BRCA1 + and need advice

I don't know about catheters. I had bmx as well as pbso. No catheters for that either. Check the FORCE web site. Everyone there is brca positive

This is my first time even on this site so I was meant to read your post.  I am also 27 years old and BRCA1 positive.  Believe it or not, I am also terrified of catheters!  Every woman on both sides of my family were diagnosed by age 50, many before age 40, none of which survived.  I visited many doctors starting at age 18 about having the prophylactic mastectomy and they all urged me to have the mastectomy as soon as possible.  However, I waited until this past June to proceed with the procedure, and guess what? Noooo catheters for any of the procedures:))  I guess every doctor will be different, but mine did not use any at any point.  When I woke up from my first surgery, the first thing I did (after looking at my chest) was rip up the sheet and look for a catheter!  The concern does seem stupid, but I just wanted to let you know I had the same stupid concern Oh yea, and the whole process is nothing like what I imagined it would be (way worse), I don't want to sugarcoat it, HOWEVER, imagine the alternative. DO IT! You will not regret saving your own life...

Hey msv, I had a hysterectomy -- no catheter. If you end up having a hysterectomy, make sure you find a doc who can do it laparscopically. That reduces recovery time by lots, and I didn't need any pain meds after the first 24 hours.

   I am BRCA1 positive and came across your message. I am 46 years old. I was diagnosed with ovarian cancer  (stage 3) a year and a half ago.  I had no symptoms. I was just going for my routine mammogram and pelvic ultrasound. Ovarian cancer ran on my father's side. None of the drs I had ever seen suggested I get the BRCA testing. In fact, they all assured me it passed only from the maternal side. Despite the drs' complacency, I insisted on yearly ultrasounds. Eight months post chemo and cancer free, I just had a prophylactic mastectomy. You are 27 years old--  don't worry about catheters... I'm not sure what you mean??drains after the surgery? they are not pleasant but it is for a week or so. The discomfort is nothing compared to open surgery, chemo, fear of recurrence...You have time and your feelings will change (after children). You are more brave than you think. You are in control and you will be ok.

If you have a hysterectomy, search until you find a doctor who can do it laparoscopically. You won't need a catheter. I had a laparoscopic hysterectomy for endometriosis, and unfortunately had it on my bladder. I would have gone home that very day except I couldn't urinate and then had to have a catheter placed. I am very sensitive to needles and such, but the nurse was amazing and the catheter placement was no big deal, honestly. But again, I wouldn't have needed it at all had my bladder not been in shock from the surgery. .

Hi MSV1984, sorry that you have occasion to be thinking about all this stuff too.  I am not BRCA + but my oncologist thinks I have something (I am 5th on my father's side in the last 3 generations and was dx at 35, his sister dx at 28).  So they also recommended that I retest every 3-5 years or so and I got enrolled in the ovarian cancer screening program. And I got a L prophy MX (I had R multifocal multicentric ER/PR - DCIS at 34).

But I thought I would pop in to comment Re: recovery after breast reconstruction.  I think that this is very dependent on who does your surgery as well as what kind you get done.  I went with a perforator flap, and I was pretty busty before (DD++) and am overall happy that I did.  I certainly however had some significant complications at the time of my surgery at well known chicago based National Cancer Institute center.

If I had it to do over again (and were choosing the flap again, which I certainly would), I would recommend that you do research and pick a top group to start with.  I have had 3 surgeries now, and the pain was very deal-able with each of them (and the urinary catheter was out within a day pretty much before I even noticed it and the IV catheters were not painful at all). And had I started with a better plastic surgeon to begin with I would only have needed 2 surgeries instead of the multiple I am ending up with now.  Check out the following websites and also the FORCE website as others have mentioned about to see what is possible with reconstruction. A prophylactic nipple sparing mastectomy may be an option for you if P BMX is on the table. It is a sucky decision to have to make, but even with my complications the experience, while incredibly emotionally difficult, has been very doable in my opinion.  Best wishes to you. 

www.breastcenter.com

www.drmarga.com 

http://www.naturalbreastreconstruction.com/