Having preventative surgery in a few weeks. Looking for advice.

rrl

Hi all!



I am 39 and have tested positive for BRCA-1. My Mom also carries the same gene. She has had breast cancer 4 times. I have decided to get a prophylatic bi lateral mx with immediate reconstruction ( implants). I will be having it done in a few weeks. I've never had surgery and I have a low pain tolerance. If you have had this surgery can you please let me know what is realistic for recovery, meaning how long until I'm running around crazy again and how the pain really is. Also any advice on how to manage things post surgery etc.Anyone from Northern VA?



Thanks guys!

ballet12

Hi rrl, there are surgery threads (look at the "all topics" listings) where there are many people having bilateral mx (some prophylactic).  There is also a BRCA thread, but to get the information on what the surgery is like and to post along with others doing the same thing, go to those threads (surgery, reconstruction, etc.)  Many people reading the High Risk forum are not doing (or not yet doing) surgery, especially because the majority are not brca positive.  Good for you for being proactive and best of luck in this journey. If you want to highlight that you are from Northern VA, you can even start a threat in the surgery section asking for those from Northern VA. 

NLMMichigan

I assume you are having doubles? You are doing the right thing being proactive . I have a friend who has the gene and had them both removed along with full hysterectomy. I just had doubles and kind of a wimp but had breast cancer. The surgery is one day not too bad. They give you pain meds during and after. You go home the next day and will need tons of support both helping you take showers , cooking for yourself etc. the key is to do very little . Since you are getting the implants you probably won't go thru everything. It's going to be a breeze. And I am happy for you that you are being proactive and not having to go thru chemo, radiation and all the crap!



Pray and take it one day at a time

rrl

Thank you for your response yes I'm having them both done.

BayouBabe

Rrl - if you have not found it already, please go to www.facingourrisk.org. You will find lots of useful info and lots of first hand accounts of women who have taken preventative steps, such as BMX.



My best few pieces of advice - get a lanyard to use for your drains in the shower. Move things you use regularly out of the upper cupboards and onto the counters. Wishing you peace and pain free days in the weeks ahead! Hugs my BRCA friend!

Crescent5

I have low pain tolerance, and I can honestly say I didn't feel "pain" after my surgeries. I did feel some discomfort later, but I had complications. I was told I'd be back to myself @ 6 weeks (was suppose to go direct to implant), but that didn't entirely work out due to the complications. I think my best advice would be to understand that while you could be back at 6 weeks, you might not be. It wasn't horrible or anything. It just took longer than expected.

This may sound weird, but I was so concerned about immediately after surgery that I sort of forgot that there would be many, many years with this behind me. It seems very odd to think that I went through this a year and a half ago. It's all forward now, and it has been for a long time. You will be there sooner than you realize.

Best of luck to you.

laura11103

Good luck rrl!  I am having my BMX next Wednesday 8/7 with immediate reconstruction (also implants) so also hoping it won't be to painful...  of course I actually have breast cancer unfortunately...  I think you are very brave and doing the right thing... easy to say once you're diagnosed... but you are in such a better position, no worries about pathology and post treatment, you just gotta recover physically...  you'll do great and then no worrying about your boobs for the rest of your life... I'm excited for that part big time...

peanutsgal

I had my PBMX in January and had tissue expanders not direct to implant. My exchange surgery to implants was in April. As far as the pain goes, it is there, but it is doable. The main thing is to remember to keep your pain meds on a continual schedule for the first few days. It is much easier to keep the pain at bay than to try to play catch up to it. When you get your bottles filled at the pharmacy, ask for the non childproof caps. It is much easier to open and it will be one less thing you have to ask someone to do for you. Remember to follow your docs guidelines for raising your arms above your shoulders. Even though you are having a prophylactic you are still at a slight risk for lymphedema although no lymph nodes are removed. Drink plenty of water and get up and move as soon as possible after surgery. The water will flush the anesthetic out of your system quickly and the walking will help with the anesthetic as well as the soreness. I wish you the best of luck and remember ..... The anticipation is much worse than the actual event. Feel free to PM me if you have any questions. You CAN do this!

Katlebbie

Hi rrl, I agree with everything that was said so far. I had mine bilateral mx 20 years ago because of fibrocystic disease. It was painful but I think they have better pain control now. Do what the Dr. tells you. Do not be a hero and think you can do this all by yourself. Ask for help when needed. The best of luck to you. Feel free to pm me if you have any other questions. Please let us know how you are doing. Prayers coming your way for a speedy recovery. You said that you are having implants at the same time, are they going to be expander's with the permanent ones being inserted later? The second surgery will be less painful. Again good luck and keep in touch!

(((HUGS)))

Kat

rrl

You guys are wonderful for your responses. laura please let me know how the surgery went and any challenges etc. Good luck tomorrow. I'll be thinking of you!

Katlebbie

Laura11103 Thinking about you and hoping all went well let us know how you are when you are able! I'm praying for a speedy recovery.

rrl

My surgery will be Sept 13th so I'll post info after it. Thanks for all of your support. Xoxox

jess_rn06

I am having my surgery in two days on the 28th and I can say I am nervous! I had a hysterectomy6 weeks ago and now this. Reading all the discussions have been very helpful! At 28 I don't have many friends that have had any issues even close to mine so all these post have been a blessing!

besa

I second the idea of going to the FORCE web site.  They have a metro DC area chapter -many women in northern VA, suburban MD and DC who have had prophylactic surgeries.  Try emailing Lisa Schlager or one of the other women listed  (If you have trouble with the link contact the main office and they will give you email addresses.) These woman are local and should be able to offer you the exact kind of information and support you want. 

http://www.facingourrisk.org/support/local_groups/virginia_dc.php

http://www.facingourrisk.org/about_us/staff.php

Katlebbie

I hope everyone is doing well!