Opting out

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  • pupmom
    pupmom Member Posts: 5,068
    edited December 2017

    Marijen, undoubtedly. But some are implying that hormonal therapy completely destroys our looks. Hasn't happened to me or anyone else I know on the medications. Not diminishing the SEs some people get, but would like a little perspective inserted into the conversation.

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  • NotBrokenJustBent
    NotBrokenJustBent Member Posts: 394
    edited December 2017

    With my hair loss my first MO said "Oh good, at least we know the drug is working". He was an ass and I don't believe we need SEs to know if the drug is working, but that does bring up the other issue in that we don't know if the drugs are working. We can only hope. I am going for a hormone test at my insistence. I understand it is of little value but I still want it done.

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  • marijen
    marijen Member Posts: 3,731
    edited December 2017

    Well technically speaking, this thread is for those that are choosing to opt out. There is a thread for those who are doing well on AIs and we that have or are opting out don’t go there....

    So glad you are gorgeous at 69! I have not complained about my looks from letrozole. I take biotin for hair loss, it works well for me

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  • pupmom
    pupmom Member Posts: 5,068
    edited December 2017

    Marijen, I take Biotin and use Minoxidil topically. I have experienced hair loss since about age 40, long before my cancer dx. I didn't win the genetics lottery for that trait! Anyway, I'm pleased with the results of those treatments. My hair looks good.

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  • NotBrokenJustBent
    NotBrokenJustBent Member Posts: 394
    edited December 2017

    I too take biotin and have gone the minoxydil route until I began getting facial hair and some here said that the topical gets into the blood stream so that was it for me. I would rather thinning hair than dark facial hair. In truth my lovely hair was forever lost from chemo and just exasperated from the blockers. Arimidex was the worst for my hair loss but Femara has been a much better choice for me so for those choosing to proceed with the blockers, just know that if one drug causes issues, try another.

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  • marijen
    marijen Member Posts: 3,731
    edited December 2017

    I read that at 60% of what you put on your skin gets into the blood and is processed by the liver. So... I am very careful about what I put on my skin. Carcinogens you know. I tried Minoxydil one time, found it very harsh. Threw the bottle out.


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  • pupmom
    pupmom Member Posts: 5,068
    edited December 2017

    Marijen, I did not find it harsh at all. Been using it for 5 years, with no SEs to my knowledge. We're all so different. The one thing I'm glad I did avoid was hormone therapy during menopause. I won the lottery there too, because I never had a hot flash. Not one. My mother had the same experience. That did change after taking Tamoxifen, when I got the curse I had avoided naturally. But that is the only SE I can identify with hormonal therapy. It's diminished a lot now.

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  • marijen
    marijen Member Posts: 3,731
    edited December 2017

    I think sweating is a good thing, but I never got a hot flash either

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  • pupmom
    pupmom Member Posts: 5,068
    edited December 2017

    Sweating is a good thing, unless your make-up runs down your face!

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  • dtad
    dtad Member Posts: 2,323
    edited December 2017

    marijen...completely agree! That was my only point. I don't advocate not taking anti hormones. Its a very personal choice and I respect and support all decisions made. There is just not a safe place to discuss it without getting judged or guilted. When I post on a site titled opting out I think I'm safe from judgement but I guess I'm not. Good luck to all navigating this complicated disease.

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  • windingshores
    windingshores Member Posts: 704
    edited December 2017

    swg, I have many many allergies and sensitivities to foods and meds. I had horrible reactions, immediately (not side effects) to three generics but have been able to take brand name Femara. I got some state help with cost. My doctors are very supportive about my sensitivities, thank heavens.

    I have osteoporosis already and am unable to take osteoporosis meds. However, I still take Femara every day and plan on doing it for a few more years. I have two young adult kids with medical challenges and want to be here with them as long as possible. I would rather be disabled than dead.

    Everyone has their own situation. But I would say overall, it might be good to try one before rejecting the idea. I have found that regular exercise (Tai Chi for me) and a good mattress help a lot. But that's me.

    There is a recent study that DOES say low dose aspirin helps prevent breast cancer spread: it counters inflammation that encourages growth of cancer cells. That said, it does also encourage bleeding over time. My oncologist supports the use of baby aspirin.

    ps I cannot take Tamoxifen due to clotting issues with atrial fibrillation, but the aspirin may help with that too.

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  • Sara536
    Sara536 Member Posts: 7,032
    edited December 2017

    Maybe there should be a thread only for those who have chosen to opt out - to compare their experiences. Shouldn't have to justify their decision to those well-meaning folks who would "save" them from it. Does anyone know of such a thread?

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  • pupmom
    pupmom Member Posts: 5,068
    edited December 2017

    I don't understand why it is disturbing (frightening?) to learn about different opinions and experiences.

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  • bravepoint
    bravepoint Member Posts: 404
    edited December 2017

    I agree with pupmom. I am on my second AI, Exemestane/Aromasin about 3 months in. I started on Letrozole but didn't do well on it. I was interested to read why people opt out. I'm doing OK but will opt out if SEs get bad. QOL is important!

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  • Sara536
    Sara536 Member Posts: 7,032
    edited December 2017

    Pupmom, It is quite easy to learn about different opinions and experiences especially on BCO ( we do it all the time) but just don't need to be scolded for mine or pressed to reconsider by someone whose advice I did not solicit.

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  • Peetie1
    Peetie1 Member Posts: 73
    edited December 2017

    Sara,

    I wish there was a safe place for people who are opting out to post. I believe those that continue to post in the threads about opting out (that choose to take the anti-hormonals) do think they are "helping us to see how misguided our decisions are," but I happen to believe that this is an individual decision, and it is just as valid as those who choose to go the medication rout. I happen to believe that although doctors recommend the same medication for all of us (even the same dose of Tamox) regardless of weight, stage, tumor size, age, grade, tumor characteristics, other health issues tells us something. Where else do we see this approach in medicine? My point is, everyone has to weigh this decision for themselves and make their own decision. For me personally, 2.5% is not enough of a benefit to put up with the side effects of Tamox. Others feel differently, and I respect that. None of us has a guaranteed outcome regardless of the choice that we make. It truly saddens me that every time somebody dares to post that they are not choosing the medication, a person who chooses to take the medication feels the need to pounce on them and try to scare them into "just trying the medication." I truly wish that it was possible for us to just support each other in our struggle against breast cancer!

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  • pupmom
    pupmom Member Posts: 5,068
    edited December 2017

    Sara, I'm not scolding you. Just trying to balance things out with other experiences. Is that wrong?

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  • marijen
    marijen Member Posts: 3,731
    edited December 2017

    And now we have balance police! Hahahaha

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  • Sara536
    Sara536 Member Posts: 7,032
    edited December 2017

    Pupmom, I am quite capable of doing my own balancing, thank you. And, if you are worrying about some newbie coming accross the posts of some refuseniks and getting scared, please consider that if they have found their way to BCO they are looking for varied information and are most likely intelligent enough to weigh the pros and cons of what they read here as it pertains to their own situations.



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  • pupmom
    pupmom Member Posts: 5,068
    edited December 2017

    Best wishes to all! The awesome thing is that we have differing opinions and can share them without censure!

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  • NotBrokenJustBent
    NotBrokenJustBent Member Posts: 394
    edited December 2017

    What strikes me odd is that there is not this level of criticism and contention when it comes to walking away from chemo or radiation, but yet these little pills for 5-10 years are somehow harmless and in not doing one is selfish, ill advised or ignorant. Personally I would recommend to newbie to research, keep an open mind and possibly try and see how they do, but know that these are powerful drugs and not to be entered in without caution.

    I hope I have not offended anyone but those are my thoughts. I support all people's decisions in this.

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  • Artista964
    Artista964 Member Posts: 530
    edited December 2017

    To me it seems those who cannot tolerate the ses of tamox and ai are trying to rally around and perhaps wish they could so they get envious for those who do well? Not everyone. It would be so nice if they were gentler. Sure doesn't guarantee no mets but it reduces the chances, on top of diet and exercise. I think the problem is newbies who Google and find one thread to be the answer. We can't assume people will explore. So to not give both sides equal footing is one sided. But if a thread was titled opting out, need support then that should be off limits. But such threads should have both sides when the op is on the fence.

    I think it's those who flat out say no when they are high risk. Try it, if ses are unbearable then stop. It is a hot topic over chemo and rads because those are older well established txs that if you fit the profile, has a high success rate but hormonal it's not as known?

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  • NotBrokenJustBent
    NotBrokenJustBent Member Posts: 394
    edited December 2017

    Roseabella, I completely agree except that if a newbie puts his/her life in the hands of one singular thread then..... "not my monkey".

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  • pupmom
    pupmom Member Posts: 5,068
    edited December 2017

    Truth is, no OP is "off limits" unless the Mods say so. Just Stage IV members can post in their forum, but that is the only restriction on this website that I know about. We have to follow the rules, but are not prevented from posting opinions anywhere else.

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited December 2017
    KB, I was not trying to guilt shame anyone with my comment. This thread started out with someone who hadn’t even tried the antihormonals and I am frustrated with seeing people say no before they even find out what their side effects might be. I was thinking of my sister’s son who lost his mother at 10 years old. She chose to do IVF to have another baby and while there is no proof that this caused her cancer, I can’t help but think that the estrogen being pumped into her caused it to grow. Her tumor was over 5 cm and there was more than one. I don’t blame her for wanting another child, but it is so sad that this decision left her son without a mother. Also, it is not us against them on this topic. All of us wish we weren’t here, but some of us hope to help those newly diagnosed with our experiences. I was petrified to try the AI’s after reading some people’s posts, but found that it isn’t as bad as I thought it would be. Still sucks to have to make these decisions, though.
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  • NotBrokenJustBent
    NotBrokenJustBent Member Posts: 394
    edited December 2017

    Pupmom, the alternative sites also are restrictive and negative feedback as to their choices is not welcomed. I am not sure of the poster's intent and if feedback from all sides was welcomed.

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  • Artista964
    Artista964 Member Posts: 530
    edited December 2017

    also you always produce estrogen. None of these takes you to 0. Age and health aside from BC are biggies to think about. So it isn't for everyone but is for many. Problem is many doing well leave the board which leaves those with problems posting making it seem disproportionately that it's so bad for majority when in fact most do well.

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  • Sara536
    Sara536 Member Posts: 7,032
    edited July 2018

    So, if there are a bunch of people who would like to have a conversation without interference from you, you think it is your God-given right to stick your fingers in your ears and shout gibberish to drown them out? Oh, I forgot, you are doing it for their own good.

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited December 2017
    Once again, I think the issue here is the comment that the OP made, “the side effects seem worse than breast cancer.” Some of us were merely suggesting that she try them first and letting her know that this is not a decision to be taken lightly.
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  • Icietla
    Icietla Member Posts: 1,265
    edited December 2017

    NBJB -- Here is the Moderators' statement on use of the Alternative Medicine Forum section.

    ----------------------------

    Apr 28, 2017 10:37AM Moderators wrote:

    The alternative medicine forum is be a safe place to discuss alternative treatments for cancer. This, however, does not imply that members cannot bring up question the data, science, or the mention of potential abuses from industry and/or misinformation. Every comment and discussion point however must be made with the utmost respect for the other members, and understanding that if the topic is simply uncomfortable to you, or you flat out disagree with the topic and are only participating to cause debate and disruption, you are advised to block it, or risk a warning or ban with continued disruption.

    https://community.breastcancer.org/forum/121/topics/854469?page=1#post_4954963

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