Topic: Rejecting hormone therapy

Forum: Hormonal Therapy - Before, During, and After — This is a safe place to share your experiences of others considering or on hormonal treatment.

Posted on: May 25, 2021 11:18AM - edited May 26, 2021 04:14AM by beetsbluecheese

Posted on: May 25, 2021 11:18AM - edited May 26, 2021 04:14AM by beetsbluecheese

beetsbluecheese wrote:

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Sep 4, 2021 07:20AM salamandra wrote:

I totally support the wish for better drugs with fewer side effects, with more personalized prescribing technology (like oncotype).

I totally support any woman who makes an informed decision for herself that the side effects of the drug are not worth the potential benefit. I support that whether she is making the decision after having tried every possible variation of hormonal treatment and experienced bad side effects, or whether she has tried none of them and is making a decision based on risks alone.

I personally came very close to rejecting hormonal treatment after only trying solid tamoxifen, and I lay some of the blame for that on the way it was presented/handled by my doctor - so I also will not blindly defend the medical establishment's role here. (Details are spread across the boards so I won't go into the whole story again, but the short version is that I found a way forward with her that I am really happy with).

There is absolutely room for improvement in how oncologists support women in this process, starting with acknowledgement that hormone therapy can be as impactful on quality of life as chemotherapy, if not more so. I was incredibly glad when I saw a study shared here I think last year that addressed that question, and I hope there will be more studies and more education for physicians.

But I have a big problem with mischaracterizing science, mischaracterizing statistics, confusing evidence with anecdotes, and anything that makes it more difficult for a person to get to that place of a well informed decision.

When a woman comes to these boards and asks for input, I will give my input that I think it's probably worth trying these drugs for any woman who anticipates/strongly desires more than 5-10 years more of life, that plenty of women do find a variation of these drugs that are either basically side-effect-free or very tolerable, and that in most cases it will be worth an experimentation process to look for one that works for her.

FWIW, this thread is "rejecting hormone therapy', which I understood to extend both to AIs and to SERMs, and SERMs most definitely are not estrogen deprivation therapy. Some levels/types of estrogen actually increase. The term hormone therapy or endocrine therapy is meant to encompass both of these primary modes. If you want to call it treatment instead of therapy, it seems semantic to me and I wonder if you are consistent and call it chemotreatment instead of chemotherapy, but it doesn't really matter. Referring to it broadly as estrogen deprivation though is a misguiding mischaracterization that contributes to misinformation and seems like part of the problem rather than the solution.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/17/2018 Lumpectomy; Lymph node removal Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/2/2018 Whole breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Sep 4, 2021 09:45AM - edited Sep 4, 2021 09:46AM by BCat40

While AIs are most definitely causingestrogen deprivation, I still consider it legitimate to call SERMs a form of estrogen deprivation. Several of my doctors have colloquially referred to SERMs as estrogen blockers. They are blocking estrogen from acting in many of the cells in your body as it normally would. Thus, they are depriving those cells of the benefits of estrogen. In certain cells, such as uterine cells, SERMs may have a pro-estrogen effect, but in the cells where the SERMs are blocking the estrogen, those body systems are being deprived of estrogen. Thus, on the two SERMs I tried, my muscles and joints were being deprived of estrogen causing me traveling muscle cramps all over my body, neck pain and arthritis like pain that made me feel like I was 90 years old instead of 40.

Dx at 40. Did not tolerate hormone deprivation treatment. Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole breast: Breast
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Sep 4, 2021 09:50AM BCat40 wrote:

Also, I am not sure why I am being castigated for sharing my feelings about hormone “therapy.” This topic fits well within this forum and this threadand I am a BC patient with a perspective as is everyone else here. If I started a thread specifically titled “upset with hormone blocking treatment options” or “venting about hormone blocking” would that be ok? Or is it only ok to be a cheerleader for other women to use the drugs?

I continue to believe that if women don’t vocally demand better we will never get better options.

Dx at 40. Did not tolerate hormone deprivation treatment. Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole breast: Breast
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Sep 4, 2021 10:11AM Esther01 wrote:

BC at 40,

You are a treasure and your perspective is valuable. Keep speaking and posting. I appreciate hearing all of it.

Love,

Esther

Grateful to Jesus, that His love finally broke through to me. "With one touch, You just rolled away the stone that held my heart," - Lyrics by Keith Green, " 7 weeks of Radiation including supraclavicular nodes. Dx 12/2020, IDC, Stage IIB, 5/11 nodes, ER+/PR+, HER2- Hormonal Therapy 12/19/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/8/2021 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left) Radiation Therapy 8/3/2021 Whole breast: Breast, Lymph nodes
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Sep 4, 2021 10:36AM threetree wrote:

BCat40 - Once again, I agree that we will never get better treatments if we aren't vocal and don't push "the industry" to hear our concerns and look for solutions other than estrogen deprivation. There's got to be a better way! When I go to the onc's office they always ask, "How are you today?" and expect the routine "I'm fine, how are you", but I always say, "Well I have cancer and I don't like coming here." Most of them bristle a bit when I say that, but I don't say it to be a pain, but to keep reminding everyone in the medical arena that this is no picnic and we need a better way. If everything is always "Just fine, how are you?" it looks as if we are all relatively satisfied. I think it is important to keep sending the reminders to medical and pharma people just how difficult all of this is.

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Sep 4, 2021 12:07PM KateHanni wrote:

That's strange as I know I put it in originally! Let me see if I can find that and ensure it's showing up!

Dx 1/25/2021, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2-, Radiation Therapy 4/18/2021 Radiation Therapy 4/18/2021 Multi-catheter: Breast Hormonal Therapy 5/30/2021 Arimidex (anastrozole), Aromasin (exemestane) Surgery
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Sep 4, 2021 02:01PM KateHanni wrote:

Funny you should say that about how they ask you how you are and you are honest! When I go to my oncologist office, everyone in the waiting room looks dead, lifeless, no emotion or life about them. It's extremely disconcerting. I know they have cancer and many have terminal mets that have much worse known outcomes than I have; but I can't help but wonder if the treatments they are receiving are robbing them of quality of life. As much as my family wants me to live a long life, my youngest son who has always been afraid of losing me too soon (I was 35 when I had him) he said "mom I'd prefer you have 5 years of quality of life than 20 miserable years trying to survive cancer with these medications. That was helpful...I haven't stopped but I am taking my AI's every other day as opposed to every day simply because I could not tolerate them otherwise. Literally every common side effect and some of the serious side effects I had with anastrozole and exemestane generic and now I'm on Aromasin Brand (1135 per month USD) and am able to barely tolerate every other day. Yesterday was my day on the med and I nearly had a full blown depressive event at the dentist office where he was showing me bone loss in my jaw and telling me he could not approve the prolia injection or clear me because I've already lost too much bone in my jaw.

I have to ask y'all why is it we post menopausal women are not offered oophorectomy as opposed to the aromatase inhibitors? Endometrial cancer also runs in my family and Tamoxifen can cause EC so why not just take it all out as a preventative and eliminate the estrogen created by the ovaries? Anyone know why?

Dx 1/25/2021, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2-, Radiation Therapy 4/18/2021 Radiation Therapy 4/18/2021 Multi-catheter: Breast Hormonal Therapy 5/30/2021 Arimidex (anastrozole), Aromasin (exemestane) Surgery
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Sep 4, 2021 02:11PM KateHanni wrote:

Yeah your posts are totally appropriate and wonderfully honest. I deeply appreciate that. I'm not someone who likes to complain and quite frankly I'm not a sickly person either so when I found out I had breast cancer I was in shock and also angry. I breast fed both of my kids a long time, have been on a keto diet for 28 years (no sugar), never exposed to estrogen either for birth control or menopause, was very athletic as a young person and still very fit and so to find out I had breast cancer indeed was shocking and anger inducing. It was kind of like "why did I try so hard to be healthy, only to get cancer anyway." Wow is me kind of pity party.

All that said, it's a journey and we all process this stuff differently. I have PTSD from a violent sexual assault I suffered in 2006 and so the cancer diagnosis triggered my fear of mortality and it's been very hard for me to find a centered place inside. Also, for the person who castigated you, the Aromatase Inhibitors (this according to multiple physicians and endocrinologists I've spoken too) cause brain fog and memory loss just like chemo does, but without some of the harsh side effects of chemo. So I think this needs to be a safe space for us all and that we need to care for each other here and realize that we are all going through this process, but it's uniquely personal how we get through it and the vulnerability we feel should be taken seriously!

I work for a healthcare non profit and support and kindness and understanding are key components of our support systems. That's what BreastCancer.org has created the platform to offer, we need to honor that!

Dx 1/25/2021, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2-, Radiation Therapy 4/18/2021 Radiation Therapy 4/18/2021 Multi-catheter: Breast Hormonal Therapy 5/30/2021 Arimidex (anastrozole), Aromasin (exemestane) Surgery
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Sep 4, 2021 02:32PM KateHanni wrote:

OK I'm kind of in shock based on the predict tool you sent me, when radiation is included (which I did have) the difference in my risk level with or without the aromatase inhibitors is only 2%. If I take the AI's my risk is 6.4% over 20 years, if I don't take the AI's my risk of recurrence is 8.6% over 20 years.

Now I know this is going to sound cynical, but why on earth would my doctors not give me the full scope of the picture given all of the side effects I've had with the AI's? And believe me I wanted them to work for me as prescribed. My mother took anastrozole and she had no "known" side effects (although she cannot remember anything, her cholesterol and BP spiked for the 5 years she was on anastrozole). I had every side effect, hidden and/or obvious. I think Dr's should be far more straight forward with us about our risk so we can make a fully informed decision about our treatment options post surgery and radiation.

Dx 1/25/2021, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2-, Radiation Therapy 4/18/2021 Radiation Therapy 4/18/2021 Multi-catheter: Breast Hormonal Therapy 5/30/2021 Arimidex (anastrozole), Aromasin (exemestane) Surgery
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Sep 4, 2021 02:34PM KateHanni wrote:

Jasmine,

Did you have to try all three AI's due to side effects?



Dx 1/25/2021, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2-, Radiation Therapy 4/18/2021 Radiation Therapy 4/18/2021 Multi-catheter: Breast Hormonal Therapy 5/30/2021 Arimidex (anastrozole), Aromasin (exemestane) Surgery

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