Nipple Sparing Mastectomy with immediate reconstruction
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AMSK, I missed two questions. I'm up and have riden with my DH to get his flu shot and around town, but not really out and about. For one thing, I have these drains around my waist. If I put one of his shirts on, it looks like I'm pregnant with all the drain paraphenaila under his shirt. I don't really want to be seen. I sleep in the recliner and he sleeps on the couch. Our recliner has the lever to raise and lower the feet and I can't reach that yet, so he is having to help me get settled into the chair and then back out in the mornings. I'm thinking after the drains are removed I can probably stretch and reach the handle, but we'll just see. I would like to get in the bed, but I'm not sure about that yet. I'm sleeping very well in the recliner, but I'm also still taking a pain pill when I go to bed.
Now, maybe that was all.
Can someone tell me every detail about drain removal? Also, the PS is going to put me in a bra on Thursday. Can anyone tell me about that? The thoughts of him moving these mounds together makes me queasy.
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Kate33, Thank you so much. I'm going to cling to your words tomorrow. I had already thought that I would take a pain pill before the appt. so I definitely will now.
I was getting in the yukon Saturday and automatically reached up for the handle to pull myself up and thought I was going to die. It hurt so bad right in the middle of my chest. Like on the sternum. I guess there are stitches and maybe the alloderm is attached in that area, I don't know but it really scared me.
So that is making me really dread the PS moving them together and putting me in a bra. I'm so thankful for this forum to learn from each other and to vent when we need to.
Thanks, denise
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Denise - I had the same experience as Kate33 w/drain removal - NOT a big deal at all, and it's over in a second. You will be so excited they're gone, you won't care about anything else! It's so nice to put on a shirt/hoodie/etc. and not have them flopping all over. As for the bra and moving the implants - I was in a bra from the start, and while I was worried about moving the implants, it did NOT hurt at all - in fact, my PS had me moving them gently in from the sides toward the middle of my chest twice a day from the very beginning - just to keep things from seizing up. Follow your PS's instructions and you should be fine . . . they all have different methods - it's an art, not a science.
The pain you felt when getting in the car was likely from you pecs and maybe yes, from the Alloderm - just don't do that again, you hear? Sometimes you have to learn the hard way w/this stuff.
I'm 6 weeks out now, and remember the feelings you're having SO well - feels like things are just sorta hanging there, tacked together lightly, susceptible to the slightest movement, etc. The car was NOT my friend. I was pooped. In a matter of a few weeks you're going to be feeling a lot better, much more secure, etc. I still have fatigue issues and intermittent low swelling under my arms, but I look completely normal and I feel SOOOO much better than I did 2 weeks post-op. You will get here . . . hang in there!
Sarah
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Denise- I found it worked to sleep in bed as long as I had LOTS of pillows. I would have 2 to prop me up and then one under each arm. It kept me from rolling and I worried less about being jostled by my DH in the middle of the night. I think it was just as comfortable as a recliner and it was nice to be in my own bed. As far as the drains- you will be amazed at the lenth of tubing that was in your body! (If you're squeamish don't look!) They'll usually snip a stitch where the drain comes out, have you take a deep breath and then they pull it all out in one movement. Even if it hurts, it's over in a few seconds. Afterwards they will bandage it as it might be weeping a bit. When you go home just make sure to keep the site really clean. They may have you put antibiotic cream on it every day until it completely heals. When you're done have your DH take you out for a celebratory lunch or something!!!
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Sarah, Thanks so much for your word of encouragement. THey really do help.
denise
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Ladies -
Finding so much encouragement and good information on this site. Thanks!
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joy -
Thank you for taking the time to answer all my questions -- I hadn't realized I had asked so many!
Your story is very encouraging for us who have yet to go under the knife (I am sure there is a much more "PC" way of putting that - but what the heck, it is what is happening!)
It is interesting the variety of experiences as well as attitudes. Perhaps we may have more control over the later - but to some extent I suppose they go hand in hand. Anyway your overall positive experience and good spirits are heartlifting to hear about. I am so glad you are pleased with the results. Wish you continued good progress - amsk.
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amsk -
Thank you for your kind words. You did had some questions, but I think that I was pretty lengthy in my response too!
I am fortunate that this was found early and am making the best of it. We all learn something about ourselves on this journey - my outlook has remained positive for much of it so far. I appreciate your posts and the depth of knowledge that you are gathering - very helpful and supportive to find such great information.
I'll post again after surgery when I can. Knowledge is power.
Sending good thoughts your way.
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Deniseday,
The removal of the drains really doesn't hurt at all! Remember, a lot of the breast area is pretty numb at first so it is unlikely you will feel much or perhaps you will feel absolutely nothing at all! I really didn't feel anything at all! So, try not to worry about this for it really will not hurt. Please reread what everyone has written about the removal of the drains and know they are telling you the truth - it is not a bad thing!
When I had pancreatic surgery and had drains absolutely everywhere and they were left in for over three weeks, I thought I was going to die when the drains were removed. Actually, I had chest tubes as well and I hoped I would die when they were removing them! I remember asking the doc to stop and give me a pain injection before continuing with the chest tubes!
But YOU do not have chest tubes, thank God! So, you are not going to have any problem at all!
Sandy
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deniseday and joy: I asked you both a lot of questions and appreciate your taking the time to answer them. I was confused, joy, when I wished you continued success with your recovery. That should have been directed to deniseday. I do know, joy, that you have not yet had your surgery. I wish you the very best with it and look forward to reading your posts afterwards.
I admire both of your positive attitudes as you navigate down this difficult road we are all on. I am a bit behind both of you schedule-wise. Had an appt with my BS's office - looks like my surgery is going to be Dec 12th. My BS could have done it on Nov 16th as she had a cancellation but my PS was not available then. So, more waiting...
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I got all four drains out today and you all were right, it was nothing to it. Absolutely no pain. I was surprised though at how much of that tubing was in my body, eeewwww!!!
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Yay Denise!!!
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My BS works with 3 PS's, 2 of whom prefer TEs and 1 of which prefers one-step. I chose TEs, I'm a thin girl with full C cups, and the general consensus was one-step wouldn't be a good choice for my anatomy. Important things to know:
1) Your PS should be comfortable with whatever procedure you have. Don't push someone into doing something they aren't experienced in. Travel would be better.
2) TE's are needed more to stretch muscle than skin. They also give your breast time to heal from the trauma of surgery, reducing the chance of scar tissue forming around the implant (adhesive capsulitis). My particular PS feels strongly that the"pocket" he forms for the implant is the most important tool he has for creating the best possible final cosmetic product, and TEs and alloderm allow him more control over the formation of that pocket.
3) TE's also give patients the opportunity to experiment with different sizes, which helps you and the PS decide on the best size implant for you. In theory that reduces the chance that you will want a revision later.
4) Related to the posts about nipple survival, my BS and PS agree that this is very experience related, but it also depends on the surgical pathology and your anatomy. I wonder about the effect of one-step on nipple necrosis, because of the compression of the implant on the nipple base.
5) As you can tell by reading this forum, TEs are uncomfortable. They're annoying, especially when you sleep, because their edges aren't nice and smooth like an implant. They feel funny. And you have to have a second surgery and lots of appointments for fills.
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Hello all! I'm curious how many of you have been advised to continue mammograms after your NSM. Mine is recommending mammo's continue every 6 months for a few years due to the amount of tissue left (my NSM was on my "supposed" prophylactic side, which ended up actually having DCIS). Here is what bc.org says:
Mammograms will be recommended if you had a special type of mastectomy called nipple-sparing mastectomy, also known as subcutaneous mastectomy. In this surgery, you keep your nipple and the tissue just under the skin. Enough breast tissue remains to warrant the continued use of screening mammograms.
http://www.breastcancer.org/symptoms/testing/types/mammograms/after_surgery.jsp
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dancetrancer- My BS at the Arizona Cancer Center said that mammograms weren't necessary even with NS. The way she explained it to me is that BC does not form in the nipple (except for Paget's Disease but there's not really a consensus there either). It forms in the ducts and then feeds into the nipple. The cells within the nipple are checked during MX. Once all the ducts are removed during the MX it's practically impossible for a new cancer to form within the nipple. She said if I were to have a recurrence it would be right below the skin and I would immediately feel it. She told me she would order one if it gave me peace of mind but that it wasn't necessary so I've elected not to do it. I'm wondering if there are any concerns with the compression of the implants during mammogram or compression to the nipples?
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I was also told no need for future mammograms with the NSM/SSM for the same reasons Kate mentioned which is good since I couldn't even pass my first one.... lol
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Ditto for me on the no mammos, although my onc said he'd order whatever I wanted. I'm going to ask for annual MRIs, though, b/c I'm worried about compression of my implants w/mammos. When I asked him about rupture due to repeated mammos, my onc pooh-poohed it and said it was perfectly fine . . . then when I did some research, turns out that repeated mammos are associated w/implant weakening and rupture - often.
Bottom line - onc said std. of care for post-BMX women is clinical breast exam only!?
Sarah
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Don't you all find it strange that bc.org posts a different standard? I'd rather not mammo's, trust me! I'm not convinced they are indicated. I traveled for my NSM, and my local institution, a large university based hospital, is following my care and wants to do regular mammo's. They seem very conservative in their recommendations, and they rarely do NSM. Just what I needed, something to confuse me more. LOL. BTW, I had fat grafting only, so no implants.
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DT - not really - my experience is just that - that for many things in the cancer world, there are differences of opinion. Keeps us on our toes! That's why I have taken it upon myself to try to keep up to date on all things BC, particularly related to my treatments. When I see something and my onc. is not recommending it, I ask about it and possibly advocate for myself. He is receptive (I always bring in a sheaf of studies), and I figure that if I get lazy, the fall-back is still excellent care at a major teaching hospital.
But it sure is annoying, I agree!
Sarah
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Hey Sarah - you are so right! So amazing how many shades of grey there still are in cancer treatment. That's great how receptive your onc is to studies, etc. My BS in Miami is awesome like that, too. It's such a great, but rare, trait to find in a physician.
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DT, that's why I chose him - after I was dx'd, I "interviewed" a bunch of docs and chose my team. Dr. Y. is high-powered and well-respected, yet so kind and takes so much time w/us . . . never see a fellow, always him, and some appts. w/him have lasted an hour b/c we were hashing things out. He is an "old school" doc who teaches and cares for his whole patient, and I am so lucky.
Sarah
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I find that most of the information here on BCO (the main section not these discussion boards) is pretty outdated when it comes to nipple sparing. If you google "nipple sparing" on here most of the information is from 2008. A lot has happened in the last 3 years as surgeons become more and more proficient at removing the most breast tissue and testing of the cells in the nipple during MX. Most of the information on here doesn't even really inform women that NS is an option. I think they're doing a disservice to women by not having the latest information and research on here. I've written and made suggestions about updating but so far it has not been done. When you look up "Mastectomy" on here it only mentions skin sparing as an option and says the nipples will be removed during the MX. There is absolutely no mention of NS at all! Under "Questions to Ask Your Surgeon About Mastectomy" there should be the question- Am I a good candidate for nipple sparing? That is not there. You would have to know about it to find any information and that information is mostly outdated.
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Sarah- Is your Onc at Mass General?
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When I went for the second opinion BS consultation, he told me that I was an excellent candidate for the nipple-sparing procedure. My main BS had told me that as well, but I didn't go into the second opinion appointment asking about it, so it was very reassuring to hear that. I would think that many (most?) BSs know that already. Maybe I'm naive and just lucky, but that was my experience.
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Ginger - yes! Feel free to PM me if you would like info.
Orangemat - NSMX w/immediate reconstruction was the first option my BS laid out - didn't even mention any other options. But it seems from what I read here that it's very variable by hospital/doctor/region of the country . . . and I think a lot of BS/PS don't have experience w/the procedure and are reluctant to do it, so they don't set it out as an option. My BS (@MGH) said that although they're doing a lot of them at MGH, it's still so new a procedure that they all "high-five" each other after a successful OR session b/c they're so excited about it.
Sarah
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Orange- Unfortunately, a lot of women are still not being told about NS if the BS they happen to go to is not trained in the procedure. Many are upset to find out after the fact. It's sad that women have to feel "lucky" because they were informed of all of their options. This should be our right not a luxury. It should be a law that were are told about all possible choices when it comes to surgery and treatment- whether that particular doctor can provide them or not. The goal of doctors is to, of course, save our lives but they should also be trying to do it with the least disfigurement possible. I also feel "lucky" that I just happened to find a site that happened to mention NS before my MX and was able to switch my BS in time. But I know plenty of women who were not so lucky and that's just wrong.
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TLady - Thank you for this forum, it's the first one I've found on the topic. I'm slated for NSS BMX with immediate reconstruction without TE using gel/saline implants and TiBra. Has anyone experience with the TiBra (titanium bra)? I'm having the surgery on Thursday and I am not looking forward to it. I'm not scared, I've had lots of surgery, but I really don't want to have any MX. My job is so physically demanding and once I'm home I always end up doing something around the farm. Hand milking a cow that lost her calf will be my first endeavour, hope I can do it after a week or two? Any other farm girls here who may have advice? I have chronic pain so any surgery has it's challenges and I need my arms to help me stand or get up from the john. Will I be able to do that right after. My reading says I won't be able to push up my body weight with my arms for quite awhile, really??? They said I could drive after a week, I have a standard pick up truck, will I be able to shift gears? Sorry for the questions, sometimes I think I'm worrying for nothing, other times I don't think I can go through with it. Neither MX is prophylactic, mets in lymph taken care of in May, new multicentric cancer on R so both sides have to go.0
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SooCee - you should talk w/your surgeons, but I was told no arms, for anything weight-bearing and no repeated motions with hands/arms until further notice . . . which for me was 7 weeks! So I did a lot of scooting with my legs and using my abs, but there have GOT to be ways for women w/o that sort of mobility to get by after this surgery. Maybe they'll have good suggestions, or else an OT could probably be a lot of help in figuring out ways to do things that won't stress your body too much or mess up your reconstruction.
I've never heard of the titanium bra . . . but it sounds like you could have super-hero powers after getting that implanted!!
Sarah
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Sarah - your surgeon sounds AWESOME!!!
Kate - thank you for the perspective about things changing so much, even since 2008. Frankly, I'm surprised my university hospital here rarely does NSM. They seem ultra conservative...yet aren't they supposed to be on the cutting edge of research? All the shades of grey in bc care drives me nutty! LOL And yes, I would think bcorg would want to update the site about NSM with the current research showing it's level of safety.
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Sarah - Thanks for your suggestions. 7 weeks, yeiks, did you have any lymph nodes done? I'm not having any done, just the BMX. My abs are strong, just no knee caps, so very compromised legs and lower back (and a totally ratched shoulder). I will ask my surgeons at the time but this just occured to me while reading these forms. A bit late, and when I thought I'd asked all the appropriate questions...
The TiBra sounds great and if it does what I think it will, it lowers (greatly) the chance of the implants moving to where they shouldn't be during the healing phase and an added bonus, I'll never have to where a bra again.
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