Aromatase Inhibitors: Did you decide to go on them or not?

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

callalloo | @callalloo | Jun 27, 2022

In reply to @windyshores "@callalloo very interesting! and @madeler22 as well. I had never heard that term and cannot even..." + (show)

ER+ HER2- DCIS is the most common breast cancer from what I was told and read.

I think 'DCIS invasive' is used as it describes this cancer, starting in the milk ducts, by location and category, but adds that some cancer cells were found outside of the duty. But contiguous to the main tumor. I'm guessing that most early-stage DCIS tend to become "invasive" over time.

A friend had a small non-invasive DCIS, Stage 0 that oncolgist(s) advised surgery and radiation for as the cancer was on the chest wall resting 'too close' to bone. So there are a lot of factors that play into diagnosis treatment. (Her OncotypeDX risk of recurrence was only 2% though. So she didn't do chemo or AI meds. She has rheumatoid arthritis and the AIs were hard on her.)

The point is that there are so many factors that come into play. I hope everyone gets a second opinion on this stuff as legitimate opinions can vary and be worth considering.

pattyayn59 | @pattyayn59 | Jun 27, 2022

Thank you. Does anyone know the chance of recurring with radiation only and surgery but no hormone blocker meds??

callalloo | @callalloo | Jun 27, 2022

In reply to @pattyayn59 "What is predict tool?" + (show)

The OncotypeDX test will give the odds of recurrence if one takes aromatase inhibitors AND has not had chemo or radiation previously for the cancer (the sample of which is tested by Oncotype, looking at 21 genes determined to be best predictors). To calculate the rough odds of recurrence if one does not take the drugs, one can double the risk given as it's thought that the adjuvent anti-hormone meds 'can' reduce the recurrence risk by 42-50%.

Google OncotypeDX for more info.

orsejr | @orsejr | Jun 27, 2022

In reply to @pattyayn59 "What is predict tool?" + (show)

Goggle Predict Breast Cancer Tool.

mugs24cancer | @mugs24cancer | Jun 27, 2022

I have just ordered some turkey tail mushroom powder to start as a supplement. It was recommended by my oncologist. Going to start slow as I have digestive issues which is the side effect I experience from Letrozole. I really have not had the joint pain. I was just assigned a different oncologist at Mayo in June. She too said we might consider a “vacation”. For the first time in 3 1/2 years she affirmed that my digestive issues could be a side effect. Previous oncologist always said that digestive issues were not a usual side effect and thought it had other causes. Just so reassuring to be acknowledged that it could be a side effect. It does indeed make a difference to have an oncologist that listens.

pattyayn59 | @pattyayn59 | Jun 27, 2022

In reply to @orsejr "Has anyone used the Predict tool to help you decide on whether to take hormone therapy..." + (show)

What is predict tool?

lauranc | @lauranc | Jun 27, 2022

In reply to @madeler22 "I haven’t written since April when I was one month into taking Anastrozole following 25 radiation..." + (show)

@madeler22

I haven’t written since April when I was one month into taking Anastrozole following 25 radiation treatments, preceded by a lumpectomy (5mm) and excision of 3 sentinel nodes for DCIS.
My radiation left me with a painful rash which led me to take a long weekend off before starting my drug.
A month into Anastrozole, I felt no different. Three months in, the side effects have started, mostly in my hands, which are so claw-like stiff in the morning, that I have to work them several minutes to ease the pain - they also get this way at night. Though I am experiencing some other mild joint pains, (stiff leg joints & lower back), the brunt of it is in my hands. OH, and did I mention the weight gain?! Ok, that’s a discussion for another time! 😳
My next followup is July 5th at which time I will discuss these issues as well as the possibility of taking an alternative drug - I have a few friends who switched to Letrozole w/o joint issues, so we’ll see. My surgeon asked to try to hang in there & discuss these options with my oncologist.
I wanted to briefly discuss the “invasive” word that I’ve seen discussed. My 5mm lump (found on routine mammogram- not felt/discovered by me or my GYN even a month before mammo); was labeled post-biopsy, “invasive ductal carcinoma in situ”. When I saw the word invasive, I almost fell over, but I was quickly schooled not to confuse “invasive” with “metatastic”. I was then told that in the breast cancer world, invasive means that cancer has invaded your otherwise healthy tissue. I was further told that “types” are determined post extensive biopsy - HER2 Neg, Estrogen/Progesterone Pos; and that “stages” are determined post surgery/Biopsy (for me, Stage1A -, except for Sentinel Nodes, which are examined initially during surgery (my 3 were Neg), then further examined post surgery - all 3 were clean, as were the outer margins of the tissue in my breast.
My point being, my cancer was confined to that 5mm area, even though initial biopsy reports after mammogram called it “invasive” DCIS. A scary word to the patient, but to those in the cancer field, not so much.
As always, this is my journey & I never try to speak to anyone else’s, other than to empathize and wish you all well with yours. ❤️

Jump to this post

Hi, Maybe this could help you a little with the stiffness of the hands
I am taking exemestane and also suffer from stiffness on my hands and tingling on my legs due to the medication. Five months ago I started to take turkey tail mushrooms as a supplement and found some improvement. I’m also working with my doctor on “medication holidays” (a month without medication) to ease the secondary effects. It is not a solution but helps to make the medication a little more bearable.

orsejr | @orsejr | Jun 26, 2022

Has anyone used the Predict tool to help you decide on whether to take hormone therapy and what if any benefit there is by taking these medications?

BethL | @bethlee | Jun 26, 2022

Is there any evidence of orthopedic issues resulting from arimadex and statin drugs. I’m on both!

BethL | @bethlee | Jun 26, 2022

2nd time DCIS and radiation and arimadex 11 years apart. At 74, I’ve now had Orthopedic (walking) issues ever since starting arimadex. The 20-30 lb weight gain may be the reason , but not all my fault!!!