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

Living with the idea that Invasive Lobular Carcinoma may come back isn’t easy. In my head, I say to myself It’s a cancer that’s often hard to detect, and if it returns, it tends to show up in unusual places where other cancers don’t typically recur like the peritoneum, bones, and other areas.
When they told me I needed to take medication to help stop the cancer from growing, I made a decision. I don’t know how other people feel, but for me it was simple: this is what I have to do.
I don’t want my parents who are 86 and almost 90 to have to bury me. I don’t want my sons to have to bury me either. So I’m doing everything I can to help myself. That means taking the estrogen blocker as prescribed, exercising as much as possible, taking my supplements, and doing whatever else is in my power to stay strong.

Boy, this is a long and older post but the fact that it’s still running says it all. I was diagnosed in early 2023, grade 2 idc with elevated Ki67. Was told “rapidly growing but caught early” and recommended surgery, radiation and 5 years ai. Mass grew to almost double in just the 6 weeks between diagnosis and surgery. Lumpectomy, clear margins but then oncotype positive. So had to decide on chemo which I did. Then 20 rounds of radiation and finally the ai therapy which I am not tolerating well. Currently trying my 3rd one. My dexa showed mild osteopenia which has corrected to a normal scan after 2 years even on ai therapy. The biggest problem with all this is that it is so “rock vs hard place”. While sometimes the odds are low, they’re still there. It took me 2 years to be declared in remission so always question if there’s something else still there we haven’t found yet. If I didn’t do chemo and then ended up on that 20% metastasis level, then I’m at too little too late. Same here. If I don’t take the ai and in 3 years I get reoccurrence, then again, too little too late and we start this all over again. But I still go through all the quality of life issues, the side effects, the question of tolerance and one of my biggest questions (which no one seems able to answer) is if any of these side effects are causing permanent damage that won’t go away after I stop it. (Like chemo which even at this point has left me with abnormal blood count, immunocompromised and questioning how much going on is residual to that, due to the ai or combination) I’m now 74 and go back and forth with the I have lived a good life vs yeah, not ready to go just yet argument. My oncologist says “you really need to be on this medication” so I will continue the trek with this one and see where I go.

I took do not want to take them I had a 6mm estrogen positive caught early and low oncotype and low k167. Lumpectomy clear margins, one lymph node removed no cancer and then 5 days partial radiation. My risk is 10% if I don't take the AI or 5% if I do. I feel like my quality of life is already stretched thin after the last 6 months, now that I can no longer take my estrogen I have aches and hip and back pain. I had bad depression and morning anxiety for 6 months. Now that I have finally gotten done everything and am just going about normal days I am starting to feel more like me again. BUT.... I have to decide if I take the AI or not. Need advice

@rosiebee
You know your body better than anyone. Make sure you look at all the facts for you and decide what you want to do. Do your own research and bring all questions to your oncologist to discuss. DCIS is probably the "best" kind of cancer to gt as it doesn't have a high recurrence rate in most people. However, is does reoccur, as mine did 26 years later!! Sucks to get cancer !

Good luck, always consult your doctors.

@rosiebee, I was most concerned with it recurring locally, not being noticed (I had a double mastectomy) and moving to stage 4/metastatic. I would do almost anything to avoid that so I’ve managed side effects, successfully, I’m very happy to say. I posted about that in a separate thread. I will lobby to stay on this drug as long as possible.

I am on Anastrozole and had a total hysterectomy in March. Menopause symptoms are terrible, especially hot flashes especially. Prescribed Veozah, not much help , been on it 6 weeks. Not fair r we have togo through this. S

@rosiebee
It’s a tough decision. I have been on Anastrozole for almost three years. It’s been a struggle. The reason I choose to continue is my Ki-67 score. I have a higher chance of recurrence. There are so many different diagnoses. For example — lymph node involvement and tumor size make each prognosis different.

I am more concerned about distant metastasis than the return of DCIS. If my cancer feeds on estrogen and there are random cancer cells floating around in my body I want to starve those random cells.

Our bodies produce estrogen in fat tissue, adrenal glands and bone. There are very good articles in PubMed the online National Institutes of Health (NIH) Library.

If someone tells you there are natural ways to reduce estrogen those strategies would be very limited in effectiveness. It might help someone who has an expected low chance of recurrence. Your prognosis is what is significant. The opinions of others is not.

@jinglem We keep fighting! When I lived in Florida on the beach my husband kept telling me to tan my face. I said no, I don't evn know why.We didn't know a lot about sun damage then, but I used a sun screen that had just become available. It sure helped to keep my skin undamaged.

@raebaby I sure wish there was more knowledge and sunscreen available when I was in high school! We used to put baby oil on our faces to lay in the sun! Now I’m very careful with sunscreen. Tx for answer.

I had breast cancer and was diagnosed with the atm gene. I had a lumpectomy with radiation, took ansatrozole for fives years, barely tolerated the hip and hands joint pain.. finished the five years and the hands improved but had a hip replacement. Statistically I have a high risk of contracting breast cancer in the other breast if you had a lumpectomy and radiation, with the atm gene. Bingo. I got cancer in the other breast two years after stopping the anastrozole. Had a mastectomy, took letrozole, had bad reaction to that so went on tamoxifen. No reaction to tamoxifen plus tamoxifen helps improve bone health. I am 73. If I were you I would try the drug pay close attention to reaction and switch if drug causes an issue. Anastrozole and letrozole caused me serious issues. Anastrozole caused joint pain. Letrozole caused severe dry mouth.