Nipple Sparing Mastectomy with immediate reconstruction
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Things went great at PS appt. today. Infection clearing up well. I had nipple sparing and he wants right side covered for showers so it doesn't get wet. Any ideas on what to use to cover?
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Beckers- Sorry no one responded about your question. I didn't have your situation so didn't have to keep it dry. I'm suprised your PS didn't give you a suggestion on how to do that. Not sure how you would do that other than to take baths for lower half and sponge baths for upper half. Don't see how it would be possible to keep the right side completely dry during an actual shower. Did you come up with something? Glad to hear the infection is clearing up.
Valerie- I received a call from my BS's office. She said the findings on the CT scan of my sternum do look suspicious but she was still waiting for the films. Once she receives them she's meeting with the multidisciplinary board to review and make recommendations. It could take up to 2 weeks. Sounds like they would pass me onto a medical oncologist anyway so got the ball rolling on an appointment with one closer to home. (My BS and cancer center are 2 hours away.) Luckily, there is a brand new Banner MD Anderson Cancer Center just 20 minutes away now. They said it could take 2-3 weeks to get my records, though. So either way I'm in a limbo state for at least 2 weeks. I know it's unlikely that it's anything but can't keep my mind from going there.
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Beckers - Also sorry....I didn't have an answer either so didn't chime in. I wasn't allowed to shower after my MX and exchange surgeries until my incisions closed and drains out. When I did deal with an open (but not infected) wound for many months, but I was told to let soapy water run over it. I wasn't allowed to swim, soak in a bathtub or spa, or exercise (to prevent sweat from entering the wound). I think I've heard of taping that super-sealing saran wrap over wounds, but personally I would feel nervous about trusting it.
Kate33 - This just doesn't sound right. Obviously, something is lighting up, but so many things can show up on bone scans and CT scans that I still think it will be something other than bone mets. Dang it! So sorry you have to live on pins and needles again. That part of this journey should be in your rear view mirror now. (((hugs)))
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Tina- I think their concern are the accompanying symptoms I've been having- pain, tenderness and fatigue. My doctor said there would be less concern if I had the symptoms but scan was clean or abnormal scan but no symptoms. I think they're just being extra cautious which I appreciate. I really don't think it's mets either but something is going on. Just want some answers and soon!
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Hi girls, thank you for responding. I think it would be hard to keep it dry in shower too. The right nipple is supposed to slough off one of these days. It started, but it's taking it's sweet time. I will just keep sponge bathing to be safe. Patience is a virtue right? Ugh.
Kate- sorry you are still waiting. Impossible not to think about it I am sure. I will pray it's nothing. Hang in there.0 -
Beckers- Glad to hear your healing well. Yes be patient! It seemed to take forever for me when I had black scabs on both nipples. I wanted to pick at them sometimes and small pieces of black skin were coming off. It sounds like yours are going to be fine so hang in there.
Kate-Sorry to hear you have to wait to so long to know whats going on. I guess you are right though it is better for them to be very thorough given your history. Most likely it is not anything serious. It is frustrating waiting though. Hang in there Kate.
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Thank you for the reply Sweetie2040. I just wish it would hurry and fall off. How did your come off, little by little?
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Hi Beckers,
The top layer of my right nipple sloughed off about a week ago. The skin just got stringy. I kept bacitrain and a pad on it. Once the skin was off, it bled a bit. The PS said that was a good sign. Now nice and pink. No ointment and not pad.
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Rebecca, my black left nipple finally was dealt with by my PS 8 weeks post nsbmx when I was under during a bi-lateral debridement surgery 8/27. No parts of the scab ever fall off and we were patient waiting for it to fall off week after week after week. End result: 1/4 of it survived. My right nipple will be reduced to match the left one post exchange and I will have two really new looking and pretty boobies. The nipple is healing nicely and I'm hoping my stitches will come out tomorrow. Hang in there girl....as sweetie says most times these scabs fall off and all is o.k. but I totally understand your concern and frustration. I went into the nsbmx knowing there were risks and no guarantee for a perfect outcome.
Kate, I haven't said a word yet to you about your latest battle, but I've been thinking of you often and praying everything will be o.k.
Hope everyone is healing well.
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I will continue to wait. I had about a sixth of it come off and bleed in the beginning and it cracked around the edge but then it seems to have stopped. When I clean with saline sometimes I wipe a bit harder just wishing it would slide right off! It's gross.
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Beckers: just to let you and others know, my reconstructed nipple (PS used excess breast skin from non-cancer breast) did not survive. It turned black and didn't seem to heal. It was under a bandage so I didn't see it much. My PS took off the black eventually. I can't remember when, maybe 4 weeks. Then it had to go under a bandage again until it completely healed. It healed as a flat circle and I finally got the okay for swimming and soaking baths at 6 weeks. But now I have only one "headlight" which bothers me for symmetry's sake. So in October I will see the PS to find out what my options might be. Any advice from anyone?
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Fearless, can your PS build the flat one up to match. That's what mine said he would do. I told him I want to go braless and I don't want permanent headlights.
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Beckers- It took quite a while for everything to heal. Small pieces of dead skin peeled off. Then there were scabs on the nipples and sometimes they bled a little. I was using bacitrain but it was drying everything out too much and iritating my skin. My Dr switched me to Auqaphor which was much better. I was worried too but I read how a lot of the women had the same black scabs so it was very reassuring. Now I know that's pretty much a normal part of this process. Most of the time things heal just fine and the nipples are healthy. Hang in there. Patience!
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Beckers- I know it's hard to be patient but the scab will fall off when it's ready. I had to keep telling myself it's like the umbilical cord on my DS's belly button after he was born. You just want it to fall off already because here's this perfect little baby with this icky cord. But you can't rush that and you can't rush this either. Hang in there! It will happen soon!
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Thank you. I'm trying to be patient. (I really want a shower too. Ha.)
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Beckers: thanks, but build the nipple back up with WHAT?! I've heard using inner thigh skin, labia skin, under arm skin, artificial things like the acellular dermal matrices (ACM like Alloderm). Someone told me about nipple "scarring."
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Fearless, I don't know how they do it. I definitely plan to talk to him about it because my left is almost a bit concave.
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Beckers- If your PS doesn't do fat grafting you might want to consult with someone who does and see if it can be used for something like that. Seems like that would be the most natural and less invasive way to fill it in. I know they use it for the divots left behind from lumpectomy. I wonder if they could somehow use it to fill underneath?
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Kate - I bet they could. I know my PS recently went to FL to train for fat grafting so I'm hoping. Round 1 was to get the flaps on and to survive. I was hoping that would be it but honestly, the nipples look like they belonged to 2 different people right now. Scab is almost gone on right side. Yay. How did your tests go?
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Hi Rebecca- I'm still waiting! Can you believe it? My BS's office called to say they finally got the images. (They had to be mailed from Phoenix to Tucson.) She thinks the 3 spots on sternum look suspicious but doesn't think it's mets. She wants them reviewed by their rads onco, though, and he was on vacation. He was supposed to review Friday or today and they will get back to me to tell me what the next step is which will probably be order pet scan. I'm also still waiting to hear from MD Anderson. They are requesting all my records to review and give their recommendation. So still in limbo. Thanks for asking. Good to hear your PS is trained in fat grafting. Sorry you're dealing with the complications but hopefully that will be a quick fix.
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Kate: New here because I'm about to have bmx with immediate reconstruction with an implant. I have metastatic breast cancer to the liver. My MO has found that PET scans throw a lot of false positives so she'll do CT and bones scans instead. Just throwing that out there. So sorry you're going through this scare. It sucks.
Susan
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Kate -are you going crazy? I know I would!! Hang in there - we are all praying for you!
Hugs, Valerie
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I thought no way would you STILL be in limbo! I went one weekend after a spot showed on chest xray and that was no fun. I hope it is nothing. Hang in there!!!
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Susan- Interesting about the PET scan. I've already done the bone scan and CT which showed the areas of concern. The report on the CT said PET scan is recommended so I'm just guessing that would be next. From what I've read it doesn't give a definitive dx, either- only biopsy does. Guess I'll wait and see what they say. Sorry about your liver mets. I'm sending good thoughts for your treatment. Hope all goes well with your surgery, too. Let us know if we can help in any way or you have any questions. (((hugs)))
Valerie- Thank you! My DH and I are trying not to get ahead of ourselves (emphasis on trying) but we've both had our little freak outs I'll admit. We just got back from a little weekend getway, though. It was just what we needed.
Rebecca- Thanks, too! I'll keep you all posted if I hear anything.
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Kate- I can't believe you are still waiting. Hope you hear soon and can move on from this scare.
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kate; my liver mets were spotted in the CT and I happened to have a CT from 3 months prior they could compare to (originally thought i had gallstones). after that it was biopsy. praying that your stuff is just wear and tear. as i told someone else today, cancer sucks.
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Kate been thinking about you and praying this turns out to be nothing
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Good news! My BS called me personally to say she doesn't think the bone scan is showing mets but something called costochondritis. She said the abnormalities are showing up in the joints. She told me this can happen after trauma to the chest especially after 4 surgeries. It's also been linked to fibromyalgia which I have. She wants me to do a PET scan in 3 months to make sure, though. I'm also keeping my appointment at a new cancer center near me just to make sure they concur which is on the 27th. I am so relieved and happy! Thanks everyone for all the support while I was waiting to hear!
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Kate:
Hallelujah!!! Great news.
Susan
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Excellent news Kate!!!!! Love the dancing lady. Ha!!
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