Not choosing to take the anti-estrogen therapy
I would like to know if anyone has chosen NOT to take the anti-estrogen, aromatase inhibitor therapy when recommended. No MO would recommend this of course of action, so this would have been a personal decision. It's really a quality of life issue--I simply do want to deal with the nasty side effects of the Tamoxifen and/or the aromatase inhibitors.
Comments
-
I am giving myself a break from Femara to see if the muscle and joint pain is truly related or just me not exercising enough. I will give it 3 weeks to see if things improve.
I am anxious to hear others responses and I wish you the best. In the end, it is our bodies, our lives and our decisions and if choosing quality of life takes 5 years or so away from, for me, I say so be it!
Chris
-
It's worth trying the meds, it is possible that you won't have any SEs. I had none when I was taking Tamoxifen. Now I'm on Arimidex and experiencing joint pain. I'm fine once I get things moving, so I'm sticking with it for now. You mainly read horror stories about the AIs because people don't tune to post if things are going well
-
BeachMom2018...hi there. FYI this a very controversial subject on this forum.Whenever anyone asks about not taking them it is not received well. The bottom line is 40-50 percent do not complete the recommended years due to side effects. There is an alternative thread that is mostly positive. To answer your question I refused aromatase inhibitors from the start. There were many reasons for my informed decision. The biggest was probably QOL issues due to poor health at the time of my BC diagnosis. I wasn't willing to compromise my QOL any further due to side effects of anti hormone treatment. However I would like to say that I was 62 and stage one. I had a BMX but nothing else. I lost 30 pounds and try to exercise daily.Weight loss and exercise has been shown to reduce recurrence rates by 40 percent. I'm almost 4 years out and NED. You should be aware of all side effects possible, especially the serious ones before making your decision. My best advice is to your homework. It's your body and your decision. Good luck and keep us posted. I would be happy to answer any other questions you may have.
-
Thanks for your (and everyone's) honesty on this --controversial topic. Every doctor I speak with downplays the side effects. I have been ill (nausea/diarrhea) throughout surgeries and chemo and am tired of feeling lousy. I hear only anecdotally of the nasty side effects and lead such a healthy lifestyle that I am loathe to add more poison to my body without knowing all the "facts".
-
BeachMom -- First off, thanks for mentioning this tool, the CTS5 calculator, I had not heard of it before. And as I'm in a similar boat as you, trying to decide on Tamoxifen due to QOL issues, this is an important topic for me so I'll chime in. Like others have said previously, do your research and trust your gut. Go with what feels right for you, in the end you have to live with the choice, not anyone else. I'm still in the process of deciding, it's been rough having to transfer over anti-depressants to one that will not interfere with the Tamoxifen. There have been soooo many SEs in just that ONE move. Being a Spoonie, well, I'm pretty sure Tamoxifen will lead to the rare SEs for me, as that's just how my body handles things in the past.
Wishing you the best as you navigate this difficult decision.
Here are some posts, links that have been helpful to me. Perhaps they will help you as well.
Bottle Of Tamoxifen
https://community.breastcancer.org/forum/78/topics...
Does anyone refuse hormone therapy altogether?
https://community.breastcancer.org/forum/78/topics...
Tamoxifen absolute vs relative benefit--is it worth it?
https://community.breastcancer.org/forum/78/topics...
Opting Out
https://community.breastcancer.org/forum/78/topics...
My choice--refusing treatment
https://community.breastcancer.org/forum/121/topic...
Does DIM really work?
https://community.breastcancer.org/forum/79/topics...
Is there any one who felt good on Tamoxifen?
https://community.breastcancer.org/forum/78/topics...
Does anyone say no to Tamoxifen?
https://community.breastcancer.org/forum/78/topics...
Has Anyone Felt BETTER On Tamoxifen?
https://community.breastcancer.org/forum/78/topics...
Planning to forgo tamoxifen?
https://community.breastcancer.org/forum/108/topic...
Pros & Cons Of Tamoxifen
https://community.breastcancer.org/forum/109/topic...
Anyone quit ANY form of estrogen suppressor super early?
https://community.breastcancer.org/forum/6/topics/...
-
I would like to point out that CTS5 tool is for patients who are recurrence free at 5 years, after taking hormonal therapy. So, clearly not applicable for anyone who is trying to evaluate their risk of recurrence soon after diagnosis and without anti-hormonals.
As far as philosophical question of whether or not to take anit-hormonals, there is plenty of information, and a lot of anecdotal evidence regarding side effects in the links posted by Spoonie. However, I feel that in order to make an informed decision one needs to understand the information presented. So, please, read carefully, and ask questions when you don't understand. Statistics can be a complicated thing, and when it is used to evaluate risk, it's imperative to understand what different numbers, percentages and scores mean.
-
Good points, thanks!!
-
I am really struggling with this upcoming decision too. I will be on AI after Dec rads. I just don’t think I can afford any bone loss. Already have degeneration in cervical spine which causes periods of debilitating pain. I’m also into running which helps alleviate my anxiety and depression. Don’t know what I’ll do if my knees go. Already wake up every night in a pool of sweat since I can’t take the HT that may have gotten me into this bc mess to begin with. MO says my 5% recurrence rate jumps to 10% if I don’t take it. It’s definitely a tough call for some of us
-
Cherryi3...just want to say I know what a difficult decision it is. Did you know that exercise/weight loss has been shown to reduce recurrence rates by 40-50 percent? That's actually the same reduction rate as anti hormone therapy. Obviously the best case scenario would be both anti hormone therapy and exercise/weight loss. The problem is that many times that's not possible because the side effects of the drugs make both difficult. I also took HRT for 6 years prior to my BC diagnosis. My doc told me that coming off HRT is treatment itself. To be clear, docs did want me to do anti hormone therapy but I declined for reasons stated above. Good luck in your decision making. Keep us posted.
-
I honestly don't get the calculator. What age are you supposed to enter? Age at diagnosis, 5 years later, present age? For age at diagnosis it gives me "intermediate" , For the others, "high". Doesn't say anything about percentage. My tumor was 96-98% positive. I was on AIs for 3 1/2 years - stopped by onc due to severe side effects. Due to them I have rapidly advancing severe osteoarthritis with big issues in cervical spine area. But I had to do it due to %.
-
HI: Seachain: I stopped Letrozole 6 weeks ago due to severe leg pains, just had cortisone shots in both knees with great results. Now I need to decide whether to try exestramase. I was curious about your post that you stopped ALs due to severe osteoarthritis that is rapidly advancing. I didn't know that once you go off theAIs you continue to have worsening damage.
-
I figure, why not at least try it. I did, started Tomaxifen October 8, took myself off November 28th because I was not safe to drive. I was dizzy all the time and the fog/memory loss was worse than on chemo, plus I was trying to work. So I figured I was either going to get in a car accident, get fired from work and lose my health insurance, or risk getting the cancer back because I stopped the pill. I did tattle on myself to the oncologist the day I stopped. I agreed to try it again (why not) but I am cutting the pills in quarters and starting sllllooooowww (despite the fact the pharmacist told me not to cut or crush the pills???). It's either going to be some or none at all. We are re-evaluating in late January.
Bottom line, why not at least try? You can always stop.
-
BeachMom, I throw my 2 cents in since this thread popped up when I was reading some old posts. I had a lumpectomy, chemo at T/C x4 and 6 weeks of radiation. This was back in toward the end of 2011 and at that time I had finally had enough. I started off strong in my mind and body and pushed though all the treatments, but once the Tamox script was in my hands, I was sort of beaten down. I tried the Tamox for a week or so, but ended up hiding in my closet each morning with some very dark thoughts. It felt like the med just set off some chemical change and I thought that I had gone through enough already. I started to take an 81mg aspirin each day because at the time there was some reasearch about it in regard to breast cancer, but I had to get back on with my life. I was raising young kids at the time and they needed me to be emotionally strong and therefore I was done.
Juat making that decesion lifted my spirits and I was able to pull myself back together soon thereafter. I'm now 7 years out and my mammos are scheduled for once a year. They are also regular screenings without any extra diagnostic stuff. For me, it seemed the sooner I moved on from all the treatment, the better I would be. So far so good. Wishing you good health.
-
Hello,
I am struggling with so many decisions. My Oncotype DX score of 29 indicated I should have chemo, but I said no. Now I am waiting for genetic testing results and hoping they won't indicate the need for any more surgery. When I started with this process I thought it would be quick and easy, one surgery, radiation and done. But the lobular cancer was more than double what they thought and I had to have a re-excision. Then it was the oncotype worry and trying to make the best decision. Now the genetic worry. The counselor I saw noticed I had an aunt with ocular melanoma and she said there is a link with that cancer to BRCA. I am worried for my family...but won't get results for 2-3 weeks. I am 4 days into radiation and my oncologist supported my no chemo decision as long as I agreed to 7-10 years of AI, starting in February. I am so glad I found this website!
-
Wow Library. That is so much to go through.I guess the most important thing is to be at peace with our decisions. For me, my prognosis is very good with an oncotype of 4 and a small, low grade tumor. I did, however have multiple areas of concern on my imaging and feel like a mastectomy may be in my future. I’m not completely at peace with my lumpectomy even though I jumped at the option of keeping my breast. Spoke at length this week with RO and he assured me that rads would take care of those areas. I’m leaning toward trying the AI to see how it goes. I already exercise and maintain an acceptable BMI. I took HRT to improve my QOL during menopause now I need AIs to undo this mess? I’m confused and mad at myself and the Dr who prescribed the hrt.
-
Perhaps my experience is helpful. I've been on Tamoxifen for about 1.5 years with no side effects that I can discern, aside from a white vaginal discharge. I feel fine, aside from a few things that I attribute to long-term leftovers of my chemo (mainly, sleeping alot). I had an endometrial ablation earlier in life, and I think that reduces my risk of getting uterine cancer from Tamoxifen. So, I'm actually a fan of Tamoxifen.
I was on Letrozole as a neo-adjuvant therapy (pre-surgery) and it proved to be totally ineffective. My doc has said that if the cancer returns, he will recommend going back on an AI, but I would refuse it because it makes no sense to me, and also because I'm scared of the side effects of bisphosphonates (which counteract osteoporosis). Everyone makes their own choices; these are mine. Every day is a gift...
-
For those who are interested I've put together a list of herbs/foods/supplements that are natural AIs. I am not recommending any of these but put together a list so that anyone interested can do their own homework and come to their own decision.
What is Aromatase? https://thetruthaboutcancer.com/aromatization/
As the -ase in its name infers, aromatase is an enzyme. It is located in estrogen-producing cells in the ovaries, placenta, testicles, brain, fat tissue, and adrenal glands. An unhealthy balance of aromatase in the body means that there are higher levels of testosterone and progesterone being converted into estrogen.
Researchers have shown that in breast cancer tissue a high rate of aromatization occurs in patients with both malignant and benign tumors. Human breast cancer cells also contain a high presence of estrogen receptors and signaling pathways which turn on estrogen response gene expression.
The MCF-7 human breast cancer cells are specifically shown to become over stimulated in the presence of estrogen dominance and aromatase activity. MCF-7 cells are able to aromatize circulating estrogen and androgen in order to induce cell proliferation, increased aromatase activity, and estrogen-dependent genetic expression. Changes in genetic expression cause DNA changes with many unknown health consequences.
Natural aromatase inhibitors (including nutraceuticals)
Herbs or herbal constituents:
- Green tea
- Ashwaganda
- Thyme, rosemary, oregano, sage contain volatile oils which promote liver detoxification and aid in the removal of estrogen
- Turmeric is especially capable of destroying estrogen receptor positive cancer cells
- Passionflower (chrysin)
- Nettles
- Kudzu
- Baical skullcap
- Licorice root
- Red clover in smaller doses
- Berberine/Coptis
- Ginkgo biloba: Quercetin and the flavonol kaempferol are the two major components of Ginkgo biloba. These antioxidants are believed to shut off the supply of estrogen to estrogen-dependent cancers thereby inducing cancer cell death. Kaempferol is found in many fruits and vegetables and is a well-known anti-inflammatory used for cancer prevention and natural chemotherapeutic diets
Oils:
- Coconut oil
- Olive oil
- Avocados
- Omega 3 oils
Vitamins/minerals
- Zinc
- Selenium
- Vitamin D
- Vitamin C
- Quercetin at lower concentration
Fruits/vegetables:
- Broccoli (cruciferous veggies)
- Onions, garlic, leeks
- Portobello mushrooms, white button mushrooms
- Lemon/Lime - citrus bioflavonoids including diosmin, hesperidin, rutin, naringin, tangeretin, diosmetin, narirutin, neohesperidin, nobiletin and quercetin
- Pomegranate (ellagic acid)
- Mangosteen
Supplements:
- DIM (Diindolylmethane) https://blog.bulletproof.com/benefits-diindolylmethane-dim-supplement/
- Resveratrol (reduces estrogen receptors dramatically)
- Grapeseed extract
- Astaxanthin
-
I am taking Arimidex and also daily taking many of the foods and supplements you have listed. I roast a mixture of onions, broccoli and other cruciferous vegs, and mushrooms and eat some daily. I also researched foods high in estrogen and have eliminated many and cut down drastically on others.
My last pet scan showed the bone mets virtually gone and the pleural effusion still present but not lighting up at all on the scan. My onc was very pleased. BTW, I have tolerated the Arimidex very well and have a friend who has also. The morning back pain is all, and it goes away with one regular strength Ibuprofen.
I wish you a positive outcome with your treatment. A lot of difficult decisions!
-
I was on AI drugs 4 years, I never stopped exercising it did not help my joint pain in the least. I've been off almost 3 years and still have lingering pain.
-
I decided not to take Tamoxifen and I'm going on 9 years NED. It's a very personal decision.
-
Just stopping back in to say that I finally made my decision not to go the Tamoxifen route due to my Spoonie life.
It's just not safe for me (my immune system, my liver, and mental health).
I totally agree with Mari65 that this is such a very personal choice for everyone. IMO all we can do is do our own research, be our best advocate, and reach a place where we are at peace with whatever decision we make. Cheering us all on while we tread our unique paths.
Also if anyone is curious about the studies I found while doing my research on Tamoxifen (about fatty liver disease risks, immune system effect, and much more) you can find it here: https://community.breastcancer.org/forum/78/topics/868242?page=3#idx_82
Hugs and healing to all....
-
Spoonie I totally support you in this. My running partner ( and person I owe finding my cancer - long story) has also chosen not to take it for various reasons. She is eating vegan, working out like a maniac and living every day like it’s a new adventure. She’s totally at peace with her decision and is doing great two years out now. With all of your research, I’m sure you’ll figure out what else you can do to stay healthy. Wishing you much peace
-
The thing is, they lie to you when they say AIs have no effect on bones and joints.
It is a logical thing: osteoporosis and osteoarthritis are both degenerative diseases that usually appear when aging due to... decreased estrogen in the body. So what will happen when the AIs get the estrogen out?
The thing is, we're between a rock and a hard place. With some of my tumors being 98% estrogen positive, of course I had to go the AI route. But the life long side effects are irreversible.
-
I haven't had any nasty side effects. Just had a few irritating hot flashes at first, which have now pretty much resolved. Well worth the protection I get from these life saving drugs.
-
pompom....thats great! I wish everyone had that experience. Then the compliance rate would be much higher than 40-50 percent! As Ive said many times before we need better treatment options. The compliance rate as it stands is just way too low. Not questioning its effectiveness but if that many cannot tolerate it then its just not OK. Good luck to all navigating this complicated disease.
-
Hi pupmom, can you tell us what you are taking? Thanks!
-
Just to be clear, I support each person’s personal decision. The dread of beginning AI’s due to possible side effects was terrible for me. Luckily, three stiff fingers on each hand, two stiff knees, and a little bit of warm flashes (not crazy hot flashes) are my side effects after 8 months. I can totally live with them for the benefits of the drug. Obviously more people post who are having bad side effects than those of us who are super fortunate and do not have intolerable side effects. For anyone who is reading because they are having a tough time deciding if they want to take them or not, please remember that terrible side effects are not a given. Wishing good luck and good health to everyone!
-
Hi BeachMom, I'm taking Tamoxifen. I did take Exemestane in the past. Exemestane was wrongly associated with severe bone problems I had, meaning femur necrosis. I had two total hip replacements to fix that, but meanwhile had switched to Tam, and don't see a reason to go back. My MO seems just fine with me staying on Tam for another 3 years. Already have completed more than 7 years on anti-hormonals. I'll stay on forever if the research indicates this is beneficial.
-
I’ve also had good fortune with AI (anastrozole); so far no problems except when my pharmacy switched brands from Teva to Zydus I definitely had a jump in hot flashes; not unbearable but annoying. The pharmacy said Teva was ending the manufacture of anastrozole. Does anyone else know anything about this?
I’m going to try something other than the zydus brand but wishing Teva was available
-
TEVA patents may have been purchased and will be produced by Mayne. If the number on the pill matches the one that you liked, they are exactly the same. This happened to me with Tamoxifen and it is fine.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team