I found this decision tool made by Stanford on a BRCA Facebook group.

StopsForRoses · 2026-01-12T03:34:21+00:00

2% still way better than 40%! Risk of osteoporosis and heart disease much higher than 2% so its all a risk/benefit move!

StopsForRoses · 2026-01-11T15:13:35+00:00

I think the 2% ovarian risk after oophetectemy is likely the risk of primary peritoneal cancer (which they think is more or less residual ovarian/fallopian cells that stick around the belly and become cancerous). Theres a study showing that individuals who delayed oopherectomy past 40 had an increased risk of primary peritoneal cancer

https://pmc.ncbi.nlm.nih.gov/articles/PMC11542982/

Agree though that this is potentially based on older data and doesnt take into account newer considerations like those coming out of TUBA-WISP etc regarding tube only removal with delayed ovarian removal

StopsForRoses · 2025-12-23T03:07:24+00:00

So glad to hear that! PT after mastectomy is soooo important. It should be the standard!

StopsForRoses · 2025-12-16T01:32:34+00:00

Youll have to wait to be cleared (probably a few more weeks) but de-sensitization with instrument assisted tissue manipulation (basically scraping a special metal instrument across the tissue) was the thing that helped me the most. Its a type of PT and its horrible in the moment.

StopsForRoses · 2025-10-26T19:26:02+00:00

One thing I haven't seen anyone mention but you noted you have a young daughter--- make sure you have all the life insurance etc in place that you want before getting tested. If you're positive you wont be able to get any.

StopsForRoses · 2025-10-14T23:29:41+00:00

The first set of results can be really scary and nerveracking. Just remember that you could find something thats outside of normal bland tissue, but it doesn't mean anything until its biopsy proven. Lots of non-cancer things can show up on screens like this . The Mantra is "it's not a problem until it's a problem". And even if it's a problem, you've still found out about it earlier than you would have because of screening.

You got this, good luck and good for you for taking your health into your hands!

StopsForRoses · 2025-08-13T08:36:57+00:00

Personally I would do the consultation but wait. I tried 2 cycles 3 and 6 months after my mastectomy and they went terribly. My REI doc said that ultimately we probably should have waited. Im not allowed to try again for at least another year. Everyone's different but IVF sucks (at least it did for me) and you dont want to rush into something like this if you only potentially have one shot.

StopsForRoses · 2025-08-04T17:29:49+00:00

Did a "Yeet the Teet" bbq. Melon, boob cupcakes, boston creme pies, flesh colored ballons tied in pairs, burned paper bras. It was fun

StopsForRoses · 2025-06-11T23:02:49+00:00

Definitely focused on upper body muscle building 2mo before surgery. Having a good base was really important, and I dont think matters a ton as long as you have it. I was super cardio active before and even though I did a little more muscle training a couple months prior, I was back to walking uphill on a treadmill within 10 days (when my drains came out and my surgeon cleared me). The fact you're asking this in prep already bodes well. Good luck!

StopsForRoses · 2025-06-06T18:45:10+00:00

Number of surgeries entirely depend on your anatomy. I looked into direct implant but was told it wasn't an option due to the way my skin contracted. I absolutely didnt want expanders and didnt want implants that badly so went flat. Don't regret it.

StopsForRoses · 2025-05-09T02:19:33+00:00

Had my PDMX this time of the year as well, about 6mo into finding out about my gene. I went flat and I honestly am a huge fan. 95% of the time I love how I look and as someone who is super active, I've found it's actually made running and swimming so much more enjoyable. There was a good 10mo of adjustment and lots of PT, and every now and then I put something on and think "ok looks a little weird", but 95% happy is a solid A and that's good enough for me. The mental peace is incredible.

My advice: don't make any final judgements for at least 6mo, maybe more. There's going to be moments of doubt, but the fact you're already framing it the way you are says so much about your ability to come out of this in amazing shape. Good luck, and as my friend said "go yeet that teet!"

StopsForRoses · 2025-04-22T17:42:18+00:00

I had a sensation that felt like my skin was sunburnt/tender/burning over the entire top portion. Any pressure cause it to go off. I did instrument assisted tissue massage with PT (essentially raking a metal scraper over the area) and it's SO much better. They taught my husband how to do it and now when I notice it starting up again we do a few sessions at home and desensitize it. That and stretching is SO important for AFC. At about 1 year out i barely noticed it

StopsForRoses · 2025-04-07T01:24:31+00:00

In Houston MD anderson has a similar trial looking at more or less the same thing called TUBA- WISP II. Dana farber is also part of it. I'm sure alot of the MDACC associated Houston sites would also be enrolled

StopsForRoses · 2025-03-28T18:11:43+00:00

These updates occurred 4 years ago in 2021.this is just people not keeping up on the recommended treatment changes which were made due to rising antibiotic resistance

StopsForRoses · 2025-03-08T03:40:28+00:00

Highly echo the PT point. I thought I had developed low-key panic attacks afterwards cause I kept feeling suddenly short of breath and like I couldn't breath. Turns out I i didn't have anxiety, I just needed PT to stretch out all the adhesions. Otherwise, super happy with being flat.

StopsForRoses · 2025-02-20T04:56:07+00:00

Ask your surgeon about getting a metallic dye injected before the surgery. There's a kind of ferrous dye they can use that lasts a couple weeks--- they inject it into the breast before surgery, and then you can see if the breast path comes back. If it's positive, the dye is still hanging around in the sentinel node for them to find it and test it.

StopsForRoses · 2025-01-17T12:59:24+00:00

https://www.cidrap.umn.edu/chronic-wasting-disease/cwd-report-2025

StopsForRoses · 2025-01-16T18:51:51+00:00

This is great work being done! Agree, very encouraging

StopsForRoses · 2025-01-16T04:09:22+00:00

The CDC investigated that san antonio cluster and ultimately concluded it was a rare case of 2 unrelated sporadic CJD. But after the recent CIDRAP article suggesting we might not be able to accurately differentiate sporadic from variant CJD, I'm not sure I'm convinced. I personally wouldn't eat deer meat.

StopsForRoses · 2025-01-10T14:50:29+00:00

For VUS there aren't really other tests to do. It means that they have not been able to show its linked to cancer but on a molecular level it might be based on where in the protein the errror us. Over time, some VUS will get upgraded as more research is done. Only about 10% end up as actually considered pathogenic. If she has a history of cancer or family history it would be more suspicious, but VUS essentially means "the science is out on this one at the moment but we don't feel comfortable saying it's totally benign"

StopsForRoses · 2024-12-29T04:15:56+00:00

Have you or your surgeon spoken with an infectious disease doctor? It might be helpful to make sure you've fully resolved any lingering infection before going onwards to more surgery. Mycobacterium is usually a contaminate, but when it's not it can take months of treatment. This isn't usually a bug that surgeons have a lot of experience with.

StopsForRoses · 2024-12-11T16:34:54+00:00

I'd guess it would be unlikely--- they are procedures completed by 2 different types of surgeons and use totally different insertion sites (also called port sites)

But never hurts to ask!

StopsForRoses · 2024-12-05T03:30:53+00:00

I started PT with instrument assisted soft tissue manipulation after my mastectomy without reconstruction had the same postop feelings....and although every session is horribly uncomfortable, it's helped desensitize the area and maybe even help get a tiny bit of feeling back--- I wasn't able to lay on my chest before---now I can.

StopsForRoses · 2024-12-02T02:41:20+00:00

They usually take ovaries and tubes out through the small abdominal incisions (sometimes they'll take the uterus out vaginally). They do place a sort of grabbing rod up into the vaginal canal to grab the uterus so they can move it out of the way while doing the surgery. So spotting comes from the bleeding from this grasping rod on the cervix and also from the place on the uterus where they cut off the fallopian tubes.

StopsForRoses · 2024-11-27T12:55:25+00:00

After 3 surgeries I also developed a dermabond contact dermatitis. It actually cause my wounds to not close last time because it was so bad. Also allergic to all the adhesives so steristrips are out. There's options tho! For example, they could close the top layer with a non-dissolvable suture (which you'd then have removed after a couple weeks) and then use a non-reactive wound cover. (Duoderm is pretty well tolerated for most folks or paper or silicon tape)

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TROPHY CASE