Radiation or not for breast cancer with Hypertrophic Cardiomyopathy

My doctor told me they did radiation after the lumpectomy because he found cancer in 3 lymph nodes. Otherwise he wouldn't have had me do it. I was 79 at the time. Now 4 years later, the cancer has not returned. I didn't do taxmoxifin either.

It might help to get a 2nd opinion from a young oncologist who might be more experienced with recent new oral drugs. Of course it’s very complex, but if there is a non radiation alternative, it’s good to find out.

I had DCIS 22 years ago with L mastectomy, refused tamoxifen. Negative sentinel nodes. This year had a fluke mammogram and L breast showed a recurrence. Removed implant, tumor to a flat chest a few months ago. Radiologist did Not Recommend radiation. I made it clear I wanted proton beam radiation if it was necessary. The machines are scattered but not prevalent. Oncology recommended Tamoxifen. Tried for 3 weeks. Doubled my BP med due to BP but never got rid of headache so I stopped it. I am 70 so I am quite comfortable with my decisions. You can log into ChatGPT with google or Apple ID. It’s free. I entered a lot of my test results and got great info on there. My oncologist will not be happy next month over the tamoxifen stoppage but it is my life. If she is disrespectful of my decision, I will transfer my care.

@part
Hi. Thank you for sharing your story. I was diagnosed at 75 years in Feb 2025. Stage 1 - IDC. No lymph nodes involved. I had a lumpectomy (tumor was 8 mm) and then radiation. I chose radiation because I knew I was going to refuse the AIs. My oncologist was not happy with my decision. I already have tons of issues that will be exacerbated by the AIs. I cannot tolerate more fatigue. Onco score was 1 and I had no genetic mutations. Jesus take the wheel! Prayers for your continued good health. I forgot - Onco made me stop vaginal estrogen because I refused the AIs. We will see how long I last. I was using it for vaginal atrophy to help with urinary tract issues. She did not know if I could continue taking triptans for migraines I have had since I was 12. She has not looked at any of the meds I am taking. She did do the bone scan. I still have osteopenia (since 2009). Funny thing is all the blood work she had me take the day before the last appointment, she didn't even address until I asked. She was nearly out the door.

@janland Fever few might help with migration. It’s a difficult journey.

@janland I think I’d be looking for another Dr. if I were you. I had one like that and I tell ya I can’t deal with her crud along with mine. Besides I’m not the one with the certification. Lol. It’s tough trying to make decisions when it comes to treatment and stuff. I’m praying for you. 🙏🏻

@janland Hi. Just read about your thoughts on taking an AI . I take Anastrozole (for 11 months) after 1 breast mastectomy. I have had zero side effects. I also had 30 radiation treatment following surgery. In addition, I have osteoporosis, fairly severe, so after 3 years of refusing, I finally agreed to Prolia injection, twice yearly. So far, zero side effects. I am almost 83 years old and feel super. Energy off the wall. My ONLY negative side effect of "something", is that I lost about 7 pounds and cannot gain it back. When I ready 100#, I celebrate. LOL. Remember, if you take Anastrazole and it doesn't work, you can stop. This was my second round of breast cancer and I just did not want to deal with a 3rd. So far, so good. I was Stage 3. I feel very blessed. I have totally left my issues with God. Don't want to focus on human stuff. So far, He's been walking by my side. Much love to you. Pray some comfort to you regarding your journey.

If it’s your left breast there is more chances Radiation can affect heart if RT breast much much better not near heart- no matter what when you have consult be sure to let them know your concerns- there are ways they can avoid heart area! Good Luck with everything.

Hello,
Choices relating to Radiation Oncology therapy must be stressful.
I can imagine being stressed by the follow up treatment.

Your hospital may offer MSW stress management support groups and individualized MSW meetings and therapy that will probably be helpful.

Your consulting with a Cardiologist and Oncology specialized Radiologist would be very helpful and important.

Newer Radiation Oncology treatment equipment has been designed to mitigate and reduce any adverse Radiation Oncology effects .

It would important to speak with your Oncologist MDs Cardiology consulting MD(s). You may feel reassured after discussing your treatment with a Cardiologyst.

Best,

Susan

Confidential Communications

@sbeechl, I updated the title of your discussion to reflect your specific question and added it to the Hypertrophic Cardiomyopathy group (https://connect.mayoclinic.org/group/hypertrophic-cardiomyopathy-hcm/) as well.

There are several discussions in the breast cancer group where members have discussed their decisions about radiation. You might be interested in these discussion relevant to you:
- Radiation or not https://connect.mayoclinic.org/discussion/radiation-or-not/
- Does anybody know about heart problems with radiation? https://connect.mayoclinic.org/discussion/does-anybody-know-about-heart-problems-with-radiation/
- Deciding on Radiation : Photon or Proton? https://connect.mayoclinic.org/discussion/deciding-radiation-photon-or-proton/

There are many more if you wish to use the group search https://connect.mayoclinic.org/group/breast-cancer/

Heart issues can be a concern with some treatment options. In your situation, you have a know heart condition. You may ask about a cardio-oncology specialist or department.

Mayo Clinic offers a program to address heart problems associated with cancer treatment called cardio-oncology or for people who have a pre-existing heart condition when diagnosed with cancer. The Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment, and can help evaluate treatment when you have both cancer and heart conditions.

@sbeechl, is your oncology team aware that you have HCM? Have you discussed proton beam vs traditional radiation? How is your HCM managed currently?