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"Roll Call" for those who've stopped Hormonal Therapy early - short post to share status?

oldladyblue
oldladyblue Member Posts: 300

If you quit or reduced hormone therapy and don't mind sharing future status at least once a year, could you share concisely current cancer status (no evidence of disease, metastisis, new breast cancer) or other health facts? This will give an easy to follow thread of results of quitting. It is such a gut wrenching decision to quit. I am haunted by it still. What do you think? Would you sign up?

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Comments

  • oldladyblue
    oldladyblue Member Posts: 300

    Age 64 at diagnosis. Oncotype score 28. Started Anastrozole Mar 2022, Stopped Jun 2022, refused to try another AI. My emotional roller coaster, physical pain, and insomnia all bettered after I quit. MO OK with my decision. Mammogram Aug 2022 NED (No evidence of disease). Blood tests all good except for very high cholesterol and almost pre-diabetic now.

  • nomeds
    nomeds Member Posts: 17

    After weeks and weeks of agonizing over the decision and going back and forth, I finally (for now) decided NOT to start tamoxifen (the preferred ET for me since I have osteoporosis). I decided that drugs (estrogen patch for 8 years after a hysterectomy at age 44) likely caused or at least contributed to the development of the cancer in the first place, and I couldn't stomach the thought of all the horrible side-effects and feeling like crap every day of my life for 5 years. And also not knowing if I would ever feel "normal" again after stopping the drugs.

    My first diagnostic mammogram since the diagnosis will be in Feb. 2023. And I will also have an ultra-sound done right after that, because I have extremely dense tissue and an ultra-sound caught the cancer (VERY IMPORTANT: a mammogram did NOT detect the cancer).

  • nomeds
    nomeds Member Posts: 17

    oldladyblue, I need help with the profile info not appearing after my post (with the Dx info, etc.). I just added all of that info to my profile but it's not appearing. I'll try to figure it out. TY

  • oldladyblue
    oldladyblue Member Posts: 300

    Hi Nomeds, I understand, mine isn't the way I want it either. Maybe ask a moderator?

  • summerangel
    summerangel Member Posts: 182

    I'll check in. I started Tamoxifen (was premenopausal) June 2015. Stopped after bad side effects around November 2015. NED ever since.

  • buzzbomb
    buzzbomb Member Posts: 45

    checking in. Started tamoxifen in June 2022 and stopped in October 2022 due to disturbing bloodwork. My blood sugars and A1C both high and I’m now a type two diabetic! Really odd for someone who does not eat sugar, eats very low carbs (less than15 grams a day), exercises daily and is not overweight. My thyroid numbers (I have Hashimotos) we’re wonky also. I was hesitant to even start these estrogen blockers as I thought it was over treatment for a super small DCIS and a micro invasion. I did do a short radiation course. Lumpectomy was perfect with great margins.

    I am 65 and don’t want to deal with life altering side effects….nope, not doing it. Waiting on imaging for affected breast, it wasn’t ready when I went for mammogram due to radiation. Right boob is perfection.

    Will follow up in six months when my bloodwork will be redone.

    My family doctor s totllay supporting my decision, she’s amazing

  • maggie15
    maggie15 Member Posts: 753

    Never started the recommended 10 years of HT that would likely worsen my osteoarthritis, osteoporosis, high blood pressure, pure cholesterolemia, thyroid issues, silent GERD/Barrett's esophagus, and family history of stroke never mind the menopause symptoms and brain fog. 9 year chance of recurrence with AIs is 14% so I am taking an extra 8% risk. So far so good but my type of cancer is more likely to recur after 10 years (69 at diagnosis.)

  • inthesage2
    inthesage2 Member Posts: 17

    I firmly decided after research that I would not take an AI. I am a very active 68 year old and my DEXA score came back high for hip osteoporosis. I also have auto immune arthritis and AIs can cause joint pain. My oncologist said they'd put me on Prolia while taking the AI. A doc at my friend's clinic who is a specialist with older patients says she'd never give the drug for older people except in emergencies. It can cause spontaneous odd femur breaks.

    Regardless, I started Tamoxifen 10mg. (which is 1/2 dose) about 10 days ago. At first no side effects, but in the last several days I've had uterine tenderness and pain--like gas but lower abdomen and constant. This is not something I can live with for 5 years.

    So this is putting me in some angst. I hadn't had a mammogram for about 6 years. Then I did they caught my tumor which was 3cm with some nearby DCIS, no lymph node involved, oncotype 33. I specifically choose chemo because I was afraid I couldn't tolerate the daily drugs of HT.

  • anmydw
    anmydw Member Posts: 3

    I was the one who found my tumor, after 6 years doing yearly Mammo, the Mammo could not see my tumor because I have dense breast tissue. My tumor was 11cm w/ ⅓ lymph node involvement and micro vasculature involvement DCIS Rt breast. Oncotype 13. My oncologist said that chemo would give the same result as pills with injections, except the chemo would have a higher recurrence rate. I am a veteran and a trauma nurse. This affected my emotional and physical state to the point that I am in pain and due to all the surgeries right now retiring kind of early from work. Depression/anxiety, and pain have gotten to be a daily thing from the pills and monthly injections, because eventhough they took the tumor, they were not completely sure if they got everything. Now I get yearly breast MRI’s and every other yr Mammo, Q6 months infusions for the bones, but I figured that it is better to continue therapy than find out later that it has spread everywhere else. I do try to ride my bike, and I swim. I have meds for nausea and I am under pain management, and mental health. My oncologist said that it would help the therapy if I keep myself active, and I figured that if my mom stayed active when she had it, so can I

  • molliefish
    molliefish Member Posts: 650

    I didn’t stop early but I did reduce dosage for the last year of my tamoxifen tx. I had a 2 cm polyp removed from my uterus in year 2 of tamoxifen, but have been uterine healthy since. I had hair thinning, dry skin, dry eyes and all that good stuff in the first four years. I dropped to 1/2 of a 10 mg tab every other day by the last 6 months with my MOs knowledge. I wouldn’t Want to say consent because he didn’t but he knew and respected my choice. After 5 years I finished and in the last 2 years my hair has sorted out. I still have thin patches compared to pre chemo but nothing like it was. I have sparse stubby eye lashes and thinner sparser brows. My skin is back to normal and I feel GOOD. All that said I developed a new primary dcis this year. First rads today. 15 to go. I have no doubt that this is NOT because I stopped tam. I don’t know ‘why me’ and I’ve stopped asking. What will be will be and I will continue to make choices based on what I feel is right for me. I would have declined chemo this time had it been suggested and I’m not sure about tam again. It wasn’t hard, but it wasn’t great either. Bonne chances mes ami


  • onehumpedcamel
    onehumpedcamel Member Posts: 4

    I did full five years of Tamoxifen, then started on Letrozole. After six months, my hand joints started to be painful and stiff, then feet, then knees. Had to wait a fewmonths to see the oncologist. He took me off, and I am no longer on any cancer medication, since two months ago. Joints are as bad as ever, but at least not getting worse anymore. Been NED since before Tamoxifen

  • abigailj
    abigailj Member Posts: 100

    62 at diagnosis, IDC in one breast and ILC in the other…had BMX with immediate DIEP recon June 2020. Oncotype 6 on IDC side and 11 on ILC side. ER+/PR+ HER2- No chemo, no rads. 3 months anastrazole prior to my surgery which was delayed due to COVID. MO said 3% risk with the pills and 6% without. Made decision not to take them after surgery. I guess time will tell.

  • inthesage2
    inthesage2 Member Posts: 17

    Molliefish, someone can correct me if I'm wrong, but the whole game of taking these hormone drugs and/or chemo has more to do with distant recurrence, not breast recurrence specifically. I believe I read that Tamoxifen is supposed to also prevent breast recurrence about 40%, but the actual 3% gain overall that is quoted has to do with distant.

  • oldladyblue
    oldladyblue Member Posts: 300

    Hi Inthesage2, would you mind posting your status concisely and coming back yearly to share your check up results? I wanted a "small post" thread of "statistics" from women who didn't mind sharing future status to keep things "scrollable" as the thread hopefully grew. In my own case, even when pressed, my doctors couldn't give me their exact prediction statistics, just that I "had" to take AIs to be safe. I'm going to PM you if that's OK.

  • buzzbomb
    buzzbomb Member Posts: 45

    quick but exciting update. I stopped tamoxifen a little over five weeks ago after a frightening rise in blood glucose despite a very low carb diet. Research showed that womaen over 65 have a 20% increase in rates of type two diabetes. now, five weeks on, and daily glucose monitoring I am thrilled to see my numbers back to where they were….

    I have worked very hard at this, going carb free (not an easy feat) and limiting my eating window. Next week I may try adding some carbs back…

    I am so excited by these numbers. The side effects of diabetes are no joke

  • inthesage2
    inthesage2 Member Posts: 17

    I just talked with one of my oncologists, the one who specializes in breast cancer. Since I cannot take tamoxifen and do not want to take AIs (and had an ocotype of 33) he recommended I do Faslodex or I could do Evista. I have to speak with my primary oncologist about this since Faslodex is a monthly injectable and usually given to women with metastatic breast cancer. It's all frightening really in terms of side effects. I see an ND oncologist next week for another opinion.

  • dclancy64
    dclancy64 Member Posts: 4

    This is a great topic. I was at my 1 yr out visit with MO on Monday, and told him that I had stopped taking Arimidex after a couple of months due to unremitting hot flashes and hip pain. Side note, I had a severe allergic reaction after my first injection of Zoladex, which really made me wary of all hormonal drugs. I tried tamoxifen and it made me feel like jumping off a bridge into the Mississippi River. At 57, I was still premenopausal so needed to be put in menopause STAT. I ended up having an oophorectomy. Anyhoo…The doc pulled his mask off of his face (first time seeing him without the mask) and very seriously said “You HAVE to take an AI! You're at a very high risk of stage 4 recurrence due to your lymph node involvement." I had 2/4 positive nodes with macro metastasis and chose to not do radiation. I didn't need chemo, Oncotype DX score of 4. He told me that Aromasin was more tolerable, but I'm not convinced, and haven't taken a dose yet. Here's my rationale: I work as a nurse in long term care, so I have the privilege of caring for those in their sunset years, and I have decided that quality of life is far more important quantity. I don't judge anyone on this horrible journey of navigating breast cancer treatment but I know that my decision for now is no meds.

  • gigil
    gigil Member Posts: 896

    One thought I have, as I decided not to take an AI after my initial diagnosis 12 years ago - I was diagnosed stage IV mets to the bone two years ago. I was then forced to take an AI. I have taken Letrozole for two years with minimal side effects. It has recently stopped working and I am now taking Faslodex shots and Ibrance. So far side effects have not been bad. They are certainly less than symptoms of bone metsthroughout my body. My oncotype is 30. I now wonder if had I taken the AI 12 years ago, would I have mets today? My lymph nodes were clear at the time of my lumpectomy.

  • maggie15
    maggie15 Member Posts: 753

    Hi Gigil, Did you have chemo? I'm glad the Faslodex and Ibrance are tolerable.

  • gailmary
    gailmary Member Posts: 415

    hi Gigil. Your story is a bit like mine. At 52 dx with IDC with tiny micromets in 2 nodes not requiring chemo. After Radiation was Tamoxifen but depression and leg cramps after 9 months I switched to letrazole. 3 yrs later I stopped it due to fibromyalgia type pain.

    Oops. Fast forward to 60 yrs old and my arm was nearly paralyzed with pain from a bone met. Radiation followed with drugs, drugs, drugs and drugs. Ibrance, xgeva and letrezole again with faslodex. All at same time! Pretty tolerable. Onc only wanted me on ibrance 1 yr. Then after 2 yrs I wanted to drop letrezole thinking it was causing insomnia but no pains. Then jaw pain put a halt to xgeva. Still on faslodex with the same 1 stable bone met. 6 yrs now.

    What I realized tho is that it's not so much a side effect of the meds leading to side effects. It's actually a lack of estrogen the desired effect. I'm highly ER+. That is what will stop the cancer.

    No estrogen is a bit the same as when you approach menopause. Look up perimenopause if your not there yet. It can be nasty. I was told they can treat most any side effect but it's necessary. I suppose i have a new normal taking a few more drugs than I'd like but I feel pretty good. For aches and pains now I would take tumeric/Curamin.

    I don't kid myself. If t took the letrezole that 1 extra year, it still would have returned and my chances were like a score of 12.

    Gailmary

  • happyhiker1
    happyhiker1 Member Posts: 26

    Started Arimidex 1 month ago and taking every other day. So far no noticeable effects. Had IDC early 2020 lumpectomy and Radiation 15 times no node involvemt. Local recurrence summer 2022 with mastectomy end July 2022. Recent reports of lower doses for exemestane and tamox being as effective as full doses lead me to hope lower Arimidexdose might similarly be as effective. I may be overly optimistic and some may say i shouldnt second guess med community but for now am following this route as already osteoporosis and hoping to avoid further damage. I am 71 yrs.

  • edwards750
    edwards750 Member Posts: 1,568

    I started out with Arimidex but changed after one year because I have osteoporosis and Arimidex attacks the bones. My MO should have never prescribed it. Switched to Tamoxifen for 5 years

  • pixy
    pixy Member Posts: 7

    Hi

    Yes, absolutely

  • gigil
    gigil Member Posts: 896

    maggie15 no, I did not have chemotherapy. I just had radiation.

  • VioletKali
    VioletKali Member Posts: 97

    I declined hormone therapy after trying an AI for 4 months.

    I was diagnosed with ER+ Pr+ and Her2 positive. 100% ER.

    DX in 2014, NED and no problems in 2023. No regrets.

  • oldladyblue
    oldladyblue Member Posts: 300

    Hello all. Thanks for your posts. Today I had my 1 year post surgery (late) follow up with my surgeon. Looked at one year mammo, manual and visual exams. Asked why I removed my port? Said they are usually left in for years! HEAVILY urged getting my oncologist to prescribe another type of AI/ Tamoxifen to find one tolerable in side effects or stop ONLY after I've tried all types. Said the norm now is 7-10 years of hormone therapy, not 5. Stated risk reduction is 50% (mine from 11% risk to 5.5% risk). Was the first doctor to tell me my tumor was 90% Er/20% Pr positive. Will see me in Aug/Sept, and every year after till he retires. I probably won't try another hormone therapy, but he sure tried to get me to agree.

  • Sheila723
    Sheila723 Member Posts: 1

    took anastrozole for 1 year and 5 months with minor issues with joint pain, trigger finger - then the swelling increased significantly and the pain was constant MO switched me to Letrozole and I endured that for 2 weeks - pain and swelling increased (developed carpal tunnel in one hand) stopped all aromatase inhibitors. MO recommended tamoxifen but 3 months late I still have constant pain and swelling and am reluctant to start another therapy until the pain and swelling subsides. Age 71 at time of diagnosis (2020) and am currently 74




  • simbobby
    simbobby Member Posts: 94

    I have taken Letrozole for four years. I am 69 years old and have had two bone fractures in the past four months which landed me in a transitional care unit twice. I am seriously considering discontinuing the letrozole

  • FaithAndTrust
    FaithAndTrust Member Posts: 14

    dear simbobby


    have you asked your MO about getting Zometa which is a none strengthener..I get infusion every six months ..it may allow you to stay on an AL..

  • FaithAndTrust
    FaithAndTrust Member Posts: 14

    opps I meant to say bone strengthener