r/BRCA

I am sitting in my hospital bed with so much gratitude. Today I had my prophylactic DMX. I found out 8 years ago and have done mammograms/MRIs each year. My youngest child is now 2 and I felt like it was time. I’m 36. My pain is well controlled, I’m watching tv and eating a graham cracker and I just wanted to thank everyone who posts here, shares their stories, selflessly provides “TMI” details because it gave me comfort to read so many of your posts. And those who are considering, scheduled or in the trenches, I see you, I’m here with you and you can do this! 💗

I had the meeting with plastic surgery today. I am very large busted (34I). They recommend a reduction and lift before the mastectomy and reconstruction. As we were discussing size after reconstruction here suggested a C cup and i panicked. I have been very large chested my whole life. I am worried I will have really bad body dysmorphia of I go way smaller. I explained that to him and we kind of agreed DD could be done. I liked him and his points were for healing, longevity and the best outcome. I obviously want those same things. I know it sounds very vain. Is there anyone who had a similar size reduction that could talk me through this? Anyone with DD that could tell me how that compares to natural beasts? I guess i an trying to get my head wrapped around this reality. Again, I am sorry Iknow this sounds super vain, I haven't been a DD since 8th grade. TIA

Hello,

I’m looking for people’s experiences with mastectomies/reconstructions (preventative or non, happy to hear all experiences!) What route did you choose? How was the healing process? Are you happy with your decision?

I’m 27F with BRCA1. My aunt and grandma both had breast cancer in their early 30s.

I currently have a mastectomy and DIEP flap reconstruction with nerve reinnervation (hopefully) scheduled for July. I feel very confident that a mastectomy is the right choice for me, though it still feels very emotional. I’m very concerned about whether the DIEP flap is the right choice. I like the idea of feeling natural but am concerned about the long recovery time and potential complications. I also generally have medical anxiety so it’s definitely making things more difficult.

Appreciate any advice or personal experiences people are willing to share <3

Last min shopping to keep my mind quiet. I have wedge pillows, 2 tanks with pockets for drains, shower drain holder, ice packs, spray deodorant, dry shampoo, button front pjs and zip up sweatshirts. I will have expanders. Staying overnight one night at the hospital and have a blanket to take with me. What else am I missing? ❤️

Exactly one week out from my preventative double mastectomy with expanders and nerve allograft reconstruction, and honestly… I feel immensely relieved to be on the other side of this surgery. The anxiety leading up to it became so debilitating that finally waking up afterward felt like exhaling after holding my breath for months.

Recovery has definitely been up and down though. Overall I am improving, but the pain comes in waves and my right side hurts SO much worse than my left, especially underneath the breast near the incision where they dug tissue out. Sometimes it radiates through my chest like chest tightening and then into what feels like my back/right shoulder blade.

The newest thing bothering me a little is what I think are my nerves “waking up.” I’ve never had a tattoo before, but the closest thing I can compare it to is feeling like I’m being tattooed from the inside out. Random electrical zaps, burning, stinging, weird sporadic sensations deep inside my chest.

Did anyone else experience this around the one week mark? Especially those with expanders and nerve grafting/preservation? I have my post op appointment tomorrow but would love reassurance that I’m not losing my mind over here.

I had my exchange surgery March 23.
So I’m almost two months out. I have very little body fat so couldn’t do Diep flap. However, the plastic surgeon I had did liposuction on the insides of my thighs (which didn’t have much fat) and a little on the hips. My thighs were excruciatingly painful for a month. And blackened with bruises.. I was unaware of how severe this would be. But the biggest disappointment right now is the implants have ripples in them. The placement is nice and symmetry, but the fat that was harvested from my legs, and put around the breast implants to fill in, etc, must have dissolved or spread out because all of the fullness has dissipated and the ripples in the implants are just all too present. Is this just something most women have to expect who don’t have much body fat that have this surgery?
I’m not sure if I’m setting my expectations too high or?

Laura

So not BRCA but PALB2 and there doesn't seem to be an active community.

Just started my surveillance this year as a 36F. Had my first MRI and they found a likely lymph node. Got an ultrasound to clarify it further and the ultrasound report suggested an MRI guided biopsy.

For those who have had one - how much do they hurt?

Do I need someone to come with me?

Could I head to work in the afternoon?

The spot they're biopsying is about 5mm in my axillary tail.

Any words for advice or stories of people's experiences would be appreciated.

Hi, I don't know where to post this, so trying here. I am trying to figure out what to do. I was told I am positive for the PALB2 gene mutation a few years ago. I have a high 90's% chance of breast cancer. It isn't an if, it is a when I get breast cancer. So I know all that....

Yesterday they found a complex cystic lesion in my breast. They said to just to follow up ultrasound in 6 months. I asked if that is the standard care or what I should be doing with my history. She said that is just the standard. I asked what should I do then given my significant history. She said just follow up with the doctor at my next visit when I come in for my ultrasound of my ovaries.

Should I push and be more concerned (like I feel like I should be doing) or just wait the 6 months? I have reached out to the breast health clinic, but they are always days before getting back to me. Does anyone have PALB2 & found a complex lesion. Is it something or is it normally nothing?

I just had an annual mri 3 days ago and the radiologist called to say they see a mass on my right breast. It’s ovoid .7 cm. They scheduled me for an ultrasound and mammogram this am and radiologist on call said he couldn’t find it. Scheduled for biopsy next week in the mri machine. They didn’t give it a letter but said birad 4. My family mostly has digestive cancers. No breast cancer on either side of my gene pool but i know that means nothing. Feeling sad as I have 2 young children and am only 33 yo. I don’t have dense breasts (feel like I’ve never heard of anyone who doesn’t have dense breasts).

Just looking for support

I just had my exchange surgery yesterday, and I am amazed at how different this experience has been compared to the mastectomy and expanders. So far, my pain has only been a 3/4 out of 10, and it's easily controlled with Tylenol, Motrin, and the prescribed Oxy.

I haven't gotten to see the results yet, but I'll be able to take my first shower post-op on Saturday, and I am so excited to see how they look

I just wanted to write a post for anyone who's in the middle of recovering from a mastectomy with expanders to say it does get better, and you can do it.

Hello everyone,

last year I fought breast cancer (28w, got the diagnosis with 26) and I just finished my last immunotherapy (Pembrolizumab) in April. Now my oncologist called me, saying that I should do a maintenance therapy with Olaparib for a year. I'm seriously struggling with this, because no one ever told me and the side effects of Olaparib are not as easy to think of for a year. I'd like to gather some experiences of people that took Olaparib or that denied it, to make up my mind about that therapy.

To judge my situation I should tell you the whole story: I felt the tumor last year in January and got an appointment in February for a biopsy. Turns out, it's TNBC, no metastases though. I started a treatment for cryoconservation of ovary cells, since I knot that I want to have kids since I was a child myself.

Chemotherapy started end of March with 4 EC and 12 cyclin-something (can't remember), at that point my tumor had a sice of approx. 7 cm and it could never be identified whether lymph nodes we're contaminated as well. Throughout all that time I also got the immunotherapy. Chemotherapy fucked me up quite a bit, but I fought through it, still went to university to finish my master's degree and here I am starting a PhD this month.

Anyways, in October I got both my breasts removed, since I got to know about my BRCA1 mutation and I couldn't stand the thought of waking up every morning, feeling a nod and being afraid that it's cancer again and not just some tight tissue because of hormones and stuff. Also six lymph nodes were removed, just to make sure, since we never knew about their status.

Three weeks after my operation I got 20 radiation treatments of the sick breast and the corresponding armpit. The pathology stated, that all the removed tissue and also the removed lymph nodes were clear of cancer cells.

I continued immunotherapy until beginning of April this year.

Like I said, now my oncologist called me about the Olaparib and of course I read about the side effects and the rather harsh treatment. I don't know if I should do the treatment or not, since it's not going to get the risk of relapse down to 0, it's only going to reduce it further. But somehow I feel like I have done more than enough (getting both breasts removed, e.g.) to reduce my risk already and I'm thinking how big is the chance, that cancer cells survived this whole journey?! I was so happy to end immunotherapy and as I thought all my treatments, then this came in... I'm barely gaining back life quality, just doing what I want to do, gaining strength and trust in my body again. I feel like I can't handle another year of treatment, I don't know, at the same time I don't want to have cancer ever again. But in the other side I'll have to deal with it anyway due to my risk for ovary cancer.

To sum it up, I don't know what to do. I'm hoping for people that took it and people that denied the treatment to tell me of their way of decision making, how you felt, what your doctor said. Just some input to get an idea what to do.

Thanks guys!

I had my mastectomy on February 25th with expander placement, and recovery has been harder than I expected. I still have nerve pain, and the expanders are so hard and uncomfortable all the time.

I have some good days the end up making me really self-conscious about how everything looks. I was able to keep my nipples, which was really important to me, but now I feel insecure when they get hard because they don’t look symmetrical. My right side looks fairly normal, but the left nipple kind of points off to the side. The expanders are so hard and fixed in place that I can’t really adjust or reposition anything.

It’s honestly been affecting my self-esteem because I’m trying so hard to look and feel as normal as possible, but the asymmetry feels really noticeable to me. I have 5 more months of expanders and hope the exchange will fix the problem.

Has anyone else experienced this with expanders? Is it temporary, and can it usually be corrected during the exchange surgery?

Hey, my wife is having her surgery on Tuesday through the NHS. I was looking for advice for what to expect and any last minute prep I need to handle.

One thing that we are not sure of is how long she will be in the hospital for after surgery we’ve been told 1-2 days and also 5 days.

Also any must haves to have at home to make recovery as easy and comfortable as possible.

We also have 3 kids 12, 10 and 2 so I’ll be handling them while helping her. So some advice would be greatly appreciated

Thanks in advance

I’m 35, brca1+. Started doing all my baseline tests and imaging this year. MRI last week came back with 0.6cm focal non mass enhancement, no lymph node involvement. Talked to my doc this morning and waiting on scheduling to call for biopsy appt.

Can I hear some positive info please? Trying not to spiral. Thank you.

ETA a bit more info:
This is my first breast MRI. I have extremely dense breasts.

At the urging of my obgyn I got genetic testing done a month ago, and it turns out I have the brca 1 mutation. I’m honestly freaking out and so scared about next steps, but my doctor hasn’t even called me with the report yet, I got an email from the testing center with it a couple weeks ago.

I’m kind of at a loss of what to say to contact my doctor- like “hey remember that test you wanted me to take, it’s now positive! Now what?” I’m already feeling scared and lost from getting the results, and the zero guidance on next steps or even showing any sort of care really, are making it worse.

Sorry for the rant, but I guess I’m looking for advice on how to reach out to your doctor about your results? Sorry if this isnt allowed!

Hi ! Just wondering if anyone in Canada has ever donated their eggs even though they are brca1 positive. Just trying to figure out if I can donate my eggs before getting surgery later on. 😊

26F, tested positive for BRCA2. When I got the diagnosis I was naïve. Somehow convinced myself this is no big deal.
Today I received a call from a breast specialist. Her urgency terrified me. I feel like my world is crashing down. At the same time I feel like I am being so dramatic. I need help. I don’t know how to feel. I am struggling.

I ve had 2 mammograms in the last 2 years where one of my breasts is becoming very very dense.
I have breast, ovarian, skin cancer and prostrate cancer on the maternal side(great nan, auntie, nan and grandad) due to this. (I had cervix removed at 30 for pre cancerous cells and both vault smears were clear after, also a hysterectomy for endo).
I have a form to fill in for regular checks but the doctor wanted me to do the gene test I said no, so just wondering if there’s a reason he’s contacted my doctor and the gene people (he was really lovely). Gave me info to read and I’ve done my own research. My dad has just been diagnosed PV which I should have mentioned. And on doing the form found out I had a bio grandad (dads side) who died in 50s of prostrate.
I’m scared to say yes to be honest.