Nipple Sparing Mastectomy with immediate reconstruction
Comments
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vmudrow-
Welcome! I think everyone on here had the dark nipple thing which most of us were never warned about. Sometimes it takes months to look pink and happy but it will happen.
I had the same issues with nausea but there are a lot of different meds you can try. I would tell your surgeon and I'm sure they can switch you to something else. If you are ever really worried about something always call your surgeon night or day. Their service will relay the message and most are good about calling back within minutes. They are used to it. And, as TNLady said, the drains should come out in about a week and you will feel SO much better just having those gone. (By the way, having them removed is really no big deal. Another thing most doctors don't say. You just take a deep breath and they pull them and they slide right out.) Good luck with your progress! Do you have tissue expanders?
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Hey guys! I am back on today. I am on percocet which for some reason makes "reading" and "writing" challenging for me, but doesn't impair anything else, or so I think!
Today, I am 5 days post op and am feeling good. I haven't strayed from my drugs though...I take one percocoet every 6 hours along with an antibiotic. I had one drain removed yesterday and I get the other two out tomorrow. The drains haven't really been a bother, only that clothes look rediculous over them. I have one sore spot which is the incision on one side in the inframammary fold. It looks like super glue on it! It just gets sore if I move certain ways. I have managed to take lower body showers on my own and have been doing small walks too. Pretty much, even after surgery, I started drinking and eating. The nurses were surprised to see that I had an appeitie and they were surprised I could go to the bathroom on my own. I used mostly ab muscles to get myself in and out of bed. I didn't realize how much they would help me but keeping my core strong was super helpful! That is one thing that I would reccommend for anyone heading into surgery...if you rely on your abs, you won't need to strain your arms!
GAgirl-I think we are on the same schedule! Glad to hear that you are recovering well too. Hang in there...you sound like you are doing great! So happy for you!
Thanks everyone for your positive thoughts. They have been heard. (= Back to nappy time...
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hurleygirly-
Yea! So glad you are doing well! I can't believe you're taking walks already but it's great that you are. I think I babied myself too much and am now paying the price. Good advice about working out the core. It does help getting around and in and out of bed.
My hospital actually had room service and the nurses couldn't believe I ordered pancakes, bacon and strawberries. I was starving! Nothing ever tasted so good!
I'm sure you are but- hydrate, hydrate, hydrate!!! Percoset can really make you constipated. (Learned that the hard way, too.) (No pun on words!) Happy nappy!
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OMG Kate...I HAVE to hydrate because that was the one thing after surgery that all my docs told me..they said that they could tell that I was totally dehydrated! I probably live life dehydrated but have been conscious of it now that the docs told me. I am drinking crazy amounts right now but that is great advice!
I am so thankful to be comfortable...I don't know if I just got "lucky" or maybe I have a high tolerance...I don't know...but I am not complaining! I am totally taking those stool softeners too. I notice the "lag" in that type of bathroom break! I would say it is once every two days. I don't know what is normal when you are on percocet but that's about all I can get out! I wonder where all that food I have been eating goes...??? LOL
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Hi ladies
You all who are post op sound great! Keep up with the meds...I am so glad your recoveries are doing well!
GAgirl: so happy you had good news!!!!!!
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In the context of painkillers causing constipation and of what to have on hand before surgery...someone suggested Miralax laxative. It was great.
Also, I just came from the oncology surgeon and I complained I was discouraged about how little energy I had. He said to be sure to have lots of protein--50 grams a day. He said your body uses protein to heal, and if it's not in your diet, it takes it from your muscles. Also, he said get up and take a walk--his advice is, even if you take a 15-minute walk and come home so tired you need a two-hour nap, it's better than sitting home and doing nothing for two hours. Finally, he gave me tip for getting my drains to finish draining--use my left arm (I had a uni) as little as possible. I have had this drain in for 18 days and it's still draining 35cc--the ps wont' take it out until it's 30cc in 24 hrs.
Anyway, I thought I'd pass that along...
best to all, joan
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Hurleygirly~
So glad to hear your doing well. It looks like we're on the same timeline. I second you on the Hydrate, hydrate, hydrate...I have kept Gatorade next to my bed and can't seem to get enough. For those getting ready to undergo surgery...take your meds post-op & don't forget the laxitives. This can make you really miserable!
I'm right there with you when you say your comfortable; I almost feel like I should be having more pain. I'm SO thankful I'm not, but kinda feel guilty. Do you have TE's ? If so, when will they do your first fill?
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Kate33 - I do have TE's he put 50cc in during surgery. I was small anyway so I hope he doesn't go to fast. I am not as nauseated today so that is nice. I have only taken Tylenol today and its nice to be more awake. I also was starving the day after my surgery. I ate a full breakfast and lunch. May 13th will be one week, the PS thinks my drains will come out then. I only have 20cc or a little less from each one, but it is still red. I wonder if he will do the first fill on Thursday? Is it OK to sleep on your side? My back is getting sore.
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vmudrow-
The day my PS took the drains out is the first day she started the fills. I started out with 100 cc's put in during surgery. (Funny how every PS does it different.) My first fill was another 100 and each time went a little less. Having the fills is really no big deal. Your breast is usually so numb that you don't even feel the needle. My advice, though, is to tell them to stop when you start feeling pressure. (You'll know.) If you are going to have pain from the fill it usually won't hit for a few hours. Some PS's want to put way too much in at a time but it is your decision how much and how fast you want. If you want to go slow tell him. I was also small to begin with and the smaller women seem to have a tougher time of it, especially if you're like me and you're hoping to end up a little bigger than when you started. (There has to be some perk from all this, right!)
As far as I know there's no problem sleeping on your side. Those annoying TE's aren't going anywhere (though I would be sure you're not crimping the drains) but I haven't found too many women who can comfortably do that. I'm a side sleeper but just can't do it with the TE's. I have been sleeping on my back (propped up with pillows) for 2 months. I can't stand it. If you can get comfy enough to do it- go for it!
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I've been sleeping on my side (it's that or nothing for me, even when it hurts)- try putting a small or flatish pillow between your arm and side on the side you're lying on. It helps me. I was given these tiny little pillows by the hospital that I use but anything really soft/squishy would probably do it.
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I'm a uni but can only lie on my non-surgical side even still with an early January surgery! I'm hoping the exchange will help with that since (of course) I prefer to sleep on my surg side.
I do often find myself on my back with my arm up over my head as well. I think it is trying to get movement and lympedema issues under control in our sub-concious mind!
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Hi everyone. It's been a while since I've posted. I have my exchange surgery scheduled for May 20th. Yesterday I had my pre-op appt.It was a crazy surreal experience. I'm confused about what to do about getting blood work and blood pressure tested after bilateral mastectomy. Whenever I read anything about preventing lymphedema, it always says to use the unaffected arm. WHat about bilateral mx? Last week I saw my gynecologist and of course they wanted to take my blood pressure. I suggested my leg, she said she had never heard of not doing blood pressure on the arm for a mx pt, so I agreed to let her do it. The yesterday the tech said she wasn't allowed to do blood work on the arm of bil mx but also wasn't allowed to do the leg! The doctor's office said they never heard of NOT being able to do the arm. I kept on saying, "I can't be the first bil mx pt ever to have surgery at this hospital!" I had to wait over an hour until an RN did it on my leg. I want to prevent lymphedema, it's frustrating that I'm not getting clear info. Sorry to ramble, I'm curious what other women have been told.
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gulp- I never heard a word about this from my doctor but I have read a lot of posts on here about women warning about it. You might find more information under lymphedema forums. I am going to ask my BS about it at my next appointment.
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Dear gulp--I had a mastectomy just to my left side, but I was told that they did use the leg in the case of bilateral surgery. I am wondering, and I'd be curious to know what you find out, if it has to do with lymphedema or more to do with circulation being impeded in that arm--i.e. that fluid doesn't move as efficiently with missing lymph nodes. they also would only use my 'good arm' for blood draws and IVs
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Gulp - I was warned early and often about blood pressure checks and blood draws. I had a lumpectomy and the lymph nodes were removed under the left arm. The nurses ALWAYS ask which arm to use before checking blood pressure. They just don't like to risk it because lymphadema can flare up.
If you have had lymph nodes removed, most hospitals and doctors offices will not use the arm on your surgery side. If lymph nodes are missing from both arms, the leg is the next best option for blood pressure checks.
I don't know what the docs say about BMX patients if the lymph nodes are still in place.
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Are we talking sentinel nodes or lymph nodes or both? I'm confused!
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Recovery continues to go very well...my husband and I walked 3 1/2 miles this morning! It felt so wonderful to be out in the fresh air. I finally have some relief from eternal tightness in my chest; just in time to see my PS tomorrow! haha Hopefully my drains will come out tomorrow also. I spoke with my BS today and received my official path. report...0/4 Nodes-negative; but they did find 8mm of invasive ca within the mass. Although it is a small amount, this changes my dx from DCIS to IDC as well as how my post-op therapy will be. Quite a blow! Now I'm looking at adjuvant therapy, chemo. or possibly both. We're still waiting on the ER/PR recpt. results as well as HER2 results. Sorry to whine, but its all overwhelming right now! I felt like I was dealing with the BMX really well...as a means to an end. No such luck. This is where I'm hoping to find comfort from you STRONG ladies who have been there...I know I can do this, but I'm scared.
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It's ok to get blood pressure etc done on either arm as long as lymph nodes were not removed (sentinel or more) which usually is only on one side with the bmx. I also got both sides done and was concerned- I was told they had NEVER seen someone get lymphedema in the other arm and the odds were less than 1%. Sentinel node removal odds are 3-6% (anything under about 10 nodes would be considered a sentinel procedure I think). It's only with more that they start to go up. If you have nodes removed on both sides, you have to use the leg. It is an issue of fluid circulation- irritation causes fluid to go to the irritated site (a healthy response) but fewer nodes means less ability to drain off the fluid so it can build up causing LE. So not causing irritation=no problem.
I'm sorry GAgirl- that really sucks. I don't know what else to say. But you'll get through it. I guess what I can say is that for me, I did chemo and all that, and it was a lot easier than the surgery because however much it sucks it's temporary! You just get through it and then it's OVER and you move on.
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Thanks for your responses. I think what makes me crazy is my breast surgeon never mentioned anything about preventing lymphedema and the gynecologist never heard of not taking blood pressure on the arms and the staff at the hospital didn't know what to do with me, and so much of the literature just mentions using the unaffected arm. I had lymph nodes removed from both sides.
Sorry GAgirl, to hear your news. I can relate. I was first dx'ed with DCIS and after everyone told me how lucky I was, that it was stage 0, I had an MRI and found out I had invasive lobular ca in my "good" breast. I'll never forget that phone call, it was the hardest moment for me. I found out about it before my mx, so it's not the same exact situation. But I know that feeling, when you feel like at least you know what you are dealing with, and then you get hit again. I felt like I was kicked in the stomach. After I had my bil mx I found out I had some more unknown DCIS and the crazy part is that that they couldn't get clear margins, even though I had a mastectomy. It makes me very upset. I am sorry you are going through this. Somehow people can find it in themselves to adjust to upsetting news. Don't worry about whining or not being positive. Just be yourself. This whole cancer thing sucks!
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I don't know what you do with nodes out on both arms. I know they can check BP other ways but it is more difficult. Good question though...anyone know the answer?
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I'm glad you guys brought up the discussion about the lymph nodes and blood pressure checks. I had not thought of this and it was never mentioned to me by any of my doctors. As a matter of fact, when I went to my family doctor not long ago, they took it on my side that I had my lymph nodes removed from. I did not have any problems, but I will be aware of this in the future. Thank you for sharing this information. I feel we would be in the dark about a lot of things if we did not have each other to share with! I know I have said this before, but I feel so fortunate to have such wonderful, strong ladies to share with.
Gagirl, We are here for you, never worry about whining or venting to us! I think it is better for us to let it out and voice how we feel, and at least here we have women that can relate to how we are feeling. I am guilty of keeping too much in at times and that tends to catch up with you after awhile.
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GAgirl01-
So sorry to hear your news. You're not whining, but if you were, you certainly have a right! I know I would be. Hoping the rest of your test results are better and you can avoid chemo. But if not, we are all here for you! Cry, vent, whine, whatever you need. I think this site is better than any support group any day. Good luck. Keep us posted.
TNLady-
I agree with your statement about being in the dark about a lot of things without this site. I don't understand why doctors aren't more consistent in the information they give to their BC patients. I think about all those women out there who don't have access to this site and it's frightening. I recently read a post by a women who had just had her MX and her surgeon sent her home without pain meds of any kind. When she questioned him he told her she'd be fine with Tylenol! Unbelievable! (Needless to say we set her straight that her doctor was an idiot.)
This site is kind of my gauge for what is "normal" and what is not!
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i had a bil mast with 1-step alloderm...on the 5th post-surgery day, I am no longer on pain medication! My surgery was May 6, 2010.
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I got my pathology report too yesterday. Clear margin & neg nodes! On the 5th day, no pain med needed! no more drain. The pain is something women can handle, we somehow get the strength to undergo this journey - from faith, support of family & friends.
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JUST GOT MY DRAINS OUT!! Wasn't bad at all! Off to have a long shower. I had NSM on both sides for atypical lobular hyperplasia, got my pathology reports back and luckily everything was negative!! I kept thinking there might be something lurking in there.. good luck to everyone else.
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Thelma312 and vmudrow-
Congratulations on awesome path reports! Good luck with the healing and recovery!
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Hello, all,
Hope it's okay if I drop in for just a moment on this delightful group. I'm nine years out from my bc diagnosis (yea!
), and six years out from my lymphedema diagnosis. I had bilateral mastectomies, one of them prophylactic, and have lymphedema in both arms and my chest. (Lymphedema in the chest, breast, reconstructed breast, side, or back is called "truncal lymphedema." It is fairly common since a SNB targets the nodes that drain the chest/breast, but our doctors can be slow to recognize or diagnose it.)Good news first!
Lymphedema can be treated, and the sooner it's treated the better the outcome and the easier it is to manage long-term. There are also guidelines for reducing your risk of lymphedema. Here are two good sites for that:http://www.lymphnet.org (This is the National Lymphedema Network site; see their position papers on Risk Reduction, Exercise, and Air Travel)
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
Since my left arm lymphedema (one node removed on that side) was triggered by a blood pressure cuff (which my doctor and nurses all assured me was no problem), I have pretty strong feelings about not risking our arms. Lymphedema is for life, so it's worth standing up for yourself about not running unnecessary risks. Blood pressures can be taken on calf or thigh (calf is more comfortable), and if your nurses/docs don't know how, there are threads about how to do it (with posts written by nurses and a doctor) on the "Lymphedema After Surgery" board here. Blood draws and IVs can also be done in feet, but for that your doctor's order needs to have "Use foot only" written on it. The contraindication to using feet would be a history of blood clots.
A survey was done two years ago by Dr. Stanley Rockson of Stanford U. to determine how much time was spent in our U.S. medical schools teaching new doctors about the lymph system. He found that the average amount of time during a four-year med school program was 15 minutes. In other words, if you read through the risk reduction materials I posted above, you've already spent at least as much time learning about lymphedema as your doctor has. So if they don't seem to know much about it, that may be why. It does NOT reflect on their knowledge of their specialty, so they're not being jerks -- they just don't know.
To protect ourselves in doctors' offices and hospitals and during tests, those of us at risk for lymphedema need to patiently educate our healthcare providers, remind them often of our concerns, and insist on whatever risk-reduction practices we've decided to use. It can help to use alert bracelets (available free of charge from this site: http://www.lymphedema.com Just click on "Free Alert Band" on the left-hand side of the page. While you're at it, order enough for your face-to-face support group!) If you've had bilateral mastectomies, order two, one for each arm.
Best risk management of all is to insist on a referral to a well-qualified lymphedema therapist for baseline arm measurements for future reference, individualized risk-reduction tips, and fitting for a compression sleeve and glove or gauntlet (fingerless glove) to use prophylactically for exercise and travel. Here's how to find a well-trained one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmHope you're not all bleary eyed from reading
, but as you can see, this is a subject that those of us with lymphedema wish we'd known about in time to take steps to avoid it -- and we want to make sure our bc Sisters have that information.Be well!
Binney0 -
Hello Binne, thanks for posting your experience we can all learn from it. Just have one question being you had your surgery awhile back. Thanks for the link regarding the wrist bands.
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PB, if you mean do these things still happen, goodness yes! There are lots of women on the Lymphedema forum here with lymphedema following SNB and prophylactic mastectomy, and their surgeries were within the last year.
The percentages often quoted about rates of lymphedema occurence are not accurate partly because lymphedema can occur at any time following bc treatment, even years later. And partly because doctors so often miss the diagnosis. The "definition" of lymphedema can vary from doctor to doctor. Some won't diagnose it until there is a certain number of centimeters of difference between the arms, but by then it is often Stage II lymphedema and much harder to treat and control. Truncal lymphedema is even less likely to be acknowledged.
In fact, with more of us living longer due to improvements in bc treatment, the numbers of us who are eventually diagnosed with arm lymphedema are going up, and the numbers of us with truncal lymphedema have gone up even more dramatically in recent years.
Please feel welcome to join us "swell" gals over on the Lymphedema forum -- lots of neat ladies there anxious to help with any questions or concerns.
Be well,
Binney0 -
GAgirl, I am sorry to hear your change in diagnosis. haven't received my final path back yet and am worried myself. It seems like bc is such a rollercoaster ride and we all would like to just be done with it!
I am two days post drain removal and do have the expanders in...first fill is scheduled on May 24th. I had 60 cc placed at time of surgery and they were the tear drop shaped expanders. I have been lucky to be able to be sleeping on my sides. I just hope I don't wake up one morning with an expander under my chin! Lol
Question for your ladies that had a nipple change color. Mine are still looking normal and I am now 8 days post op. If they were to change to black or die for that matter, would they have done so by now? My ps told me that usually they know what is going to happen within the first 48 hours. Just curious...I have lost the nipple anxiety Yahoo!
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