Need to make a decision on recconstruction

Katie17

Hi - I was diagnosed with DCIS a few weeks ago and am scheduled for a double mastectomy next week. Although the diagnosis is DCIS, the area is too large relative to the size of my breast to do a lumpectomy so they have recommended a mastectomy. Because I am not looking to do a big enhancement, the plastic surgeon has given me an option of either having the reconstruction all done during the same surgery or having it done in a two-surgery procedure with expanders over a course of 10 weeks. She is advising me to have the expanders and second surgery because it will give me a better cosmetic outcome. Obviously, I would prefer only one surgery but feel that I should go with her recommendation. Has anyone had either of these surgeries and recommend the pros and cons? Does the two-step procedure make the recovery time a lot longer? I have two young boys (9 & 10) who are active and am trying to figure that in to my decision as well. Very nervous as I am sure you can all relate to! So appreciate any advice! Katie

Barb A

I've had a Tramflap reconstruction
Hi Katie. I had a bi-lateral mastectomy with Trampflap reconstruction in 2001 at age 37. I can't speak to the double mastectomy or expanders. I had the same situation with the widespread DCIS in one breast, resulting in the mastectomy versus lumpectomy.

I had immediate reconstruction using tissue from my stomach. It went well for me and the reconstructed breast looked acceptable to me - until I had a lumpectomy on the reconstructed side in 2008. With a mastectomy, they can't get all of the tissue and I developed a lump at the base of the reconstructed breast. It left me with another scar and it now has a divet. I use a prostethis to even out my breast size. I could have more surgery, but choose not to. Regardless of what you choose to do, continue doing self-exams on the reconstructed breast(s).

My recovery was about six weeks and went well. The first week was bad due to the drains that were placed, but it could have been worse. I didn't have chemo or rads the first time either.

Do plenty of research on your options for reconstruction and if needed, get a second opinion. Good luck and keep in touch on the boards. There are some great people here who will provide excellent support.

Barb A

AMomNETN

For What It's Worth
Katie,
2 yrs. ago I had a bilateral mastectomy. I wasn't offered any other option but the expanders with implants later. I was fine with it because it gave me time to heal from the 1st surgery. You didn't mention if you had to have chemo or rads. That would play into it also. I had chemo with fill ups just before my next treatment. About 4 months after chemo was over I had the exchange surgery. It wasn't a difficult as the mastectomy to me anyway. Kids grown so that wasn't a consideration. I really don't have any cons to my surgeries. I hope this helps a little bit.

Janie

Katie17

AMomNETN said:

For What It's Worth
Katie,
2 yrs. ago I had a bilateral mastectomy. I wasn't offered any other option but the expanders with implants later. I was fine with it because it gave me time to heal from the 1st surgery. You didn't mention if you had to have chemo or rads. That would play into it also. I had chemo with fill ups just before my next treatment. About 4 months after chemo was over I had the exchange surgery. It wasn't a difficult as the mastectomy to me anyway. Kids grown so that wasn't a consideration. I really don't have any cons to my surgeries. I hope this helps a little bit.

Janie

Thank you. Unless they find something unexpected, I will not have chemo or radiation. They will be taking a lymphn node on each side to be sure. Diid they inflate the temporary implants a little after the first surgery? How normal did you look for those first few weeks? Were the expanders very uncomfortable? Thanks for your help and how are you doing now?

Katie17

Barb A said:

I've had a Tramflap reconstruction
Hi Katie. I had a bi-lateral mastectomy with Trampflap reconstruction in 2001 at age 37. I can't speak to the double mastectomy or expanders. I had the same situation with the widespread DCIS in one breast, resulting in the mastectomy versus lumpectomy.

I had immediate reconstruction using tissue from my stomach. It went well for me and the reconstructed breast looked acceptable to me - until I had a lumpectomy on the reconstructed side in 2008. With a mastectomy, they can't get all of the tissue and I developed a lump at the base of the reconstructed breast. It left me with another scar and it now has a divet. I use a prostethis to even out my breast size. I could have more surgery, but choose not to. Regardless of what you choose to do, continue doing self-exams on the reconstructed breast(s).

My recovery was about six weeks and went well. The first week was bad due to the drains that were placed, but it could have been worse. I didn't have chemo or rads the first time either.

Do plenty of research on your options for reconstruction and if needed, get a second opinion. Good luck and keep in touch on the boards. There are some great people here who will provide excellent support.

Barb A

Hi Barb. Thank you. I am so sorry to hear you had to go through that after a double mastectomy. Did you find it yourself? What type of screenings if any are you going for?

aysemari

Hello Katie
First, welcome though I hate to see you here (:

But if you have to be on a cancer board, THIS is
the place to be. This is a place bustling with smart
and caring women, ready to help anyway they can.

I had a double mastectomy and reconstruction. My
doctor put the expanders in and every week I got
expanded. This was a painful process to me and I
would recommend you take the valium they give you,
helps with the muscle spasms. Then they put the real
implants in. That was not a hard surgery for me.

And now, not to ruin it for you, while I have amazing
looking breasts, every doctor compliments me on them,
I do find them uncomfortable and sometimes play with
the thought of having them removed. But for now I saw
enough doctors to last me for a life time and I am leaving
it alone (:

Good luck with your surgery and I hope you will have
a very quick recovery.

Hugs,
Ayse

Texasgirl10

aysemari said:

Hello Katie
First, welcome though I hate to see you here (:

But if you have to be on a cancer board, THIS is
the place to be. This is a place bustling with smart
and caring women, ready to help anyway they can.

I had a double mastectomy and reconstruction. My
doctor put the expanders in and every week I got
expanded. This was a painful process to me and I
would recommend you take the valium they give you,
helps with the muscle spasms. Then they put the real
implants in. That was not a hard surgery for me.

And now, not to ruin it for you, while I have amazing
looking breasts, every doctor compliments me on them,
I do find them uncomfortable and sometimes play with
the thought of having them removed. But for now I saw
enough doctors to last me for a life time and I am leaving
it alone (:

Good luck with your surgery and I hope you will have
a very quick recovery.

Hugs,
Ayse

Hello
Hi Katie, I just wanted to say hi and welcome to the board. I'm sorry but I don't have any words of wisdom regarding your upcoming surgery as I have inflammatory breast cancer and had a bilateral mastectomy and reconstruction was not an option. But I will be praying for a successful surgery for you.

Hugs & God Bless,

Dawne

Katie17

Texasgirl10 said:

Hello
Hi Katie, I just wanted to say hi and welcome to the board. I'm sorry but I don't have any words of wisdom regarding your upcoming surgery as I have inflammatory breast cancer and had a bilateral mastectomy and reconstruction was not an option. But I will be praying for a successful surgery for you.

Hugs & God Bless,

Dawne

Well from what I can see you
Well from what I can see you are a beautiful woman inside and out. Thank you for the kind words and I will keep you and all of the women on this site in my prayers as well.

Katie17

aysemari said:

Hello Katie
First, welcome though I hate to see you here (:

But if you have to be on a cancer board, THIS is
the place to be. This is a place bustling with smart
and caring women, ready to help anyway they can.

I had a double mastectomy and reconstruction. My
doctor put the expanders in and every week I got
expanded. This was a painful process to me and I
would recommend you take the valium they give you,
helps with the muscle spasms. Then they put the real
implants in. That was not a hard surgery for me.

And now, not to ruin it for you, while I have amazing
looking breasts, every doctor compliments me on them,
I do find them uncomfortable and sometimes play with
the thought of having them removed. But for now I saw
enough doctors to last me for a life time and I am leaving
it alone (:

Good luck with your surgery and I hope you will have
a very quick recovery.

Hugs,
Ayse

Thank you for the advice and
Thank you for the advice and sharing your experience. I don't think I would want to go anywhere near a doctor either. What type of implants do you have?

Megan M

Texasgirl10 said:

Hello
Hi Katie, I just wanted to say hi and welcome to the board. I'm sorry but I don't have any words of wisdom regarding your upcoming surgery as I have inflammatory breast cancer and had a bilateral mastectomy and reconstruction was not an option. But I will be praying for a successful surgery for you.

Hugs & God Bless,

Dawne

Katie, welcome to this great
Katie, welcome to this great group of pink sisters and I will be praying for a successful surgery for you this week and a fast recovery.

Hugs, Megan

Dawne.Hope

My 2cents
Katie17 - I had DCIS in one breast and opted for bi-lateral MX because of strong family history even though I was BRAC1 and 2 negative.

From what I've read the one-step procedure is difficult to attain good results. I would listen to your PS. The one-step gets the best results with women who were small breasted to begin with. I had immediate reconstruction with TE placement and was stretched over a period of five months. I exchanged to 325 cc silicone implants and wear a 30D bra. They are wider and not as much projection as my natural breasts but I'm very happy with my results. They are not my natural breasts ... but I am happy. IMO, listen to your PS.

Different Ballgame

Had 0 Stage DCIS - Mastectomies - Reconstruction
Dear Katie,

I had a double mastectomy. Tissue expanders were fine as I did not have chemo nor radiation. I had one day of discomfort with the tissue expanders and took Excedrin, which took away the discomfort.

I think it is a good idea to heal from the mastectomy. Listen to your plastic surgeon. My implants are Mentor memory silicone and they feel very good when you touch the breasts Remember, nothing can replace your real breasts but the implants are good substitutes.

Good luck to you and Lots of Hugs,
Janelle

Dawne.Hope

Dawne.Hope said:

My 2cents
Katie17 - I had DCIS in one breast and opted for bi-lateral MX because of strong family history even though I was BRAC1 and 2 negative.

From what I've read the one-step procedure is difficult to attain good results. I would listen to your PS. The one-step gets the best results with women who were small breasted to begin with. I had immediate reconstruction with TE placement and was stretched over a period of five months. I exchanged to 325 cc silicone implants and wear a 30D bra. They are wider and not as much projection as my natural breasts but I'm very happy with my results. They are not my natural breasts ... but I am happy. IMO, listen to your PS.

One more thing ...
It's OK to consult with other P.S.'s and get a second, third or even fourth opinion.

Even though I had TE's, the procedure was done as a team between my B.S. and my P.S. My B.S. performed the MX and the lymph node dissection and when she was done, my P.S. took over and put in the T.E.'s. My B.S. did a skin-sparing MX and it helped achieve better results (I am thin and he did not have a lot of skin to work with).

All of this to say ... seek other opinions if you need/want to and work with a P.S. that your B.S. recommends, if possible.

Blondiemomma

Hearing the voice of the Lord
I was really torn up trying to decide what to do before my mastectomy. I didn't know about this board and I knew virtually no one that had gone through what I was about to do. I felt so isolated and devastated.

I polled practically everyone who would stand still long enough for me to ask what they thought I should do. No one had the answer. I got everything from listen to the docs to it was barbaric to have my breast amputated and to take poison chemo. I should eat these mushrooms and pray. One said I got cancer because I didn't drink alkaline water. Another said I was plagued of the devil to have cancer and ignorant of the Lord to not have perfect healing. I stopped asking everyone else and asked myself what I wanted. I realized that I know nothing about hearing the true voice of the Lord but what I know is true is that his voice will instill a peace within me as I hear it.

You and your experience are special. Just listen for the peace that will accompany the right decision. Yes, you may second guess yourself and doubt you made the right decision at times but tell yourself you made the best decision you could with the knowledge you had at the time and forgive yourself if everything doesn't turn out perfectly.

KathyLQ

Nearly two years later
I had a single mastectomy with an expander put in, and 5 months later, a D.I.E.P. transfer. The 5 month wait was awful, I so much wanted that expander out, as it was a bit uncomfortable when fully inflated. Each time, after the saline insertion for the expansion, I’d get muscle cramps that night, uncontrollable. Kind of like getting PMS cramps, I’d have to take Tylenol. And for 1 or 2 nights, I’d have to sleep propped sitting up, as the weight of the expander on my chest was painful. After the week in the hospital for the DIEP, I had two more surgeries, 1 was a lift on the other breast, and the other was further refinement on the DIEP breast. If I were to do it again, I’d very much want the reconstruction done with the mastectomy. It seemed like 18 months of my life were surgery after surgery, no end in sight. And it’s not perfect, it never will be. The DIEP breast has no feeling, obviously. The breast lift left me with no feeling in the right nipple.. until now. It’s been 6 months, and I had concluded it wasn’t coming back… but just discovered tonight I’ve got some sensation in the nipple. Total surprise! I do understand it can take time for nerves to grow back, even if just a little.
The reason they gave me for not doing the reconstruction with the mastectomy was because they didn’t have a surgery room open long enough for me, for several months. It was for their convenience, not mine. I was afraid I couldn’t wait, because their lab tests had discovered I didn’t have clear margins. In hindsight, I could have waited a bit, because no further cancer was found. However, overall, I’m glad I did the reconstruction.