Opting out
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you nailed it for me. I had started a thread and got blasted for the decision I made to not take AIs. I can’t entirely convey the reason(s) I’ve opted out but I do know I have complete peace. I was not myself at all and was pretty grumpy all the time. I was compliant 100% of surgery, chemo, radiation and follow up appts. Glad to find this thread and pray those on AIs will abstain from ugly remarks
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Hi there. I also refused anti hormone therapy. The only place that it is safe to discuss this subject is on the alternative thread. I'm not really sure why it is received so poorly. We all have the right to make our own decisions and be respected for it. Let me know if you want to talk more. Good luck to all.
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Vampeyes.....I’m in somewhat the same boat. I had a bilateral mastectomy in Spring. I couldn’t have reconstruction at that time and I’m not sure I can even have it. (I had a wound that would not heal and the scaring might be too extensive).
Anyway that’s beside the point. I had only 4 nodes removed and they were all negative. My two 7mm tumors which were only in one breast (other breast removed as a precaution) scored a 21 on my octo score. No radiation needed or chemo. One more note.......I had a “complete” hysterectomy over 20 years ago so there are NO female organs left for hormone production. I went into full blown menopause and I’m still having hot flashes, even before the hormone blockers.....so you can only imagine the hot flashes now. My bedroom is kept at a cozy 55 and my dear husband has excepted that.
Since the anastrozole I have had MASSIVE hot flashes, insomnia, hair thinning, mood swings.....which are totally not me, gained weight after losing 17 lbs before my diagnosis.....and the list goes on. I told my Oncologist about this and he has switched me to two others which were just as bad or worse.
I’m really thinking about just stopping the meds....at least maybe for a couple months and see if my issues go away. I have been on Wellbutrin since my hysterectomy to help with hot flashes but this is just too much.
I’m wondering where it would show up and what chance I have of getting a re-accurance.....is this worth is?
Just venting....sorry about the long post.
Thanks for listening,
Janie
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I'm pretty much decided opting out myself. I'm willing to accept the consequences.
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I've been on Tamoxifen for a long 8 months and think of quitting every single day. Just when I think my SEs are settling down, they come back with a vengeance. For me the hot flashes are every two hours at the night and I wake up like clockwork. But I could deal with this - it’s the muscle and joint pain that makes me miserable. It can be barely noticeable for weeks, then if I tweak something working out it is debilitating for a long time. It is exhausting.
I really don’t want to take medication for the SE’s of a medication!
I’m going to talk with my MO tomorrow and hope we can have a conversation void of judgement!
Best of luck to all of you - nothing about this is easy.
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It’s your call whether to take Tamoxifen or not or any other drug for that matter. It’s your body, your life. My friend’s daughter opted out and got grief about it too. She didn’t care and you shouldn’t either.
I did take Tamoxifen for 4 years. I started out with Arimidex but was switched when I developed osteopenia. Arimidex attacks the bones.
I had hot flashes but not every day. My biggest complaint was joint pain. It was brutal at night. I tossed and turned for hours sometimes. Luckily my MO said I was done after 5 years.
It’s a gamble to opt out but it’s your gamble. No one should ever be judging someone else’s decision on their health choices.
Diane
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Agree. I’m with you. I tried Tamoxifen but stopped taking it. The fatigue was so bad for me. Once it was out of my sysytem, I literally felt like a weight was lifted off of me and I had energy again. Your body, your choice.
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I did not opt out, but I (and my onc) did decide that 5 years of femara was enough--- she thought the risks of going 10 years were greater than the benefits and that there was no research to support going further. I had SE's---vaginal dryness and early joint pains (but they subsided over time with exercise). I think the lasting effects for me have been the vaginal atrophy and some cognitive cloudiness that only I notice. On balance, I think taking the drugs, for me, was the right thing to do. I am not sure I could have tolerated tamoxifen-- and like others here,I am almost always guaranteed to have some sort of side effect!!! But I am 10 years out and pretty healthy..... I feel like I did everything I could....
good luck with your decision.
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Hi, Jane 2310,
I wanted to mention that women’s adrenal glands produce a small amount of testosterone which is converted to estrogen. This is one of the reasons for giving post menopausal women hormone suppression drugs. It will help limit that small amount of estrogen from being absorbed and metabolized by estrogen stimulated cancer cells. Even a small amount of estrogen entering an estrogen sensitive cancer cell can activate growth in some cancers. The effect of estrogen is determined by the cancer’s biology and sensitivity to hormones.
I have taken several types of hormone suppression drugs over the years and had varying degrees of hot flashes that did tend to improve over time. There are a couple of anti depressant drugs given at a very low dose which help many women with severe hot flashes. They might also help with mood swings and sleep. The side effects of estrogen drugs decreased over time as my body got used to them. The first 2-3 months was hell on some of them.
Your tumors were very large. I believe you wrote 7cm each. I do not know which type of breast cancer you were treated for. There are a few types of breast cancer which tend to not spread. These are the more rare types. The majority of breast cancers women are diagnosed with are very dangerous. Size is not the only consideration in outcome, but is very important.
The hormone drugs for some women are preventative, for other women the goal is starving the cancer of “growth hormone” thus stopping growth and for others actually starving any remaining cells to the point that they die.
Your post called to me for reasons I cannot explain.
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If it wasn't for the fact that I am BRAC2 I would quit this Tamoxifen now. My MO agreed. Sleep problems are one thing but I'm also having stomach problems with this which is a much worse side effect. I'm surprised my stomach tolerated this for 4 months. I don't want to destroy my stomach or have return of the cancer.
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sherrmue,
My tumors were tiny....as I posted 7mm which they told me was less than 1/4 of an inch.....and only one of the tumors was hormone fed. The other was not. Thank you for your input, but I still will be weighing my options.
Janie
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No judgement here for opting out. I took femara and eximestane for 2 years and stopped because of awful side effects. 4 years later I'm metastatic. Don't regret my decision but now my battle is much uglier and I don't have any health issues except stage 4 cancer at 69.
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im sorry I’m guilty of inattention. Ugh. 7mm.
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2 lumpectomies and 5 weeks of radiation. I am declining tamoxifen.. my doctor is not happy but the side effects outweigh the benefits for me.. we all need to do what’s best for themselves..
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I'll see my MO in early December and I know the topic of hormone blockers will come up. Ergh. I'll still be doing rads at that time, so I hope I can delay the decision until after that - maybe the first of next year. My inclination is to refuse, because all the SEs are issues I already have, and I dont want to exacerbate any of them. IF she can give me a lot of good reasons to try it, I'm willing to listen, but they'd have to be damn good reasons. And I want statistics.
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Alice...just so you don't feel alone I wanted to say that my health was very poor at the time I was diagnosed. I wasn't willing to compromise my QOL any further so I refused anti hormone treatment. IMO unless you have walked in my shoes its just not fair to judge my decision. We are here to support whatever decisions you make. Good luck to all.
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Alice - you've been through a lot. No judgement, you have to do what's best for you. HUGS!
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Alice - You've certainly had way more than your fair share of dealing with cancers. You'll have to see what your MO recommends and what statistics they provide. Generally - hormone therapies reduce recurrence by 40-50% so they actually do quite a lot. I get the concerns about them causing problems when you've already got problems. There are women who take these medications without any difficulties or such minor ones that they don't bother them. I think it's at least worth a try. I tried - and quit. But it still weighs on me.
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JBakerwebb - the decision on treatment is a very personal one. The success, SEs are so variable. Even more frustrating, no metrics to measure either. It helps me to hear about other people's experience, and if anything helped. I get frustrated hearing, " SEs are not as bad as recurrence" - I guess I am not convinced that hormonal therapy reduces risk to near zero and are worth the SEs. But if those taking the drugs feel like they help, they very well may help that individual. Healthy lifestyle, staying active, exercising, help me, as does acupuncture. I think some of the supplements turmeric, magnesium, D, biotin, low dose calcium help as well. Maybe I do not need to take the others (C, Bs, glucosamine, fish oil).
I did take tamoxifen, 2009, the first time with BR with no real/persistent SEs, but when I took anastrozole in 2017, SEs noticed immediately. So I quit. When I read about anastrozole, it seems like about 30% of women quit taking it because of SEs. I think my DR said that about 30% of women who take anastrozole do not have recurrence, so what about the other 70%? You can play with numbers and twist them to say anything you want, until your brain explodes with too much information.
A few survivors on this site post that taking the brand name vs generic reduced/eliminated SEs. I almost tried that, then decided not to. After several months I did start tamoxifen, and so far only a slight occasional cramp left leg. Frustrating for me too, is that oncotype testing of the tumor suggested that I would benefit form chemo- but after surgery, the DR told me the tumor did not shrink very much, as expected
2009 ER+ left breast. 52 yrs. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in hands. Started tamoxifen March 2018. Post note - about 10/2018 fingers started feeling a little stiff again, so maybe other factors (age?, cold?, too much sugar, caffeine, meat? alcohol ? all of the above? I was eating meat daily when I noticed increasing stiffness, and usually only eat meat 1-2 wk)
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I have 3 years to go before I reach the 10 year mark on anti-hormonals, YAY! No serious SEs and I feel so much safer taking them. Of course it is an individual decision, but I can't imagine not protecting myself with these life saving drugs. Best wishes to all!
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pupmom - if I didn’t have SE’s that seriously affect my quality of life, I’d say the same thing!
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It's such a personal - and difficult decision sometimes, isn't it?
For myself, I never considered declining aromatase inhibitors, as it is, for me, the only way I can suppress Estrogen. (I am ER+95, PR-0). So far, no side effects (I know that I am fortunate in this). However, bone density loss could be an issue. I'll cross that bridge when and if I get to it.
My general attitude - thus far - is that side effects and other negatives are worth it if the alternative is a recurrence of cancer (I had IDC so there's always that fear).
Now, time will tell what I decide if and when side effects present themselves.
As I said, it's a personal decision to be discussed with one's oncologist and loved ones, in my opinion.
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Pupmom...I'm happy that you have done so well on anti hormone therapy. Of course you would feel the way you do about it. However IMO we have to be careful that we do validate those who cannot tolerate them. Its pretty safe to say that we would all take them if we could tolerate them! Also there is just no guarantee that you will not have a recurrence even if you can tolerate it. So its really not a choice between having side effects in leu of a recurrence. I think if that was the case we might make different choices.
Patsy...I respect and support all decisions made. However anti hormone therapy is not the only way to suppress estrogen. Weight loss and exercise has been shown to lower estrogen levels by 40-50 percent.
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dtad, I think if those who don't want to take anti hormonals are allowed to post, we who do should also be given that right. And, I am 50% more protected with the drugs than without them. No, it's not 100%, but sure better than 0. Same for everyone else who is estrogen positive. Just saying.
I do completely respect everyone's decision about this treatment.
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I already have osteoporosis (another medical shock I got this year, grrr), so I'd have to take ANOTHER damn drug to counter the SEs to keep that from getting worse - and THOSE drugs have their own horrid SEs. And I already have a cataract in the making, which one of the hormone blockers can worsen. I need to make a list of every single health and structural issue for my MO to see if there is any blocker that will not be a major problem without other medication. And with my track record of being a cancer shit-magnet, I feel it's much more likely I'd get another random one rather than a recurrence or a new breast cancer, the only things the blockers might deter.
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I was very concerned about starting therapy too. I wasn’t sure how to evaluate the risk of the side effects vs. the risk of reoccurrence. Also starting these drugs would put me into early menopause which is daunting at 44. The nice thing about this part of the treatment is you can try it and see how you do. If you have unacceptable difficulty you can try a different drug or choose to opt out at that point. I’m not saying it is an easy choice. I was scared to start, but I’m tolerating it quite well. Most people do, so it’s highly likely you will too.
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pupmom - “if those who don’t want to...” it’s not that we don’t want to - we can’t! You don’t have Se’s - if I didn’t have them, it would be simple to pop that pill every day. We are talking about opting out because we are struggling, or fearful and yes, some on here just don’t want to. You are very fortunate to be having an easy time and I am very happy for you, but you do sound a tad judgmental.
Yes, you have the”right” to comment on a thread about opting out, but you do seem very critical
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Just stating my personal experience and family experiences with AIs as myself, my mom and sister were all diagnosed with BC within 3 years.
My sister and I were Stage 3, our mom Stage 1. I am starting Year 7 on Ais. I had ALOT of SEs the first 2 years, but basically, I was so high risk from so many factors that I won't go into now, for me I had no choice. Suck it up and stick it out which let me tell you was not easy. If I had to put a percentage on it, I would say I am 75 percent better than those first two years.
My sister had a similar experience. The first 2 years on the AI were really rough. But she stuck it out through the pain and SEs. Now in Year 3, she is doing much better in the SE department. She said she is 60 percent better than those first two years.
Our mom took an AI for 2 years at age 80 after a Stage 1 diagnosis. Then she began to have balance issues that were definitely from the AI drug which would cause her to fall. Not good while in your 80s. She quit them at age 83 at our MOs advice, and is now 4.5 years out.
The part I want to convey is often SEs are many in those first few years. But my sister and I are LIVING proof that it has gotten so much better. That is not true for everyone. For us, it was worth the SEs and suffering to get to this point without recurrences.
Our decision is not for everyone, and I respect other's decisions.
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Thanks Denise! That is encouraging to hear. I’m hoping that after I take this break, I feel better. My MO said if it is necessary to take a few weeks break every few months then that’s what we’ll do - this is obviously better than quitting.
I hope my SEs get better as time goes on - so many times I’ve been in tears this past month due to pain. For me, running is a huge part of life and not being able to do that is horrible.
Thanks for the encouragement
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Pupmom, that was incredibly tone-deaf - did you read all of the posts before replying?
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