Prophylactic mastectomy

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Littlelisa1989
Littlelisa1989 Member Posts: 1
edited June 2014 in Genetic Testing

Hi Ladies,

 Im 22 years old and today had an appointment with breast surgeon and booked a double prophylactic mastectomy for two weeks time. Im BRAC1 positive and have a very strong family history.

 Im just wondering more about the surgery itself in terms of pain, the drains , what pain control you had after surgery etc? how much you were able to do afterward?

 Sorry for the loads of questions but really stressing and theres only so much info booklets can give you! would feel so much better hearing it from a real person whose been there.

Thanks everyone, hope your all keeping as well as you can be

:-) x

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited November 2011

    Hi Littlelisa1989 and welcome!

    You should certainly find some great support here from the ladies on the boards. In the meantime, you may find some information helpful on the main Breastcancer.org site in the Prophylactic Mastectomy section, including what to expect with the surgery.

    Hope you find this helpful, and good luck to you!

    --The Mods

  • marial
    marial Member Posts: 255
    edited November 2011

    I'm so sorry you are here..I just had a prof mastectomy and tissue expanders inserted last week..I have 4 drains..hoping to get at least 2 removed todsy..that's the hard part to deal with..the pain from e mastectomy is minimal in my case..the only thing is you can't use our arms for pressure..like moving in the bed and getting up and down..you need to rely on your legs..but at pen week that is much better as well..after the mastectomy it's pretty numb so the pain was very toerable

  • crystalphm
    crystalphm Member Posts: 1,138
    edited November 2011

    I really wish you the best. I think a prophalic mastectomy is easier to heal from, I had one of each, and when they remove lymph nodes, the healing seems to take longer.

    My surgery was 2 weeks ago and I can already sort of curl on my side to sleep, the pain would fall into "discomfort" or tightness (like duct tape is stuck to you) rather than sheer pain...I take advil now at this point, maybe every other day. but I don't mean to minimize it, it is a real discomfort.

    You have the gift of time on your side to make the right choice....get a second opinion, chat with people on this board, and feel good about your answers. I am sure there are many others in your position...

  • thatsvanity
    thatsvanity Member Posts: 391
    edited November 2011

    Hi,

    I had a prophylactic bilateral mastectomy May 26, 2011 with immediate reconstruction and I didn't have much pain at all, but I everyone's pain threshold is unique. The hardest part was not being able to eat before surgery, and the Patience required to heal properly---you can't go swimming, but its winter now. The drains are not bad you just have to drain them as they fill up with fluid, but I am sure your doc will answer all of your questions. Good luck to you!

    Amy

  • undercoverebel
    undercoverebel Member Posts: 646
    edited November 2011

    Lisa they gave me an on q bag that numbs you so for 3 days I felt nothing. The drains were slightly uncomfortable if I sat too much against them in the chair. The way to fix that is by putting narrow pillows behind your back. That way the chair and the pillows won't touch the drains. They should be narrower than your back.

  • Snobird
    Snobird Member Posts: 593
    edited November 2011

    If you are considering reconstruction at the same time you might want to check out the DIEP 2011 or NOLA in September threads for information and experiences of women who chose that route.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2011

    littlelisa - also consider a skin sparing, nipple sparing with immediate straight to implant.  I think it might be a good option for you.

  • ThisTooShallPass
    ThisTooShallPass Member Posts: 101
    edited November 2011

    Lisa, I'm 27 and just had mine done yesterday. I had nipple sparing and skin sparing bilateral prophylactic mastectomy with immediate implant reconstruction.



    Pain: it's not that bad in my case, the closest example would be if you ever worked out your chest in the gym x 5 soreness and limited use if arms. I today is only 24h post surgery and I am already alternating prescription pain meds with over the counter Tylenol. Drains don't hurt but you are always aware they are there. I think if you have a good pain management plan and stick to your meds, pain would be manageable with lots of rest.

  • Fyrckr2003
    Fyrckr2003 Member Posts: 2
    edited March 2014

    hello ladies I just got news yesterday that I have tested positive for the gene. My mom and my aunt both passed away from bc so I am considered high risk . I am considering getting a double prophylactic masectomy and was just wondering if anyone can give me any info on this like recovery time pain and before/during/after surgery. Thanks so much!

  • DiveCat
    DiveCat Member Posts: 968
    edited March 2014

    Fyckr2003 - sorry to hear you are BRCA+. I HIGHLY recommend you venture over to the Facing Our Risk Empowered (FORCE) forums. Many women there have had PBMX with or without reconstruction, oophs, or who choose surveillance, or both, and so on. Also, look into their conference coming up in June in Philadelphia. There is info on the site about it, but it is a great way to meet other previvors and get lots of VERY good information whether you choose PBMX, screening, etc. They have lots of sessions on all sorts of topics associated with hereditary risk, from genetic testing to preventative surgery, to reconstruction complications, to new research. 

    As for generally, it REALLY depends on whether you get reconstruction, what kind of reconstruction, and your own body. You can read the Surgery and Breast Reconstruction forums here, as well as look over at FORCE to get a good idea. I also recommend you pick up a copy of The Breast Reconstruction Guidebook by Kathy Steglio (I think that is her last name!). Very good. I have leafed through my copy several times and will do so again as my surgery approaches and think it is great for your partner, caregivers, etc to read too.

    I am doing a one-step to implant surgery, and recovery for that to the "usual routine" is expected to be about 6 weeks, but of course everyone has a different usual routine. As mine involves quite a bit of intense physical activity I expect it might be a while longer before it is really back to MY usual, but I do expect to be able to do light routine things by 3-4 weeks, and back to decently normal by 6, but will let my body let me know :)

    Pain of course can vary again depending on the surgery and YOUR own pain tolerance. Generally you are given narcotics, but many do wean themselves off them quickly and use muscle relaxants or over the counter pain relief. But, yes, it will be uncomfortable, painful, sore, restricted for a while.

    During surgery I hope you don't feel any pain, you should be knocked out, ha! And before you also should not feel any pain, because it's before ;)

  • Fyrckr2003
    Fyrckr2003 Member Posts: 2
    edited March 2014

    good afternoon dive cat and thank u for all of the info and good luck on ur surgery! This is all so new to me and I will consider all info!!!

  • Georganne
    Georganne Member Posts: 75
    edited March 2014

    My experience with a prophylactic mastectomy was in 2009. I am BRCA 1 & 2 positive. I had the surgery, and expanders were put in. I healed for about 1 month, then began expansions to let my skin stretch to receive implants. I got 8 expansions over two months. Next, I got my implants. After a few months, I had fake nipple reconstruction, then healed for a month and got tatooed to add color. Throughout the whole process, I took pain meds  and tapered off to Advil. I can now relax knowing I put breast cancer fears behind. I hope things go smoothly for you!

  • LovieLovie
    LovieLovie Member Posts: 68
    edited March 2014

    The drains are the not fun.  The hospital gave me a little terry cloth belt with pouch for the drains called The Marsupial which helped SO much.  Better than pinned to the inside of your clothes.

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