Prophylatic mastecomy

Kit1018

Hi ladies,
I was here about 6-7 months ago. Talking about the biopsies I was having. They came back good but with ductal hyperplasia. The problem I am facing is that I have had alot of biopsies, mri,mammo's and ultrasounds. My results showed need for more scans which show more lumps, each time its a new one. I am due for another biopsy but do not want to keep having them. My doctor (hematologist/oncologist) who deals with my blood clotting disorder recommends a prophylatic bilateral mastectomy. I went to one surgeon (who agrees), refferred me to another surgeon who I will see Friday. I have been looking it up and doing research but would like to hear other peoples experience with this. I am thinking of having the reconstruction right away with the tram flap.
Thankyou for your feedback in advance.

Kit1018

also would like to know if
also would like to know if you had one and what type.

Tinabug

not familiar with ductal hyperplasia...I did have a bilateral
I was diagnosed with ductal invasive in my left breast on Oct. 26. I chose to have a bilateral mastectomy in Nov. I wasn't a candidate for tram flap, but did have expanders inserted at the time of my mastectomy. I'm not for certain of the answers you are looking for. I could have stopped after my lumpectomy(sugical biopsy.) However, I would have worried constantly about it recurring & having to go thru this entire ordel again. Cancer being gone & peace of mind became my goals. I didn't want to put my husband, family, friends, & self thru this experience again. I am very happy with my bilateral mastectomy. It has been an adjustment & I still have a long road ahead of me. However, I walk that road knowing, if I get cancer again, it won't be in my breast, because I took care of it. I was lucky my tumor came back stage 1 & I realized next time I might not have been so blessed. I am in the process of reconstruction & having breasts again. I saw a t-shirt recently that summed it up for me "yes they are fake...my real ones tried to kill me." In a perfect world, I would have kept mine. However, we don't live in a perfect world so I chose the next best thing. I could pretty much return to most activities by the 6th week. If you have anymore questions dealing with the actual surgery, I will be glad to help if I can. I wish you all the luck in making your decision.
I have not once regretted my decision to have a bilateral mastectomy.

Hugs, Tina

Tinabug

not familiar with ductal hyperplasia...I did have a bilateral
Regardless, of your decision, you have come to best place for support & advice. The ladies on these boards have been a blessing to me for the last 2 months.

Hugs,
Tina

tigger99

Tinabug said:

not familiar with ductal hyperplasia...I did have a bilateral
Regardless, of your decision, you have come to best place for support & advice. The ladies on these boards have been a blessing to me for the last 2 months.

Hugs,
Tina

You came to the right place
You came to the right place for advice - lots of wonderful women here! At first, I thought I wanted a bilateral mastectomy until my surgical oncologist pointed out that she can never get every single breast tissue cell, so you can still get breast cancer even after mastectomy. Some get it in or near the incision site or between the skin and chest wall. So I guess I am saying that there are no guarantees - you still have to be vigilant about doing self exams, etc., even after a mastectomy. Hate to be a downer, but that's the reality of it. harrumph!

Chrispea

tigger99 said:

You came to the right place
You came to the right place for advice - lots of wonderful women here! At first, I thought I wanted a bilateral mastectomy until my surgical oncologist pointed out that she can never get every single breast tissue cell, so you can still get breast cancer even after mastectomy. Some get it in or near the incision site or between the skin and chest wall. So I guess I am saying that there are no guarantees - you still have to be vigilant about doing self exams, etc., even after a mastectomy. Hate to be a downer, but that's the reality of it. harrumph!

Isn't that why we have
Isn't that why we have radiation tho? to kill the cells missed in surgery?

I'm considering having a bilateral mastectomy, so I don't have to worry... I don't know what a tram flap is, but I'm seeing my surgeon tomorrow, so I'll ask her.

Myshell

Chrispea said:

Isn't that why we have
Isn't that why we have radiation tho? to kill the cells missed in surgery?

I'm considering having a bilateral mastectomy, so I don't have to worry... I don't know what a tram flap is, but I'm seeing my surgeon tomorrow, so I'll ask her.

I have atypical lobular
I have atypical lobular hyperplasia as well and have had a core needle biopsy and am scheduled for my surgical biopsy next Friday. Do you mind if I ask..does insurance cover bilat mastectomies in this diagnosis, or is it more based on your Docs recommendation? It is a big decision, please keep us updated.

Kit1018

Myshell said:

I have atypical lobular
I have atypical lobular hyperplasia as well and have had a core needle biopsy and am scheduled for my surgical biopsy next Friday. Do you mind if I ask..does insurance cover bilat mastectomies in this diagnosis, or is it more based on your Docs recommendation? It is a big decision, please keep us updated.

Based on the number of
Based on the number of biopsies and the double lumpectomy plus scans the docs believe that insurance should pay for it. I find out for sure tomorrow. Free flap or a DIEP flap would be my choice I believe. But like I said I find out tomorrow, I'm nervous but dont want anymore biopsies I have had a lot of them.

Thankyou ladies for sharing your experiences on this. I appreciate it.

helen e

TRAM Flap
I had the TRAM flap 5 weeks ago done right after my mastectomy and I would do it again right now if I had to. It has turned out very well and healing great.

20questions

Myshell said:

I have atypical lobular
I have atypical lobular hyperplasia as well and have had a core needle biopsy and am scheduled for my surgical biopsy next Friday. Do you mind if I ask..does insurance cover bilat mastectomies in this diagnosis, or is it more based on your Docs recommendation? It is a big decision, please keep us updated.

I've been doing insurance pre-cert for about the last 10 years
specifically for breast patients and I have never had a insurance company deny mastectomy for atypical ductal hyperplasia or atypical lobular hyperplasia.

carkris

helen e said:

TRAM Flap
I had the TRAM flap 5 weeks ago done right after my mastectomy and I would do it again right now if I had to. It has turned out very well and healing great.

I had both those biopsies
I had both those biopsies and ended up get invasive lobular cancer, I was in the process of seeing docs for a propholactic mastectomy, tired of biopsies too. I was too late.

wendybia

carkris said:

I had both those biopsies
I had both those biopsies and ended up get invasive lobular cancer, I was in the process of seeing docs for a propholactic mastectomy, tired of biopsies too. I was too late.

I decided on immediate DIEP...recovery period much shorter than TRAM, but not all plastic surgeons do them because it's still fairly new. My surgery was Dec 21, 09.

I did post a question about abdominal drains a few days ago...has anyone had problems after they were out with swelling ? I'm seeing the dr. this afternoon..but don't know what to expect. thanks...wendy

131mom

wendybia said:

I decided on immediate DIEP...recovery period much shorter than TRAM, but not all plastic surgeons do them because it's still fairly new. My surgery was Dec 21, 09.

I did post a question about abdominal drains a few days ago...has anyone had problems after they were out with swelling ? I'm seeing the dr. this afternoon..but don't know what to expect. thanks...wendy

hi

i didn't have the diep reconstruction but had a friend that did & she had issues with her incision. she was in pain for months & dr kept telling her that it was due to surgery. finally he determined that it was infected & had to remove infected skin & redo the incision. she had mersa, she was the worst case senario. hopefully this isn't you.

131mom

mastectomy
hi

i don't know much about prophylatic mastectomy, but had dbl mastectomy. i had the latissimus flap transfer. it would have been nice to do the diep flap transfer, figured getting a tummy tuck out of this didn't sound too bad, but i just didn't have enough to get me back to a "d".

the tram flap is taking your abdominal muscle and pulling it up and across your chest. the con to this is that again, it is using your abdominal muscle and as you get older, you will have a weaker core. doctors where i live will only do 1 sided tram flap, not both.

the con with the latissimus flap transfer is that your shoulder/back will be weaker, but you won't lose your core strength. you can still swim, play tennis & what not, just takes time to gain it back. had my surgery on oct 09 09, still not 100%. arm streches and exercises are key.

the last two types of tissue transfer is from the butt & inner thigh. the only surgery where you might have some sensation would be the diep, because it is microsurgery & connecting tissue to skin/nerves.

you just have to choose what is right for you. it is overwhelming and confusing.

good luck!

wendybia

131mom said:

hi

i didn't have the diep reconstruction but had a friend that did & she had issues with her incision. she was in pain for months & dr kept telling her that it was due to surgery. finally he determined that it was infected & had to remove infected skin & redo the incision. she had mersa, she was the worst case senario. hopefully this isn't you.

nothing but good things to say
i had really good luck with the DIEP...just got home from dr's and we both agree it's like a piece of art..lol..4 weeks ago today was my surgery...tummy still a little sore and swollen but he said couple more weeks..swelling is down some in my armpit but he said because they took a node it could take some time for that to go down..just keep doing the arm exercises and be patient...problem is once you start feeling well you think you can do everything and you just can't...but that day will come

jk1952

131mom said:

mastectomy
hi

i don't know much about prophylatic mastectomy, but had dbl mastectomy. i had the latissimus flap transfer. it would have been nice to do the diep flap transfer, figured getting a tummy tuck out of this didn't sound too bad, but i just didn't have enough to get me back to a "d".

the tram flap is taking your abdominal muscle and pulling it up and across your chest. the con to this is that again, it is using your abdominal muscle and as you get older, you will have a weaker core. doctors where i live will only do 1 sided tram flap, not both.

the con with the latissimus flap transfer is that your shoulder/back will be weaker, but you won't lose your core strength. you can still swim, play tennis & what not, just takes time to gain it back. had my surgery on oct 09 09, still not 100%. arm streches and exercises are key.

the last two types of tissue transfer is from the butt & inner thigh. the only surgery where you might have some sensation would be the diep, because it is microsurgery & connecting tissue to skin/nerves.

you just have to choose what is right for you. it is overwhelming and confusing.

good luck!

My case wasn't exactly like

My case wasn't exactly like yours because I did have a small amount of invasive cancer in 2000 which was treated with a lumpectomy and radiation. But, I do know about the constant stream of MRI's and biopsies, and when DCIS was discovered in the same breast in early 2009, I decided to have a bilateral mastectomy with immediate DIEP reconstruction. If you can find a plastic surgeon who is qualified to perform this reconstruction, I would highly recommend it. I have been very pleased by the results, and I do not regret the bilateral mastectomy one bit. In 2000, I was just as happy with the lumpectomy and radiation, because I wasn't quite ready to have my breasts removed.

I had a real sense of peace when I finally made a decision this spring, and I hope you also can be at peace with whatever decision you make, knowing that it's the right thing for you right now.

Joyce