Opting out
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I don't listen to anyone who minimizes my SE's.
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Exactly Meow! I deleted my post because I didn't summarize it as nicely as you did.
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I'm going to be 69 in January and I do NOT want to spend my 70s feeling like I'm in my 90s. I figure it will be my last good decade and I want to get some enjoyment out of those years. And for those who put up with SEs for a few years, what guarantee is there that those SEs are reversible once you stop taking them? If I were younger, I might feel differently, but I do not have enough recovery time left in my life to sacrifice my remaining good years.
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I had to Opt Out after two and a half years. My MO was ok with it.
Here is a current article you might all like to read. It makes me feel better anyways.
https://www.breast-cancers.com/2018/10/31/benefit-...0 -
Alice...the side effect which might be permanent is joint damage from aromatase inhibitors. Of course not for everyone but good to know when making our decisions. I refused them from the start because I already had poor QOL due to multiple autoimmune disease. So this is why we can't judge others' decisions. We all have different circumstances. My decision might be different if I was younger and healthier. Since I have joined this community my only real complaint is how my decision to opt out of anti hormone treatment is so poorly received. I have never pressured anyone to make the same decision that I have. However, I have received many fear mongering comments. I just do not understand why it matters to anyone. We all have to respect and support all decisions made.
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You are exactly right dtad it’s your life, your body, your decision. A friend’s daughter made the same decision and got a lot of flak too - and not very nice comments at that. Totally uncalled for.
Diane
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It matters to us because many younger women are looking for advice here and when we say that they should at least try the antihormonals to see if they have side effects for them, you accuse us of being judgmental. Age is a huge factor and someone’s age should be mentioned when explaining their decision, as Alice did above. It is frustrating to see people say that they are opting out before they have even tried the drugs, after “reading about horrible side effects.” Just because we encourage women to try them first does not mean we are judging your decision. However, please let newbies know of your age and your other health reasons. Those are important factors in your decision.0
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I agree with the premise of this thread, that everyone has to make the best choices for themselves. However, it is important to recognize that some of us have a different prognosis than others. For example, Denise_G and I were diagnosed at Stage III with HER2+ breast cancer. Hence, our cancer is more likely to recur than someone who was diagnosed at Stage I, Grade 1, and no nodal involvement. For us, it was worth giving hormonal therapy a try. But, if I were Stage I, Grade 1, I might think way differently.
I do have to say that since I was diagnosed with BC in June 2014 that the medical community has been making an effort to cut back on overtreatment. I love the fact that the oncotype test has proven its worth and that fewer and fewer women are getting chemo. Someday, we may have a better idea of who really benefits from hormonal therapy so that women who don't need it can skip it without the guilt and all that.
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I would bet that most women get the pep talk from their MO about how lucky they are to be hormone positive with nary a mention of side effects and swallow that first pill with great expectations like I did. It was only after a severely bad reaction that I began to research other experiences online.
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I must say that my MO does seem to take the possibility of side effects seriously, but her idea of a solution is to talk about other pills or shots to counteract them. And some of THOSE have side effects. Grrrr. One thing I've been wondering is since the endometrial/uterine cancer I had ten years ago was hormone-based, why wasn't I offered a hormone blocker after my hysterectomy? Did that GYN oncologist only think below the belt? At least the current MO seems to understand more than one body part, as she was active with the urologist in deciding if I needed follow-up treatment after the nephrectomy. Sometimes the specialists refuse to see beyond their designated body part to consider the whole patient.
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Alice B, I thought urologists just see men.
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pupmom,
urology
[u-rol´ah-je]
the medical specialty concerned with the urinary system in both male and female and the genital organs in the male. adj., adj urolog´ic, urolog´ical.
Miller-Keane Encyclopedia and Dictionary of Medicine, Nursing, and Allied Health, Seventh Edition. © 2003 by Saunders, an imprint of Elsevier, Inc. All rights reserved.
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Sara, ok. I thought gynecologists looked after women's parts, and urologist after men's. Didn't know urologists also specialize in women's urinary systems.
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Elaine Therese, there is a test called BCI (Breast Cancer Index) that lets you know if you will benefit from extended use of antihormonals past five years. Mine came back high risk of recurrence, but also high benefit from the drugs. I am guessing because I was 100% ER+. That is why I want to take them as long as possible. My Oncotype was low, so I think I had a false sense of security. The BCI results surprised me (and my oncologist.)0
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Peregrinelady,
I have heard of the BCI, and plan to get it once I hit five years. I just wish there were a BCI for those who have to make a choice about hormonal therapy when active treatment ceases.
I wouldn't be surprised if my BCI meant five more years. I was 95% ER+/95% PR+.
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Yes, that would be nice. My oncologist ordered mine right after diagnosis just because I asked about it after hearing about it here. I wish he had waited because seeing “high risk of recurrence” scared me after having a low Oncotype.0
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Sara536, thanks, I wasn't sure where the complete urinary jurisdiction fell either, even after using the services of a urologist.
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There are also “urogynecologists” who specialize in pelvic floor dysfunction and pelvic floor prolapse. I think there is a certain amount of crossover in who treats what.
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Yeah, I think when I was seeing a GYN onc ten years ago, they had a urogynecologist tucked away somewhere for bladder cancer and similar lower pelvis issues.
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I have never heard about BCI. I looked it up and it says that only 3 to 5 women who were recurrence free at 5 years post diagnosis benefitted from continuing anti- estrogen therapy. I’m shocked by this information. I’ll have to do somemore research.
I’m struggling at 8 months so going beyond 5 years isn’t on my radar, but it is interesting.
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My mo doesn't recommend BCI tests atleast for me.
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VL22,
3 to 5 women out of how many?
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out of 100
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Peregrinelady....I don't care to get into a debate with you. However your comment is exactly what I was talking about. You don't give people enough credit, even newbies. IMO most of us can read all different threads and come up with their own choices. There are different threads for different opinions. This is an opting out thread. There is also a thread for doing well on anti hormones. This a community of all different people with all different circumstances. Thats the beauty of it. As far as mentioning my age, I have stated many times what my individual circumstances are. I'm also happy to answer any questions. Why is it frustrating to you what I do? How about you do you and I’ll do me.
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Anyone considering Tamoxifen therapy, can private message me for information on how I take Tamoxifen and have very few side effects. I have had several of you write me already, but am happy to help anyone that I can. This message is not to interfere with the dialogue on not taking meds.
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Michelle...I'm happy that you are doing well on Tamoxifen. IMO we wouldn't be having this debate if everyone did well on it, even most. Unfortunately that is just not the case which is why we need a thread titled opting out. However,your message is very important. You should post it on the doing well on anti hormone therapy thread. Good luck to all.
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True & almost was fatal... suffered DVT/PE blood clots in leg & both lungs following trauma from accident.
Additionally, here's a YouTube video with 2 doctors claiming that 1/2 of BC recurrences & 2/3 of BC deaths follow after completing 5 years of Tamoxifen use. (Minute 46)
Note: Edited to add video link
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Excellent video...my take on it is that in the future the recommendation will be to take aromatase inhibitors for the rest of our lives. Also as Ive said repeatedly on this forum, we need to test our estrogen levels before, during and after treatment! Right now the only way we know if they work is to see if we have a recurrence! IMO the reason our hormone levels are not tested is because MOs actually know very little about female hormones. I believe there should be an endocrinologist or at least a gynecologist on the BC team. Seems like common sense to me. Just don't get it!
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I've heard the reason they don't test is because you can have the lowest possible level since it's not just our female parts that create estrogen and still progress. Kind of like tumor markers. My mo doesn't bother with it because it's not reliable in her experience.
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