Say NO to hormonal therapy!!!

Just as everyone’s cancer is different, every decision about treatment is completely individual. It is hard for others to be accepting of our decisions, but we all have to do what we believe is best for us. Trying to move from judgement to acceptance is a journey of its own. I try to remember that while I might not make the same decision as someone else, it doesn’t make mine right and theirs wrong or vice versa. This BC has me practicing Loving Kindness meditation often and honestly it helps.

Sarah536,

And also with you!

I do believe I might do antihormonals if I had a recurrence, because I would not do chemo again.

My logic says this.. IF I recur on antihormonals, I have no options since I refuse to do chemo again. I have , unfortunately, seen several women in my support group recur on antihormonals. They do not have that option anymore, since it did not work. I will have that option. I don't know if this makes sense, but I believe it does.

Not sure what made me come back here as it has been a very long time since I posted (or visited) this site.

OldLadyBlue, I tried Letrozole for 6 months after my treatment for ILC in 2019 and it raised my cholesterol so I quit taking it and never regretted it. I never wanted to go on it in the first place so it was kind of expected I guess. I too would never tell anyone else what to do..

As for your mental health, do you see a difference since you stopped the AI? I work in a middle school and this past year 2021-2022 I have dealt with more students with mental issues than in the entire time I worked for the district! (32 years!) There are many reasons, but there is so much anger out there! Some has to do with the pandemic, some with politics, especially on the far right, and some due to other issues. Increased anger is one reason we are seeing the increase in violence. Happy people don't kill unless it is self defense!

It wouldn't surprise me if your issue was largely due to the AI, but the general anger level in the USA is crazy high! It makes me feel like shouting from the roof tops "chill people!" Today's Supreme Court reversal of Roe V Wade will likely heat things up even more!

Life shouldn't be this crazy! I wish things would go back to an earlier time, when there was general respect for each other, people used manners, and being kind was a natural attitude!

Interesting thread...I really didn't want to take the AI with my BC diagnosis 2.5 yrs ago...my oncologist said would add 3% protection after the rad I did accept. But here 2.5 yrs later I have had a local recurrence and will have to undergo mastectomy. So I wonder whether the past 2.5 yrs without the AI and its side effects allowed the BC to return or would it have come back anyway. I will never know, but can't take another chance on any more recurrences.

I am just hoping somehow my side effects will not be as bad as many have reported.

happyhiker1 - I'm so sorry about your recurrence, and hope that managing it goes as smoothly as possible.

FWIW, I've been on Anastrozole for 18 months now, with no side effects at all that I am aware of. There are quite a few of us who have minimal or no side effects, but we tend to have very little to post about when it comes to hormonal treatments (seriously, how often can you say, "Doing fine, thanks!"). The people who do have side effects have a lot more to say, naturally, so it's easy to get the impression that everyone suffers from them to some extent. I was given some great advice here when I was starting the Anastrozole: try it, and if you start to have side effects that are too much to deal with, stop and try something else (or nothing at all). The meds are a treatment, not a contractual obligation, and you are in charge.

Wishing you all the best!

Many thanks Typhoon for your encouraging feedback. I wonder if there is any info about factors that cause some women to have bad side effects and others not?? In your case, is there anything you have identified, maybe exercise related or other?? Maybe the differences are purely genetic but if there is something modifiable that could help reduce effects that would be great....

Many people feel normal or close to normal on AI’s. Lack of side effects is unrelated to efficacy.

As far as I know there is no study/research regarding factors that contribute to experiencing se’s. It seems to be unpredictable though for myself, moving definitely helps the stiffness.

In general, whether on bco or any health related forum, those who are having difficulties and side effects are over represented in member’s posts. I don’t think anyone is hesitant to post that they’re doing well but rather most don’t see any reason to come back to a support forum to say everything is going well (some do however) .

I have been on AI’s for almost 11 years. I have experienced bone and joint pain to varying extents with all three. It has not been debilitating and I manage it with otc meds. I am stage IV so I have some very compelling motivation for continuing AI’s. I do realize that se’s are debilitating for some but it’s not a given and there seems to be no way to predict how it will effect a given individual.

I usually encourage folks to give it a try as one can always stop but I know that some won’t consider it. That’s ok as we all have a choice.