Desperate at 33: Bedridden from AI joint pain
Hi everyone, I am 33 years old and feeling completely trapped. I really need to hear from other women who have navigated this nightmare. My tumor was 95% ER+, with a BRCA 1/2 VUS (treated as negative) and an Oncotype DX of 22 (intermediate zone). So far, I have completed 24 months of ovarian suppression shots plus an aromatase inhibitor (Letrozole).
The AI has completely destroyed my quality of life. I gained 30kg, my liver values are toxic, now I am literally bedridden with crippling pelvic and joint pain and I suffer from severe hot flashes every 20 minutes, day and night, making it impossible to sleep. I feel like my body has turned to stone. The pain became so unbearable that, a few days ago, my oncologist and I agreed to stop the Letrozole, though I know the shot is still in my system.
Now, my doctor wants me to switch to Tamoxifen to save my joints, but here is the huge trap. Before my cancer, I suffered from endometrial hyperplasia (thickened uterine lining) and I used to treat it with progesterone. That progesterone is most likely what fueled my highly hormone-positive tumor. If I take Tamoxifen, it will stimulate my uterus and cause hyperplasia again, and I obviously can't take progesterone to fix it anymore.
I feel like I have no options left. Either I stay bedridden on AIs, or I risk uterine issues on Tamoxifen. I have already completed the first 2 years of therapy, which I know cover the highest risk of early recurrence.
I am desperately wondering if anyone with an intermediate Oncotype has stopped hormone therapy completely at the 2-year mark to save their quality of life. Also, for those who stopped AIs because of severe joint and pelvic pain, how many weeks did it take for the pain to fade away so you could walk normally again? Finally, did anyone else face this exact dilemma of Tamoxifen with pre-existing endometrial hyperplasia, and how did your doctors handle it?
Thank you so much. I feel so alone and I am crying in bed as I write this. Any advice is appreciated.
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I am so sorry. This is an awful thing to have to navigate. Again, it is perfectly fine to decide whether you want to continue endocrine therapy or not and if the side effects are not worth it to you to quit. It's your body. I will caution though that I don't think you can assume tamoxifen will stimulate your uterus. That's a definite side effect but it doesn't happen to most people. But do you think maybe asking your doctor for an ultrasound every six months or so to keep track of what is happening with your uterus would help you feel more comfortable? Have you talked through with your oncologist your fears?
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I'm sorry that you are having to go through this and at such a young age. I cannot even imagine how hard it must be for you to put your life on hold like this.
I read this Breastcancer.com article on Instagram https://www.instagram.com/p/DcSQ4kHNTRt/. You can see it without IG or FB but I really wish they would turn it along with the comments into an actual article on this site because I was astounded at all of the people feel the same was as I do about AIs. The doctors scare you into thinking you have to take them to keep the cancers away and then dismiss your questions/issues about the side effects. This is an actual quote from it " Hormonal therapy is one of the most widely prescribed treatments for hormone receptor-positive breast cancer because it reduces the risk of recurrence (the cancer coming back). However, for many people, hormonal therapy causes side effects that are hard to tolerate. Multiple studies suggest that up to half of women who receive a prescription for hormonal therapy either don’t start taking it, skip doses, or stop taking it early." If half the people won't use something that might keep the cancer away, that to me means there are real issues that are being ignored. When you add on the fact that most of will have to take Osteoporosis drugs because of the AIs that come with their own horrible SEs that are also dismissed by medical professionals it is almost criminal to me. I'm sorry for the rant but I just feel so frustrated for myself and others.
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@cielirosa Wow! You are going through a lot.
Since you have already been on Lupron shots and an AI for several years, might you ask your doctor for 10mg of tamoxifen instead of the usual 20mg? That way, if you are only on it for a few years at a lower dose you may reap some of the benefits without as many side effects. Just a thought. Remember, the choice of treatment is ultimately up to you.
Hugs, Pam 💗1 -
Hi @cielirosa, What a tough place to be in. As kaynotrealname said, even though endometrial dysplasia is a possible SE of tamoxifen it might not affect you. Given all your side effects and how they have affected your QOL you might consider whether the two years of AIs you have completed are enough. Toxic liver enzyme levels are not just a lab result but a warning of what is happening to your body. As someone whose statin induced leaky liver caused severe neurological problems I wouldn't ignore that.
Whatever you decide to do you should ask your doctor for a referral to physical therapy. They will help you regain motion even if it is done in baby steps. I started PT in a small pool where water buoyancy took much of the stress off my joints. The big breakthrough came when my therapist had me ditch the walker and cane for hiking poles with a hand ledge designed for people with MS. That put my body in the anatomically correct upright position which was a huge breakthrough in stopping the pain. I still can't walk without the poles but I'm so happy to be able to get around and sleep again that I don't care if I look like I should be hiking in the Alps.
All the best for getting your life back again.
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Thank you all so much for your replies and your support. Reading your words made me feel less alone in this nightmare. In 10 days I have a follow-up appointment with my oncologist to see how my body is doing after stopping the AI and to discuss what to do next. To be honest, my mind is a mess: I constantly want to stop everything to end the physical pain, but then I get terrified of the cancer and I backtrack. It is an exhausting pendulum. I will keep you updated. Thank you again from the bottom of my heart.
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Good evening. I had a similar situation but with a lot of differences as well! I finished five years of aromasin with the help of Diclofenac which is an anti-inflammatory. After being off of the aromasin for a year I had a recurrence. My doctor gave me tamoxifen which I took for seven years with no problems. Out of the blue I started having GYN problems which like you would need to be treated with hormones. Long story short I ended up having a hysterectomy. Of course I am a lot older than you so that may not be a solution for you. Breast cancer can be unforgiving with all the decisions that need to be made. I wish you well with your decisions. Make sure you gather all the info you can before making a decision. Good luck!
Kathy
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I started Anastrozole and it caused the same side effects. I felt 100 years old! I kept going on and off of it for one year. Then I told my Oncologist I couldn't do it anymore. She mentioned Tamoxifen but my Mom was on that and it caused her to have blood clots (it does NOT affect everyone that way). So I said no to that. That was in 2017. I have had no recurrence of the breast cancer but did get Angiosarcoma from the radiation I had. Discuss the side effects of Tamoxifen with your doctor and make the decision based on that. If you choose no AI then you will need to be more vigilant with mammograms and checkups. All the best.
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