Coulda, woulda, shoulda

workingtired · May 2003

Hello all,
I have been recently diagnosed with dcis non-invasive breast cancer in my left breast. My pathology on my last re-excision has come back with too many sections with unclear margins. My breast surgeon has pretty much summed up that the dcis is too widespread and recommends a simple mastectomy and will need no other treatments. I am scheduled for my mastectomy next Friday May 23rd.

I have met with the plastic surgeon that said I could have any of the 3 methods of reconstruction. I have decided on having the stomach flap as he thinks I have enough tissue to make a good size full breast to match my other 38d. I am a little concerned about the long recovery and was wondering if any of you out there who have gone through this method of reconstruction, could give me some insite on your decision and recommendations on what you would have done differently.

I might add I am a 41yr old married working mother of a 2year old and 5year old.

A new bosom buddy,

Angela

cruf · May 2003

Hi Angela! I,also had extensive DCIS and had a lumpectomy then mastectomy with Tram Flap reconstruction. I would love to let you know anything you want to know. Please E-mail me here or at RPT1206@aol.com. I'm almost 3 years post surgery and I am 51 years old. Good luck! HUGS!! Cathy

squeeboo · May 2003

Hi Angela,
I had a single mastectomy with Tram flap reconstruction a year ago April. I chose the method because I didn't like the idea of implants that could have problems and could need replacing over time. I also play contact sports and natural tissue seemed like a better option for me.
I was 31 when I had the procedure. The recovery take s awhile - you're stooped over for a couple of weeks until the stomach muscles stretch out again and walking stooped is pretty tough on the lower back. One big plus is that you essentially get a tummy tuck in the process (several of my friends wanted to donate their "fat pads" for me).
For me it was the right way to go, but the procedure is not for everybody.

-Susie

minnie112256 · May 2003

Hi Angela.
I was in the same situation as you are now last October. I had my mastatomy in Nov. and decided to have a tissue expander put in at the same time instead of the flap. I went that way because I was told the flap was a lot more recovery time and that it sometimes damaged the muscles in your stomach and caused back problems. I am very happy with my implant. I had a saline implant put in about a month ago. My recovery time was about 3 weeks and now I feel fine. Sometimes I even forget it is an implant. I had my other side reduced to match and they look great. I get compliments all of the time. Hope this was a help. Good Luck with your decision. Ida

By the way, I am 46.

AnxiousInOhio · May 2003

Just registered and was reading your message. I am now 5 years post tram-flap and can tell you that as for the surgery itself, I have had zero problems. (It was pretty painful - I won't lie to you - but after a few days you start to bounce back) I do want to tell you that you need to be sure and discuss with your oncologist exactly what story all the blood tests you will get are telling you. All of my test have come back extremely positive for 5 years now. One problem -the blood doesn't tell everything. I just recently found out I have mets breast cancer in my lymph gland in the neck. Am going through all the tests again to see if it is anywhere else in the body. I start chemo 5/23 and will again lose all my hair (what a nightmare). I'm not telling you this to scare you - I'm telling you this story to make you aware that the blood results do not show if there is cancer elsewhere in the organs or lymph nodes. I wish you a positive and happy remission - sounds like you have a lot of people counting on you!! Keep the spirits up and talk to the big man upstairs - - he does listen!! Let me know how you are doing - I'd like to know what you think of the surgery! My email is rsutton1@columbus.rr.com.

banker · May 2003

Just want to let you know I had Tram Flap surgery. It will be 4 yrs May 26. I am 59 yrs old now, looking great, never regretted it. You can e-mail me at charmin@froggernet.com if you have any questions. Hope this helps. Love Emmi

BBK · May 2003

I was diagnosed with what looked to be non-invasive DCIS of the left breast in November 2002. I had a simple, skin-sparing mastectomy on January 10th, with immediate TRAM flap reconstruction. When the path report came back, they changed the original diagnosis to INFILTRATING DCIS. Because of the mastectomy, I had clear margins, and my lymph nodes were negative. BUT, I still underwent 4 rounds of AC Chemotherapy from March to May (my last treatment was on May 5th). I don't need radiation. So, essentially, my treatments are done, except to start 5 years of Tamoxifen in July (since my tumor was 1.9 cm and was estrogen positive). My stomach incision for my TRAM flap has healed nicely (yes, you do walk stooped for a couple of weeks...hard on the back, but a good excuse for a backrub every evening as I was sitting on the couch!). Once the drains were out (I had three -- 2 in my abdomen and 1 under my left arm), and the steri-strips were all off, I started rubbing Vitamin E/Aloe/Cocoa Butter lotion over the scar. I'm still doing that. The stomach scar is still pretty red, and I do still get pain if I stand for too long, sit for too long, or walk too much. It's just one spot, and I suspect it's as my plastic surgeon said -- where they put in a piece of mesh when they took out the muscle/tissue for the flap. I wanted the mesh, to lower the possibility of developing a hernia later. My belly button was re-placed almost dead center, so I'm still pretty symmetrical in that regard. I haven't finished the TRAM Flap, with the new nipple, as it took 13 weeks for the breast to heal! I had some issues with dead tissue, which opened up the wound (the plastic surgeon had to take out the dead tissue, and then I was doing a 2x a day wet-to-dry dressing to encourage the new skin to regrow). It took forever, and during that time I wondered if I'd made the right decision. But, now that it's closed, I"m fairly pleased with the results. The scar is still prominent and red, but is starting to fade as the skin grows in. I'm not sure at this point if I'll even bother with the nipple surgery. My husband has now seen me at my absolute worst, and he still loves me and finds me attractive, so...maybe I won't finish it. I'm not sure yet. I go again to the plastic surgeon next week, and I"m sure we'll talk about that. If I ever have bc in the Right breast, I'm not sure what I'll do...since you can only have the TRAM flap once. I think I'll just have a mastectomy, as I don't want implants. Hopefully, I'll never have to cross that bridge! If you have any other questions, send me an email! God bless and keep you! Lots of decisions when you can't even think straight! But, they told me I had some time. Once you can feel a lump (I found mine myself!), the cancer has already been growing for 8-10 years (so they told me), so what's another week/month to make a decision on treatment!? Best to you. Barb

sandytrif525 · May 2003

BBK said:
I was diagnosed with what looked to be non-invasive DCIS of the left breast in November 2002. I had a simple, skin-sparing mastectomy on January 10th, with immediate TRAM flap reconstruction. When the path report came back, they changed the original diagnosis to INFILTRATING DCIS. Because of the mastectomy, I had clear margins, and my lymph nodes were negative. BUT, I still underwent 4 rounds of AC Chemotherapy from March to May (my last treatment was on May 5th). I don't need radiation. So, essentially, my treatments are done, except to start 5 years of Tamoxifen in July (since my tumor was 1.9 cm and was estrogen positive). My stomach incision for my TRAM flap has healed nicely (yes, you do walk stooped for a couple of weeks...hard on the back, but a good excuse for a backrub every evening as I was sitting on the couch!). Once the drains were out (I had three -- 2 in my abdomen and 1 under my left arm), and the steri-strips were all off, I started rubbing Vitamin E/Aloe/Cocoa Butter lotion over the scar. I'm still doing that. The stomach scar is still pretty red, and I do still get pain if I stand for too long, sit for too long, or walk too much. It's just one spot, and I suspect it's as my plastic surgeon said -- where they put in a piece of mesh when they took out the muscle/tissue for the flap. I wanted the mesh, to lower the possibility of developing a hernia later. My belly button was re-placed almost dead center, so I'm still pretty symmetrical in that regard. I haven't finished the TRAM Flap, with the new nipple, as it took 13 weeks for the breast to heal! I had some issues with dead tissue, which opened up the wound (the plastic surgeon had to take out the dead tissue, and then I was doing a 2x a day wet-to-dry dressing to encourage the new skin to regrow). It took forever, and during that time I wondered if I'd made the right decision. But, now that it's closed, I"m fairly pleased with the results. The scar is still prominent and red, but is starting to fade as the skin grows in. I'm not sure at this point if I'll even bother with the nipple surgery. My husband has now seen me at my absolute worst, and he still loves me and finds me attractive, so...maybe I won't finish it. I'm not sure yet. I go again to the plastic surgeon next week, and I"m sure we'll talk about that. If I ever have bc in the Right breast, I'm not sure what I'll do...since you can only have the TRAM flap once. I think I'll just have a mastectomy, as I don't want implants. Hopefully, I'll never have to cross that bridge! If you have any other questions, send me an email! God bless and keep you! Lots of decisions when you can't even think straight! But, they told me I had some time. Once you can feel a lump (I found mine myself!), the cancer has already been growing for 8-10 years (so they told me), so what's another week/month to make a decision on treatment!? Best to you. Barb

Hi, I had a tram flap reconstruction in Feb of 2002. It was ok, you do walk hunched over for a few weeks, but it gets better. Also, the muscles are harder to work with, like sit ups etc. but you can pretty much function. I also chose this method of reconstruction because of using my own tissue and not the implants. God Bless. Sandy

jerlice · March 2005

BBK said:
I was diagnosed with what looked to be non-invasive DCIS of the left breast in November 2002. I had a simple, skin-sparing mastectomy on January 10th, with immediate TRAM flap reconstruction. When the path report came back, they changed the original diagnosis to INFILTRATING DCIS. Because of the mastectomy, I had clear margins, and my lymph nodes were negative. BUT, I still underwent 4 rounds of AC Chemotherapy from March to May (my last treatment was on May 5th). I don't need radiation. So, essentially, my treatments are done, except to start 5 years of Tamoxifen in July (since my tumor was 1.9 cm and was estrogen positive). My stomach incision for my TRAM flap has healed nicely (yes, you do walk stooped for a couple of weeks...hard on the back, but a good excuse for a backrub every evening as I was sitting on the couch!). Once the drains were out (I had three -- 2 in my abdomen and 1 under my left arm), and the steri-strips were all off, I started rubbing Vitamin E/Aloe/Cocoa Butter lotion over the scar. I'm still doing that. The stomach scar is still pretty red, and I do still get pain if I stand for too long, sit for too long, or walk too much. It's just one spot, and I suspect it's as my plastic surgeon said -- where they put in a piece of mesh when they took out the muscle/tissue for the flap. I wanted the mesh, to lower the possibility of developing a hernia later. My belly button was re-placed almost dead center, so I'm still pretty symmetrical in that regard. I haven't finished the TRAM Flap, with the new nipple, as it took 13 weeks for the breast to heal! I had some issues with dead tissue, which opened up the wound (the plastic surgeon had to take out the dead tissue, and then I was doing a 2x a day wet-to-dry dressing to encourage the new skin to regrow). It took forever, and during that time I wondered if I'd made the right decision. But, now that it's closed, I"m fairly pleased with the results. The scar is still prominent and red, but is starting to fade as the skin grows in. I'm not sure at this point if I'll even bother with the nipple surgery. My husband has now seen me at my absolute worst, and he still loves me and finds me attractive, so...maybe I won't finish it. I'm not sure yet. I go again to the plastic surgeon next week, and I"m sure we'll talk about that. If I ever have bc in the Right breast, I'm not sure what I'll do...since you can only have the TRAM flap once. I think I'll just have a mastectomy, as I don't want implants. Hopefully, I'll never have to cross that bridge! If you have any other questions, send me an email! God bless and keep you! Lots of decisions when you can't even think straight! But, they told me I had some time. Once you can feel a lump (I found mine myself!), the cancer has already been growing for 8-10 years (so they told me), so what's another week/month to make a decision on treatment!? Best to you. Barb

Hi: I read your message with great concern and I am wondering how you are now since a lot of time has passed. You went through hell. In Feb. of this year, I was diagnosed with DCIS (calcifications), had a needle biopsy which proved the DCIS. It was an early stage 0-1. It was non-invasive and margins were clear. I opted for a mastectomy because it was always a "bumpy, lumpy breast and now with a lot of calcifications." Had painful, benign cysts through the years as well. The pathology report after the left breast removal (same as you) showed two other areas of calcification also with DCIS. My surgeon told me I made the right decision with the mastectomy. My surgery was this March 1 and I am having so much pain under the arm. Don't know when I can go back to my p/t job...wake up with pain and go to bed with pain - cannot get comfortable...I was reading about your steri-strips, etc. My surgeon just told me the other day that 30 mins. before taking a shower, to smear polysporin over the strips and after a few days, the strips will just slide off. Anyway Barb, I opted not to take Tamoxifen and will take my chances with the other breast. I saw similarities between you and I, therefore this message. I hope you get to read this. I sincerely hope and pray that you have fully recovered. I decided against reconstruction. Would love to hear back from you.
God bless you - you are one brave lady!

Jerlice

Coulda, woulda, shoulda

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