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37 year old, need advice on stopping hormone therapy early (estrogen blockers).

Hi everyone! I am looking for some advice or anyone who is willing to share their personal experiences (or studies you have found )with what I’m considering. 💗

I was diagnosed at age 36 with ER+, PR low +, HER2-, Ductal Invasive Carcinoma, and DCIS in my right breast last June of 2022. My tumour was a grade 2, and was 2cm, and the DCIS had spread across my breast 8cm long. I did not have any cancer in my lymph nodes. I had neoadjuvant chemotherapy for 5 months, (16 rounds) then had a double mastectomy with reconstruction. My pathology margins came back clear so they did not recommend radiation. 

In December I started hormone therapy (estrogen blocking). I do monthly injections of Lupron to stop my ovaries from producing estrogen and I take daily meds (exemestane). I was previously on Zoladex and anastrozole, but changed over to Lupron and Exemestane due to side effects. My oncologist wants me to stay on this plan for 5 years. She has strongly suggested against having my ovaries removed, due to the long term side effects from doing that at my age. (Heart issues, osteoporosis, bone loss, and early dementia).
I already have two children and do not want anymore so that part doesn’t have any factors in my decision making.

I should mention I am very healthy, besides having breast cancer. My BMI is 19, I am active, and I don’t have any other health concerns and am not on any medications. 

I am now 37, in induced menopause, and I am struggling with the side effects. I have intense joint pain, stiffness in my bones, I can barely get out of bed most mornings. I have awful hot flashes, brain fog, and experiencing vaginal dryness and pain after and during intercourse.

I am currently doing everything I can nutrition wise, and I have acupuncture every 3 weeks to help with side effects. I sit in an infrared sauna every night before bed. These things only help take the edge off, but I am still having a very hard time. 

I am trying to find more research on choosing to decline the hormone therapy, or even choosing to do less than the recommended 5 years. I will be 42 by then time the 5 years is complete. At 42 I would not be in natural menopause yet, so I do not understand why it would be safe at that point to allow my body to make estrogen again, but why it isn’t safe to do so now.

My oncologist told me it is because the clinical trials show results after 5 years. I cannot seem to get an answer that makes sense to me though. 

My risk for recurrence is low when I use the online calculator. I want to find a risk calculator if I choose to stop the hormone therapy.

I am looking for anyone who has stopped early and their experience. 

I struggle with this huge decision as I would feel guilty if I stopped and had a recurrence, but my quality of life right now is awful. Then I think about the women who stay on the treatment and get a reoccurrence regardless. Obviously it is a huge decision and there isn’t a magic ball that can tell you what your fate will be. I am just looking for anyone who might have made this decision and any resources that helped them make it. 

Thank you to all my pink sisters who take the time to reply to this. 💗 If you are not comfortable posting online, please reach out to me via email.


Comments

  • maggie15
    maggie15 Member Posts: 841
    edited May 2023

    tirzah may, You can use the Predict breast cancer tool to look at survival statistics at 5, 10 and 15 years with or without hormone therapy. When I entered the info you posted for 10 years, surgery + chemo gives a 93% statistical survival rate while surgery + chemo + 5 yrs hormone therapy gives a 95% rate. You can look at the other possibilities. The tool does not differentiate between AIs and tamoxifen.

    https://breast.predict.nhs.uk/tool

    For premenopausal women five years of induced menopause and AIs have a 3% statistical advantage over tamoxifen in a 10 year window. This study is pretty technical but you can look at the graphs to see the slight advantage AIs have.

    https://www.thelancet.com/article/S1470-2045(21)00758-0/fulltext

    The reason young women are advised to take just 5 years of hormone therapy is that estrogen is bad for ER+ breast cancer but good for most everything else in the body. It is no victory to die young from heart disease rather than cancer. The advantages of hormone therapy are pretty small as is the edge AIs have but because of your age the thinking is that every little bit is important. You are correct when you say that none of this can predict what will happen to you since statistics deal with large populations.

    You seem to be doing everything you can to deal with the SEs and have changed meds to see if that would help. You might ask your MO about stopping the Lupron and trying tamoxifen. There are no guarantees that this would improve things but if it did you could still get the advantage of five years of endocrine therapy.

    I hope that you can find a way to improve your quality of life as well as see your great grandchildren someday.

  • lillyishere
    lillyishere Member Posts: 770

    maggie15 is right, why can't you use tamoxifen? I thought it is a drug highly recommended to young women. I hope you are not trusting those links like predict, etc. These are old links and your oncologist should have the updated versions.

  • salamandra
    salamandra Member Posts: 735

    My understanding is that the studies show the biggest gains in protection from the first five years of treatment. Studies are ongoing and it seems that staying on treatment longer does increase the protective effect, but there are diminishing returns.

    Endocrine treatment is frustrating because we don't have something like oncotype to determine the benefit for any individual women. Overall, there seems to be about a 30% reduction in risk of metastatic cancer. But some women may be getting way more than that and some women way less or none at all.

    Young women with higher risk hormonal cancer do seem to get more benefit from OS+AI than from SERMs (like tamoxifen), but tamoxifen was the standard of treatment for years and it seems to be significantly better than nothing.

    I came close to going off of hormonal treatment when I was really struggling with tamoxifen. I realized that I do have a breaking point where my quality of life as just not making sense. I wanted to try toremifene before giving up, and thankfully it worked. If it had not worked, I honestly don't know whether I would have tried OS+AI. I guess at least I would have needed a few months to a year of break to recover from the physical and mental toll of the tamoxifen process.

    The women I've known personally who have given up on hormonal treatment - they generally tried multiple options from each class of drugs, and sometimes multiple brands/dosages within a class. They could not find one that they could actually live with. They felt like they pushed themselves as much as they could.

    I think they had to get to a place where they could internalize that it was not in their control, and not their fault - their bodies were just not compatible with the treatment.

    Our bodies are incredibly diverse, and the treatment protocols are based (appropriately) on what works statistically for most people. That is inevitably going to lead to outliers. Some women are contraindicated from certain treatment based on known comorbidities and risks. People I know who gave up hormonal treatment came to the understanding that they too had something incompatible, it just wasn't something known or understood well enough by science.

    This is made much harder because if it's not established scientifically, doctors will keep pushing - and we have to rely on our own non-expert judgment and sometimes go against medical advice.