Prophylactic mastectomy

Hi, I 've tested positive for BRCA1 gene mutation and am planning a bilateral prophylactic mastectomy. I have a long family history of breast and ovarian cancer, including my twin sister who was diagnosed at age 49 with advanced breast cancer.

Can anyone give me ideas about what to expect after the mastectomy, how long I will be incapacitated?
If anyone has had this surgery, I'd like to know if you had a latissimus flap or just reconstruction with an implant?  For those who had a Latisimmis transfer, did you have problems, diminished strength in your back, back pain?

Thanks.

[PaulMD]

Hi.

I would agree with your decision to have a prophylactic mastectomy since from your family history and your testing positively for BRCA1, you are really at a high risk of getting the big C in the future.

After bilateral mastectomy, I expect that you can have an almost full recovery a month after the procedure.  You have several options for reconstruction including the implants or the muscle+skin flaps.  Skin flaps would have longer scars and would take a longer time to fully heal.  As far as pain and diminished strength is concerned, you would expect some loss of strength of about 10% using your back muscles.

Silicone implants are also a good bet, and this can be placed immediately during the procedure or using tissue expanders first and putting the implant later (your reconstructive surgeon can guide you more on the advantages or disadvantages of these.).

Good luck with your operation.  Regards.

[JPL19]

I am a little over 4 weeks post preventative bi-lateral mastectomy with reconstruction.  I did not have the gene, but I do have a significant family history (both mother and maternal grandmother diagnosed at age 52).  I was able to do an immediate reconstuction with implants.  I did not need expanders (I was reconstructed significantly smaller in size than I was to start with).

Of course everyone is different and your doctors will want different things, but I went back to work after three weeks off.  I work as a prosecutor and I still had a lifting restriction at 3 weeks so I had to adapt a bit.  Also, I found it difficult to get to the bottom drawers of file cabinets (I found bending over AND pulling out to be a bit much 3 weeks post surgery), but my co-workers and my secretary helped me out in those rare occasions that I needed help.  In retrospect I think it would have been nice to have that third week off, but my vacation time ran out and short-term disability would only cover two weeks so I thought it silly to be sitting at home when I could be workig with some limited help.  I do know people who have returned to work after two weeks.  It can be done.  I had planned on only two weeks (I didn't want to mow through all of my vacation time) but my drain on the left side did not come out until 14 days post-op.  I really wanted to have a full week at home without drains before I went back to work.

The drains are the worst part of it.  They are gross, painful but mostly annoying.  My drain on the right side was in for 10 days.  The drain on the left for 14 days.  The doctors will tell you 7 days for the drains.  Don't believe them.  It will be longer.  

The pain for me was very, very tolerable.  I stopped taking Percocet at day 3 and lived just nicely on Tylenol.  A Valium in the morning helped me "deal" with the drains and I would suggest that if your surgeon does not.  After the drains came out I stopped taking the Valium and switched to Tylenol with Coedine if I had a bad day.  Expect days where things actually hurt a little more than they did the day or two before.  For me, as my mobility increased I did more and I think that after a few days of doing more you have a pretty darn uncomfortable day and then it gets easier again.  Really, just buy a gigantic bottle of Tylenol and you will be fine.

I have two small children (a 4 year old and a 2 year old).  If you have kids, you won't be able to pick them up.  That is brutal.  I had lots of help from my husband and family.  I had a family member (aunt) stay with me the first week.  That was a great help, really just mentally.  I was getting around well and doing some limited things around the house four days after surgery.  But, you will need help, at least for two weeks.  I was able to pick up my two year old (he weighs a hefty 32 pounds) yesterday.  That was awesome.

The scars healed up quickly.  I have one vertical scar and one long horizontal scar underneath.  At the intersection of the scars I have had problems with healing.  This is apparently not unusual.  That triangle section is just now healing up.  It takes some time to pay attention to it (I clean it with hydrogen peroxide and apply Neosporin three times a day) and change the dressing for that area, but it is not horrible.  I think I will not have to do this anymore in a few days.

I did a skin graft for the nipple area using my own areola.  It is amazing to watch that heal.  It is probably 99% healed at this juncture.  I was not going to do it at all (I figured I would get a tattoo later) but my plastic surgeon encouraged me to do it.  I'm glad he did.  Af first it look horrible, but now it looks really, really good.  It looks very natural and was a really good choice.

My right arm has great mobility four weeks out.  My left arm not so much.  I'm having some pain where the drain was located in that arm and I suspect I may have some nerve damage on the left side.  I think it may be a little too early to tell on that, but I have some tingling sensation and numbness on the left arm that I am concerned about.

I'm told that things will strech and move and change for the next two to four weeks.  My plastic surgeon has told me not to worry about anything other than the scars and the areola until at least eight weeks out (basically he told me not to be concerned about the shape or size of the breasts yet).  I hope he is correct because they are not desirable at this point.  I do know people who have had their implants adjusted.  A friend had one lifted 6 months after her surgery.  The procedure was on a Friday and she was back at work on Monday so apparently it is not a big deal after the fact.      

I do know two people who had TRAM flap reconstruction and both people I know really, really disliked it.  Both are not pleased with the result and have significant muscle loss because of it.  The one person I know with implants loves hers, but did have to have an adjustment made.

Good luck with your surgery.  I'm only four weeks out and I've had some complications, but I'm still overall pleased with my choice to have the surgery.  It is a great relief to not have cancer hanging over my head.  My friend had the gene and years after the fact she says the surgery was the best decision she has ever made.

Please post with any other questions.  I'm happy to help a fellow runner.  I've run three marathons and two halfs and hope to do more after this.  

    

[marathonrunner]

Hi,JPL, I cannot thank you enough for taking the time and energy to write this.  I am also a lawyer, so your post was even more on point for me.  I have no kids but 3 cats, one almost 20 pounds.  I learned the meaning of "herdng cats" when I had my oopherectomy done in December--getting them inside without picking them up and carrying was a real challenge, and they only get to go outside when I am here to supervise!  That's going to be another issue after this surgery.

I've done 9 marathons and two "ultras" (31 mile--50k trail runs).  Right now I am down with an annular tear in my L4-5 disc and am thinking that while  I am on no-running status with that, I should get this surgery done so I won't have two periods of disability.  I had planned the surgery for August but have not found a combo surgeon/plastic surgeon I like.  On the off chance you are in the Mid South, do you know of a good combination?  I've looked in Memphis,Tenn., Jackson, MS, and Little Rock, Arkansas.

Again, thanks very much!

[healingwell62]

Hi,

I just wanted to introduce myself.  I'm Chris, the Breast Cancer Community Leader.   I read your post, and JPL's response.  She provided such a great description of her experience with surgery and reconstruction. That's the beautiful thing about our community and members. I'm proud and gratified to be a member here when I read an exchange like yours.

Warmly,

Chris
Healingwell62
BC Community Leader