Say NO to hormonal therapy!!!
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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.
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Artista- (and anyone who may benefit)
I spoke with my psychiatrist regarding the possibility of switching, my concerns, etc..I am ALSO a Nurse currently obtaining my Master's Degree, so I am exceedingly familiar with drugs. This is for some background.
The truth is that I am mentally stable, and have been for 20 years. I do not want to risk it. My mental health was not cared for as a child/teen, and I suffered for it. I began to use meds at age 17 when I was able to pay for my own health care.
I am all about QUALITY of life over QUANTITY. Give me ONE good year over 10 years of poor quality. Life is not worth living to *me* if I am not happy or unable to participate in my activities.
I realize that many want quantity and are willing to live with side effects. As a future NP I respect and honor that 1000%. I do not want that, I refuse to live with side effects. We all die, I want to live as well as possible. For myself this is without side effects.
Certainly a unique perspective, but I have to follow my gut.
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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.
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I am recently off of anastrozole due to bad side effects including mental health issues. I got so argumentative at my husband's doctor's office with the receptionist (who said we still owed $176 from 2 years ago) that he called the Sheriff's office and tried to get me Baker Acted. The day before I lost it with a store manager, screaming at him in the store. That was on top of daily grumping to my husband. Plus constant daily all over bone aches making me feel 20 years older than I am, and horrible insomnia almost nightly (2-5 hrs of sleep if I was lucky) despite anything I took to make me sleep.
My MO has suggested another AI, or nothing at all, she is not pushing me although she thinks I should take another AI or Tamoxifen before I quit hormone therapy.
But I can echo what VioletKali says, that quality of life for me is key. I feel almost pre-cancer normal right now, it feels good, very good.
This is MY choice, I would never try to tell another what choice she should make. But it helped me to read this thread, I am glad that MusicGal started it, and also that VioletKali feels so strongly about her decision. I feel stronger about my choice now.
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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!
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Hi Mavericksmom, Thanks for your post. I am glad that you returned to this site, perhaps it was just to answer my post! think you are right about the overall increase in anger in society. I've witnessed it in the way people drive especially. It used to be so rare to witness what people are doing now: intentionally driving through red lights, not moving over for bicyclists or ambulances or fire trucks, beeping rudely, cutting across many lanes of traffic to turn, etc. I can understand that you have witnessed more anger in school.
Yes, I am much recovered emotionally after being off of the Anastrazole for the last several weeks. The difference in how I feel was/is amazing actually. I've rarely even been grumpy, let alone the angry woman I was turning into while taking that innocent small pill. My doc asked me to try another AI, but I don't think that I will. Oh, and also the body aches and pains that were constant are gone. The insomnia is soooo much better. No doubt they were side effects too. I feel healthy and happy for the first time since my treatment began last year.
Your last line in the above post is echoing with me, you are spot on.
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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.
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happyhiker1 , so sorry to hear about your local recurrence and your upcoming surgery. I do understand how you might be puzzling whether it would have come back or not if you had taken the AI for the last 2.5 years. It does go through my mind too. If I take the AI, it reduces risk 5%, but I have chosen not to (I think) as I haven't started taking the Femara I received to replace the Anastrozole I stopped taking. I am so afraid of the awful side effects I had.
However, re light side effects, or almost none, it IS possible. A woman I met on this site (we did chemo and rads at almost the same time for the same type of cancer) has been successful with Anastrozole, having very few side effects now. She took it for a few months, had side effects, stopped for 3 weeks and restarted, and has had almost no side effects, so is happily taking her Anastrozole. So it is possible you could be fine on it.
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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!
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Typhoon, thanks for your post about doing fine on Anastrozole and personally I think it's just fine for anyone doing well on AIs or tamox to come on this site and say "doing fine" every so often. I do wonder how many people have no side effects, or light ones. Your post can balance out those who post about their side effects, like me, yeah, I was pretty complainy. I wish I hadn't had that awful experience on my AI, I didn't expect it really, surely didn't hope for it... but I got what I got. I definitely don't want anyone NOT to at least try them because of my own feelings.
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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....
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I had severe SE from letrozole and after 2 years of misery, my MO recommended I switch to Aromasin. It is been over 4 months and it is a difference like a day and night. I am even worried if exemestane is working since I feel so normal. If you have SE from any AI, I highly suggest talking to your MO to ask for another type of AI.
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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.
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Last July marked year 10 on letrozole for me. When I saw my oncologist in September, she was fine with me continuing, as long as my bone health was ok (it is). Yes, I have side effects. My joints are a little stiff and my lady bits think they're elderly. As exbrnxgrl said, movement helps, and I exercise in some manner every day. For me, though, with stage 3B inflammatory breast cancer, the trade-off is just fine with me. Any rogue cancer cells in my brain or bones or liver, the letrozole keeps the beast chained up, hungry, and asleep. But we're all different. Others must weigh the goods and bads, and make the best decision for themselves.
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Wouldn't it be grand if there were statistics telling us how many of us had no or fewer side effects by switching AIs.
I stopped Femara after about 4 yrs and 4 more yrs later found a lesion in my arm bone. Back on Femara. 2nd time only side effect was Insomnia. Fixed w a pill. Later switched to faslodex. Maybe that one is reserved for when it progresses to stage 4. Lack of estrogen is tough but I want to be here. I'm not hurting at all.
Gailmary
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I am 88 years old. I have been on a break from Arimidex since June due to extreme knee pain which turned out to be from bone on bone hip and need for total hip replacement surgery which I had September 12. Am convinced, perhaps wrongly, that Arimidex destroyed my cartilage. I had no joint pain before my 3 years of Arimidex. I have been so troubled by the fear of resuming it, afraid for my new hip, for my bad other hip, for osteoporosis or osteopenia , neither of which I have yet. I messaged my MO yesterday who wanted me back on the Arimidex one week after my hip surgery.. Here was his reply:
"When we first met, we discussed prognosis with and without the drug. If we knew that you would live to 98, there would be an 18% chance of suffering a breast cancer recurrence during that time without treatment. On the other hand, other things can happen along the way first, so the actual risk is probably only about 10%. A full five year treatment would cut that risk by half, to 5%. You have completed half the treatment at this point, and will have received half of the available protection.
Bottom line: Stopping now leaves you with about 7% risk for recurrence vs 5% if continuing for full 5 years - only a 2% difference. You would not actually, then, be taking much of a risk by stopping. "
However, the breast surgeon, who I also messaged replied that I should give resuming Arimidex a try.Still debating, though strongly leaning toward stopping after my 3 years on it.. Between a rock and a hard place. Will worry if I go back on it and will worry if I don't.
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Hi Keywestfan! First, let me say you are, and have been for years, a role model to me! I debated about taking Letrozole after my third time with breast cancer and decided to try it again. I am 69.
When I was going through my agonizing debate of whether to take the AI or not, someone on this message board gave me the most relevant advice that helped me so much. That advice was this: "If you don't take the AI and get breast cancer again, would you regret your decision? "
As it happened, I refused the AI and I got breast cancer a third time, my mastectomy ironically one month after your hip surgery, October 12th! I do NOT regret my decision at all! I hate that I am going through this yet again, but I do not regret my choice. That is because I know I made the best decision with the information I had at the time!
Key factors in my decision was quality of life, my age, the fact that I could hear my former breast surgeon saying to me, "YOU ARE FREE OF CANCER," and my misunderstanding of the term "recurrence." I thought recurrence was only coming back in the breast or breast tissue. I did not realize, or it just didn't sink into my brain, that metastasis is also a recurrence! They are not separate, they are both recurrences, one local, one distant.
I won't tell you, or anyone else, what to do as this is a very individual and personal choice. I am glad he brought up your age and lifespan expectations, as most of us become very aware of that anyway as we age, but certainly that and quality of life play a role in our decision making. Another thing to consider if you go back on the medication, you could stop at any time! The older we get, the more quality of life matters.
I will, however, tell you what NOT to do, and that is agonize over this! Take your time deciding, then stick with whatever you decide unless something happens that makes you rethink it again. I found out the hard way that agonizing over what to do sucked a lot of joy out of my life and I refuse to let that happen again.
I was worried because I had been off Letrozole for three years, and I worried I "missed my window of opportunity" to get benefit from taking it now. Maybe I did, but my MO said he didn't think so, that there was a new study out that showed those who stopped the AI for two years, showed no difference in outcome when they went back on it. I don't know if I wrote that correctly, but the point is, he said it was still beneficial to me to take it now, even though I was off it all those years.
Thinking of you and here to support you 100% on whatever you decide!
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Maverick’smom,
Thank you so for one of the most understanding,empathic words I’ve ever received. I should, though, not be a role model for you.I have, if it exists, the anxiety gene and have been a wreck over the same time occurring hip, Covid, and Arimidex decision. I most probably will castigate myself if BC comes back, but will do so also if I take it and screw up my hip healing or plunge into osteopenia or osteoporosis. You are a more self assured person than II almost never forgive myself. Think I will wait until March when I see MO, when hip has healed better, … to make a final decision. Your words, in every way, are comforting to me.
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Aw, thank you for your kind words! I am glad I helped! Waiting until March to make a decision on the Arimidex sounds like a really good plan! I too can be anxiety ridden! I don't know how you did it with the surgery and Covid, let alone adding decision over Arimidex to the mix! I think you are amazing!
My brother-in-law sent me a plaque after my second time with breast cancer that said, "You never know who strong you can be, until strong is the only choice you have!" So true!
I hope it is sunny and warm where you are! Sending you a cyber hug!!!!
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mavericks mom- you have totally brightened my glum day- thank you.
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