Nipple Sparing Mastectomy with immediate reconstruction
Comments
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Annemarie have you tried any PT for the radiated side. My pec muscle was very very tight to the point of pain after rads. Before I had the BMX with TE's I spent three months in PT trying to loosen up the muscles. It worked by the time I had the TE's place my muscle was so much better and I had no pain during the fills. Still tighter than the non rads side but nothing like it was. PS has managed to work with it and they look great. PT told me that more women should go to PT following rads as they see this alot and the sooner you are in PT the shorter time you have to spend it PT. Like I said it took me three months.
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Sherry!! Yay!! I'm glad you are back! Missed ya!! No, PT was NEVER mentioned. The tightness is in the skin itself. The only pain I ever had with the TE's was the on the first fill, other than that, no problems (other than the skin) redundant I know) sorry...LOL! Thank you for you help!!xo
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Chilly - how is everything going???
Bumping for Cheryl.....
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Thank you, TinaT! I am so glad to find this thread, as I wasn't seeing a lot of gals who have had NSM. I did read somewhere that while the procedure helps women better cope emotionally with their cancer and MX, it is also a more painful recovery. I know I couldn't stand anything to rub up against my nipples at first.
I feel very blessed to have a wonderful PS who offered this to me. I visited two renowned PS's in the Dallas/Fort Worth area that my BS uses. The first one I went to was so kind and seemed wonderful, so I was just going to cancel my appointment with the next one and go with him. My husband encouraged me to go ahead and keep the appointment with the second one, and boy am I so glad I did! He had a calming presence that just relaxed me, and he said I was a perfect candidate for NSM, which the first doctor didn't even mention. Anyway, I would not have my nipples or feel as much like "me" as I do now had I gone with the first surgeon. My exchange surgery is scheduled for March 20. I think I am about ready to get these TE's out!
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Hi Tina T! Everything is going fine thanks for asking. The scab is still hanging on. I saw the PS a week ago. He got out some scissors and went to work on it. "Don't look, don't look!" he said. There's still a button-sized scab but I'm not worried as he said everything is fine. It sounds like Cheryl E healed very fast, we had our surgeries the same day.
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Hang in there Chilli. Eventually it does come off. I remember posting on this thread wondering if it would ever come off.
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Thanks Beckers. It's about to come off finally. But now what's driving me nuts is the bulge above the left part of the ab scar. The doctor says it's just fat. But it's a big knobby bulge sticking out of one side. Somebody at work remarked on it today! Rude, but informative! He did say that this will be fixed in round two. When is round two? I would like to get rid of this thing!
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Chilly, I had my stage 1 in Aug and stage 2 in Dec. I still have tummy bulges!! Frustrating. Hoping it goes down in time. If what you have is necrosis, you can have that removed and it will be gone. If it's a pocket of fluid, not so sure.
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Hi Beckers, thanks for the reply. What's your plan for the bulges? Why didn't they get removed at stage 2? I had a trans flap not a diep, I wonder if that makes any difference. I wonder what necrosis looks like. This doesn't seem dead. Thanks for your replies!
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Chilli, it sounded to me like the bulges are pockets full of fluid that he wanted to avoid when doing lipo during stage 2. He said the necrosis looked like bubble gum. Yuck!
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So what do you do about them then? Do they ever get removed?
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I'm not sure. I need to ask my PS. I hope someday I get the flat tummy I hoped for. :-/
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Hi all - haven't been here in a while but wanted to pop on and see if anyone's had experience w/this. I had my NSM 9/19/11, immediate recon. w/saline implants & Alloderm. all has been terrific, but a few weeks ago I noticed a small, hard lump on the underside of my left breast (incision on this side is at top of breast b/c of previous surgeries to that breast, so it's not the incision). I have an appt. a week from Friday to see a surgeon who's standing in for my overly-scheduled surgeon . . . . anyone had this issue crop up? how did your docs evaluate it? I haven't had any diagnostics since this surgery - no mammos, mris or ultrasounds. it's been freeing, actually! not looking forward to the diagnostic rigamaroll . . . .
many thanks for any info. you have!
Sarah
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Hi Sarah - I had two lumps that showed up not too long after exchange and a third area that cropped up long after. I had a series of alternating MRIs and ultrasounds and the areas are stable and appear to be scar tissue related to stitching of the sling. I would venture that they will get an ultrasound first. Please don't worry until there's something to worry about. All my docs say that it's not unusual for lumps to crop up in reconstructed breasts due to scar tissue, but none of them wanted to assume.
I have lost some weight and it might be that the third area was there as long as the other two, but just wasn't easily palpable until the fat layer thinned out a bit.
Thinking good thoughts for you!
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Thanks for this, Tina - I hadn't thought of the sling - I would be willing to bet it's related to that. I too have lost a bunch of weight - so now literally no fat up top (my boobs are quite wrinkly, as a result, but that's another issue! look fine in swimsuit/bra) . . . wondering if it's been there for a while. We shall see! Curious - how often did they do the MRIs & ultrasounds? Prior to this dx I was on an every 6-month schedule. Annoying, but then again, this time my cancer was found when it was 3 mm via MRI - can't get much better than that, right? Txs. again.
Sarah
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Sarah - I initially had an ultrasound and something (that turned out to be nothing) prompted them to recommend the MRI. The MRI then showed something else (that turned out to be nothing) prompting them to recommend continued monitoring. So, I ended up alternating between ultrasounds and MRI every three months. Now I'm at ultrasound every six months.
I am in complete agreement about the benefits of MRI. I had very dense breasts and grew tired of the "No masses seen, but lesions may be obscured by the very dense breast tissue" reports year after year. In 2010 I just got it in my head that I wanted an MRI and it was a struggle because I had no family history and no concerns/lumps/etc. After 6 months and 3 docs trying to get approval insurance finally agreed. I had multiple tumors, but the main one was 8mm ILC, which my doc said probably wouldn't have been found for 4-5 years if we had waited until it could be palpated or seen on mammo.
Please keep us posted!
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Will do! Txs. again for your response . . . I guess being on the ultrasound/mammo/MRI merry-go-round is better than having cancer again, right?
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Sarah - While it's a little nervewracking always having an upcoming procedure I'm very pleased that my docs are all being cautious and making no assumptions. I think I'll probably end up having an annual ultrasound, which is OK.
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Hi Sarah- sorry you have a new worry! I had a lump about a year ago but it was near the top of my breast area near the armpit. Breast surgeon at MGH had me come in for an ultrasound and it was a lymphocele which is a sac of lymph fluid and nothing to worry about. Let us know how you make out!
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What ever you do protect yourself from ever getting breast cancer back again by NOT having nipple sparing. I had breast ca in 1998 and was 34. In 2000 gene tested positive and had prophylatic mastectomy on the other side. Dr. made me keep my nipple when I didn't want it. Fourteen years later was diagnosed with cancer in the nipple. Now I am on chemo again for five years. I am very upset and don't want anyone to have to suffer like I am. Please do not keep your nipple if test positive for the gene!!!!!
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Hi- I was looking for info on this stuff and am so glad I found this thread. I am 22 years old- BRCA2 positive. Over the past year I had notice changes in my RB, Had gone to my dr before and told her about it but she said I was too young. Finally, this December 2012 it was unmistakably a lump at 9 o'clock, RB, called the dr and they finally took my serious and got me in for testing. The first test (mammogram) and it was before the holidays, so I had to wait until after the new year to find out. I swear the stress almost killed me. (I have a 3 year old and thinking I'm only 22 and this could be my last Christmas, humbled me more than words could describe)... a back history, my great aunt whom I'm named after got breast cancer when she was 22, died at 28, but that was the 70s. Not as much info. Finally I went in for an US mid jan- and they told me I had 4 spots, and they were going to biopsy the largest/ ab .9cm, on the spot. After finding out it was benign (early feb 2013), I was so frustrated I had worried myself sick, I went for prophylactic BMX w/reconstruction (tissue expanders, sentinal node removed). That was feb 22 2013. I had 4 drains,
-I can say- since this surgery I have completely quick smoking, so I guess some good came of it- no matter what. Thanks for reading!
2 gone, 2still in, and I have a dr apt In ab 3 hours. My output is everywhere and will not stay at the specific 30cc for drain removal- I must remind you Im a 22 year old mom, so I don't have the option of being on bed rest to get the drainage lower. I'm so frustrated bc I can't even sleep at night (I started reading this post when I woke up
At 5am) but Im happy I found a group to gather info on this. At the same time, I can't put into words how hard it is to look in the mirror sometimes without feeling like I mutilated myself, Im sure some here can related in all totality. All in all, I don't know of I would have done this is if I knew the reality of this. With that said, my daughter will never have to see me get sick like I did my mother at 7 (my girl is 3) which really effected me as a child bc I didn't understand. Now I'm just trying to tell myself this is only temporary, but that is so hard when your constantly uncomfortable or hurting. Not to mention, any clothing on my breasts feel like sand paper. Idk what I did, but I'm trying to just make it at this point. Any words of wisdom are welcome, not looking for pity, just frustrated and constantly uncomfortable.
-Carol0 -
Carol- I am so sorry you are dealing with this at such a young age! You are not looking for pity, just support, and you will find it here. There is also a Facebook group called BRCA Sisterhood where you will find many people who had had this prophylactic surgery just like you. And there is a group for young women dealing with it also. You can look up the group and ask to be added.
Is there any way you can get some help with your daughter so you can rest? Your body needs to heal and then the drain output will lesson and you can get rid of those pesky things. If possible try to find a little help and give yourself a break. Take care; we understand!0 -
I placed this on another section of this forum, but I would like your opinions as well, please.
Hi Lady's,
I have been reading this board since before my surgery but am just now poking my head in to "talk" a little. I had what was supposed to be skin and nipple sparing BMX last October. I, too, felt very rushed to make decisions and I feel that I caused myself some problems in not taking more time to interview doctors. I feel I was pushed into surgery with a couple of doctors who may not have known as much as they said they did. I was told that choosing this type of procedure for my DCIS would mean 1 trip to the OR and no additional treatment would be needed. Neat and tidy solution to my BC. Well, it did not quite turn out that way. My BC was in my right breast with 2 locations, one with comedo components. So the advice sounded good. The problem was the lack of experience in doing this exact procedure. The BS took MUCH more tissue from the "good" left side and left suspicious margins around the cancer, itself. And SOMEBODY, (neither doc, of course), will admit to whom, left the retractor compressing the left nipple too long and destroyed the blood supply. So I came out of the OR with a black, dead nipple on the side with no disease. So...I am left with very uneven results and an additionally butchered left breast when the PC removed the necrotic nipple 2 weeks later, and radiation on the right with implants already placed. Having said all of that, I am truly blessed to be, as far as I know, cancer free.
My question to you ladys is this...I am still, after 6 months, having some significant, intermittent pain in my right breast. I am thinking that,due to the locations, it is probably still internal healing of the alloderm and muscle connections that were slowed due to radiation. Do you think this is possible? If I need to consult a doctor, I am going to find another PC as I refuse to go back to the "butcher". So any thoughts are very welcome.
Vickie0 -
Hi Vickie, so sorry for what you've been through. Another opinion is definitely in order. A member named Whippetmom is a wonderful resource when it comes to plastic surgeons. If you check into the thread Breast Implant Sizing 101 or send her a PM she might know of someone in your area.
Sounds like you've had lots going on so it seems plausible that you are still healing. It takes time even when everything goes as planned.
I hope you can find a PS in whom you can have more confidence. Best wishes to you!
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TinaT,
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Vickie - I remember well the time right after diagnosis. Time seemed to speed by and drag all at the same time. It is so difficult and stressful to feel you have to crash-course your way through this. I already had a local breast surgeon who did a biopsy on me (ADH) in 2009. I had such faith in her I would have done whatever she suggested in my foggy daze after my diagnosis in 2010. Fortunately, she knew I was a good candidate for NSM, which isn't offered locally, and she "sent me away" to an amazing team several hours away. I am so grateful and lucky that she had my best interests at heart and to have landed with a great BS and PS. Although it hasn't all been smooth sailing I have had the exact opposite experience as you. There are great docs out there, but you might need to travel a bit.
Please keep us posted...
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Tina,
Yes, I truly wish I had been sent away. I don't mind travel, in fact I love it! My husband is VERY supportive and is highly encouraging me to research outside our area for new docs. I am so happy for you and I look forward to getting the info that all is internally done correctly. That done I can be at peace with the cosmetic part. I am truly blessed in how the Lord has guided my journey and don't want to minimize that grace. Thank you very much for your encouragement!0 -
Vickie - Traveling for health reasons has to be considered seriously, however. As you already know, problems can and do arise and you need to imagine the possiblity of making that trip many times, sometimes on short notice. You often will need a driver so two of you need to be available - can be difficult if you or your driver works. My local BS already knew me and later said she knew I had the insurance, motivation, and resources to make it work. That said, I still think it was more than worth it in my case to travel for my surgeries.
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You are right, Tina. I am blessed that my husband is a high school teacher with lots of days saved up. My job also is flexible, so we will see what the Lord has in store with further investigation.
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Hi there, I had “bilateral nipple-sparing mastectomy with immediate DIEP flap reconstruction” at Magee-Womens Hospital of UPMC in Pittsburgh PA. My breast surgeon is Dr. Gretchen Ahrendt, and my plastic surgeon is Dr. Vu T. Nguyen, They are both great doctors. I am very happy with my resluts and would highly recommend them to anyone in our area.
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