pr and her2 same. Your dx just shocks me and how that all happened. There is just no good diagnostic for cancer. It seems like others have these stories. Where it was missed. If I had not felt my tumor, I don’t know when they would have found it. It wasn’t on the diagnostic mammo I got a copy of the dvd to see if I could see it. Dense tissue. I can see the stickers they put on two areas to check. But the tumor isn’t there. Ultrasound tho saw everything even the blood source to the tumor. But I think the system isn’t good for checking women for breast cancer. Mammos aren’t perfect. But there are women here who have had ultrasound miss their cancer. I am adding mri every few yrs. I think mri is a pretty good diagnostic. I have diagnostics every 6 mo. Thats my treatmentsurveillance. Because of no drugs or rads. but I’m ok with that. Yes your right about the AI’s and lower stages of cancer vs denovo.
edge of no return: you’re welcome. We are always here for support. Sorry it took me forever to reply.
I hope you both have a wonderful week!
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