Nipple sparing mastectomy direct to implant with alloderm

MorningGlory27

Nipple sparing mastectomy direct to implant with alloderm

MorningGlory27

I was diagnosed with mucinous carcinoma just before Thanksgiving. I am scheduled to have nipple sparing mastectomy direct to implant reconstruction with Alloderm on January 6th 2015. I am trying to find answers to some of my concerns but I have not found many topics on this type of surgery. I am 43 years old and already have implants for 3 years now. I know everyone's experience and body, healing is different but I would really appreciate if someone would share any experiences/information with me. My plastic surgeon is concerned with Alloderm, he believes the infection rate is higher. Did anyone have complications with Alloderm? I've read some women had to have a second surgery because the sling didn't hold. I am very active, I exercise 2-3 times a week, I'm a hair stylist so I use my arms and muscles a lot. Does anyone have similar jobs or active like me? I'd like to know if I could do weight lifting as before and how soon? I am a size 34D currently and have silicone implants, I am hoping to be the same size. I do have rippling on the bottom of my breasts that are not noticeable standing but when I bend over it shows. I was hoping the Alloderm would help cover that, anyone have these problems? Is there anyone who had previous breast augmentation and had direct to implant reconstruction? I would like to know if the recovery is easier since the muscle is already stretched? I've had two augmentations in the past, the first time one side was infected and both implants had to be removed, the second time I had no complications and I was driving in two days, recovery was much easier than the first time. I do know this is a major surgery and that is not going to happen but I am guessing the pain and tightness may be less. I am having infra-mammary incision because I am hoping not to have to see scars every day for the rest of my life. Dealing with breast cancer is tough enough. However I've read that it increases the chance for my nipple to die. Anyone had that experience? I've read different experiences on nipple sensation, does anyone have sensation back? Do they harden when it's cold? Having implants I am used to the feeling of implants, is there anyone who had implants prior, how is the feel of the overall breast compare to the old ones? Finally how long did it take before you felt completely healed and back to normal assuming there was no complications, have to be positive ;-)

erinm216

Hi Morning,

I had the nipple sparing bi lateral mastectomy with Alloderm and had no problems at all.

My nipples came through just fine but it is totally weird that they do get hard even though I have no sensation at all.

I think this like everything else it's totally dependent upon each circumstance. No two people are going to have the same problems/results.

I had expanders placed at the time of the mastectomy and then 6 months later had the permanent implants placed. I was told that I should wait about 6 weeks before I do any serious exercises. You probably won't need to be told that as it feels really uncomfortable at first.Now I do everything but the pushups- that does not feel good at all!My Dr even suggested I never do them. Really there isn't a reason to build my chest muscles anyhow.

I too can see the ripples when I move a certain way or bend over. I was told that it was common, after all we have no fatty tissue to cover them. Compared to what I have been through that is nothing

MorningGlory27

Erin, Thanks so much for taking the time to write me, I was beginning to think I am the only one on here with this type of reconstruction. I went back for a second consultation with the plastic surgeon as I had more questions and concerns and at the end he ended up going with expanders instead of direct to implant procedure to make sure my nipples don't die. I was really hoping to just have one surgery and have it over with but I do understand to achieve the result I am looking for, it is better to go with the safer method. My surgeon is hoping to use the extra skin from the bottom part of my breasts as a pocket instead of alloderm. My current implants stretched the skin enough to allow him to do that. He said he may need alloderm, but using my own skin would be more optimal as it has blood supply. I am trying to focus on the surgery only and worry about everything else after. I don't know the full pathology report yet but they told me the type of cancer I have, usually feeds off of hormones and most likely I will be on Tamoxifen for 5 years. I read horrible things about it. 2013 was an awful year for you, I can only imagine. I'm sorry. How are you doing with your hormonal therapy? Most women complain about weight gain, no periods, hot flashes, ovarian cysts growing... I'm terrified of chemo, I hope I won't need it.

DiveCat

There are a few women here who have had direct to implant reconstruction; it is however less common than TEs still.

I did not have implants beforehand, but had bilateral nipple sparing MX with immediate implants and Alloderm. The infection rate I have also heard is higher, but I have no infections. Alloderm or not, you need to practice good infection control. There is also something called red breast syndrome that happens sometimes with Alloderm. It is not an infection but can look like one! I did not get that either. I was a 30E before surgery and still am so did not need more space but Alloderm reinforces the pocket and acts like an internal bra. It is pretty commonly used in direct to implant reconstruction for this reason. It softens up over time and your own tissues integrate with it. I don't have rippling where the Alloderm is, but I do elsewhere where my tissues are thin.

My nipples came through just fine. I am surprised you read that incisions at IMF increase risk to nipples as that is the opposite I have ever read. If you start cutting nearer nipple you sever nearby blood supply and increase risk. I don't really have much feeling in the nipples aside from being able to feel pressure but they do response to cold. I do have various sensations and feeling in rest of breasts, but obviously not the same as before.

I was very active before surgery (1.5-2 hours cardio a day like running, plus regularly lifting, scuba diving, kayaking, hiking, yoga, barre) and still am. I just took my time working back up to things. I was not allowed to lift more than 5 lbs for a while, then no more than 10 lbs, then at 6 weeks I was given go ahead to start working back up. I regularly lift and even haul heavy scuba gear around with no issues. I was probably fully back to normal at about 6 months out but that included everything in my rather active life and I had added things back in over the months before that. I really forget most days I even had the surgery. I am going in for a revision next year though so will have to start again in some ways!

Unlike with augmentation, with mastectomy they are cutting and severing nerves, and cutting and stitching muscles in a whole different way. I also don't know if you are having nodes removed but you should be aware that can affect things differently and increases risk for LE and there are recommended precautions.

I was off narcotics in 3 days and walking 4-6 miles a day at the same time, but I could not drive for three weeks...and that was a slow drive just down the block. I only went back to driving longer distances when I felt confident I could react quickly without hurting myself or anyone else. You may be surprised at how "weak" you are initially.There was some pain initially but after that it was more discomfort from swelling and tightness. That resolved fairly quickly too, I don't have any negative feelings or anything now.

Everyone is different though

erinm216

I totally understand where you are at Morning. The uncertainty of everything was the hardest part of the cancer for me. I wanted to know what to expect with everything!

All I can say is try and focus on the moment. Every woman is different.

I remember being upset too that I had to go with the expanders when I had a two friends that got to go direct to implant.

As far as the Estrogen blockers I started out on the Arimidex and it didn't work well for me at all. It caused a lot of joint pain. The good news was that my Oncologist switched me to Aromasin and I am just fine, no complaints at all. Some of my friends had the exact opposite experience.

I haven't gained weight at all. As a matter of fact I have lost weight because I am back at the gym and eating much better.

I was in menopause before I started the Aromasin so I was used to the hot flashes. So really like I said, the unknown is the worst you might have a completely different story

As far as chemo I hope you don't need it either but if you do lots of women will tell you it isn't the worst thing in the world.Matter of fact my friend had chemo and then the surgery and she said the chemo was easier!

Try and hang in there and know you aren't alone. These boards saved me when I thought I was going to lose it ( still do

MorningGlory27

DiveCat, it is so nice to hear that you are able to do all the things you did before, I am a very independent person and never ask for help, I take care of everything myself so the thought of having to ask someone to carry groceries or laundry or just reaching for things will be difficult. This weight limitation will be hard to keep, I think I will forget that I'm not supposed to do things, I just hope I wont hurt myself. I think most docs prefer TE just to be safe. I have explained to him that I don't want to be bigger, just the same size and I did not understand why he would want TE when I'm already stretched both skin and muscle. He comes highly recommended so when he kept telling me he could only do a B cup size with direct to implant but can get me to D with TE as he wants to make sure my nipples wont die, I realized he is right I rather do 2 surgeries than loosing my nipples and deal with further complications and scars. It will just take longer to be over with, I can't wait to put this all behind me. I won't know about my lymph nodes until 2 weeks after my surgery, I am really hoping for the best. Funny, my doc said my nipples wont react to cold but it seems that there is a chance ;-) Not that its important, sometimes I wear a bra purely to avoid headlights showing in a dress lol I hate bras, as soon as I get home I always take them off. Thanks for all the useful info and sharing your experience with me.

Erin, I am the same way, in order for me to deal with thinks I need to know everything otherwise I go crazy. I found out about my cancer 2 days before Thanksgiving, I was very busy at work and had to work long hours, I was preparing to cook for 7 people and did not have time to research anything, I was crying on and off thinking this was the end. Black Friday I spent hours looking at pictures of women, one picture was worse than the other, very depressing. I read a lot about my cancer and ever though my rare type supposed to be the better kind I was still scared and emotional. I kept searching and searching and thought there has to be a better solution than having scars all across my breasts or missing chunks with lumpectomy, finally I saw a picture with no visible scars or indentations. That is how I found out about nipple sparing mastectomy. That was the first day I didn't cry, I saw hope for being able to look and feel good about myself and not have to look at a scar constantly, reminding me of this mess. I am still scared to death about chemo and loosing my hair, being sick. What if I have cancer elsewhere... these are things I can't control and can't get answers to on the internet so I am trying not to think about them too much. Today I got the final pathology report and I am 100% ER + and 85% PR + HER2- I wonder how they decide what hormone to prescribe, they already told me I'll be on Tamoxifen. Ugh not looking forward to getting into menopause at 43. I'm glad I found this site, it's nice to talk to people who truly understand what I'm going through.

TammieInTexas

Geesh, no driving for 3 + weeks? Good heavens! I'm not sure what I'm going to do. I'm a 52 yr old single parent caring for my niece's 13 yr old. The only family member who can help me is my mom and she is 80 and only drives in her small town. I was diagnosed with stage 1a IDC 2 weeks ago by my primary physician and just met my oncologist yesterday and will see the surgeon on Monday. I hate being dependent!!! I'm going to have to figure this out somehow. One of the things I'm wondering about is what percentage of lumpectomies end up being masectomies? I've read several stories of women who tried to do the lumpectomy only to have to go back and do a 2nd or even 3rd surgery because they didn't get it all. In the end, looking back, they said they wish they'd just had the masectomy done the first time.

SpecialK

morning - your pathology is the most common type in breast cancer, and I would recommend that you request an Oncotype Dx test to determine whether chemo would be of benefit for you.  The test determines your benefit is adding chemotherapy to hormonal therapy, and assumes that you will be on hormonal therapy.  Here is a link:

http://www.breastcancer.org/symptoms/testing/types/oncotype_dx

Tamoxifen does not cause menopause, in fact it is given to premenopausal women to allow estrogen to continue to circulate and offer the protective benefits to heart and bones it does if you are younger.  Tamoxifen works by blocking the estrogen receptor in the breast cells, it does not suppress estrogen like the aromatase inhibitor drugs given to postmenopausal women.  Also, keep in mind that those who take Tamoxifen and have no issues probably don't post, you will always hear more about those who have side effects but it is difficult to know if they represent the majority or minority of people taking the drug.

tammie - about 20-25% of lumpectomies need a re-excision to obtain clear margins - some of those who need more surgery opt for another lumpectomy, some opt for mastectomy.  Since you are Her2+ you might ask your oncologist about doing chemo prior to surgery - there is a drug regimen TCHP (Taxotere/Carboplatin/Herceptin/Perjeta) that is available for early stage Her2+ patients and it is given prior to surgery.  It could shrink your mass and make clear margins easier to obtain in a lumpectomy after 6 rounds.

 

MorningGlory27

SpecialK, Thanks so much for the info, I had no idea that test even existed. I will definitely request it. I am having double mastectomy though, I guess the test would also show if cancer is more likely to come back in other areas? See, that is what concerns me, no one has checked for cancer elsewhere. They all assume that because my cancer is in an early stage and not the spreading kind I will be ok. I've read ovarian cancer has no or little symptoms and most of the time it's found in later stages due to it. How do we know this is the only cancer I have? I actually don't have any appointments until my pre op the day before my surgery and figured once I am through with it, I'll request a full check up for cancer everywhere else. You are right, I found a thread about Tamoxifen side effects and multiple women said they had started menopause, hot flashes etc... scared the crap out of me but you are right, only people who has problems will comment. I guess I'll just have to hope for the best just like with everything else :-)

SpecialK

morning - chemo is not really for treating cancer in the breast - it is systemic treatment and is predominantly used to mop up any cells that have escaped the breast.  Your mass is pretty small and it is not all that common to check for cancer elsewhere as it must be large enough to see - scans do not detect cancer below a certain size, and definitely not individual cells.  Also, you may want to update your signature line - if you have pure DCIS it is always stage 0 and would never require chemo, if you have an invasive component, I assume the mucinous, that is stage 1 your sig line should read the cancer type - IDC, ILC, IBC, etc., I think you can free text mucinous if you have pure mucinous and not IDC with mucinous, if it is not a choice with a radio button. So many people read here that I wouldn't want someone with pure DCIS to be afraid they needed chemo. Your lymph node status will prompt whether or not your oncologist feels the need to look beyond the breast with scans also. 

Btw - I did not have augmentation prior to diagnosis, but did have skin and nipple sparing bi-lat mastectomy with tissue expanders.  Both nipples survived and even though I had thin skin I don't have serious issues with rippling.  I do have a bony chest and had fat grafting done to add some softness to the upper pole above the implant - that went very well and only required one graft.  Don't let all the surgery in my sig line scare you - it is specific to a healing issue, but there are no choices to outline that in the profile.

Keep in mind that Tamoxifen - the only choice for premenopausal women - has been around and used for many years.  While there are some who can't tolerate it, there are many, many women who have taken it successfully and without major side effects.  It is the longest used hormonal therapy for breast cancer and has been studied extensively.  There are some premenopausal women who choose to suppress their ovarian function with injections and take an aromatase inhibitor, but that would cause more menopausal symptoms since it does suppress estrogen rather than block the receptors.  I would try the Tamoxifen first and see how you do - hopefully just fine!

erinm216

"I spent hours looking at pictures of women, one picture was worse than the other, very depressing."

Because of this very thing I posed topless for a book my plastic surgeon is publishing. It is pictures and stories of all different women and their cancer stories. My Dr wanted a book out there that shows a non clinical side of breast surgery. I would've really appreciated the book ahead of the surgery. They're are scary looking photos out there.

I hope you have the outcome you wish for but most of all it's impoartant to be cancer free!

MorningGlory27

SpecialK, I don't know how to add the mucinous carcinoma to the diagnosis. It does not let me write anything in, I have a few cancer choices or none of the above. My path report says: well differentiated ductal carcinoma with mucinous differentiation (colloid carcinoma). Minor component of ductal carcinoma in-situ, low grade, without necrosis also noted. I am glad to hear you didn't need all those reconstructions, I am skinny and don't have enough fat for fat grafting according to my plastic surgeon so we'll see how the outcome will be. I figured I'd start the Tamoxifen and see how I feel, the amount of women having issues with it is scary though. Ovarian cysts growing is the worst one. I have a good friend who had an ovarian cyst and the Dr said to her, it's benign but when it was finally removed they told her it was cancer. Not fun ;-(

Funclassygal

MorningGlor, trust me - I was so scared to take Tamoxifen - I put it off for two weeks - excuse after excuse! I finally just put it in my mouth and swallowed it - like the baby I am just waited for something to happen. I was on it for almost 3 weeks and nothing. Someone told me to think of it as "Your Friend" - it is something that will help you and yes it has been around for many years. I talked to women on it for many years and they are doing great! the only reason I stopped it is because my surgery is coming up and I had to stop 2 weeks before. Hope this helps! VeraAnn

SpecialK

morning - I am also frustrated with the selections on the profile. If you look at divecat's post above she has a line of free text right after the last line of the post, but above the surgery info - that is the place to add the particulars, just not sure how you do it!  On Tamoxifen, remember that people post when they have problems, those having no issues are not posting, so it may seem that an inordinate number of people struggle with it.  Keep in mind that ovarian cysts are extremely common for all women, not just those on Tamoxifen.  Your docs should be monitoring you periodically and it is good to get a baseline pelvic ultrasound so you know the status of ovaries and uterine lining thickness prior to starting the drug.

Funclassygal

MorningGlor, just like you - very independent - the worst is asking for help. I can not imagine being immobile - scares the heck out of me. I or any one that knows me would never believe this happened to me. I thought I did it all right - good diet, exercise, non-smoker - do not eat any meat, wine was my only vice and this they say is good for you. Go figure! To think I was going to have to take chemo was my worst nightmare. I cried that very first day - did not want to put that in my body. But, I went through 16 rounds - 12 being weekly and I did it. Actually I sailed through it and am very grateful for this. I hope you don't have to take it but if you do - it's not the horror stories we heard from years ago. You can do it!

MorningGlory27

SpecialK, I found it :-) Go to profile, settings and the last option "signature" allows you to write a few lines. No one told me about monitoring me, when I asked if they will do additional tests, I was told unless I have symptoms they don't check. Well, I will create symptoms as soon as I'm well enough because I want to know for sure I am cancer free everywhere. I'll start on the Tamoxifen but if it gives me bad side effects I'll stop taking it. No way I can deal with it for 5 years. I read somewhere that there is another newer one with less side effects, I'll ask if that is an option for me.

VeraAnn, I don't see your diagnosis, how come you had chemo and hormone therapy prior to surgery? Just like you, I have always ate right ( I do eat meat mainly chicken and sea food), exercise, non-smoker, drink a glass of wine with dinner a few times a week. I was shocked to find out I have cancer, I was in denial at first, thinking the biopsy was mixed up with someone else's, it can't be right, I'm too young etc.. Now I just want to get it over with. I am scared but this waiting period is frustrating and even though I know I will be in pain, I can't wait to have the surgery so I could focus on getting better and of course to know if I need chemo. That's the big one and knowing if my nipples had survived. I only took 2 weeks off and plan to go back to work for 4 hours a day the 3d week. Since I have implants my muscles are stretched so unless I have complications, I don't expect to be in as much pain as women without prior augmentation. Did you have hair loss with chemo?

Funclassygal

Hi MorningGlor, I had chemo first to shrink the tumor - it was around 6cm. Again, this just popped out over night out of no where. I had a breast exam actually last December with no issues and then in February - there it was. I took the Tamoxifen for 3 weeks because due to having to change my insurance for the surgeon I wanted - I had to wait a little longer than usual for the surgery. Oncologist felt better having me do something in between so I took the Tamoxifen. You had to see me trying to swallow that first pill - I did not want to take it. I actually waited 2 more weeks than when they told me to take it because I was scared of the pill. But, then I thought I may be doing myself a dis-service and took it. Trust me, I also was in a denial mode - no way could this be. I did it all right. But, I now hear - it doesn't matter. No one in my family ever had this. My tumor was 99% estrogen. ER+/PR+, HER2-

Unfortunately MorningGlor, yes - I lost my hair. My hair was my signature per say! It was down to my waist - all highlighted - I took great care of it and always got non-stop compliments on it. This was very hard for me! To be honest, I tell people that the day I sat in the chair and they put my hair in pony tails only to cut each one off - was harder than the chemo. I just cried in that chair! Emotionally this is tough because you don't have a choice and it is taken from you. Of course every one will tell you it's only hair and it will grow back but it is your hair. I hate the wigs and the hats - they drive me nuts. I actually had my own hair made in to a halo and this is what I wear a lot with a cap. It's my hair and there is a comfort level there that just makes me feel better.

MorningGlory27

I don't have family history either so I agree, it doesn't matter. One thing everyone agrees is that it has to do with our immune system being low for one reason or another. 2 years ago I went through a very tough time, probably the most stressful and lowest point of my life. That for sure lowered my immune system for almost a year, I couldn't even eat much and lost a lot of weight. Last year was better and just when I thought the worst was over, I get BC. I am trying very hard to not let it get to me, I keep myself very busy so I wouldn't have time to feel sorry for myself, and worry people around me. My fear is chemo, I can handle feeling sick but to loose my hair??? I cried just reading your post. Not only am I a hair stylist but I also have long hair that grows very slowly, for me to be back to "normal" will take years :-( I don't know if I'm ready for that emotionally. My surgery is another 5 days, after that I should know if I have lymph node involvement and another 2 weeks before I know about chemo. I so want to push time right now. I'm glad the holidays are over, Christmas wasn't really merry and the new year isn't happy...

Coblndie

I am having this exact same surgery March 4th. I would love to hear how you are doing at about a week out from your surgery.

MorningGlory27

They actually changed my surgery plan from direct to implant to expanders since I started this thread. I don't know how much difference does that make in recovery. If you click on my name under my picture, you'll see on the bottom of the page all the topics I've recently commented on. Click on the one that says 2015 surgery sisters, I wrote a detailed post about my surgery and how I felt after. One week post up I feel more tightness than pain, I had minor complications such as redness on the bottom half of both of my breasts where the alloderm was placed. My PS thinks its not infection, it might be a reaction to Alloderm, time will tell. I have ischemia on the lower part of my nipple and skin on one side, again we'll wait and see how that will do. Other than that I feel good. I am off the narcotics during the day but I am a very light sleeper, always have been and I only sleep in one position on my side so this laying on my back elevated with pillows prevents me from being able to sleep so I do take percoset every night only because it puts me out for the night ;-) During the day I am taking Tylenol, when I feel the pain about every 6-7 hours. I can do more now than before, I cooked last night, I just needed help with lifting pots and cleaning up. I can dress myself (only button down tops though) I wash, blowdry my own hair, the only time I need help is when I need to reach for something high up. I actually got a step up stool in my closet so I can get to my clothes on the upper shelf. I stay up mostly during the day, walking around the house, organizing drawers, closet, pantry lol just to keep myself going nuts from boredom and because its good to be up and use your arms so the muscles wouldn't get stiff. Just don't lift anything heavier than a few pounds. I got flowers delivered the other day, the lady just handed it to me and I almost dropped it. They sent me orchids and it was sitting in a heavy porcelain base that I didn't see from the box. Needless to say my muscles in my chest spasmed and was in pain but luckily Valium and Tylenol took care of it. Good luck on your surgery :-)

SpecialK

morning - I read one of your posts on another thread regarding your surgery and how the Valium helped.  I would recommend that when you get fills you also use it if you are seeming prone to spasms - it should help.  Other muscle relaxers are Flexiril, Soma, and skelaxin, but Valium seems to be the best for fills.  Is your necrotic area(s) improving?

MorningGlory27

Thanks SpecialK, I will definitely ask for Valium again. No changes in the appearance of my ischemia. I posted a photo on the other thread, did you see it? It looks like it since day two, the only change is that the blister popped.

barbara510

Hi. I just saw your post and see that you had your surgery about a week ago. Hope everything went ok. It's a tough few weeks right after the surgery. I had nipple sparing straight to implant using Alloderm surgery about 4 years ago. Didn't have any infections or major complications. My recommendation to you at this point is to think about having some physical therapy down the road. Maybe yor doctor already recommended it. I didn't have it and wish I did. Was never suggested to me by my doctor. It will help prevent scar tissues which is a issue I am dealing with now. I will probably have to have surgery to remove it if it gets too painful. Reading through these threads it seems that a lot of women who had PT don't have that problem as much and find their implants comfortable over the years. Hope your surgery went well and that you are having a quick recovery.

Take care.

MorningGlory27

Hi Barbara, thank you for your advice, I think they mentioned they will offer me physical therapy later on once my complications subside. I had a follow up apm today and it seems that on one side my skin doesn't adhere to the alloderm. They want to wait a few weeks to see if that improves. Ugh, waiting for all this healing seems to take forever. I am stuck with one drain, I am going back to work next week and I am trying to come up with solutions to hide them the best way I can.

farmerjo

Hi all...I had NS BMX three weeks ago. Although I have no necrotic areas, I have what reminds me of mouth ulcers. It starts as a red raw area, turns yellow,  then brown... eventually sloughs off and cycle starts again. 

Anyone have feedback? 

exbrnxgrl

Jilly,

I am sorry that you are having problems. The only feedback that I or anyone else can reasonably give is to see your doctor ASAP. Also, the moderators strongly advise members not to post photos of their breasts, so you might want to consider removing the pic. Wishing you the best.

farmerjo

Bump.