Low Risk IDC w/ Baseline Multiple Painful Conditions

It seems like a priority to get off hormones, sorry. That is my lay person's view but with high estrogen scores, the hormones are feeding any stray cancer cells- if there are any.

If anyone continued low dose hormone replacement in the context of a hormonal cancer, I hope they will chime in.

It does sound like tamoxifen would be better than an aromatase inhibitor for you!

This is a complicated situation, one that requires your doctors to talk with one another. You could see a second opinion on the radiation. Was a mastectomy out of the question for you? That is how I avoided radiation.

@krisrwalters You might want to talk more about tamoxifen with your oncologist. For us post-menopause, tamoxifen only blocks estrogen in the breast, but has estrogen-like effect in most of the rest of the body including bone, heart, skin, and brain. I do not believe it damages collagen.
I have been amazed at the estrogen effect I’ve seen in my body: a reverse of GSM (vaginal atrophy, dryness, etc), and better skin elasticity. It seems to be dose dependent. At 20 mg I had better estrogen like affects - but also came with moodiness and headaches. I did not have hot flashes, but it did seem to take longer for my body to cool off if I got overheated in a hot car, or after hike in the sun. At 5 mg, I still had good GSM response, less moodiness. The jury is still out on whether the headache I now have after 3 months on this dose is actually from tamoxifen or other causes. At closer to 2.5 mg, I lost the benefit of the estrogen-like boost and again had moderate GSM. (Yep, I’ve tried them all working through which dose is best, with a drug holiday between 20 mg and 5 mg).

Here is a case of someone with hypermobile Ehler Danlos. I realize there are different forms of the condition, so this may not apply to you. My cousin has Ehlers Danlos and had major major multiple surgeries to his legs and knees at a young age.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8514306/
Wishing you the best!

@windyshores I appreciate your thoughts. I explained my situation to my surgeon after her offer of a lumpectomy and asked her if, knowing my conditions and concerns, a mastectomy would be better in order to avoid radiation. She told me that breast conserving surgery with radiation would still be better on the whole for me than a mastectomy and no radiation. I still question that and wish i had asked for a second opinion. Yesterday was 3 days without hormones, so I'm making progress. I'll make it 4 today. I would very much like to hear if others have continued bioidentical hormones. Thank you!

@krisrwalters is the oncology surgeon refusing to do a mastectomy? My docs were concerned about my ability to handle that surgery so they did one at a time. I did fine. They were more concerned about radiation for me given my lupus diagnosis, not sure why.

What happens if you tell your current doctor that mastectomy is what you want? You do have a right to that choice, I would think.

I hope day 4 without hormones goes okay!

@krisrwalters I thought I read that with Ehlers Danlos that skin does not heal well after surgery. That it can lead to sutured areas that don’t mend quickly leaving them open to infection- which would then cause damage to the fragile skin and more problems. I believe it is because connective tissue is altered in Ehlers Danlos.
It could be the surgeon was trying to limit the size of the open wound on your chest?
Going forward, I’d suggest discussing the Ehlers Danlos with the radiologist. Lower doses of radiation might help limit skin damage? Maybe even ask if it’s possible to do half the radiation sessions and take a break to see how it’s affecting your skin before continuing with the rest. I realize their protocol is to give radiation doses in consecutive weeks, but maybe it could be adjusted for you. I don’t know if/how it would affect the effectiveness of the radiation.

Yes, poor skin healing is part of the equation and she may very well have been thinking of that. Seems rad tx would be more concerning in terms of skin healing in the big picture but her perspective would be primarily surgical I suppose. I'll have to remember that it may be only me that's keeping the big picture in mind going forward. I really like your ideas to negotiate on the radiation and will definately discuss with the rad oncologist. Thank you for caring enough to understand my situation and respond. Means a lot to me. Big hugs!!

Oh no, the surgeon didnt refuse but strongly pushed for the lumpectomy and I went along with that. I'm 4 weeks out now. How did you do with your surgery given the lupus?

Excellent article,
thank you!! Wow, you've been through it with the tamoxifen! I'm glad to know about the action of it. Hopeful! I'll be talking to my oncologist about that for sure. My former spine doctor diagnosed EDS but didn' mention a type. I'd need to see a geneticist to determine that. Unfortunately, estrogen is involved in collagen formation but I'm charging ahead. I appreciate all of your good info and wish you all the best!

@krisrwalters I did fine with the first mastectomy so they agreed to do the second shortly after the first. I went flat so it was easy. I didn't know you had already had surgery so my comments aren't relevant!

I’m new to this, so I am extremely grateful to everybody sharing the best/worst experiences they’ve had and the extremes of information covered.
One of the very best sites for feedback I have come across.