Moving forward with Masectomy

keetmom

Im a mom of 3 daughters, 2 daughters with high needs...My youngest and I both have a genetic disorder called Neurofibromatosis, where we are missing the tumor supressor (Intrestingly it is carried on gene 17, which I have read that DCIS also is) she has had major issues in the past 5 years, involving most of the time in chemo, a leg amputation and recently spinal fusion, 20 some surgeries in all..as you can see I have been quite busy taking care of her. finally I got in for a check up  my self and now I am the patient:  I also have a family history of BC, with that and the fact that NF and radiation dont mix well and a recent report says people with NF shouldn't take the tamoxifin. We have decided to go forward with a bilateral masectomy..my BS says she doesnt encourage that but if she was me with my family history/genetic make up she would do what I am doing. I am 100% confident in our choice (They do believe it is stage 0, but until they are in there obviously they can't be sure) so what do I expect as far recovery after?? We are staring reconstruction immediately, haven't met the PS yet. I was just diagnosed last week and met the BS on Friday, had seen her for other things before and really like her.  Guess I just need some support!

camillegal

Oh wow I'm so sorry for all of u'r situation--I know women who had the whole gambit of recon will be able to tell u.  All I had was everthin removed and that was a breeze as far as pain goes but I know there is more in recon. and I think u'll need someone to help u at least at first. But as I said someone with the experience of it will be able to fill u in---so to speak. I wish u the best of luck and a speedy recovery.

lcm123

Hi, keetmom, I am sorry for all your troubles, but I know those babies bring you more joy than your heart can hold.  My big teenager is still a baby, too, so I still call 'em babies!

After my mammogram, I had an appointment with a surgeon who did the biopsy, and diagnosed DCIS, and said I would need a mastectomy. He asked if I knew a plastic surgeon, and when I said no, he said he did.  I saw the plastic surgeon, and he recommended tram flap.  I was back and forth on reconstruction, whether to do tram flap or implants. Then, ultimately decided to go with tram flap. I had the mastectomy and tram flap reconstruction immediately after on August 24th.   My surgeons were the absolute greatest.  The plastic surgeon is fantastic.  I only wish one thing, I think, I haven't decided for 100% sure.  And that is that I think I should have done the bilateral mastectomy, and get rid of the fear once and for all.  So, I feel your decision to have both done is the right thing for you to do.  

Good luck to you. 

Blessings2011

keetmom - I'm so sorry you have to be here, but if you need support, this is the place to be!!!

Given all your issues, I think BMX is a wise choice. I was dx'd last September with DCIS in my left breast, with a microinvasion of invasive cancer. My mom had BC, and for me, it was just a matter of time until I had it.

I made the decision to have a BMX and I have never regretted one moment. I had immediate reconstruction in the form of placing tissue expanders at the time of the surgery.

The expanders were filled over the weeks until they were the size I wanted. I took some time off before exchange so that I could lose some weight and get in shape. When I lost the weight, I had my exchange surgery to saline implants in August. I love them. It was totally worth it.

As far as your situation, you are probably already in touch with organizations that do respite caregiving for children. You may need them.

As far as personal help, yes - you'll need SOME. You won't have the use of your arms for a few weeks (plastic surgeons differ on how much they let you do, and how soon), but with the right preparation and planning, you will be fine.

I went into my surgery thinking that I would be seriously disabled for a long time. That just wasn't the case. My pain was controlled with medication, and I followed my surgeon's instructions to the letter. Before I knew it, I was on the road to recovery, resuming my normal activities more quickly than I ever imagined.

The best part? During the BMX, all they could find was the DCIS. The invasive cancer seems to have disappeared. They say that the core needle biopsy must have gotten it all. All my margins were clear (I had multifocal cancer - in several different places) and there was no lymph node involvement. So I didn't need radiation OR chemo. What I do need is five years on Arimidex, as my cancer is estrogen-positive, and I am post-menopausal.

Truthfully, I think your biggest hurdle is going to be letting yourself be the one who is cared for. Sometimes being in the caregiver role puts us in the position of having to be the strong one all the time, and it's hard to admit we need help.

If anyone offers to do ANYTHING, just say yes.

Many people will say "Oh, let me know if there is anything I can do...." so MAKE A LIST! And when they say that, give them a choice of a few things they can do for you.

There will be things you can't do, like clean your house. Meals are always appreciated. Entertaining your other daughters would be special, too. Running errands, driving you or your daughters to appointments, I'm sure you can think of a gazillion things you do in just one day. See how much you can delegate to others.

Keep asking questions... that's what we're here for!!!

Will keep you and your family in my prayers for a successful procedure and quick healing!

keetmom

Thank you all...I feel good with the decision, we currently aren't using respit, but luckily have family that will help out.  I am going with tissue expanders and implants...I am 107 pounds with very little excess to donate to that area....so that is my best bet...and I have always been barely an A so I think I will go bigger....really like the breast surgeon and she works exclusively with a PS because she says he is best.....I have to meet with Genetics next week and Oncology and plastics the week after....just want it all done...even if they think it is all DCIS....still just want it over and on the way to recovery.