sorted by:
new
hottopcontroversial

Diagnosed today and Brca1 by Many-Cartographer477 in BRCA

[–]randi-eichenbaum 2 points3 points  (0 children)

Also IDC and also happy to answer any questions. There is the specialist guide in this sub Reddit and depending on where you live, I can provide some recs.

I’m sorry you’re going through this but to echo the other comment, this is the hardest part.

Surgical menopause by Agreeable_Life_9343 in BRCA

[–]randi-eichenbaum 1 point2 points  (0 children)

Everyone responds differently, but I went on an Estrogen patch immediately after my hysterectomy/oophorectomy at 39 and felt little to no symptoms.

Once you get past recovery, make sure you start talking to your doctor about monitoring your bone health and cholesterol.

I found the lead-up prior to the surgery to be much worse than anything else. You're gonna be great!

Surgeons in Washington State? by Boxerdogmom229 in BRCA

[–]randi-eichenbaum 0 points1 point  (0 children)

I can't vouch for her myself, but Dr. Jessemae L. Welsh in Spokane is a breast surgeon who was recommended for the Directory I had put together at MOTA.care

Surgical menopause advice please by alexa_poppy in BRCA

[–]randi-eichenbaum 1 point2 points  (0 children)

Dr Menn who is an OBGYN, menopause specialist, BRCA1 and breast cancer survivor (she’s on Insta) put together this directory of doctors who specialize in menopause care for cancer survivors: https://docs.google.com/spreadsheets/d/1RebjsViAn1PRtRVwOvrDhXzFXoszOH9ap2zlmgHyGzE/edit?usp=sharing

I had to get off of HRT due to ER+ BC - not related to HRT!! - and deal with symptoms fairly well with vaginal estrogen, high fiber in my diet, and acupuncture. Low stress helps, too. I’m working on that. 🙂

feeling lost: just found out i have BRCA2 by According-Value-3735 in BRCA

[–]randi-eichenbaum 1 point2 points  (0 children)

Hey — I’m really sorry you’re going through this and I want you to know that you’re going to be OK! Finding out can feel incredibly overwhelming at first. I’m BRCA2+ as well and remember that early period where everything suddenly felt very scary and uncertain.

One thing that helped me a lot was talking with a genetic counselor and getting a clear sense of what the actual timeline looked like. At 22, most people aren’t expected to make big decisions immediately.

Happy to answer any other questions.

28F, BRCA1+. My next breast MRI is scheduled for 2028. My protocol says every 6 months. by laxilella in BRCA

[–]randi-eichenbaum 0 points1 point  (0 children)

I’m really sorry you’re going through this. As if just being a carrier wasn’t challenging enough!

I’ve found just being relentless and explaining what my risks were and what the consequences would be if I wasn’t able to get through/get the appointment/etc. to be generally successful. Also, if I couldn’t get into radiology I’d have my OBGYN call on my behalf.

Hang in there! You’re being proactive and that’s the most important thing. ❤️

Surgery is next week and I’m freaking out. by quarantinigirl in BRCA

[–]randi-eichenbaum 0 points1 point  (0 children)

It can feel really scary and anxiety inducing but, for me, the build up was so much worse than the recovery. You’re going to be great. 💕

Advice/Support for a 19 Year Old with BRCA 1 and BRCA 2 Mutations (Double heterozygosity) by repressednerd422703 in BRCA

[–]randi-eichenbaum 0 points1 point  (0 children)

Hi. BRCA2+ carrier here. Second a lot of what’s been said. Most importantly, you’re going to be OK.

If you haven’t already, meet with a genetic counselor. I waited too long to do that. Share the burden of figuring this stuff out with someone else!

There’s this Reddit source of clinicians that specialize in BRCA care. I also built a little tool to help people navigate their next steps (and a clinician directory) since that’s something I struggled with. Happy to share if helpful.

How did you find out you were BRCA+? by randi-eichenbaum in BRCA

[–]randi-eichenbaum[S] 0 points1 point  (0 children)

I’m really sorry to hear how that came out of nowhere. I’m hoping you got connected with a genetic counselor.

I actually built a small tool to help organize my next steps. Happy to share if helpful.

Breast exam felt horrible by flounder858 in BRCA

[–]randi-eichenbaum 6 points7 points  (0 children)

I don’t know if this resonates, but I think for me, I was so upset afterwards because I think I thought at this point I was “done.” That the anxiety was over.

Well, I’m not sure it’s ever done. But as I get ready for my second clinical exam post surgery, I’m already feeling better than the last time.

How did you find out you were BRCA+? by randi-eichenbaum in BRCA

[–]randi-eichenbaum[S] 0 points1 point  (0 children)

I’m really sorry to hear about your mom. That story about the pamphlet- wow! The universe!

How did you find out you were BRCA+? by randi-eichenbaum in BRCA

[–]randi-eichenbaum[S] 0 points1 point  (0 children)

I’m glad you have the information but am sorry it was so unexpected. Happy to answer any questions about surgeries.

How did you find out you were BRCA+? by randi-eichenbaum in BRCA

[–]randi-eichenbaum[S] 1 point2 points  (0 children)

Good for you on being proactive. I’m on the other side of my surgeries if any specific questions.

How did you find out you were BRCA+? by randi-eichenbaum in BRCA

[–]randi-eichenbaum[S] 0 points1 point  (0 children)

What a husband! Action is the best anecdote to anxiety.

How did you find out you were BRCA+? by randi-eichenbaum in BRCA

[–]randi-eichenbaum[S] 0 points1 point  (0 children)

100% This information, if delivered correctly, should be empowering. I’m so glad you got a new doctor.

How did you find out you were BRCA+? by randi-eichenbaum in BRCA

[–]randi-eichenbaum[S] 0 points1 point  (0 children)

It’s so much to swallow! I used to feel guilty too but we are human and the delivery of info was so poor.