Wondering what my options are/stopping arimidex

Polly_Ester

I've been having an onslaught of health problems that have all been connected with the treatment. The lack of estrogen has given me glaucoma with ocular damage, glandular loss in my eyelids, a 30bpm heart rate, and a couple of episodes of chest and jaw pain. My bone density has gone down considerably.

Starting new years eve I started experiencing low to mid grade fever. I've had a fever of 99.0 - 100.9 for 16 days.

My oncologist told me to stop taking the arimidex immediately.

I was prescribed 10 years of arimidex and made it through 6 years.

I can't get into an appointment until next week. I'm wondering what my options will be. I don't believe any similar meds will work as all my problems are from the medication doing its job to eliminate estrogen. It's now doing more harm than good.

But it occurred to me that ER+ breast cancer can only affect breast tissue. Could mastectomy be an option? It would honestly be a fair trade.

exbrnxgrl

I have no answer for you . You could consider trying one of the other AI’s as this has helped some, but the aim of all drugs in this class is to reduce estrogen. You mentioned that ER+ bc can only effect breast tissue. I’m not sure if this was a typo but if that were true than none of us ER+ folks would ever experience metastasis and we certainly know that is not true. ER+ bc can and does metastasize to bones, liver lungs and brain, typically, but can metastasize to other body parts as well. I hope you get some info from your appointment. A mastectomy can greatly reduce the risk of local recurrence but does nothing to inhibit metastatic spread. Take care.

buttonsmachine

Polly_Ester, your MO will certainly advise you, but personally I found Tamoxifen and Faslodex to be much more tolerable than aromatase inhibitors.

Another option could be that six years is a long time on hormone therapy, the benefits continue after you stop, and you've already done what is reasonable to do. A mastectomy is not likely to help you at this point, but your doctor can advise better about all of this than we can of course.

I hope you feel better. I had a lot of trouble with AIs too and it was really discouraging.

Polly_Ester

I phrased that wrong. I know bc can metastasize, but since my tumor was removed and it hadn't already spread, then my thought is that removing the breast tissue would leave little to nowhere for another tumor to form.

This is all speculation, of course.

I was just wondering what was the course of treatment for other people in my situation.

I definitely plan to discuss everything with my doctor. It's just weird not knowing what to expect.

Beesie

Polly_Ester,

While mets can develop from a localized recurrence, usually that's not what happens. Most often what happens is that a few rogue cancer cells escape the breast, undetected, well before the patient even knows she has breast cancer, before the initial surgery and treatment. Those rogue cells sit somewhere else in the body, often for years, before the cancer starts to grow again. Because it's only a few cells, no screening will ever catch it - so while it appears to the patient and her doctors that the cancer hasn't spread, in fact the seeds of the metastatic recurrence have been there all along. The reason that both chemo and anti- hormone meds are given is to track down and hopefully kill off those rogue cancer cells before they have a chance to develop into mets by multiplying and spreading.

This is why numerous studies have shown that the long-term survival rate is the same whether a patient has a mastectomy or a lumpectomy. If mets are going to develop, the cells that will fuel that recurrence usually have already moved into the body well before surgery.

That said, as previously mentioned, 6 years of anti-hormone therapy will provide you with metastatic risk reduction protection for much more than 6 years. The protection certainly isn't absolute - those who take AIs or Tamoxifen can still develop mets, but you will continue to get some benefit for years to come.

exbrnxgrl

Polly_ester,

Even if you have a mastectomy and even if you have negative nodes, bc can spread to other parts of the body through the bloodstream. At a certain point these cells are too small to be detected by imaging and tumor markers are not always reliable. Systemic treatments such as AI's or Tamoxifen are recommended. Removing the breast itself does nothing if baby bc cells are hanging out, tiny and dormant, in some part of your body. This is not to scare you but to help you understand that mastectomy does nothing to prevent bc cells that may be currently too small to detect and already hiding out somewhere in your body from growing. If that were true, than no one who has had a mx/bmx would ever develop mets. So what you need to understand is that metastasis does not need a breast tumor (some folks are dx'ed with metastatic bc and the breast tumor is never found) to happen nor does metastasis arise from a new breast tumor. Metastasis arises from cells that have already left the breast. They can lay dormant for very long periods of time in an undetectable state which is why AI's or Tamoxifen are prescribed as they create conditions in your body which are not favorable to the waking up and growth of those bc cells.

Not a very scientific explanation but I hope it explains why a mastectomy will not prevent metastatic recurrence if those cells have already left the breast.

* Just read beesie’s post. She has a more scientific bent than I do and said it better but we are saying the same thing

Jinx27

Polly, Im so sorry about your side effects! That is just terrible.

I had the same conversation with my MO a few months, she mentioned that I have done very well with taking Lupron and Arimidex for 4+ years so far, I will be 5 years in Nov 2021. I mentioned to her that I was very tired of the my side effects, she mentioned that I could go on Tamoxifen for the remaining 5 years.

Maybe this may be an option for you? Ask your MO.

I know for sure what they dont want is for us patients to not have any "protection" aka, pharmaceutical drugs to help lower recurrence risk.

@Beesie and exbrnxgrl you explained that so well, thank you

dtad

Polly...so sorry you are having problems with anti hormone therapy. To start 6 years is a good amount of time to take it. Also just FYI exercise and weight loss has been shown to lower recurrence rates by 40 percent which is similar to aromatase inhibitors. Hope you begin to feel better!