Nipple Sparing Mastectomy with immediate reconstruction
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Sweetie- Yes, augment girls can have it, too. (Which is one of the reasons I've never understood why anyone would voluntarily put implants in but no offense to someone who has!)
I had a consult with a PS once and was complaining about the pec thing. His assistant, who had augmentation, said, "Well, mine do that too". I wanted to ask her if she regretted having it done but refrained.
I do think it's the layer of fat that would allow that PS to put it over the pec.0 -
Could you please tell me your surgeon's name? I am Utah Valley and want the option of NSM.
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Dear VMudrow - Could you please tell me your surgeon's name who is skilled in NSM? I live in Utah Valley and would like the option, depending on outcome of second biopsy.
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ocean_kayak - Of course!! Dr. J. Michael Self - I loved him!! If you have any questions I would be happy to chat with you or even meet for lunch.
Valerie
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For those looking for NSM BS's in your area there's a link at the top of the thread where we were all posting who are surgeons were. I think that thread went inactive but wanted to remind everyone to post their surgeon's names if you haven't already. I found it can be a struggle to find someone as they don't advertise on google under "Nipple Sparing" unfortunately. If we can get that thread active again it also lets some women know that NS even exists because some are still not being told about it!
So I'm having a little "challenge" right now. I was having some pain so my GP sent me for a bone scan. It came back with an abnormality around my sternum. Trying not to freak out but they are sending me for a cat scan tomorrow. You try not to think about mets but I think it's something that's always going to be in the back of our minds. I'm pretty optimistic, though, since my BC was DCIS only so it would be extremely unlikely that it is BC related.
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Kate33 - Remember that the connections where clavicles and ribs meet sternum and where the ribs meet cartilage are actually small joints. Our chests take a beating through all of this so not unusual for those joints to become inflamed. That would light up on a bone scan (I used to do them so I know
). Lots of benign "things" light up - it's a very sensitive, but not always a very specific test. Glad to hear they're following up on it. Keep us posted! 0 -
Kate - I hope everything turns out ok!!
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Kate - to be in your shoes right now would be a frightening challenge for me too, please know this community is totally with you in heart. hugs, Jill
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Kate-I second what Tina wrote. Keeping you in my thoughts though cause I know it's rough waiting on any tests. Just know we a love you girl and I'm sure it's going to be fine.
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Tina, Valerie, Jill and Sweetie- Thanks for the support and the reassurances. It means a lot. I had the CT scan today so should get the results by Thursday they said. I will keep you posted!
I was at the dentist office yesterday and one of the dental assistants was dx with BC 6 months ago and had a BMX. Yesterday was the first time I had seen her since her dx. We got to talking and she was asking where I was in the process as far as recon. I told her I was all done and she asked if I had done nipple recon. I told her I had NS and I could tell by her expression she didn't even know such a thing existed. She also asked where my incisons were and when I told her the IF again she got this look like no one had told her that was an option. I felt bad for her and incredibly angry that women are not being told all of their options. Now she may or may not have been a candidate for NS but she still should have been told about it to have the option of exploring whether or not she was. To find out when it's too late is just cruel.
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Kate33 - That story breaks my heart. I can't help but put myself in your hygenist's place and imagine how baffled and crestfallen and, ultimately, furious I'd be to find out about NSM when it was too late. Could be that she wasn't a candidate, but if someone had taken 5 minutes to explain that to her she would have been spared what was probably a restless night last night wondering "what if..." GRRRRRRR!
I am grateful every day for the wonderful luck I've had with my medical team. It truly was luck because I wouldn't have even known what questions to ask in the beginning. How do you know to ask for something if you don't even know it exists????
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When they talk about 'awareness' this is definitely an area of education that should be addressed. The focus is often on finding the cancer ... but we all know that women are being diagnosed daily and they are unaware of so much having to do with navigating everything that follows with biopsies, surgeries, scans, possible chemotherapy, radiation, and reconstruction options. We need to tell our stories LOUD and OFTEN and to whoever will listen.
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Tina- So true! There is a bill that was introduced (in the house I think) called the Breast Cancer Patient Education Act of 2012 (HR 5937) where they want to make it a law that BC patients have to be informed that recon is an option and that insurance has to cover it. Unfortunately, they didn't take the law far enough. It should also say what the recon options are (whether or not that particular BS or PS can provide them) and also options with lumpectomy, MX and NSM. Incision location would be way too much to hope for! It infuriates me that this is not already a law considering the Federal Breast Reconstruction Law was passed way back in 1998. We sure haven't made much progress in 14 years!
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So were you guys given the choice of lumpectomy or NSM? My friend just got diagnoised with bc - and they are giving her the choice - i know I would go NSM, but she is leaning towards lumpectomy....
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Kate- I am keeping my fingers crossed that your scans come back fine!
vmudrow- I actually had a lumpectomy first but when I found out I was BRCA2+ I decided to have the NSBMX to avoid such a high percentage of recurrence and also did not have to do radiation due to this. I really think we are so overwhelmed with the diagnosis that we don't have the knowledge to know that there are different options out there and we need to be better informed so we can make the best choice.
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Valerie- I had a "mini" lumpectomy first but didn't get clear margins. I was then given the choice of another lumpectomy or mastectomy. The little voice inside my head said to go with MX. As it turns out the final path report showed multiple areas of DCIS so would have been back in for MX anyway. Guess all she can do is do a ton of research and then listen to her own little voice.
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vmudrow - Perhaps some women with strong family history or past history of biopsies already know they would choose MX by the time they are diagnosed as they've had time to play the "what if" game in their head. Otherwise, I think it's a natural response to want to save our breasts and many women obviously do great going that route. I initially struggled a lot and chose lumpectomy, but when a second cancer was diagnosed that was yanked off the table. Because I then had both ILC and DCIS in the same breast and had ADH in the other breast the year prior BMX was a no-brainer for me. I agree with Kate, without a crystal ball all we can do is look at statistics and then listen to that little voice inside.
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I had a NS BMX on Aug 9th. My right nipple has me worried. The center is black. The areola was partially black and purple but now a large portion has pinked up. My skin has some redness around the area and that is worrying me. No fever, not warm to touch. I am on Septra and putting Bactroban on nipple twice a day. I see BS and PS tomorrow, but I can't sleep as I am worried about infection. My breasts are reconstructed from abdomen (DIEP). My nipples look very different from one another. Is this normal? Right looks beat up and left is like a beige color and flatter, but I know they scraped it for pathology since DCIS was 1 inch away. Does it just take time?
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Hey Beckers,
I have similar. My right nipple - the side that was pretty 'beat up' is sloughing today. Left looks perfect. Was told to expect this but it's not pretty. Will be anxious to hear what your PS says.
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Kate - hope you get good news today!!
Kate and anybody else - so my friend went to two different doctors - one said NSM with scar under breast - the other said straight across (able to get all of cancer better) - is this true? The one that said this trained the other one??? Also her bc is grade 3 and first dr said no chemo (if not in lymph nodes) if having NSM, other said she would recommend chemo for grade 3 no matter lumpectomy or NSM. This is making it way hard for her to make decisions.... any ideas?
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Valerie- From everything I've read, and what my own BS told me, unless a woman is very large breasted there's no reason not to do the IF incision. (And usually if they're large breasted they're not considered good candidates for NS, anyway, though some BS's are now making exceptions.) The surgery itself does take a lot longer as it's more painstacking. My theory is a BS is paid the same by the insurance company but using the IF and doing a NS takes about twice as long (according to my BS) than a regular SS MX with the incision through the center of the breast. Not all BS's are trained in the IF incision method either. There is definitely some skill involved in getting all the breast tissue with this technique. As far as the chemo- what type of BC does your friend have? I thought chemo was only indicated if the BC had spread to the nodes? I assume they don't know, yet, whether or not this has happened? So I'm confused as to why one of the doctors is advising chemo already? Is she consulting with breast surgeons or oncologists?
Back to her decision about lumpectomy or MX I remembered I have a page saved to my computer about that. It's by the American Cancer Society and it has a list of questions to ask yourself if given that choice. I thought it was well written. You may want to forward it to your friend or print it out. I'll try to post a link to it. If it doesn't work copy and paste it into your browser or look on the American Cancer Society website (cancer.org) and put in "surgery for breast cancer" in the search box.
http://www.cancer.org/Cancer/BreastCancer/DetailedGuide/breast-cancer-treating-surgery
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Beckers and 301724: My NSBMX was July 3, my left nipple was pretty much purple/black from the moment I woke up from surgery. PS and I were hopeful that it was just a scab and would fall off as the weeks went by. Last Friday PS removed remaining scabs on my incision lines (both breasts) and one breast had a pin hole and the other a small part of my incision line opened. I was back in OR 2 days ago to repair and re-stitch. In pre-op he said he may remove the black nipple. There is no magic formula to determine when necrotic nipple tissue gets removed or if it falls off by itself. It's a risk of the reconstruction and not all nipple tissue is guaranteed to survive. My end result was excellent, roughly 1/3 of my natural nipple survived, it looks really good and the incision repair is great, no new incision lines. After my exchange surgery months down the road, I have the choice to rebuild the smaller nipple to match my other big one or reduce the big one to match my new kinda cool nipple. PS said reducing the big one will be a better result and it's easier to match. I'll probably chose that, I won't miss having huge nips.
I understand your concern, if at anytime something does not seem right in your healing see your PS and BS, you have to continue to be your best advocate. Your teams of doctors are there for you and infection prevention is on top of their list.
Time to take my antibiotic....keep us posted on how your healing is coming along.
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Beckers- The black nipple is pretty common. It's probably the most alarming but seems to be the one thing our BS or PS don't remember to warn us about. (Wonder if most of them even realize it happens?) What most of us find is the nipple will turn dark, a scab will form and eventually fall off and the nipple should be nice and healthy underneath. (I always think of it like a newborn baby's umbilical cord!) Just try to keep it protected and don't pick at it. It will fall off when it's ready. Unless you see any signs of infection it's best to leave it alone. Good luck! 0
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Valerie - chemo can be indicated without node involvement. You can be a stage iii without any node involvement depending on the size of the tumor, the grade of the tumor, or the presence of inflammatory breast cancer. Although your friend may not have seen an oncologist yet, the breast surgeon may have laid out the probabilities and possibilities to her based on the information that they have this far. My breast surgeon was extremely thorough in going through all the "if - then" scenarios with my husband and me as well a breast surgeon should as she is often the first specialist a patient will see. Of course she helped me find a medical oncologist and made certain that I met with her also prior to making decisions. This was the same with a radiation oncologist and the plastic surgeon. I was quite fortunate to have a BS who was diagnosed with BC herself when she was pregnant with her oldest child. She "knows" in a way that only she could. The main points of my rambling post is that she could very well need chemo and that could be known based on the pathology of a biopsy alone. And she should get information and have consultations that will aid in decision making and the unfolding of her treatment.
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Thank you for your responses. Do you know if nipple is dead, could it cause breast infection? The redness of my skin has increased this morning. I will find out at BS and PS appts later. Just bummed. I've tried to be so careful darn it. :-(
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Beckers: Most likely not, that was one of my questions to my PS not that long ago and he said the dead tissue was not harmful. Don't blame any of what you are going through on yourself. I was super careful too.
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Kate33 - I remember asking this question at the very beginning when I was overwhelmed and flooded with new information, but I needed a refresher a few weeks back because I'm having a pretty rough time with the Arimidex. What's the point of taking hormone therapy or chemo if one chooses bilateral MX and lymph nodes are negative? My MO reminded me that invasive cancer can spread by either the lymph system or directly through the bloodstream. From reading these posts it sounds like tumor grade and patient age come into play with certain types of BC and many MO recommend chemo despite Oncotype DX results, etc.
Regarding the IMF incision - a BS told me the first time she used the IMF she felt like she needed a miner's helmet and that it took a while for her back to recover because it was awkward and took much longer. So, I especially appreciate my "invisible" incisions knowing why some surgeons choose not to do them
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Hello to all!
I have grade 3 and chemo depends on where the tumor is located and its size. Assuming your friend hasnt had surgery to see if nodes are involved chemo question is hard to answer. Some oncologist think its better to do it with grade 3 because the cancer can skip the nodes and travel through the blood stream to different areas. As far as the 2 doctors are concerned if they arent skilled in Nipple or skin sparing will do straight across. Not all women are able to do nipple sparing but can usually do skin sparing with is much better than the straight line. She needs to see a PS as well before surgery if having mastectomy to start reconstruction. Im having double nipple sparing masectomy with TRAM at same time. Im going in with 2 breast and coming out with 2 smaller breast because i dont want any implants so he has to use it to make 2 breast instead of one.
Hope this helps
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For anyone interested, I just updated my thread on the picture forum as it's been one year since my exchange to implants. I had loss of part of one nipple due to a combination of a rare reaction to the blue dye used for sentinel node localization and the temporary vascular compromise of nipple-sparing surgery. Because my PS was very patient and we waited it out rather than just removing the whole thing it turned out looking pretty good!
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Tina- Interesting what you posted about your PS being patient and waiting it out. This is something I have been wondering about, lately. Not your exact situation exactly but wondering about the black nipple that a lot of us experience. I'm wondering how a PS would be able to tell what is a normal stage after NS and what is necrosis? The descriptions of both sound very similar. Since a lot of PS's don't appear to warn their patients that the dark or black nipple can occur I wonder how many of them know to expect this? Any time tissue appears blackened it would normally be necrosis but in our case it just seems to be a part of the process. I have to wonder if there are any women whose surgeons recommended removing the nipple thinking it was necrosis. I wonder how they tell the difference, though? I'm glad yours waited it out and you were able to get a good result.
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