CommunitiesBreast Cancer Clinical TrialsIs Tamoxifen safe for me as a carrier of endometrial cancer gene?

Is Tamoxifen safe for me as a carrier of endometrial cancer gene?

MG

Community Member

10 months ago

I was recently diagnosed with ER+PR+HER- stage 1 invasive ductal carcinoma. I had a lumpectomy in December and all margins were clear and no lymph nodes involvement. I am scheduled for partial radiation for 5 days and then prescribed Tamoxifen for 5 years. I was put into a clinical trial and they did a genetics test which results came back showing I am a carrier for breast cancer, colon cancer and endometrial cancer. My questions is my Oncologist said a side effect of Tamoxifen can be endometrial cancer. If I am already a carrier for this gene wouldn’t that be putting me at a higher risk taking Tamoxifen? Is there something else anyone can suggest? I am 47 not menopausal and never had a hysterectomy. I am feeling a little lost and hoping to find some answers before I’m scheduled to start the Tamoxifen in 2 weeks.

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accepted answer

Accepted Answer

Having genetic predispositions alongside cancer treatment decisions can feel overwhelming, and it's completely understandable to have concerns about how different risk factors might interact. This is exactly the kind of complex question that deserves a thorough discussion with your oncology team, including possibly a genetic counselor who can help evaluate your specific genetic results alongside your treatment options. Many cancer centers have genetic counselors who specialize in helping patients understand how genetic factors might influence treatment decisions, and they work closely with oncologists to ensure the best individualized care plan.

3+ patients found this helpful

KB

Community Member

6 months ago

Ask your oncologist if aromatase inhibitors would be a good option

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PA

Community Member

6 months ago

I declined Tamoxifen for that very reason . Friend of mine had it and told me never take it. I went on line to see was meds were available and chose one I felt was good, Aromasin. There is side effects for all the drugs, just have to choose what u feel comfortable with. My onco let me switch from anestrozole.

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JP

Community Member

6 months ago

Arimedex better tolerated but did not work for me

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KA

Community Member

6 months ago

I took tamoxifen with no side effects

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NV

Community Member

6 months ago

You can ask about ovarian suppression with an AI ( I am 41 and do Lupron to put me in menopause then I can take anastrozole). That’s another treatment option than taking just tamoxifen if you’re premenopausal.

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LM

Community Member

6 months ago

Hi I was first diagnosed in 2011. I have invasive lobular breast cancer. I had bilateral mastectomy in 2011. Then put on Aromisin for 7 years. I now have mILBC in my spine and my peritoneal cavity. I would ask for a different hormone stopping drugs. I thought I was good with no recurrence possible, I was wrong. I’m on Ibrance, Fasledex, and Xgevia.

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PA

Community Member

6 months ago

lynnette, what is mlLBC? I had a lumpectomy, invasive agressive carcinoma. I take Exesemstane which is Aromisin and onco says 5 years but may do 10. I also have to take Zometa infusion every 6 months. Does the drugs u take now diminish hormones? There is so much to learn my head spins.

LM

Community Member

6 months ago

Pauline, mILBC IS metastatic invasive lobular breast cancer. In 2011 when I was first diagnosed I went monthly to oncology and I was on Aromisin for 7 years and I got some inj every 3 months for my osteoporosis. So I think after I stopped taking the Aromisin it came back in 2023 in my spine and appendix and colon and it’s on my omentum which protects your intestinal tract. I never thought I’d have recurrence be cause first time it was stage 2 only left breast no lymph nodes.

PA

Community Member

6 months ago

wow, mine was L breast also. 2 lymphnodes removed but ok. I have osteopenia and have for like 30 years. Getting osteo on hands and couple on spine area so thats why the Zometa. I am hoping this doesnt travel elsewhere as it was caught early. Terrible disease. Thx for the explanation, sending prayers ur way.

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JW

Community Member

5 months ago

I have intraductal ER + stage 0. Doctor suggests 3 weeks radiation and tamoxifen. I am nervous about side effects or radiation and tamoxifen so I am thinking about a double mastectomy. I will not need the radiation and I think he also said no tamoxifen if I do that. I appreciate any feedback if anyone else in my situation would do the same.

MD

Community Member

4 months ago

My oncologist would not put me on tamoxifen-even though my endocrinologist recommended I take it- for that very reason. I am on Letrozole and have other issues with it (joint pain, bone deterioration, kidney issues resulting in frequent UTIs). It’s a tough road but one possibly leading to cancer is not one I want.

CA

Community Member

2 months ago

Having genetic predispositions alongside cancer treatment decisions can feel overwhelming, and it's completely understandable to have concerns about how different risk factors might interact. This is exactly the kind of complex question that deserves a thorough discussion with your oncology team, including possibly a genetic counselor who can help evaluate your specific genetic results alongside your treatment options. Many cancer centers have genetic counselors who specialize in helping patients understand how genetic factors might influence treatment decisions, and they work closely with oncologists to ensure the best individualized care plan.

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