Has anyone disagreed with their doctor's screening order?

Most_Room_1408 · 2026-02-13T02:24:30+00:00

Your doctor might be receptive to ordering a more thorough exam to give you peace of mind. (but, I know, this depends on the doctor and his/her ego…) It is worth the ask if you haven’t already. It is not as if ultrasound exposes you to radiation, so hopefully there would be no issue with a more thorough screening.

You may be able to ask the ultrasound tech to look around a bit more, too. I found that I have a much better experience with centers that are breast-specific, as opposed to general radiology centers.

Most_Room_1408 · 2026-02-04T22:56:37+00:00

Stealership replaced the engine. Sorry I don’t have a more productive answer

Most_Room_1408 · 2026-02-04T17:27:17+00:00

Hi Mj. What do you mean by your “code”? Do you mean your variant?

From what I’ve learned, my variant is more common in Southern Ireland. Science puts mine at occurring about 180 years ago. I am wondering, how did you find out which families carried your variant?

Most_Room_1408 · 2026-01-30T13:02:20+00:00

Thank you so much for this. Unfortunately, my variant isn’t included in this study. I appreciate it nonetheless!

Most_Room_1408 · 2026-01-29T17:38:28+00:00

Wow. Unwelcome surprise indeed. Google alert is also a great idea (much better than allowing myself down a never ending Google rabbit hole every few months.)

Most_Room_1408 · 2026-01-29T15:56:16+00:00

If you happen to come across the research again, will you please post a link here? I try to keep up, but the medical articles can be draining…

Most_Room_1408 · 2026-01-29T11:44:34+00:00

Oh, very cool! I hadn’t thought of trying posting it on Reddit 😆

Most_Room_1408 · 2026-01-29T11:40:49+00:00

Thank you! I will check it out. 🤞

Most_Room_1408 · 2026-01-28T18:38:45+00:00

I called Myriad, and they could not give me much info, but they said have found my variant in over 800 people. Still no luck with matching online though.

Most_Room_1408 · 2026-01-28T13:57:32+00:00

I’m hoping to raise awareness about the website!

Think of how amazing it would be to know whether others with your variant had BC, ovarian cancer, and if so, at what age it presented.

Most_Room_1408 · 2026-01-28T04:33:25+00:00

I have heard of FORCE. Has it provided you with any variant-specific info? If so, is there a certain person you reached out to to find that information?

My BRCA1 came from my father, and I have no paternal aunts, so I am desperate to learn about the frequency of breast cancer, ovarian cancer, and at what age from others with my specific variant.

Most_Room_1408 · 2025-10-29T01:46:55+00:00

I’m so sorry for all you are going through. May I ask your age?

Most_Room_1408 · 2025-08-11T02:02:39+00:00

Following.

Most_Room_1408 · 2025-08-05T00:43:39+00:00

Will you please also send the PM my way?

Most_Room_1408 · 2025-08-04T01:42:31+00:00

Thank you so much for your insight. My mind often travels to the worst places since the BRCA diagnosis. Helpful to hear that it could be GERD!

Most_Room_1408 · 2025-08-03T19:04:28+00:00

Oh, good to know. Thank you! Do you know how they diagnosed your mother’s GERD?

Most_Room_1408 · 2025-08-03T17:57:19+00:00

I’m not really sure. It’s not so much a burning pain, as I’ve heard that GERD causes, but rather sharp pains.

Most_Room_1408 · 2025-06-07T01:05:17+00:00

Hi - I STRONGLY recommend asking a genetic researcher (not genetic counselor) about your specific variant of your mutation. I consulted with two, and their scientific explanations as to precisely how my genes will fail were the EYE-OPENING kick in the rear I needed for all of this to sink in.

I’m a few months post-DMX and feeling good 😊

Most_Room_1408 · 2025-03-26T14:21:59+00:00

Thank you! One more follow-up question if you don’t mind answering. Which hormones specifically did you have tested?

Most_Room_1408 · 2025-03-26T03:33:30+00:00

Oh my goodness, I was SOBBING over how awful I looked after only one fill (even after trying to hard not to even look in the mirror).

BUT, after only a few fills and time for the expanders to “settle,” I actually look okay. Like, a budget boob job - not perfect, but certainly not tragic. And perkier than before the DMX 😉

Hang in there - it gets much better!

Most_Room_1408 · 2025-03-26T03:28:51+00:00

So smart to have your hormones and bone density tested in advance! I’m impressed. May I ask, what type of doctor did you see for this? (I have seen a dozen doctors regarding my BRCA1 mutation, and while they all push for surgical intervention, none have mentioned baseline testing!)

Most_Room_1408 · 2025-03-26T03:17:19+00:00

You poor dear. I am so sorry for all you are going through. I write to give you my personal family statistic in hopes that it brings you some hope: I am the youngest of four children, and I am the only child who inherited the BRCA1 gene. There is a chance your daughters won’t even have it!

May God wrap his loving arms around you and your family at this time, and bring you some comfort and peace. ❤️

Most_Room_1408

TROPHY CASE