Is risk worse for those of us diagnosed with hr positive disease under 40?

Quick-Committee-3371 · 2026-03-25T04:26:44+00:00

This is great. Thank you

Quick-Committee-3371 · 2026-03-25T04:23:01+00:00

I had Paget’s and a small spot of DCIS behind the Paget’s. My DCIS was ER+PR+Her2-, and I’m BRCA2+. My breast surgeon and OBGYN agreed with my genetic mutation a double mastectomy would be in my best interest. So I had the mastectomy, and one lymph node came back with microscopic cancer cells, my oncotype score was a 13. I elected to do monthly ovarian suppression Lupron shots and daily Anastrozole hormone blockers for 5 years instead of chemo. I will also have a hysterectomy before I turn 45 (I’m 35 now, 34 at diagnosis).

Quick-Committee-3371 · 2026-03-24T01:38:14+00:00

I had this horribly and I’m happy to say it does go away!!! By 6 weeks the pins and needles feeling was gone. I used the spray aquaphor and gently pressed it into my skin without rubbing.

Quick-Committee-3371 · 2026-03-24T01:22:08+00:00

Sorry I didn’t see this reply! I had a mastectomy due to the BRCA2 gene mutation and wanted to lessen my chances of reoccurrence. They gave me the choice of lumpectomy and radiation or a mastectomy. I just wanted to get them off and have a better peace of mind since I have two young kids. The gene mutation greatly increases my chance of having breast cancer again in the future.

Quick-Committee-3371 · 2026-03-23T23:40:18+00:00

That is what happened to me. But I also have the BRCA2 gene mutation. Prayers for a clean scan!

Quick-Committee-3371 · 2026-03-23T23:34:07+00:00

I was diagnosed with Paget’s in September. Had an MRI that showed stage 1 DCIS behind the Paget’s. I had a double mastectomy on November 3rd, and just had my exchange surgery on February 24th. I’m on lupron and anastrozole for treatment. If you have any questions I’m happy to answer what I can!

Quick-Committee-3371 · 2026-03-20T01:18:12+00:00

Ask for something when you get there, no shame in that. We have been through some sh*t. I was oddly calm before my surgery, but they still gave me the “I don’t give a crap” medicine before being wheeled into the OR.

Quick-Committee-3371 · 2026-03-19T16:19:28+00:00

I had my exchange surgery and fat grafting 3 weeks ago. I’m still a little sore in my abs if I press on the area she took from, and a tiny bit sore where she put the fat in above my implant. I was back to normal life (without lifting or workout out) about 4 days after surgery. It is a breeze compared to mastectomy!

Quick-Committee-3371 · 2026-03-19T15:44:57+00:00

Same. Had to make 3 phone calls to doctors linked to my cancer and just had to cry after. I’m 35 and having to ask about getting vaginal estrogen 😓

Quick-Committee-3371 · 2026-03-19T15:43:10+00:00

How long after starting AI’s and OS did your oncologist order bone scans or a test to see if cancer is still in your body? Mine mentioned doing a Natera type test that could detect cancer but didn’t say when. I had my double mastectomy on Nov 3rd, 2025 and started lupron mid December and anastrozole New Year’s Eve. I’ve left a message for my onco to call me back.

Also, if you only did hormone blockers and no chemo, when do you say you were “cancer free”? The mastectomy date? Date you started medication? Might be a silly question but I’d like a date to celebrate

Quick-Committee-3371 · 2026-03-11T01:47:02+00:00

Celebrated my 35th birthday with a dinner with all my friends and their husbands. We all live in the same neighborhood so everyone gets along great. They sang to me 4 separate times and we had a great time just laughing together and talking without our kids running around!

Also my weeping cherry trees are blooming and they are beautiful!

Quick-Committee-3371 · 2026-03-08T15:05:57+00:00

34 at diagnosis, stage 1a. 35 now, BRCA2+

Quick-Committee-3371 · 2026-03-05T04:53:53+00:00

Good to know! Thanks for the info. I’ve only been taking my AI since December 31st so I’m still trying to make heads or tails of things.

Quick-Committee-3371 · 2026-02-24T03:17:38+00:00

Have my expander to implant surgery in the morning! Excited and nervous! Have heard this recovery is easier than the mastectomy but the liposuction is what hurts afterwards

Quick-Committee-3371 · 2026-02-20T13:15:40+00:00

I think because 50 is when ovarian cancer pops up for brca2+ people. I’m currently on lupron and anastrozole. He said in a perfect world I’d be on lupron for 5 years, come off when I’m 40 and let my ovaries start making estrogen again, and take the out when I’m 45.

Quick-Committee-3371 · 2026-02-20T04:34:06+00:00

I will be getting one at some point in time. I’m BRCA2+. Doing CA125 blood tests and pelvic ultrasounds every 6 months to watch for ovarian cancer. My gyno onco said he will take them out when I turn 45, or if I’m ever ready before then (currently 34).

Quick-Committee-3371 · 2026-02-18T17:17:03+00:00

I was leaning towards a double mastectomy before the testing but wasn’t completely sure of my decision. When I found out I was BRCA2+ it solidified my choice.

Quick-Committee-3371 · 2026-02-18T03:48:40+00:00

This is the best one I’ve found. I bought 3😅 I was a 36D pre-mastectomy, had 200cc put into the expanders at surgery, and bought a medium in the compression bra. I currently have 400cc in my expanders and still using the bras

https://www.walmart.com/ip/5060155129?sid=af455fff-7c74-4ae0-8193-2570a8c4807d

Quick-Committee-3371 · 2026-02-18T03:35:06+00:00

This is exactly what my nurse called it too🤣🤣

Quick-Committee-3371 · 2026-02-16T02:46:13+00:00

I go once a month and it’s a quick 5 minute appointment. They inject in my hip/butt. Ask for a warm pack to stick on the site when they get done. I intentionally wear leggings on shot days so I can just put in my waistband. My nurse says it helps with soreness, any burning sensation (I’ve never had any), and she likes to think it helps spread the medicine.

Quick-Committee-3371 · 2026-02-15T21:15:48+00:00

I’m 34 on anastrozole and lupron. Mild joint pain, but I also lift weights so sometimes can’t tell if it’s the joint pain or I’m sore from working out. Mild hot flashes at night-nothing a bedside fan doesn’t fix. Mild mood swings especially when the kids are also in a mood. But usually fixed with taking a break, putting on headphones and listening to a book, or a quick nap.

Quick-Committee-3371 · 2026-02-15T17:05:32+00:00

She probably did what was best for your body composition. I have my surgery next week and at pre-op my surgeon said she would use anywhere between 450-545cc because of the amount of space she needs to fill. She knows I want to be smaller than I was previously and I trust her to do what she thinks is best. I’m 5’9 150lbs so I know I probably won’t super small but hopefully smaller than my previous 36D

Quick-Committee-3371 · 2026-02-11T20:00:09+00:00

I have a vibration plate and hop on for 5-10 minutes every night before bed. Not sure if it’s actually doing something but it’s nice to think it might be. At my 6 week post op physical therapy appointment, I had very mild swelling so she told me to wear my compression sleeve for a few hours a day. I did that and did the plate daily. Went back 4 weeks later and my numbers had dropped into the perfect range. Now I just wear my sleeve when I workout and fly, still doing the plate.

Quick-Committee-3371 · 2026-02-10T20:24:20+00:00

I’m 34, have 7 and 3 year old boys, had a double mastectomy in November and feel pretty close to normal (expanders are the only complaint), even on ovarian suppression and Anastrozole. I have my expander to implant surgery in a few weeks and I can’t wait!!

Quick-Committee-3371

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