Nipple Sparing Mastectomy with immediate reconstruction
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I am a hairdresser and went back to work after 11 days. I only worked three hours. I also had no nodes removed. I felt pretty good, but needing to use my arm all day wore me out. I really don't know about 4-5 days unless it's a desk job with little or no exertion. I was just more tired than unable to preform my job. It's been 6 weeks for me now. I still don't have loads of energy to do anything.
My black scab took about three weeks to come off. I just got my first fill yesterday. Started at 120cc..got 80 more. My TE is a 320cc. I have an appointment for the 10th for another pump up.
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DONT WORRY ABOUT THE BLACK NIPPLE! Mine were black too, one took 8 full weeks to finally fall off, but both are pretty pink now
....oh and I agree: dont pick at it.As far as back to work after BMX: yikes I must be a baby: I was 6 weeks!!!! Personally I found I really needed the time to recover, but I started weekly fills beginning 1 week after BMX so maybe that took some energy out of me. I do think that this is a big thing and you do it once and you should take care of yourself and give yourself all the time you need to recover....
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I wouldn't recommend 11 days...at the time My DH was laid-off. We are paying out the yah-yah for COBRA coverage. I am self-employed and have O paid vacation, sick leave or anything else. I really felt as if I had no choice but to return as soon as possible. I would say I went back too soon. I am only allowed to work 5 hrs a day..no more than 20 a week or my PS is gonna yell at me. I find at this point, working and caring for my girls is about all I can do right now..and people are just going to have to get over it
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Here is PB's thread for where Nipple Sparing Surgeries are offered:
http://community.breastcancer.org/forum/44/topic/750056?page=1#idx_29
fairport, you are not the only baby! LOL I took almost six weeks off, but I had plenty of sick days built up and backed it up to Christmas Break.. How did your appointment go today?
I think time off depends on the job. But I can tell you, I felt like I could have taken another week off, or maybe worked part time for a week or so. I think 6 weeks is a turning point after a BMX. My energy level seemed to increase after that point.
I can't answer the fill question because I did not have TE's. I think it depends on the doctor.
twirland, I like your attitude!
Sweetie, my nipple was black for several weeks. Don't pick it even though it IS tempting!
Well, the weekend is almost here, and all I can say is THANK GOODNESS!
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Hello there Nipple-spared Friends! and those that will be!!
You know, I thought all mastectomies removed the nipple until I saw my BS and she mentioned that I was a good candidate for it because my bc was in lower outer quadrant of right breast. I was so relieved I cried! Of course, it's a little stretched, due to the tissue expander and saline fills, and a little faded in one area. I didn't bother mine while it healed, but when the scab came off it was faded. PS says she can fix it, but in a strange way, when I look at it I am reminded of all I have been through and I may just let it stay the way it is. Battle scar, I guess you might say....
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Magob: I work at a desk and I just wasn't even UP to going to work until my drains came out. My PS would not let me shower with them in (some do) and maybe I would have felt differently if I had been able to take a shower. We all know you feel better when you can take a shower.
I was off work almost 2 full weeks. I feel like I went back too soon because I am so tired and some days can barely get through the day and need a nap. And no....I'm NOT 80 years old! Not even 50 yet!Sweetie: My first fill about 2 weeks after mx....after my drains were out from what we can both remember.....too many appointments to keep them straight in my head.
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Thanks for the good info, ladies. I will share this with my sis. Hopefully, she'll jump online soon to read more about all of you.
Take good care of yourselves. XO, Mary
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Kate, I think it is so wonderful that you are going to mentor and share with others, YOU GO GIRL!
Mary, Tell your sister we would love to have her join us!
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Surgery went very smoothly, was very impressed with the doctors, nurses, and the entire surgical team. However, I saw my chest for the first time yesterday, thought I was handling it okay. My daughter, my sister & I went to lunch and had pedicures afterwards. It was a good afternoon.
My daughter helped me with my dressings again last night, and I just lost it....I couldn't stop crying. I am glad the surgical part is over, I'm relieved to have the cancer out of my body, and I'm happy to be alive. Why can't I stop crying!!! I slept in my bed last night for the first time, rather than the recliner. I had a great night sleep...so many mixed emotions....I feel good, but I feel funky at the same time.
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janny99-
The first time you see your chest post MX it is definitely traumatic. I felt like I was looking at some alien creature. I wouldn't even let my DH see me. I felt so broken. But I have tissue expanders and every fill makes me feel a little more like myself. My skin and nipples are nice and healthy and I know that this will soon be over.
So glad your surgery went well and that you have your daughter to help and support you. That is wonderful! Are you doing any kind of reconstruction after surgery? Hope your recovery is going well.
TNLady- Thanks! Really hope the mentoring program gets up and running. In the meantime I'm trying to get on as many BC support sites as possible to spread the word about NSM. I can't believe how many times I have heard women say their doctor never even told them about this procedure. It ticks me off!!! I am so glad you started this thread. Instead of "Save the Whales" we should start a campaign "Save the Nipples"!!!
Kate
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Janny 99: I so get what you are saying. I have had several crying days, some kind of random and unexpected, others predictable: like first look after surgery. I totally understand, and I think it is NORMAL! Its a big thing to go through. Also I do think there's something kind of emotional about getting help from your daughter: I had a similar thing happen, she was helping me and it got kind of overwhelming: like woah: my child is helping me instead of the other way around. Aren't we lucky to have such good girls?
Psalm121: love the battle scar comment! I have a little fading in one nipple too: I get it and i can relate! Also: so great your PS mentioned nipple sparing! It is frustrating to hear how so many women seem to have to fight for getting it!!! (Right, sweetie?!)
TNlady: my appointment went ok, thanks for asking. He drained the lump (AGAIN) and agreed with my theory that it is an accumulation of old blood from my exchange, but is worried about infection so prescribed a new antibiotic to take for ANOTHER 10 days. So that was yesterday that he drained it again and he said I can probably expect to have to come back again and to make another appointment for next week, so Im seeing him next tuesday. And just as we both predicted: in less than 24 hours it filled up again, so here I sit with the same lump. So, this is what I find ironic: I was seeing him every week for FILLS before, and now Im seeing him every week so he can stick a needle in and suck OUT fluid (blood). UGH!!!! But this time after he aspirated he sent the blood for culture which I feel good about, I just want to make sure Im not harboring any dangerous bacteria.
Everyone have a wonderful weekend ...:)
Kathy
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Kate: Love the "save the nipples" campaign idea!
Fairport: Sorry you are having to get those aspirations done. It sounds so not fun!
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Janny:
You have described how I feel, very often it seems. I'll just be chugging along and then something will happen, a thought, a memory and all of the past years experiences are brought sharply to the surface. It's like when I first found out about bc, I would suddenly realize "I have bc" and it would feel like I had literally hit a wall. Now I have more days when I don't think about it every moment and am back to occasionally thinking "Wow, I had bc, I had surgery, I did chemo and I'm HERE, as in this MOMENT" and everything seems more precious to me. Praying for you to keep your strength and courage as you make your way through the many phases of healing and thriving!
Fairport:
You're a very strong lady as well! Being a medical professional has to be hard in dealing with your own personal health issues....you know so much! I'm glad you're getting close attention from your doctor and hope your antibiotics take care of the infection threat. I'm very fortunate to have an excellent medical team and you're right, we still have to fight for diagnosis, procedures, treatments, etc. We know our bodies best and I've learned a lot during this past year....and the internet and especially bc.org have been my best tools in informative learning and preparation.
Best wishes to you ladies, sleep well and have a wonderful happiness-filled week-end!
(((My Friends)))
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Hi Ladies! I'm new to this forum and I wished I would have found this sooner. I love all the information I'm gaining and I can tell I'm going to be addicted to this website. But I'd like to share my story with you and hope that this can help others. I'm here to learn from you and hope that you can also learn something from me.
Thirteen years ago I found a lump on my left breast when I was 21 yrs old. I didn't go to the doctor until 6 months later just because I was stubborn and didn't think anything of it. My Mom finally got me to make an appointment and found out that I had breast cancer, stage 2. At the time my mom was doing all the research and keeping track with my doctors and I really didn't pay much attention to all the terminology. I feel bad now that I didn't pay more attention because whenever I want to post I'm not really sure what type of medicine I used or what my BC was actually called.
I ended up having a lumpectomy with node dissection back in '98, with 4 treatments of chemo and 6 wks of radiation. Back then my attitude has always been to stay positive and I still carry that attitude with me now. It has been 12 years and I was Cancer free. Btw, I was told to take Tamoxifen, but since I was the stubborn young adult that I was I only took it for 1 month and stopped. I have read all the other side effects and decided that I didn't want to risk it. So I stopped taking it without telling my doctor.
So 12 years had passed and I was cancer free. I went to get my mammogram this year and they found a DCIS on my left breast. I also had a needle biopsy done on my right and they didn't find anything on that one. I had finally scheduled a surgery after weeks of waiting and finished my surgery April 13th. I had a bilateral masectomy with the lattisimus dorsi flap procedure, followed by a nipple sparing/ skin sparing on the right with expanders put on both breasts.
That was 2 weeks ago. I took 5 drains home with me. The first 3 were taken out a week later and the last 2 was this past monday. It feels good not to have those attached to you. The hospital did have this little bags that you hang around your neck so that you could put your drains in. They had to give me two...lol. Yesterday was my second visit to my PS and he did add on to my right expander (only 30cc's). He didn't want to add more since the skin is still healing and the nipple that was spared was actually turning pink. I guess he didn't want to jinx it. The left breast where the skin from my back was taken is not healing too well right now. Since that breast was radiated, the healing process will have to take longer. The doctor said that he might have to go back in and fix it if it doesn't heal properly. I'm crossing my fingers that it will heal properly so that I don't have to do another surgery. Btw, he didn't add any to my left breast since he was worried that it would stretch it too much while it's still healing.
Im currently putting sulfadiazine on both breast to help with the healing. I'm also taking antibiotic for the redness. I've stopped taking the pain meds and I was able to drive for the first time yesterday...and a stick shift at that!...lol.
I guess the only thing I'm worried about is the healing of the left breast. Has anyone undergone this procedure with the lattissimus dorsi flap? If so how did was your skin afterwards? Did it heal ok? Also, my back has a BIG scar on it. Twice the size of what I normally saw on before and after pictures. I know it's too soon, but I'd like to know how much of the original range of movement did you get back after this procedure? Just worried that my back would be weak from now on.
Thank you for listening. And I can't wait to read all of the answers on this particular thread.
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crx:
Welcome----I didn't have the procedure that you did, so can't offer any advice. Someone else will likely come along soon with some information Best wishes as you continue healing and please be careful driving! Just wanted to let you know we care and will be here for you.
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crx-
I didn't have that procedure, either, but I did want to welcome you. Thank you for sharing your story with us. I hope you will be able to find others with similar experiences to guide you. I wish you the best in your treatment and recovery and hope you will let us know how you are progressing.
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crx: welcome and thank you for sharing your experience with all of us. I did not have the procedure you had but will be following along with you as you go down this path of healing.
Tonight I had dinner out with another couple. I'm over 4 months out from surgery. Thought of all you girls as you wait for your nipples to heal. I ordered a round of shots of the "slippery nipple" to rejoice I have come this far to be enjoying a normal evening out. Unfortunately the bartender did not know what the recipe was. Oh well, thinking of you all all the time!
BC in Colorado: this was part of the campaign on "save the nipple!"
Janny 99 thats good you are doing well. How is the pain?
Fairport: will it ever end for you, and this is prophyletic! My cancer side looks better than my prophyletic side. Now I am fearful because everything was perfect and healed so well for me that when I have my implants changed out to the larger size, am I jinxing myself.?
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crx: Welcome and thank you for sharing your story. I would recommend you look under the reconstruction sugery section on the boards too since I know there are people with your type of reconstruction,. I had tissue expander done.
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PB22: I know, right??? Im trying not to get too discouraged. I dont believe in jinxing yourself: I believe you should have what you want. And looking at it in a positive way, since you did so well and healed so well last time, theres every reason to believe you will again!!!
by the way, WHAT is a slippery nipple?!0 -
Hi Ladies,thanks so much for the "nipple tips" I am so grateful for you all! you have no idea! I see the forum growing many new ladies joining. It's so great. CRX thanks for sharing your story, My heart goes out to you, your strong and very brave!
Ladies thank you again!! Your support is priceless and touches me so much!0 -
Kate, I love it! Save the Nipples!
fairport, I will be praying for you! You are very courageous!
crx, Thank you for sharing your story with us. You have been through so much, stay strong. Keep us posted!
Janny, I'm glad your surgery went so well. The crying is normal and will get get better with time. This is an emotional roller coaster for all of us, especially in the beginning.
PB, Stay positive! I know it is hard not to second guess your decision, but this surgery should be easier. What day did you say you are having your surgery?
Have a great weekend everyone! I feel so fortunate to have such a wonderful group of women to share this experience with.
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Thanks everybody for your support. The tears are healing, I think.
Kate 33 I think that my surgery was a little different than the typical Nipple Sparing mastectomy that I have been reading about. I guess I wasn't sure where I fit in to the reconstruction topics, and this felt the closest for me. My surgeon used the words 'segmental mastectomy' and 'lumpectomy' kind of interchangeably.
I had 2 physicians work on me the same day...My BS came in and removed the malignant tissue on my right breast (kind of like a lumpectomy, I guess) and then my plastic surgeon removed an equal amount of tissue on my left breast...so they did kind of a 'lift/reduction" .... I have always been really busty, so that made me a good candidate for this procedure. The shock was seeing how small I am now. But, I am symmetrical, I still have a feminine form, although I'm smaller. They removed almost 2 pounds of breast tissue. I'm ok with this, and I think that when I heal, the shock will lessen. Still waiting on the final pathology report.
I have full confidence in my medical team....that, I think, is key to healing....trying to keep a positive attitude also seems to help.
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Janny99 - My nurse went through BC several years ago. She gives very good advice - the best was to just try to have the emotions when they arise. The sooner we process all of this and let the grief/anger/fear/sadness/disbelief out, the sooner we will move on to the good things in life. She said there was one point when she sat down on the floor and really cried hard, and after that she turned a corner. Hopefully, there is a good corner just ahead for you, and it will be sunny on the other side.
My best to all of you. XO, Mary
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Mary, Thank you for sharing this advice. It is so well put, and so true.0
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I know when I was first dignosed everyone just kept tellling me how "brave" I was and all I wanted to do was get in the car and drive far, far, away and never come back! You can't just go around crying either. DH knew how I felt but I pretty much kept it from everyone else how scared I was.,,,and I still continue to hide my feelings from most people. Silly how we feel the need to "keep up appearances".
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Hi everyone-
Today was a challenging day. I've just been in this funk I can't seem to shake myself out of. My DH has gone back to work after having almost a month off and when he goes he is gone for 3-4 days (he's a pilot) so now half the week it is just my 13 year old son and I. When I first had my MX last month my friends and neighbors were wonderful with lots of support, cards, flower, meals, etc. Now I haven't heard from any of them in weeks. I was in the midst of job hunting when I got my diagnosis so there's no work to return to which is kind of a blessing since I feel so crummy but I guess I'm just feeling kind of isolated, too. It's so hard picturing my husband off flying with young and healthy flight attendants when I feel so unattractive right now. I think I'm just having a major pity party today. I just want my life back. I want my body back. I want my energy back. I feel stuck and I'm not sure what to do. I keep thinking it will get better when I have my exchange surgery.
Anyway, just having a crummy day. It's funny how I can feel so positive one minute and a puddle of tears the next. I feel like this is the only place where I can just let it all out. Thanks for coming to my pity party and letting me vent.
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Help!
I had my BMX, with nipple sparing, skin sparing on April 13th. with immediate reconstruction. tonight I find a big gap at to surgery line above the aeorla infected and slightly red. I see the BS & PS on Monday. I filled it with bacitration. The nipple itself looks OK
What do you think?
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Dustymom: even though today is sunday there is a way to reach the doctor on call: I would call and describe what it looks like. They can advise you and maybe even see you or call in an antibiotic prescription. Try not to be scared: your doctors are available to you. hugs
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{{{{kate}}} We all need a pity party sometimes. I've been in tears myself the last several times reading some posts. My heart hurts for all of you in your pains and struggles and afterall, misery loves company, right? We can all relate!
Dustysmom: I agree with fairport (who has had her own struggles after mx), call your doctor and see if they can at least get you started on something for now. Some of those antibiotics are nice and strong and work quickly!
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Dear Fairport lady and BCincolorado,
I did get a hold of my PS and she did call in a strong anitbiotic. Thanks. I guess I was so shocked. In nearly three weeks there hadn't been anything remarkable about the surgery sites. I got scared...you guys helped a lot!
Nikki
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