How do you know that they took enough?

mom2two

I'm a few months out from a bilateral mastectomy for DCIS and my main question when I look in the mirror is  how do you know if the surgeon has taken enough. My chest has a much more dramatic surgical appearance on the left side where the dcis was but the right just has a tear drop shape removed. I can still feel tissue on the front right side just before where my underarm starts. Is there a way they know where breast tissue ends? When I asked my surgeon he just said I didn't leave any breast tissue. When I asked my ob/gyn she felt the area and kind of gasp and said I needed to ask the surgeon. Has anyone else felt like this. Before I worried mastectomy may be too much for dcis now I worry it wasn't enough.

kmccraw423

I elected for bilateral mastectomy too.  I had DCIS in the left breast and although the right was supposed to be prophylactic, it turned out on the pathology report to have really early DCIS.

Your breast surgeon should have a pathology report that tells him if there were clear margins.  I had immediate reconstruction with expanders.  I also had a bleed while still in recovery and they had to go back into both breasts.  I am told my breasts were symmetrical and looked 'good' after the first surgery.  When I woke up the right one was practically under my arm and tight as could be while the right one looked as if it had not had a mastectomy (the expander slipped and was just hanging out in front).  The right one was large and sagging.

I either had an infection from a contaminated expander or my body rejected the expander - at any rate, both were removed exactly one month after they were inserted.  Now they both look symmetrical (the right one has slightly more skin) and I am flat.

Go see your surgeon and ask him what's going on.  Best wishes.

Erica3681

Hi,

It's certainly possible that not all the breast tissue was removed on your right side. My breast surgeon, who's head of the Breast Care Center at a major teaching hospital, told me she's had to re-do mastectomies because breast tissue was left behind. No breast surgeon can guarantee that he or she has removed every last bit of breast tissue but occasionally too much is left behind. It sounds as if you could benefit from a second opinion.

Sorry you have to worry about this.

Barbara

starzhere

I would get a second opinion. 

I had a friend who had her first mastectomy done by a general surgeon and the second one by a cancer surgeon at UCLA.  She said there was a noticeable difference.  The  UCLA doctor took more tissue. He went up to her collar bone and into her arm pit.

mom2two

This kind of thing is what I was concerned about when trying to decide between staying locally or traveling to a major cancer center. There just seems to be no end to the decisions one has to make in the beginning of this diagnosis. Then there are the things out of ones control like the doctors technique. If I had had the reconstruction right away I probably never would have noticed the extra area of flesh.

Kmc how awful to go through all that with the infection. I know you aren't alone in that either. Seems like a lot of women struggle with that too.

Barbara maybe you could pm me your breast surgeons name, I may be needing a new one

starz did your friend have a recurrence why she had to have a second surgery?

tos

I had a bilat w/no recon almost 2 yrs ago.  One side is done well

but the side where the tumor was is so diffrerent with more

skin/tissue left behind.  I feel confident my surgeon took

what was necessary and I know they cannot remove all of the

tissue but it is a confusion when you look in the mirror as to

why this happens.

barbe1958

My tumour side also had more skin left. Why? I would have thought it would have less! I still  have swelling there as well, but I see him this Friday.

tos

Barbe1958,

If you ask your surgeon about the extra tissue left behind on the tumor side, I would be interested to see what his answer is to you.

barbe1958

If you don't hear from me next Friday, feel free to PM me.

mom2two

Would love to see some pictures from the women who had their bilateral mastectomies without the reconstruction from the well known cancer centers so we could compare them with ours. Like the old saying goes "A picture is worth a thousand words".

starzhere

mom2two - regarding why she had the other mastectomy.  She decided to have reconstruction, so the other mastectomy was prophylactic.

starzhere

I forgot to tell you that there is a photoboard where women post pictures of their reconstruction and post pictures of their mastectomies.  You need to pm Timtam and request to be admitted.  She'll give you the link and the password.

~elaine~

mom2two

Timtam kindly gave me access to that site but there is no way to know which ones were done at the major cancer centers. Maybe we should have a Breastcancer.org judging panel like on American idol only this one evaluates the surgeons on their lumpectomies, mastectomies, reconstructions etc. and gives them scores on appearance, margin of safety, best reconstruction etc. Ok who wants to be Paula?  Randy? Simon?  We could give  awards for  no recurrences,  best bedside manners least amount of infections....... the possibilities are endless!

starzhere

You could ask the women where they had their surgery.  I'm sure they'd reply.

~elaine~

carol1949

I would assume from my research and answered questions that the way you feel confident that "enough" was taken is by the result of the final pathology reports.

As my surgeon explained.  He can see the tumor, but NOT cancer cells which is why they do the path studies. There is also no proof that just by taking all the tissue that you can't still get cancer back at the site, chest wall, etc. Which is why  Dr. Susan Love and others don't encourage voluntary mastectomies when not medically indicated.  It is also whyI am so adamant about complimentary therapies perhaps such as nutrition and supplements which can't hurt, but can possibly make the difference in survival!

I have a friend who is 11 years cancer free and did it with 2 lumpectomies and NO chemo or rads!  She used supplements, etc.

starzhere

I think it would depend on the pathologies of the lumpectomies. Was rads and/or chemo recommended and she refused?

I had a lumpectomy on my right breast and because it was so small I didn't need rads or chemo, that was 16 years, ago, and I've never had a recurrence.

~elaine~