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

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).

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

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.

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

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.

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.

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.

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

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

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

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

opps I meant to say bone strengthener