Nipple Sparing Mastectomy with immediate reconstruction
Comments
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watercolorist- I am so sorry you have had so many difficult complications. Have you consulted with other PS's in your area to see if there is an answer? Sometimes each PS's training may be limited to their own experience and they're not able to think outside the box. I hope you find someone who has answers for you and can give you the results you deserve. I am so sorry you are having to deal with all this.
Tina- Everyone heals at a different rate so maybe it's just taking things a little longer to settle down after your MX. I wouldn't rush things. It's not a race much as we want it all over as quickly as possible. You don't want to start the fills, though, until your body is ready. Though the fills don't necessarily hurt there is pressure after each one. You want to make sure your nipples are ready for that.
motherofpatient- If I understand your question right it's not a matter of deciding between lumpectomy and mastectomy for your daughter but whether or not to do a mastectomy on the healthy breast. I did a bilateral mastectomy for a couple different reasons. One was my breast tissue had already shown a predisposition for creating cancer so I really thought it would eventually happen to the other side. Two, I knew if I had to have a mastectomy I wanted to have nipple sparing since I knew I would feel the most whole afterwards. I was worried that if I did develop cancer in the other breast it might be too close to the nipple and then I wouldn't be able to have NS on that breast. Three, I thought it would be much more traumatizing to go through the whole thing twice on each breast than once on both. And, fourth, it was a vanity thing. My surgeons told me it can be challenging to match the breast that had the mastectomy to the natural breast. Another reason I decided to do both is I would never have another mammogram ever again and I would have greater peace of mind. Hope this helps.
Sherry- There's a lot of conflicting opinions out there about what kind of follow up we need after mastectomies. If you are doing a mastectomy on one side you would obviously need to continue scanning the healthy breast. I had a bilateral and I can only tell you what my surgeon advised. She said I would never need another mammogram ever again. She said if a recurrence were to occur you would feel it immediately right beneath the skin of the breast. She isn't advising any kind of annual scan or testing, just an office visit with her for an exam for the next 5 years.
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Motherofpatient: Yes, I would second what Kate said above if she's trying to figure out whether to do bilateral. My decision was really set in stone when I found out I was BRCA2+. Again get at least two opinions and ask lots of questions. If there is any reason at all to consider doing the BRCA genetic testing, do it. I had no family history at all so it was a shock when I tested positive. Ask the PS if he feels he'll be able to match the existing breast.. make sure to get a copy of final pathology... consider having an MRI of the healthy breast if it hasn't already been done to rule out other possible problems. Will she need to have radiation? You mentioned mets... what do they know so far about her existing tumors? You might also consider getting permission to view Timtam's picture forum.0
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TinaT - I would really hesitate to have fills until all skin is healed. I had necrosis above the alloderm on my left (prophylactic) side. I had only the saline that was in my TE after surgery. The scabbed over part burst 6 weeks after BMX and spewed out serum like a bad boy. I ended up having emergency surgery followed by two more surgeries over the next month. At the moment I have no left TE and am currently mid-chemo so it won't be put back in probably until June. Then I will need fills and finally exchange. By the time I get to that it may be close to a year from start to finish. You def want to avoid stretching compromised skin!
watercolorist - do they have any theories about the possibility that you were allergic to the alloderm or do they just think it was regular necrosis? I had some scabbing on both nipples but my more serious problem was also on the skin below the nipple and above the alloderm. It has healed without the TE in nicely but I am worried about when the TE goes back in after chemo.
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Sherry - my doctor said the same as Kate's - no mammograms, no MRIs, just a check up with her once a year and I should be checking on my own. She said that if anything showed up it would be very close to the surface and easy to feel.
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Sherry ~ Regarding follow up ~ My onc is having me do yearly chest MRI's , he said it is probably "overkill" ..but I had some higher risk factors so wanted to play it "safe".
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motherofpatient - You're right, it's a very difficult situation. I was diagnosed with two different cancers in the same breast and was faced with the decision of having a single or bilateral mastectomy (I was informed that when more than one cancer is found in the same breast, multiple lumpectomy is not a medically prudent option). The larger of my cancers was lobular, which is often multifocal.
Knowing that I already had two masses and knowing that the lobular cancer could easy pop up on the "normal" side made it a no-brainer for me. I can only speak for myself, but when I learned more about nipple-sparing mastectomy I just imagined a better final outcome having them both done together. It somehow seemed more upsetting to me to think of having one "normal" breast and one reconstructed breast.
If your daughter is in a health system with a breast cancer navigator I would highly recommend taking advantage of that service. The navigator is a patient advocate who can help her along during this difficult process and provide whatever support she (and the family) needs.
Surgery: NSBMX with TE 2/16/11
Diagnosis: Left ILC, 8mm, Grade 1b, SBR Score 5/9, 0/1 nodes, ER+/PR+, HER2 -
Second area of lobular neoplasia and multiple foci ADH
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Sherryc - If you have mastectomies there is no imaging as follow up for breast cancer. Physical exam/palpation is done as follow-up. However, imaging may be required if you choose reconstruction. I had NSBXM on Feb. 16 with tissue expanders and will eventually have silicone implants. I will have an MRI every two years to check for stability/leakage of the implants.
Good luck with your decision!
Sunny321 and Kate33 - Thanks for the encouragement. I know it can get pretty ugly-looking and still turn out OK, it is just discouraging that one nip looks great and the other is very scary. I just saw the oncologist for the first time today and no chemo or radiation in my future (yay!). It sounds unlikely that my PS would proceed with fills, but if given a choice I will hold off.
SpecialK - Sorry you've had such a long and rough road. I wish you all the best!
Surgery: NSBMX with TE 2/16/11
Diagnosis: Left ILC, 8mm, Grade 1, Stage 1b, SBR Score 5/9, 0/1 nodes, ER+/PR+, HER2 -
Additional areas of lobular neoplasia and multiple foci ADH
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motherofpatient: I only had a unilateral mastectomy. For me it was a no-brainer because I am only 27 and wanted to be able to breast-feed the kids my husband and I plan on having. Any other pros and cons were secondary to me. Of course, most people on this forum are done with childbearing, and so this wouldn't be an issue for them, or probably your daughter. I will say that I think my recovery has been much easier than for those that had bilateral MX's in the weeks following the surgery. In the first couple weeks following surgery, I had full use of my non-operated left arm and side and didn't have to rely on other people to do everything for me (all the help I could get was still greatly appreciated though!). It was surprising to me how much the chest muscle, containing the tissue expander, was connected to all movement in the right arm - it made doing anything with the right hand extremely painful for a few weeks. I'm glad I didn't have that on both sides. I can't speak about the final aesthetic result yet because I'm still so early in this process.0
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Thanks everyone for your comments. Decision, Decision Decision. Will be nice when the time comes I don't have to make quiet so many.
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Tina- Yippee for no chemo or rads!!!!!
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Hi Kate33 and all you other wonderful women,
I hope it is OK to use this forum to vent? My surgeon told me very honestly that she has only done 1 NSM via IM incision, and it didn't turn out very well. So she doesn't want to do it for me. I trust and like this lady. And of course I am a D and the masses are in upper quadrants. I am scheduled for surgery March 8. Of course, I have lost it, and fear has crept back in. I have built up a house of cards (time off work, child care, hubby time off work) that is carrying me forward, and perhaps I should just be grateful I may get to keep my nipples. I also have lowish NK cell function and this isn't helping.
There, better now! No one else around me understands this.
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oh flygirl, i'm sorry. i did end up getting both mastectomies in the IM fold but until the week before surgery, my PS planned to do one IM fold, one across the front and around the nipple because of an old lumpectomy scar that complicated things on that breast. he told me at the time that really the scarring would be faint and he felt that doing so would give me a better chance at saving the nipple and skin. wishing you all the best next week.
Kelly
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flygirl239: It's so tough when you've thought things through, you've got your head wrapped around something, and you think you know how it's going to go. A change of plans makes can make you feel like you're starting from scratch again. In your surgeon's defense, I applaud her for being honest. Better that than forging ahead with a technique with which she isn't comfortable or doesn't think is right for you. I went into my breast surgeon expecting that she was going to to a more traditional incision for my NSBXM so I was thrilled when she informed me that she does IM incisions. However, I'm not out of the woods as one side is still struggling.
Thinking good thoughts for you...
Surgery: NSBMX with TE 2/16/11
Diagnosis: Left ILC, 8mm, Grade 1, Stage 1b, SBR Score 5/9, 0/1 nodes, ER+/PR+, HER2 -
Additional areas of lobular neoplasia and multiple foci ADH
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flygirl- Vent away! That's why we're here! OK, two ways to look at this. One is this is something you are going to have to live with the rest of your life and only you know how much the scars will bother you. Not sure what type of cancer you have or how advanced, or if there are other options for surgeons in your area, but you have every right to put the brakes on and find someone who can give you the results you want. On the other hand, if you truly feel comfortable with this surgeon and her abilities and want to go forward I have heard they are doing amazing things with lasers to remove scars. You can also check out the scar thread on here. There's lot of recommendations on how to treat your scars after surgery. I'm sorry you're having to make this decision, though. Just makes things so much harder I know. Good luck.
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flygirl: Throwing my 2 cents in. Wow, that has to be very hard to have this happen and almost at surgery time! Have you considered getting another opinion with a surgeon who does do these on a more regular basis? It's never too late. If you are the least bit unsure, do yourself a favor and get that other opinion. At least then you'd know if there was a chance of still doing the surgery you wanted. It's a tough decision, but remember this is your body. You could always call Monday and reschedule the surgery. Go with whatever your heart is telling you. Will be thinking of you this week!0
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SpecialK They do not believe I was allergic to the alloderm. My PS and BS are still trying to figure it out. My entire breast started turning purple while I was in the hospital. I am guessing that it was a combination of too invasive MX and lack of TE. I know it is important to keep pressure off the nipple tip while it is stressed by the healing. The large dressings I had on from the wound clinic would eventually fall back on the nipple tip from the pressure of my clothing. It healed a bit stubbier.0
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I am SO confused! My 1st 2 oncs said no need for mastectomy, had lumpectomy. New onc (same facility, other 2 moved out of state) says I definitely should have bi-lateral prophy mast. I am now 6 years post surgery, chemo and rads.
Okay, so I saw Dr. Song (PS) and Dr. Jaskowiak (BS) at Univ. of Chgo. Med. Ctr. Dr. Song says he, too, recommends mast. But Dr. Jaskowiak says it's MY decision and that with yearly MRI and mamm (both) I am okay, but I should have my ovaries out (I am brca2+).
She also said despite NS/SS and possible nipple sensation remaining the sensation is just that and not a sexual sensation. (any feedback about THAT statement is appreciated!) My skin looks good and I should retain sensation but (as we all have been told before) nothing is guaranteed, any sensation. She says to have my ovaries out and to go on an AI and monitoring is what she recommends for me. BTW, the new onc and PS are men.
I am now back to what-if-I-do-what-if-I-don't. My life would be much easier (physically and financially) if I don't have the mast, just the ooph. I am a single parent with a physically demanding job so taking the 6 weeks off would not be ideal.
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Can anyone help us with these questions? My wife is going for a skin sparring mastectomy only to remove two 1.7 cm IDC lumps, Is it better to wait for reconstruction or do it at the same time. We are getting conflicting recommendations. Some suggest that it is better to wait after chemo and possible radiation.
If she waits till after treatment, do they usually put an exoander or not necessarily?
Thx
mag1
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Jaybird627: *sigh* Ok, let's see if I can shed some light on what I personally know and my personal opinion. I'm BRCA2+ also and my daughter tested positive. Ok, so my thought is you should at the very least have the ooph. The ooph itself will decrease your chances of BC, but you WILL still have more of a chance than the average person. I had bilat mx and ooph, BUT I also had 3 mm IDC, triple negative cancer found. I assume you're done with child bearing? I don't know your age, but an ooph will throw you into instant menopause and you won't have estrogen, so you will suffer the consequences of that. So far, I'm fine, just hot flashes (ooph was one week ago). But over time, my bones will suffer and so will my skin, I will be "drier", and it may or may not affect my memory. They also say there is an increased risk of heart disease with ooph. However, you've already had BC, right? Geesh, in your shoes, I honestly would really consider both bilat mx and ooph. You've already gotten different opinions from different surgeons. Unfortunately, you're going to have to make this very hard personal judgement call. None of us can tell you if you'd never get the BC again. But I know the ooph itself will lower your chances, because of estrogen. As for sensation in NS mx, as you mentioned, you're never guaranteed you'll have ANY sensation. I was darn lucky... I have sensation in the right one, but not the left. Whether it's stricktly sensation only or whether it can be viewed as sexual sensation, well I don't know really yet but I'd venture to say it can be whatever type of sensation I want it to be! I have a great deal of numbness to the chest area in general. As for taking 6 weeks off work... I hope you realize the oophorectomy itself will mandate you to not lift anything over 10 lbs for about 4 weeks. You run the risk of hernia if not careful.
mag1: A lot depends on whether or not she will need radiation. I can only speak for what I had done. I chose immediate reconstruction with tissue expanders, which were placed at surgery and filled a little at that time. I meant I didn't wake up completely flat.. I still had something that resembled breasts, and that was mentally nice. However, I had been warned that if my nodes were positive, I would need radiation and that would probably put my reconstruction on hold. Radiation does affect the skin, but see, at this point, you don't know if she will need it. It's a toss up and again, like the other person above, you're gonna have to make the best decision you can based on what the professionals are telling you. By the way, I did have chemo and had the expanders filled while I took chemo... it was not a big deal at all. My skin is fine (no radiation though) and I'm very pleased with my outcome.
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Thanks, Angelisa, for your thoughts. Yes, the ooph is definitely something I should have. My gyne has been pushing it now for a few years. (sigh) I am now 50 and not sure about menopause, the hotflashes are horrific for months then disappear then come back. Went into chemopause then came out of that. I am in hormone limbo for about the past year now after about 3 years of irregular periods.
The time off work is something I can do with short term/long term disability. I actually use my upper body more at work (lifting/pushing/pulling) so upper body surgery is more worriesome to me than the ooph. I've had fibroids removed (twice) so I'm familiar with abdominal surgeries.
I have a lot of thinking to do about this. I'd made up my mind to have the mast. even though I wasn't happy with that decision and now I just don't know.
Janis
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I just went to see my surgeon today. As I said, I have a daughter who is BRCA2+. My surgeon said she strongly recommends her to have an ooph at age 35 at least, hoping she will be done with child bearing. So it would seem the ooph is the big one they push. Just wanted to let you know that. It's strange to me, because BRCA2 holds only 27% chance of ovarian ca. I think they must push the ooph because BRCA2 usually give ER+ ca, so the thought is to do away with the estrogen thus reducing risk of ca.
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Thanks cc4npg. Do you plan to leave the expanders or are you going to change them to other implants?
Does anyone on this forum have experience with Alloderm?
Thx
Mag1
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Mag1
I am sending you a private message.
Regards,
Sandy
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mag1: I just had the exchange for implants on the 28th. They won't leave the expanders in indefinitely, and you wouldn't want them anyway. They are like iron hub caps! But they serve a very useful purpose and the implants feel very soft and squishy, like real boobs. My fiance' keeps touching them and telling everyone (well, not everyone but close friends of ours) that they should feel them cuz it's incredible! Maybe TMI, but seriously once you get to the other side in this horrible process, you look at things different than before.0
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Hi - has anyone had breast implants after BMX above the muscle? I have had implants for 22 years above the muscle (been meaning to replace them for the last 10 but been too busy!) and now need a mastectomy on the left side as lumpectomy didn't get a clear margin. I am considering BMX due to symmetry and lessening the odds of recurrence.
Has anyone had a reconstruction with implants above the muscle immediately after mastectomy? My surgeon has told me that they will look strange and saggy which is not good as all the tissue will be gone and the skin will be the only thing between the implant. Alloderm is not currently legal in Australia so that is out also! Have first meeting with PS today but want to be armed with information prior. I'm a D cup at the moment but starting to realise it may be time to say goodbye to big boobs!
Also thinking if I can get smaller implants under the muscle without expanders it could work as I'm willing to go down to a B cup again...
I don't want anymore surgeries - I just want my life back ASAP and I don't like the odds of recurrence hence wanting no more surgeries and instant results. This may be unrealistic but just looking at options.
Any advice out there?
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Hi CC4npg. I appreciate sharing this information. It is very comforting to know that it is a one or 2 step reconstruction process. The PS we met yesterday told my wife that reconstruction in average is a 6 ~ 7 surgeries over a 2 year period. We left his office in serious depression
He is a new grad and probably looking for work.
mag1
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Mag1
I sent you a message a few minutes ago and I hope you can read it before your phone consult!
Sandy
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ticklewench-As far as what i've heard and read I would say most if not all MX patients have the implants under the muscle. Without any breast tissue I don' t see how it would work over the muscle. I have implants that are silicone and under the muscle and I have a lot of rippling. That is because of thin skin and no breast tissue. I can't imagine how it would look above the muscle with my thin skin. I think you can get a beautiful result under the muscle and could definitely change your size especially if you want to go smaller. You may be surprised though and could still end up with a full C or even D. As far as having a single or double that's a very personal decision. I could have done a single but I opted for a double. For the me the determining factor was I wanted what gave me the most peace of mind. I made a good choice too because after they took the "good" breast they found a lot of precancerous stuff in there too that didn't show up on the mamo or MRI. Think it through, ask questions,talk to your Dr and choose what feels right to you and gives you the most peace.
Mag- I have alloderm. It helps support and define the new breast. I don't understand why your wife's surgeon is saying MX patients need 6-7 surgeries? Most ppl need three-the MX, the exchange and nipples if you choose. They can be tattooed making it only two surgeries. Are you in the US?
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mag1- I had Alloderm when my tissue expander was placed and my PS used it, again, during the exchange to implants. I never had any complications from it. I think it is most useful if your skin is very thin. It just adds another layer between your skin and the implants. One thing I would make sure of, though, is to have it pre-authorized by your insurance company. It is very expensive and not all insurance companies want to pay for it. As far as that PS saying 6-7 surgeries I also have never heard of that before. I can't imagine why he thought it would take so many!
Ticklewench- I'd have to agree with sweetie. Don't think you'd ever want to place implants above the muscle with no breast tissue to cover them. Implants were never designed for reconstruction and if you hold one of them up you can see the rippling that runs down the side of them. That is what would show up under your skin. Even under the muscle, with Alloderm, I have some rippling issues. I don't think you would get a very good result going that way.
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mag1: How many surgeon's have you met with thus far? I cannot imagine why they would say 6-7 surgeries over 2 years. Personally, that right there would turn me off of that surgeon. He/she is adding stress, strain and depression on a situation that has enough of that to begin with. I looked back over your past posts on the forum. You seem to have met with a surgeon you liked, but their earliest opening was in May? You've also apparently determined most of the surgeons around you are truly old school. The road we must travel in fighting this beast is long. The part of the road you are on right now is a difficult one. There are so many questions that can't be answered yet, and it is overwhelming at best. But I want to encourage you that it will get better. Each step you take is one step closer.. each decision made is one more you won't have to face... each appointment or opinion gets you a little further down the road......... and prayer (I noticed you mentioned it in one of your posts) WORKS. Hang in there and don't keep thinking about the comment of 6-7 surgeries. I've only had two (mx and ooph/exchange). You're in good company here... we'll be there anytime you have questions, concerns, or just need to vent.0
