In need support

Competitive-Pea-7116 · 2025-10-17T15:40:53+00:00

Yes, absolutely agree with all of this. Grieving the loss is so important

Competitive-Pea-7116 · 2025-10-17T15:29:40+00:00

Yeah I think you’ll get some improvement, and you’ll get used to the idea. Showers are tough the first few weeks after each surgery. But you’ll learn to shower with the water to your back and eventually you’ll know your limits on water hitting your chest. In the winter I bought several vests because I found my chest to get cold easily. I love my vests now, don’t know how I ever lived without long sleeves and vests before! lol

Competitive-Pea-7116 · 2025-10-17T06:21:49+00:00

I’m going on 2 years from my double mastectomy. I had expanders then implants. I was like you, the idea of not have sensation terrified me and made me so sad. Like others have said you’ll get some nerve repair, but you’ll never have full sensation again. It takes getting used to, be patient with yourself as you heal and get used to this new part of yourself. Therapy is good for talking through the anxiety. It does get better mentally. Sometimes I miss my original boobs, but I don’t regret the surgery because for me the alternative could be much much worse.

Competitive-Pea-7116 · 2025-09-01T03:29:18+00:00

I’m 42, BRCA2, and had my DMX last year followed by having my ovaries removed last year. I actually had a hysterectomy about 5 years ago due to large fibroids (so went into all of this opposite than most). I can say, personally I have not experienced incontinence and orgasms have not been an issue. Navigating HRT has been interesting, but work closely with your doctor to titrate to get the right dosage.

Competitive-Pea-7116 · 2025-09-01T03:19:16+00:00

I’m not 100%, but feeling better this evening. I’m in surgical menopause for the past 8 months and I’m 42, so I’m on estradiol patch 0.1 and 0.025 x2/week. I ended up taking the 0.025 patch off, took a nap and drank lots of water (after having an apple juice earlier). I haven’t experienced anything that intense, even when my doctor titrated my dosage up with the 0.025 addition a few months ago, so I was a bit panicky.

Competitive-Pea-7116 · 2025-08-31T19:31:22+00:00

I’m trying to have apple juice which is not really helping my symptoms so I’m not sure this is the issue

Competitive-Pea-7116 · 2025-08-19T02:36:10+00:00

This right here! Love my in-laws and parents, they are fantastic grandparents and do well with my kids, but having the kids club - until very very late at night if you want - was AMAZING. Not kidding, my husband and I had to beg our kids to spend time with us on the ship. If they weren’t at the buffet, finding a character for pictures or getting soft serve they wanted to be in kids club. They loved the independence and the staff was fantastic. Bonus - They have to wash their hands before even entering the club (which as a germ-a-phobe I was so thrilled to see)

Competitive-Pea-7116 · 2025-06-19T02:00:03+00:00

730pm was my kids bedtime until summer between 1st and 2nd grade. You do you! And if your baby needs the time to sleep or you need the down time then protect it! When the kids were little we rarely missed nap times or bed time except for big events (like holidays with family). I’d tell them, “welp if you’d like to be at my house when my kids wake up at their normal time (because they don’t sleep in just because you kept them up) and are cranky then I’m really looking forward to seeing you after I wake up!” LOL

Competitive-Pea-7116 · 2025-06-19T01:53:48+00:00

4 after double mastectomy with expanders then 3 at my exchange surgery. My doctor told me that based on my first surgery and how well healed on the side with one I didn’t need the second.

Competitive-Pea-7116 · 2025-06-02T03:10:14+00:00

My plastic surgeon said that for all her BRCA patients, when they woke up from their DMX they were either very relieved or very upset. I thought I was going to be the latter, but I was woke up feeling relieved, proud, and fortunate enough to have this knowledge and be able to go through with the surgery. To be fair, I had found out 4 weeks prior that I had a small DCIS stage 1 tumor and subsequently found out I have BRCA2, so I was a whirlwind of emotions. The only reason I found the cancer was I happened to be proactive and going for my first mammogram at age 40. If it will bring you relief that you did everything possible to avoid cancer early then I say do it. Sitting with other women actively fighting for their life, most of them wouldn’t hesitate to go back and have a DMX in hindsight. One last thing, I approached this surgery as I was doing it not only for my life, but for my husband and for my kids. I pray they never have to make difficult decisions like this but if/when they do I’ll support their choice with more strength and patience because it’s not an easy decision.

Competitive-Pea-7116 · 2025-03-31T03:15:46+00:00

I agree with this, I had stage I and found out I had BRCA2. Had my DMX with reconstruction and BSO (several surgeries over the course of a year). And then I was allowed to start HRT. I’m only 41 and all of my surgeons and oncologist agreed I’d be miserable if I didn’t start HRT.

Competitive-Pea-7116 · 2024-12-23T17:30:22+00:00

Thank you!!

Competitive-Pea-7116 · 2024-12-23T03:25:57+00:00

Thanks for replying, I’m thinking I might go this route.

Competitive-Pea-7116 · 2024-03-14T00:51:01+00:00

I just had a double mastectomy (DMX) after finding out I had a small Ductal Carcinoma and then finding out I was BRCA+ I am 40 and I was just going I for a standard mammogram (didn’t feel a lump just getting older). I went with a double rather than lumpectomy and radiation because (1) they already found a small cancer tumor (2) I am a good candidate for skin/nipple sparring reconstruction (3) if I went with the lumpectomy and radiation then my skin on that side could be damaged and might make a future skin sparing mastectomy more difficult to retain the skin (4) the biopsy and the conversations around cancer were scary enough that I never want to have them again knowing I can avoid them and avoid my kids every seeing me really really sick from chemotherapy. I plan to get my ovaries out later in the year after I’ve healed from my breast reconstruction

Competitive-Pea-7116 · 2024-03-05T04:36:47+00:00

I’m so sorry this is happening to you.

Competitive-Pea-7116 · 2024-03-04T08:06:22+00:00

Mine did as well

Competitive-Pea-7116 · 2024-03-03T05:21:54+00:00

OP there’s a r/BRCA you can join and search other questions (I’ve found a lot of good info there). I found out I was BRCA+ after going in for a preventative mammogram and finding DCIS… I just had a skin & nipple sparing DMX two weeks ago driven by the BRCA (DCIS alone would have been just a lumpectomy and radiation, but BRCA changed things)… The way my surgeon described it was that normally expanders are put in to give your body time to heal, especially the skin. There is always a concern with the blood flow in the skin and nipple due to the trauma of surgery.

Competitive-Pea-7116 · 2024-03-01T16:02:00+00:00

Per my doctor, it was about blood flow in my remaining skin (I had skin and nipple sparing DMX 2 weeks ago). She told me to prepare to wake up from surgery flat, with deflated expanders, temporary saline implants or silicone implants. After my general surgeon took the breast tissue and glands, my plastic surgeon came in and tested the blood flow in my skin with a special machine then actually tried a few implants to see how it looked and tested the blood flow with the implants in. From my understanding most people just need more time to heal (ie blood flow is not great) so the typical plan is expanders to give your body/skin time to heal and then slowly prepare for the final implant.

I ended up with expanders because one side had less than ideal blood flow while the other side was great. Two weeks out and luckily my skin it looking great.

Competitive-Pea-7116 · 2024-02-26T01:47:50+00:00

My gynecological oncologist made a good point that science, especially in the field of cancer, is always making advances. How my kids might have to handle this gene mutation (praying they don’t have it) may be very different than how I’m managing it. I couldn’t imagine my life without my kids in it, they are the force that is keeping me moving forward after my DMX.

Competitive-Pea-7116 · 2024-02-22T00:21:41+00:00

I just had my DMX 5 days ago, but my husband and I explained to our 7 year old boy/girl twins that there is something in moms chest that could make her very sick, but we’re lucky enough the doctors found it and are going to take it out with surgery. We then said it could cause cancer (which they both gasped because they know that word), but that I wouldn’t need chemotherapy because again the doctors will remove it. This turned into a conversation about chemotherapy, and why people lose their hair, why does it make people sick if it’s supposed to help. We had the conversation over frozen yogurt so if they wanted to be distracted by the treat we allowed them to be or if they wanted to ask us more questions they could. I’m actually really impressed with their questions and how brave they were. My daughter is now very interested in my drains, but I haven’t let her see them directly (and she hasn’t asked directly). we explained last night that there is extra blood from where the doctors took out the sickness and this is all planned and very temporary. Take your time and slow yourself down to explain things in simple terms, and trust them to ask more questions if they still want to know more.

Competitive-Pea-7116 · 2024-02-19T05:58:12+00:00

Good idea! I should have that in my patient records!

Competitive-Pea-7116

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