Rejecting hormone therapy
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My personal choices, preferences, and decisions based on QOL are very much a *me* thought process. I don't base my decisions on QOL on others, or how they choose to live and treat breast cancer. I would not choose to live a certain way, but that is ME. I have no pity for anyone, I just don't want that for *me*.
YOU do YOU is my motto.
Example: chemo put me into menopause immediately with the first round, and by four rounds in I had two blood transfusions and decided that it wasn't worth it. I IMMEDIATELY began an AI and OS.
I am a NURSE, and was unable to type and even insert an intravenous line. I developed trigger finger and was unable to make a fist. This would be just fine if I could sit on my butt all day and do nothing for the rest of my life, but I couldn't. I didn't care how long the rest of my life would be, I just wasn't going to live it like that.
I've been treated for bipolar depression since I was 16, and have been stable ever since. I've tried to go off medications, and it just did not work, I was unable to function. Tamoxifen is not an option because I take a medication that is very good for me and it interacts with tamoxifen.
I took Fareston, toremifene, without any difficulty, but when my oncologist left the practice and moved no other oncologist would prescribe it for me so I decided that I no longer needed the services of an oncologist and I have been doing fine for the past 5 years.
My Internist orders my yearly MRI for my breasts, I also have tumor markers drawn for good measure.
Every year I have a full Body MRI scan in Florida, because they have a cheap service, because I need to know early if I have brain Mets because I make life and death type decisions as a Nurse.
IF something pops up I will DEMAND Fareston or buy it online if needed. In other countries Fareston is used for Metastasis over AI, and it has a better side effect profile.
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Outcome Without Adjuvant Systemic Treatment in Stage I ER+/HER2− Breast Cancer Patients
- Patients with early-stage ER-positive HER2-negative breast cancer who received no adjuvant systemic therapy (AST) had a 2.5% lower 8-year distant metastasis–free interval compared with matched patients who only received endocrine therapy (ET). Slightly more locoregional recurrences and contralateral breast cancers at 8 years were observed in patients who received no AST compared with those who only received ET.
- The benefits and side effects of ET should be considered for each patient.
Update: This is the link but it is a members only page. I included a link to the abstract a few messages down.
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Pi-Xi - Just FYI, the Annals of Oncology link goes to an error page, and the Practiceupdate link goes to a members only page.
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Pi-Xi: Is this the link referred to in the Annals of Oncology?
"Benefits and Adverse Effects of Endocrine Therapy" https://www.annalsofoncology.org/article/S0923-7534(19)39688-7/fulltext
For a list and links to Annals of Oncology articles on the benefits of adjuvant endocrine therapy: https://www.annalsofoncology.org/action/doSearch?text1=benefits+of+endocrine+adjuvant+therapy&field1=AllField
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Strange that the link did not post properly.
Outcome without any adjuvant systemic treatment in stage I ER+/HER2- breast cancer patients included in the MINDACT trial
https://www.annalsofoncology.org/article/S0923-7534(21)04829-8/fulltext
I was happy to post the information that so many ask for…what happens if you choose to forgo endocrine therapy.
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Pi-Xi - Thanks for this. It came through just fine. It's too bad they only looked at stage I disease. It would be interesting to see what goes on with the later stages.
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For those of you taking letrozole (or the other AIs for that matter) have you had your cholesterol and a1c rise? I posted a thread asking, but I thought I'd ask here too. My a1c is 5.6 was 5.1 before BC and seemed to creep up since starting letrozole. I have taken letrozole for 4 years and tamoxifen prior to that for 3. Also my cholesterol is up as well. I used to always have low cholesterol now TC is 233 and LDL is 116. I do eat sweets so that's gonna stop mostly, but was never an issue before. I think it's the letrozole so was wondering if anyone else taking this nightmare has had these problems? Thanks
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Nancy, your A1c is still in the normal range and you know what you need to do in order to keep it there.
AIs may have some impact but I wouldn’t forget we are not getting younger. Your pre-cancer baseline was from some seven or eight years ago, right? You are not saying how old you are but probably not in your 30s or 40s anymore? As we get older A1C and the rest don’t get better
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lol true I’m no spring chicken anymore. I am 59. Still I feel letrozole is contributing. My cholesterol rose 40 points between this year and last and it did it (rose 40 points) before a few years prior to this rise. Both significant rises I have been on letrozol
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Nancy, I agree with Muska, that's a normal A1c. I wouldn't sweat fluctuations within a normal range.
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thank you. My dr is not concerned about a1c. He said they worry about prediabetes at 6 and over with 6.5 diabetic. I'm really moreconcerned with my cholesterol
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high cholesterol is often driven by genetics and some are more predisposed. Statins do a great job lowering it. Btw, research shows they lower risks of some cancers. https://www.cancer.gov/about-cancer/causes-prevention/risk/statins-fact-sheet
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thank you muska. Yes my husband is on Lipitor and has no problem with it. Interesting that they can lower the risk of some cancers. I have been on hormonal therapy for 7 years (3 years tamoxifen and 4 femara). I did ask my oncologist about temporarily stopping letrozole until my next labs just to see, but maybe a bad idea. I don't know - first I was told hormonal therapy for 10 years then 7, then 10 again. Now my new oncologist wants to run a test to see if I will even benefit from an additional 3 years.
Nancy
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Hi Nancy, do you know what test your oncologist wants to run?
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I don't know the name of the test unfortunately. I thought she said this is new, but the test almost sounds like the Onco DX test since that test was never run on me.
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I am taking letrozole for 2 years. Before bc I had no health issues. Now I have colesterol and osteoporosis. Besides vitamin D and calcium my BS prescribed me a medication to fight osteoporosis. I asked her how long I need to take letrozole. Her answer was that science changes on that but the minimum is 5 years. I am not sure if she said to don’t discourage me and God willing I reach 5 yers without recurrence, she will evaluate the situation. I heart my back a few weeks ago. Before the situation improved within a weak. But until now it hearts. If my BS did not do X-ray to rule out fracture. I would think I broke a bone.
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Hey Margun,
I'm sorry you've been having so many issues. Has your doctor tried you on other AIs/other brands? Failing that, tamoxifen is also an option for menopausal women who do not tolerate AI. Don't put on a brave face with your doc - it's their job to help you with this but it's easy for them to skip it if we don't insist on the severity of the side effects.
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Muska it is the BCI (Breast Cancer Index) test they are running.
Margun I agree with Salamandra about either switching to another AI or trying tamoxifen. My oncologist told me that letrozole is the least likely (but still can) AI to cause joint pain. I really haven't had joint pain on it, but I still believe it's raised my cholesterol.
Nancy
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My cholesterol was up but not horrible. Dr suggested fish which I do not like and less red meat. We buy part of a cow every year so we do eat too much. After reading everyone's comments maybe I will try the Letrozole in am. I have to take a thyroid pill in am and wait an hour before eating so I could try the AL at lunch. I sleep ok but the leg cramps make me take forever to fall asleep.
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How do you know which tumor marker tests to ask for? I was treated (chemo, surgery, radiation) by a supposedly top facility, but they offer zero survivorship plan help unless I agree to do endocrine with them. I probably won't be doing endocrine, but even if I do, I am angry that survivorship support is "conditional" on following their plan to the letter. My primary care doctor does not want the responsibility. So it's on me to monitor my own follow-up care. I am at a loss about how even to research it.
Thanks for your posts.
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My PCP Is ordering anything I ask for. She understands that I chose not to take hormonal therapy, she supports my journey. I didn't find another oncologist because my primary care provider said she would order anything I needed, and then if something were to pop up then I can see an oncologist if I need it.
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Not sure if this thread is still active. After researching AIs, I've decided not to take them. My dexa showed osteoporosis in my hips so my onco said he'd put me on prolia. After doing the research on the risks of spontaneous femur fractures, plus the 2% bone loss/yr on AI's. I'm an avid hiker and certainly don't want to risk that. So I thought I could do 10mg. tamoxifen. But when I started over a week ago, within 8 days I had pelvic pressure and pain, one of the side effects listed to consult the dr. Looks like I'm not a good candidate for these drugs. Do people have things they are doing for reduced risk if not taking hormone therapy i.e. Turkey tail etc.?
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I too have osteoporosis and went with Letrozole anyway, but declined the bisphosphonates due to their horrible side effects on top of those of the AI. For my bones I do 6 organic prunes a day, along with working 2-6 TBSPs of organic first cold pressed, extra virgin olive oil into my daily meals. So far my bones haven't been any worse than when I started the AI 2.75 years ago. I'll know more this coming January when I hit the 3 year mark and get another Dexa.
Re what might help if not taking an AI, they say that 30 minute daily walk and keeping your weight in check can provide as much benefit - at least that is what some on here have said their doctors told them. (It's about a 35% risk reduction, I think.) Some of us also do intermittent fasting (eating only within an 8-10 hour window during the day and fasting over night), along with moving to plant based diets, more fish, etc. I do it all, and I have no idea just what might be really helping or not, but I'm holding out for some of this stuff to work. I also drink green tea daily and have a daily serving of real mushrooms, not Turkey Tail capsules, although they might be fine if you take enough of them. From what the research shows, you have to take way more than what the Turkey Tail bottle says to get the effective dose they used in the study.
Here is a link to the FoodforBreastCancer site and their comments on mushrooms. Looks like regular old grocery store mushrooms work just fine. Those are what I've been using for over 3 years now - every day.
https://foodforbreastcancer.com/foods/mushrooms
Hope this all is some help. I really "hear you" about the reluctance to take the drugs.
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in Canada, my only option was Tamoxifen (only drug approved for DCIS). I felt pressured to start but four months in I was diagnosed with type two diabetes and my thyroid numbers were really off (I have Hashimotos). I’m taking a six month hiatus from the drugs and will test again. I am a very healthy 65 year old, lift weights, walk 15,000 steps every day and eat zero sugar, very low carb. I have an allergy to wheat and really don’t tolerate any grains. I am an outlier….I don’t believe that a plant based diet is healthy, but that’s my opinion. I definitely do not eat any seed oils.
I too have osteoporosis and refused prolia although it improves density, it does not improve bone strength. I take K2 with vitamin D3, do strength training and eat lots of bone building protein. My previous diet was what is considered very good, with low fat and lots of veg….all that did was make me bloated and tired. My new fat and meat based diet has given me energy and I feel fantastic. I also eat in a small window of time…between 11 and 6, so a seven hour eating window…I am never hungry. Right now this is working for me and I am thrilled.
I’m hoping my remaining years are filled with travel and fun….not wanting the side effects from a drug I don’t want to take. Maybe a gamble but I do everything else to reduce any risk, and what I do has zero adverse side effects.
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Threetree and buzzbomb, thanks for your responses
"Re what might help if not taking an AI, they say that 30 minute daily walk and keeping your weight in check can provide as much benefit - at least that is what some on here have said their doctors told them. (It's about a 35% risk reduction, I think.)"
That is interesting. I probably hike a few miles or more most days. I'm allergic to most all grains, so eat mostly protein, fruits, nuts, veggies. So maybe the 35% reduction will help then. I have friends who had only surgery/radiation and never did estrogen reduction pills and now, years later, are fine. It's a big gamble.
I had a very traumatic delivery of my son years ago, lots of injury to my pelvis. I think the tamoxifen, which increases estrogen to the uterus while it reduces it to the breasts, just stimulated some of my previous trauma, causing pelvic and back pain. If the ultrasound I'm scheduled to have this week shows nothing, which I suspect because I had no symptoms until the Tam...I might ask my doctor about Evista (raloxifene) as an alternative to try. It's just a little less effective than Tamoxifen but doesn't send estrogen to the uterus.
All hard decisions.
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I was advised by a visiting nurse who sees metastatic cancer patients at home that getting to a healthy weight and daily exercise can reduce risk of return cancer by almost 50%, which is what the reduction in risk was for me if I'd continued taking the hormonal therapy. So far I've lost 20 lbs (20 more to go), and have increased the speed and distance of my daily walks. I think I'll join a gym soon to get in some weight lifting exercise. I'm using weight loss products and nutrition products from BodyHealth, Dr. Minkoff started that company some years ago and is an alternative clinic owner of LifeWorks Wellness in Clearwater, Florida. I can't afford the treatments used in their clinic, but can afford the BodyHealth supplements.
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If I didn't have positive nodes and young kids, I would have refused anti-hormonal medications. I am a health nut, slender and a yogi however, I am diagnosed with breast cancer that has spread to lymph nodes. If cancer comes back, I know I have done all I could to be alive to take care of my kids. The rest is not up to me. We had wonderful sisters in this forum who did everything right and they got a recurrence that killed them at a young age. We have other sisters who refused therapies and are still enjoying their life. Who knows how this beast thinks!
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I totally understand LillyIsHere. Yes, breast cancer IS a wild beast, hard to tame and predict. Your situation with young kids and positive nodes requires a different way of thinking than my own choice. I sort of consider myself "old" already at 66, my kids are all adults in late 20's and 30's, and I don't even have grandchildren. My mother passed away at 48 of liver/colon cancer, so I've almost had 20 more years than she did, and my grandmother passed of the same disease. I feel very lucky to have not gotten that type of cancer. I for sure respect you greatly for your decision to struggle through the hormone therapy. In a way I took the "chicken way out" as I could not confront what those pills were doing to my mental and physical health. All of us have to make our own best personal decisions and hope for a good outcome. Luckily, I also have religion and believe in life after death, which helps my mental mood daily. But only time will tell. It makes me smile that you describe yourself as a health nut! Maybe I will have to get more active myself.
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my mother just had lumpectomy for early breast ca. she has severe osteoporosis. We are considering skipping tamoxifen or arimidex. I was reading on blackseed oil. Seems like it has anti cancer properties and is also being researched for breast ca. so I, thinking of giving her blackseeds or it’s oil than AI or tamoxifen.
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Well, I didn't do the bisphosphonates, did Letrozole every other day, and consumed the prunes and olive oil noted in my above post, but now it's 4.5 years from diagnosis (large 5 cm tumor, no nodes, no spread at time of diagnosis) and I just learned yesterday that the cancer has metastasized to my chest bones and spine. Not sure what next steps will be.
People do have recurrences even when they take the AI's. I would appear to be one of them, but am suspecting some of that spread to bones was already there at diagnosis, just not apparent. It's a real hard call for all of us who have to make these AI/bisphosphonate decisions.
In the end, it really is all just a crapshoot!
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