newly diagnosed s/p bilat mastectomy with complications may 2009

rjjj said:

Welcome Lisa
I am glad you found us here although i am sorry for the reason. You will be in my thoughts and prayers for healing.
Hugs, jackie

lmmo said:

Thanks

First I want to say thank you!
Second, this is my daughter's horse that may be better called a big puppy dog :-)
My daughter is 17 and driving, so I do not see him often, but when I am at the barn I feel peace.

I had an incisional biopsy the size of a golf ball originally removed on 2 June. Unfortunately the rays from the spiculated mass went beyond the margin of the lumpectomy so we knew I needed more surgery. My Ki 67 was 85%, so very high recurrence (this was before we got Oncotype DX back), so we chose a bilat mastectomy. Of course, if I knew how hard it would be I may have done breast sparing surgery, but I did not want radiation (an hour away from here) or anxiety that it would return.

Please share with me and help me I am so frustrated.

lmmo said:

lumpectomy
I am happy that you chose this route. My recurrence was too high so I chose mastectomies and I am not driving because I am unable to raise my arms above my shoulders because the skin is so tight.
Thanks for the prayers!

lmmo said:

dawn
The burning is coming from the lack of skin left after several inches of dead tissue was removed because the flaps did not heal after my mastectomy. Along with this, the plastic surgeon had to remove the expanders and neoform tissue for reconstruction or he was not able to close my flaps w/o skin grafts. This why he says I may never look the same. His only idea/option is to send me in DC to have the abdominal reconstruction.
I am sorry you have had to endure a longer recovery too:-(
I just had no idea, and I had talked with many around me that survived this and no one really had this set back or could really tell me everything. I live in an area where BC is one of the highest in the country...lots of young women to chat with.

bfbear said:

Geez, Lisa...
I am so sorry for all the complications and challenges you are facing. I had a dbl. mastectomy w/immediate reconstruction on May 6th, and even without complications there is still pain and tightness now (but not nearly as much as a few months ago). Scars or no, the "foobs" will never look normal. As another woman said, and my plastic surgeon reiterated, it's reconstruction, not enhancement. (And I agree with you about the drains...I was NOT expecting the pain that occurred). Looking in the mirror was very hard for quite awhile, but I'm getting used to "them" slowly.

But, obviously I have nothing to complain about compared to your situation, and believe me, you have all my empathy, along with good wishes, prayers, positive energy, and anything else good that I can send over these internet-lines!

Hang in there, and try to take each day as it comes. Take lots of deep breaths. And hang with the horse, if it brings you peace.

With very gentle hugs,
Debi

jk1952 said:

Lisa, you and your husband

Lisa, you and your husband have had more to deal with than any couple should, and all at such an early age! I am so sorry that you have had to go through all of this.

I had a bilateral mastectomy and DIEP reconstruction (tummy tuck) in April. DIEP was one of only a few alternatives that I had, since my right breast had been radiated in 2000, and implants are not recommended for previously-radiated breasts. I would encourage you to consider this reconstruction: I think that it is what your surgeon is suggesting. The tissue that is discarded in a tuumy tuck is used to create the breast, and the blood supply is disconnected in the abdomin and reconnected under the arm. It is vastly different from a TRAM flap, where they tunnel the tissue up through a 'cage' to your breast area. The plastic surgeons here have stopped doing the TRAM in favor of the DIEP.

The major thing is to have a plastic surgeon who is well-trained and experienced in this surgery, since it is a very delicate, long surgery. There are only about 150 doctors who are considered to be skilled in this procedure in the US. The doctor, and the post-surgery care are definitely the key to the success of the surgery.

Although I have not had the struggles with the implant reconstruction that you have, the doctor did find that the blood supply under my arm had been damaged by the radiation, but they were able to do the reconstruction in spite of that. I'm hoping that the same will be true for you.

I hope that everyone's responses have given you encouragement and courage.

Joyce