Nipple Sparing Mastectomy with immediate reconstruction
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Speech, I also forgot to add that I see a dimple in the area that I believe the node was taken from in the area under my armpit and it probably gave me the most discomfort actually relating to the entire procedure!
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Hi Everyone,
I am new to this but figured I would reach out to others dealing with similar issues through this confusing time.
I was diagnosed with stage 2 DCIS + invasive carcinoma on September 10th. I had a nipple sparring unilateral mastectomy (with ruffly 12 nodes removed) and immediate reconstruction with a tissue expander implant last Friday October, 15th. I am feeling so much tightness in my chest from the tissue expander and drain. The drain has also been leaking a lot recently. I have checked my cord and nothing seems to be blocking it. I rarely speak to my plastic surgeon, instead I am in close touch with his nurse. She says the leaking is normal, but I feel it's increasing. My upper arm feels so swollen and sore. Do any of you have any recommendations on stopping the dripping? Or a specific stretch that helped you alleviate some of the tension?
I also was curious to connect with any of you that have had a unilateral mastectomy with reconstruction. I am having some difficulty dealing with what the outcome and the symmetry will be after this process is complete. My plastic surgeon is recommending that I consider a small implant with possible lift to get the symmetry I am hoping for. I don't want the scars from the lift and if I do just an implant to get the fullness that I am lacking on top I will have to go up in size which I don't particularly what to do. I am regretting at this point not doing both. I tried to make the best decision for me and now I am so worried about them not matching that it's driving me madd.
I am 28 and have always been pretty small but comfortable with the way mine were. I can't just forget about the way they were when one is still there and my doctor is now trying to match what I was naturally given. I can't help but worry about the way they will look. I know I can always get a mastectomy on the other side down the road but I am so confused on what to do now. I want to avoid as much surgery as possible and be as healthy as possible. I know if I'm not happy with my body I will not be happy with myself and it will affect my mind in return.
My nipple has also turned to a scab, and seems to be lying flatter to my skin. I am worried I will loose it. I have read that many of you experienced the scabbing, and it seems all I can do is wait it out? Should I aviod lotion on the area or apply vitamin E? My doctor didn't recommend me do anything.
There are so many decisions that have to be made through this process, and only you can make those choices for yourself.. I am so overwhelmed and trying to take it step by step, but it is very hard no to want to plan ahead.
Thanks for reading : )
All advice is welcome...
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ladygray: The tightness is completely normal. I had bilateral, so mine is everywhere, but it is much better now. I had my surgery 10/7. I don't know about the drainage. Mine were taken out 4 days after surgery. I would just recommend stripping the drain, as I'm sure you have been, and otherwise just changing the pad often but make sure you don't introduce any bacteria... be very careful to use sterile everything... hands, 2x2's, maybe even consider using gloves. If it's oozing anything that looks like infection, call your doc immediately. You'll need to ask the doc about cream or vit E. Again, you want to make sure you've waited for the incision to heal appropriately and don't want to introduce anything that will cause infection. I'm not using anything yet and don't feel it's safe. (I'm a nurse aide) As for symmetry... my understanding is that with unilateral you often may need a little something done to the other side. That expander is up higher than your normal breast and yes it's going to look different as they expand it. It may be a bit larger than the other side before exchange, so you may need to fill a bra slightly to get symmetry before then. However, plastic surgery has excellent results in most cases. You can't judge anything right now. There is a picture forum here and I highly recommend you to contact Timtam to get permission to join it. It will be fabulous for you to see the actual process of unilateral mx's who have gone thru this process... and it will give you such peace of mind. Do a search for Timtam and if you can't find her profile to send her a private message, send me a pm and I'll send you a link to her profile. As for planning ahead, your PS is the best person to ask on those things. This is what he does for a living and he should be very good at what he does which is probably why he's recommended you consider a small implant/lift. I think the picture forum will help you immensely.0
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lady grey...Hi..I am a uni..i feel your pain.
First off sounds like your drain is not draining if the fluid is backing up into your arm. Your body will absorb it but it takes a while. contact your PS
Your nipple will be fine. It is totally normal for the skin to turn black and scab over and soon it will fall off leaving the most beautiful pearly pink nipple you have ever seen. It will be flatter..and different..but it will be pink and pretty
your final outcome is up to you. I went larger on my native side. I was a A cup pre MX. I spent the whole summer rocking out a tiny boob and a large D size TE. I had to use two shapers on my native side to get symmetry. My PS placed two different sized implants to make them look the same. I think they are fabulous. I am sure you will be able to place a small high profile implant in your native breast and be happy. It wont be much larger..and your MX breast will ultimately look wider than your native breast when your reconstruction is done.
Take a deep breath..I'm here for you to vent...we all are..this place will help you along the way
good luck
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Twirl: I just looked at your photos (I'm a uni,too) They look great, I'm so glad you are happy. Could you explain why you needed a new TE? I just had my first fill and I'm at 250 cc now. I am thinking of going larger then my barely B natural side, but the Dr. said we will have to wait and see how I feel as the fills progress.
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cc4npg: thanks for the photo forum recommendation, sounds like a good idea. I will look for it now.
I left my ps a message and hopefully I hear back soon. The pain in my arm is increasing and I noticed the port hole is a bit red. I hope it's not infected. I have an apt. scheduled on Tuesday to remove the drain and get my first injection post surgery so hopefully I can hold off until then with the issues I'm having.
twirlandcurl: thanks for your support. Once you finished your final surgery on both breasts do they now look symmetrical out of a bra? that is my main concern. What is the difference in the feel on each side? I am a 32B on my native side and it has more of a tear drop shape so I know I will need to do something to it to match the fullness the mx side will have, especially on the top.
It's so hard to know if the pain I am feeling is normal in my arm. It almost feels a bit numb in the upper/ tricep area. I really hope I don't have an infection or lymphedema. I just finished my antibiotics and they say its to soon for infection, however the redness, leakage, and pain are worry-some.
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hey twirlandcurl where can I view your pics?0
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I would recommend trying to elevate that arm and seeing if that helps the swelling at all. Yes, I hope he calls you soon. Sounds like he may have to aspirate some of that fluid. Let us know what happens with it.
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Hebie-I had my TE replaced because my ps had trouble putting one in my chest to begin with. I am very small. My 12 yr old daughter is about the same size as me. I wanted to go bigger. Why not. I didn't like that my fist TE looked like a pool ball sticking off my chest. My PS recommended a wider-tear dropped shaped TE with a larger capacity..he said he thought it would match a large augmentation on my native side better. I have 400cc in natural boob. That's alot.
ladygrey- they look good..my augmented side is poking out and shifting a bit..where the mx side is not..my native side is larger than the mx side..but only by a bit.. My native side feels the same..only a small amount of breast tissue in the front and top pole. Get High profile implants and that part will fill out nicely.
I really think your arm issue is from drain not draining...try and strip that thing..do you have any fluid in the ball???????
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ladygrey It's so hard at this time in the process. So sorry you are having difficulties. To reassure you: the black nipple is normal. I kept a sterile pad on mine and changed it 2x a day. I only had to do it for 3 days. I had some redness around the hole where the drain tube entered my body. It's just a little irritation.
If it were me, I would keep bugging the PS to see you for your own peace of mind.
I am a uni, also. I had immediate reconstruction with alloderm and an implant. I was barely an A prior to all this so I opted to go larger. The PS are great at matching. I can't believe how well my PS did it! My pictures are on TimTam's site (speech529). If you private message her, she will give you permission to go there.
Good luck, my dear!
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Hi, just catching up! This thread sometimes moves so fast it's hard to do so.
cc4npg - Hi and congrats on sharing such a positive experience. So glad you still kept both nipples. Interesting tidbit there about how your doctor is coming around to forming his opinion that NSM is as safe as lumpectomies. What I am learning as well is that how doctors and pathologists view BC is changing radically. In the near future, there will be certain forms of cancer that they won't even be called cancer anymore due to what they are finding out about earlier treatment and incredibly good rates of cure. There is a move away from blanket treatment. NSM, I believe is a testament to the advances in modern medicine. (Knocks wood!)
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Just back from a weekend with my DH in Santa Barbara and have 2 pages to catch up on! I take this as a good sign that more and more women are having NSM! Woo hoo!!!!
OK, first things first-
ladygrey- Call your PS and insist on being seen immediately! It may be nothing but it may be an infection and that is why your drain isn't draining correctly. An infection, if left untreated, may result in having to have your TE replaced which no one wants. They may need to get you on antibiotics. Don't take no for an answer and if it gets worse go to the emergency room if you have to.
As far as the chest tightness with your TE do you know how many cc's of saline they put in when they placed the TE? It could be they put in too much to start with. As your TE's are filled they are gradually stretching your pectoral muscle that has been repositioned more on top of your breast. The slower you go with this process the less discomfort you will feel. Many women find that taking a muscle relaxant during the TE process helps a lot with the pain. I took Flexeril (prescribed by my PS) and it helped so much. Warm showers and very gentle stretching help, too.
mom38yo- Sorry about the dreaded black nipple scare. We've almost all been there.
OK, EVERYONE ON HERE GO BACK TO YOUR BS'S AND PS'S AND TELL THEM THE #1 THING THAT FREAKS PATIENTS OUT IS SEEING THEIR NIPPLES TURN BLACK. TELL THEM TO WARN THEIR PATIENTS THIS MIGHT HAPPEN AND THAT IT IS PERFECTLY NORMAL!!! WTH? DO WE HAVE TO TELL THESE DOCTORS EVERYTHING? (APPARENTLY WE DO....)
OK, I'm off my soap box now....
SusansGarden- I was DX in December and didn't have my NSM until March because that's when my BS was available so some women do wait several months before surgery. It just depends on whether or not their BC is highly invasive or not.
sweetie- You commented on why some PS's tell you to massage and some don't. Mine said not to but it was because she used more Alloderm during exchange. She said it can take up to a year for the Alloderm to fully integrate with your own tissue. Massaging sometimes causes it to absorb unevenly so that is one reason some may say not to.
My 6 month follow up with my PS and BS's PA were pretty uneventful. (So not worth the 4 hour round trip drive.) The PA just basically gave me a breast exam and sent me on my way. She said they don't order any kind of MRI or any other test for follow up. What has everyone else's experience been who is 6 months out?
I've been having a lot of pain with my implants. My PS said she has heard of this happening in patients who have fibromyalgia like I do. She said she doesn't know why this happens, just that it does. She said it could be permanent but that there was just no way of knowing. I'm considering having a revision to a smaller implant to see if it helps but the PS thought I should give my body a rest for at least 6 months since I've had 4 surgeries in the past 9 months. So I guess I just live with everything for now and see what happens. In the meantime, internet research here I come.......
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Kate33, trying to figure out here what the follow up will be. BS wants follow up with mammogram because of there being some breast tissue and skin left and oncologist says no mammogram. Next appt with onc in one month at my year visit. What does you pain feel like. I have some pain as well but mine is from the adjunctive tx. giving me aches and pains in all joints but also have nerve pain in the breast area and a pulling feeling. Thinking about accupuncture. Are you on any meds now being you are ER+?
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Twirlandcurl:
I do have fluid in my ball. I spoke to my PS and his nurse. I think the arm pain is because I have not been stretching it as much latley cause the drain drips more when I do. My nurse said to massage it. I see them tomorrow & also get my pathology back on the tumor, so scared but excited to meet with my BS.
What is the difference with high profile implants? I am a B on my native side so I'm worried they will feel way different, who knows...
He put 200ccs in right after surgery. I also work out everyday almost so maybe my pecs were just really tight and not expanding as easy as some. The numb arm is drining me nuts. Guess I just gotta wait. Hope I get this drain out tomorrow!!
Speech529:
Thank you... Did you wait to put the pad on your nipple till it fell off or right away? Did the pad help it to fall off?
I am going to send TimTam's a PS now. Sounds like the place to c all the anwsers to my questions.
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PB22, I had 2 oncologists and my bs tell me I would never again need a mam....weird
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lady grey
the high profile implants give you much upper pole fullness..gives you the projuection your looking for to match your TE. yes you two breasts will feel different because on will still have breast tissue and one will not. Mine look pretty much the same. Check out the exchange city thread and there are links to the implant sizing charts and types.
How's that piece of crap drain doing
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Ladygrey-I have a pic of my nipple with the black scab on it. I can post it on the pic forum it that helps. I was thinking of doing strickly a pic post from start to finish so you can really see what the process of a NSM to implant.
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sweetie2040: Regarding the picture forum... I know it would be helpful to many people to post whatever detailed pictures you might have. I've posted some of mine, and will get a first fill Monday. There are a lot of pics there, but I for one searched for all the NSM's and found not near as many as I'd hoped for. My nipples didn't turn black, but I was prepared if they had. I'm anxious for my first fill... the TE's look like they're placed just a bit different, one higher than the other, but I've been told they're folded when put in so maybe I just don't have a clear picture yet.0
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cc4npg-ok I am working on getting all my pics together from start to finish and trying to include all the nitty gritty pics that I hadn't before. I'll get it up as soon as I can.
One of my TE actually turned in the pocket and was upside down. The Dr later manually turned it back and I think that pocket ended up being looser. Not to worry though at the exchange they will even everything out and make sure the pockets are tight.
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Ladies, I appreciate all the good info here. I am 5 years post lumpectomy/chemo/rads. My new onc wants me to have a BMX due to being BRCA2+. I'm still in the research stage so the more info I collect the better. I was a full C cup in my youth and am now a saggy C cup! lol. I don't want to go bigger so I'm not sure if the one step will work for me or not. Any surgeon recommendations in the Chicago area would be welcome.
Janis
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Sweetie2040 ~ I think that would be awesome to post pics from start to finish! Like you did , I am TRYING to find detailed pics of the NSM so I can be prepared and know more what to expect. (My surgery is scheduled Nov 30th.) I want to see what it looks like from day one...before/after fills...right after exchange surgery, etc.
On that note, I plan on documenting my journey from day one so that perhaps I can help inform and inspire others down the road like you.
~ Susan
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Janis: I'm not in Chicago... closer to Dayton, Ohio. I don't know how far Cleveland Clinic would be for you, but it's about the only thing I know up north. Regarding BRCA2... I'm also positive and just had a bilat NSM. I'm 43 and it was strongly recommended I have an ooph too. I have had a fairly easy recovery from bmx so far... still have to do chemo.
Susan: There are some NSM on the pic forum, and I posted the few I have so far. I'm going to take another picture in a few minutes now that my steri strips are off. Everything is looking really good here! It's an amazing process.
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PB22- Like hurleygirly, my BS said after NSM no mammos ever again which was a definite bonus for me. I was so small I swear they would try to jam one of my ribs in the machine just so they would have something to scan. Every mammo hurt like a b****! As far as my implant pain- kind of aches all over and feels like their kind of getting squeezed, too. I did read that if your PS makes the pocket too small this can happen but it usually develops into capsular contraction and mine aren't getting hard. I do think it is linked to the fibro somehow. I did get a script from my BS for PT. Am hoping that may help. As far as meds for ER+ my BS said the benefit from Tamoxifen was small and didn't recommend it. This is another area that not all BS's seem to be in agreement on!
ladygrey- 200 cc's is actually a lot to put in right after surgery. I think the average is 100 cc's especially if you are small breasted. Am sure that's where all your discomfort is coming from. When you start your fills in the PS's office have them start out small at first to see how you do. As they're filling you will start to feel some pressure. This really is the best time to stop as you won't feel the full discomfort for a few hours afterwards. Also, did they send you home with a sheet of arm exercises to do after MX? They really help with the draining.
sweetie- I love your pic! So cute!!!!
JayBird- There's a link to another thread at top where women are posting where they had their NSM's. Check there to see if anyone has a recommendation for Chicago. Good luck!
SusansGarden- I think it's great you're going to document from start to finish. I wish I had done that. I didn't find this site until after my MX. You will be helping so many other women!
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Jaybird-the link that takes you to the thread "Where are the Skin Sparing/Nipple Sparing Procedures Being Done" is hyperlinked in TRNLady's Intro up top in the blue box. Good luck!
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Hi ladies, had my NSM yesterday. Still at the hospital but doing ok. 0
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monikaV all the best to you in your recovery!
I have some early photos of my breasts post-op. When I get a chance this weekend, I will post some sequential photos. Seems like so many of our experiences are so different depending on the docs...I just appreciate the input and support I get here!
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Glad to hear you're doing well! Take it slow and keep the drugs comin'.
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Monika,
Congratulations on having it completed. Hoping you have a smooth recovery full of restful days. Where did you have it done?
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Monika,
Glad to hear you are doing okay!
.... Mine is sched Nov 30th and the waiting is SO hard. Have you "taken a look yet"? Did you do TE's? Are the drains as bad as they sound? Are you able to be up and walk around? How much arm movement do you have? So many questions! Hope you have a speedy recovery!!!!0 -
Susan. Yes i have arm movemennt , and yes i have the TE's . I looked at it yesterday. And the nipple color looks good. Both surgeons are optimistic
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