Multiple health issues, disagreeing doctors

Anonymous

Multiple health issues, disagreeing doctors

RbZebra

Hi. My cancer is 1b er/pr+ her2-. Diagnosed December 2016. Had a mastectomy w/3 lymph nodes out. Been on tamoxifen until I had a stroke 1/2020. My multiple health issues ( CIDP, Ms, dysautonomia, PFO aka hole in the heart all before the cancer). My question is: how many of you have had your treatment stopped because of some major side effect? I'm only 47 years old. My doctor's are all arguing about the tamoxifen. My oncologist and neurologist are afraid I'll have a major stroke on the tamoxifen. My primary care doctor and cardiologist say the first 2 r wrong. Any similar experiences out there?

flashlight

RbZebra, I don't have a similar experience but, I wouldn't take the chance. Are you on any blood thinners? Is that why your cardio doctor is not concerned about a blood clot? Are you on other medications that have the side effect of a blood clot?

RbZebra

I'm on blood thinners, beta blocker for tachycardia, hizentra (high blood clot risk), glucophage for diabetes. I have a family history of blood clots.

BlueGirlRedState

No experience with this. But there are other drugs that target estrogen. Most taking Tamoxifen do not experience blood clots with Tamoxifen, but they are a known SE of tamoxifen. Has anyone mentioned alternatives pros/cons of alternatives to Tamoxifen, SEs etc. Aromatase Inhibitors help stop the production of estrogen (tamoxifen blocks receptor sites). Read about hormonal therapy breastcancerorgs main page. It might help you with questions you need to be asking the cancer specialist, cardiologist, primary care doctor. They are not all on the same page, which makes it even harder for you.

Spookiesmom

I’m on a beta blocker, and blood thinner, Coumadin. Had PEs, DVTs, at the same time. Waaaay before cancer, still on. Did 7 months of tamoxifen, quit because of severe joint pain. No clots.

Cowgirl13

The oncologist and the neurologist out way anything your primary care doctor and cardiologist have to say, pure and simple. Your primary care doc and cardiologist simply do not have the expertise that your oncologist has. And I believe the neurologist's expertise is in stroke illness.

flashlight

I just read this Blood thinners warning: If you're taking a blood thinner medication, tamoxifen can increase the amount of the drug in your body. This may make it easier for you to bleed. If you have ductal carcinoma in situ (DCIS) or a history of blood clots and you must take a blood thinner, you shouldn't use tamoxifen. I agree with Cowgirl13 they are the experts here.

RbZebra

Thank you all for your help. I'm on plavix for the blood clot prevention. I have to agree with my oncologist and neurologist. My neurologist has been treating me for 30 years, and he knows me well. Oncologist and I discussed the other meds, he's concerned about the side effects of those as well (pain that our medical community can no longer treat is my concern) the oncologist , the neurologist and the cancer surgeon have agreed to stepped up monitoring. I had a complete hysterectomy, no ovaries so I'm menopausal. It's just nice to be able to talk with others in similar situations 😊

Cowgirl13

RbZebra, good to hear that they will step up your monitoring. You have a great team.