Nipple Sparing Mastectomy with immediate reconstruction
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Kate33-I had cancer on one side but chose a bilateral because the other side had atypical lobular hyperplasia, final path also showed LCIS, DCIS on the non cancer side as well. They do a sentinel node on both sides, they said it is their practice to check both sides. Please let us know what your Dr Says.
PB-22 If you only had the sentinel on one side, that may be better for you. That bothers me about the blue die, I wondered why they took out so many. I'm sorry about your mom, I see how much my mother in law suffers.
Binney-THANK YOU!! for the wealth of information! I am all ready feeling I can't get a straight answer from any of my Drs so it's so important that we be aware for ourselves and advocate for ourselves. We must be very in tune with our bodies so we know if something is a miss, in fact that is exactly how I found my cancer (lump) and pushed for a biopsy when I was told "it's probably nothing"and that I could wait eight weeks and have it rechecked!
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Hello to all of you. I seem to have become more of a lurker these days. It is hard to follow all of the threads that I participate on. I try to keep up via e-mail notification and check my e-mails at least a couple of times a week so if anybody has questions for me, rest assured I'm still out here paying attention and will do all I can to help anyone who needs it.
Now down to business. Let me get completlely off topic for this thread. YES, THE PENGUIN COLD CAPS WORK. I have finished 3 out of 4 rounds of Taxotere and Cytoxan. I still have a full head of hair. You can find the thread here on BC.org. It is called Cold Cap Users Past and Present. I found it just by entering Penguin Cold Caps into a keyword search. You can also Google Penguin Cold Caps and go directly to their web site. To the best of my knowledge, nobody who has used them has lost their hair to chemo. They are labor intensive and insurance doesn't cover the cost but they are so worth it. I believe joansf who also has posted on this thread has used the cold caps with good results too. I highly recommend them. Except for infusion days, I don't have to be "Cancer Girl.
Okay, now for nipple sparing. My MX was on Jan 20. My nipple is STILL healing. I still dutifully wash the nipple and apply Silvadene cream daily. I'm not complaining (much) but I think I must hold a world record for slowest healing nip. I still have one tiny spot of eschar about the size of my pinkie fingernail. Oh well, at least I still have the nip. There was doubt as to whether it would survive at all. It's taking its time but all in all it looks pretty good. I don't have the projection that I have on the untouched nipple but my PS is going to take that one down for me a little when I go for my symmetry surgery later this summer.
That's about it for now. I'll check back later.
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gulp: You are in my thoughts and prayers for tomorrow's surgery.
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Hi All- Met with my PS today and have a date for my exchange! It's June 29th which is a lot sooner than I thought. She said right now I am right in between sizes so I have to choose whether to go bigger or smaller. Believe it or not, my DH said smaller. If I go bigger I only have to do one more fill of 25 cc's on each side.
I got an e-mail back from my BS. I had asked about sentinel node biopsy and lymphedema. Here is what she said, "You did have sentinel lymph node biopsy on both sides. We generally don't recommend any changes in blood pressure, IV, or blood draws for lymphedema. We only recommend compression sleeves for those who have had more extensive node surgery." My surgeon is highly respected at the University Hospital down in Tucson, AZ but I still think I'm going to check out all of Binney's sites and do my own research. Lymphedema scares me.
GAgirl01- So sorry to hear about your path report. I'm hoping your meeting went well with your oncologist.
janny99- Hope your meeting with yours tomorrow is good as well.
gulp- Good luck with your surgery tomorrow. Hope it all goes smoothly and you can be back to be with your father soon.
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Gulp~praying for you and for a speedy, pain free recovery.
Met with my MO: recommendation of TCH, 6 treatments every 3wks for a total of 18wks, Herceptin for 1yr. Wow that's a mouthful, one I would like to vomit back up!! Of course, there is NO actual data for treatment on a 8mm invasive bc ca with neg. nodes. All of the data starts @ 1cm. My BS & MO took my case before Tumor Board (I work with him/her at a very large University Medical Center) unanimously...the concensous was for TCH. Not what I wanted to hear. I guess I'll be calling for the Penguin Cold Cap! The port placement surgery has already been scheduled for next Friday, echo. appt. on Thurs. & chemo. to start June 11th.
Janny~Thinking & praying heavily for you today...escpecially as I lace up my chemo. butt kickin' shoes!!!
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Kate,
thanks for sharing what your BS said, that certainly is encouraging. I saw my PS today because some of wounds keep opening up. He said he has to take me back in to do surgery this weekend to reclose it and possibly change the implant to prevent infection! Wow, setback! I wondered if any of you ladies had any issues with anything like this?
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Just got back from my PS - it's been 2 weeks since surgery - nipples are hard and crusty, but he said they look good, the hard crust will fall off and they should be fine - just in case anyone else out there is worrying about the same thing.
First fill of 60cc, didn't hurt and it's been 5 hours and just feels a little tight - but not bad - YAY!!
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GAgirl1011: You have been recommended the same treatment that I am receiving. Monday will be my 3rd round of 6. I will be half way through treatment.
My side effects have been minimmal: loss of appetite, fatigue, and funny taste in my mouth. I have been drinking loads of water and eating lots of fruits and veggies. Not sure if this has helped with the side effects. Every person is different. Also, our Faith is the biggest comfort.
I pray for everyone who has been affected by this.
Kim
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GAgirl, Janney, and Kimmycake, you are all in my thoughts and prayers that you tolerate the chemo regime.
sweetie; so sorry for this setback, hope that this infection clears up.
Gulp, thinking of you.
Newbride and bc colorado, never knew of the cold caps, thanks for sharing all the info.
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Gulp ~ Thinking of you today...I hope all went well, keep us posted!
Sweetie ~ A co-worker of mine has had similar setbacks with healing. She is a Treatment Nurse, so it really was frustrating for her to have wounds that didn't want to cooperate. Now, she is doing much better and healing well (finally), hang in there!
vmudrow ~ I have one nipple that still looks kind of funny and 'poofy', never got crusted over really, but still is a little swollen after almost 3 1/2 weeks. I still use a triple antibiotic ointment on my nipples at night. I still have very little, if any, sensation in my nipples...I often wonder if that will come back, at this point I guess I really am not that concerned.
Kate ~ Thanks for the info about the lymphedema. I have developed a seroma in my axillary region where they did the SNB and axillary node dissection...I really 'overdid' it this past Monday, and was carrying things that I shouldn't have been carrying (like my 2 ton purse) and now I'm paying for it.
Newbride ~ I still lurk quite a bit on here...so much good information and support!!! Thinking about the cold caps, but still not sure...
BCincolorado ~ we definitely need to do lunch!!!
GAgirl & Kimmycake ~ Guess we are all in the same boat. Saw my oncologist today and I was so pleased with the time and care he took in meeting with me and explaining everything so thoroughly and yet in a way that I could understand easily. I can't quite absorb everything he told me, need to read up more info on the chemo drugs. I have a DVD to watch about Herceptin, and so much to info to process, but I think I am just going to go to bed and get some rest to let it all sink in. I did some lab work today, will have an echo-cardiogram this coming Monday May 24th, Port placement surgery is Tuesday May 25th. I start Chemo on June 7th. Wow, what a ride! Time to Kick Cancer's Butt!!!!!!
I went for a long walk with a friend this afternoon, the longest since my surgeries, and I felt 'ok'...I really think I am 'ok'....kind of numb right now, but 'ok'.....
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sending out love to all you ladies..
The worst thing I have to deal with is the appearance of my left flat A cup and my perky round right massive C. It's nothing compared to what some of you are going through. Love and hugs and prayers for everyone
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hi everyone. i had my exchange surgery yesterday. I had asked my father's doctors on Wed if they thought he would die in a matter of days and they didn't think so, they thought weeks to months so I decided to have my surgery. So yesterday after coming home ready to rest and go to bed, I find out that he has a day or two to live. His condition changed and I am so upset. I am in pain but I am going to get myself to the hospital to see him. I wish I had waited because I am a physical wreck. I appreciate everyone's support. I am a little worried about my health as I have had no sleep for days due to my father;s condition and now I had surgery and I hope I don't collapse.
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gulp- Maybe your father appearing to be better was his one last gift to you knowing that you would go ahead with your surgery and that's what he wanted. I am so sorry you are having to go through this on top of everything else. Try to rest when you can.
I can't believe all the complications, lately, with bad path reports, chemo, wounds not healing, infections........c'mon Cancer Gods! Give them a break already!!!
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Gulp~ I'm so sorry to hear of the change in your fathers condition. Please try to take care of yourself and rest when you can. Praying for you during this trying time...He knows our pain and sorrow.
Janny & Kimmycake ~ Was your TCH regiment also recommened for 6 treatments @ 3 week intervals? Is that the norm? I had read that it can be given every week @ a lower dose, its suppose to be less harsh on your body. Do you know anything about this? Are either of you planning on trying the caps? I was okay with losing the boobs, but this hair thing is a real bummer. I'm ready to kick this ca's butt...once and for all. Janny...yours starts June 7th...I'm June 11th...a few days after. I'm right there with ya girl!! We're gonna rock it!~
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Gulp ~ My prayers are with you....so much on your plate right now, I can't even imagine. Try to take care of yourself, LET people take care of you too. Faith will carry you through.
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SPeaking of nipple and skin sparing mastectomies. I was interview for an article for CURE MAgazine about skin and nipple sparing surgeries. They intervewed my Doctors and a few patients..
should be neat and out in a few weeks.Cure is a cancer quarterly magazine that all with teh cancer diagnosis should be getting for free..
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hi everyone,
I had skin and nipple sparing bilateral in June 2006
I am very very happy with the outcome
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Gulp: so sorry about your fathers change...ask them to put a cot on his room so you can lay down when you need to.I agree with Kate33: maybe he rallied so you would have the surgery and get it behind you. I think your sleep will improve with those TEs gone. (((hugs)))
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Gulp, I am so sorry about what you are going through right now. I know the physical and the emotional demands on you right now. During my dx, my MIL had lung cancer.
GAgirl, I love your attitude.
Happy, thanks for sharing your experience, i'll look for it in the onc's office, which month issue?
Happy and yowyow make sure you visit the thread on where are the skin sparing nipple sparing procedures done and list your city down to help others find their surgeon.
These posts really help us all learn and to cope and put perspective into what each of us is going through and to know that someone has been there before us.
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happy29- That's so cool you were interviewed. I was just telling my Mom that I have never even seen a single article about this procedure in any magazine. Now what they need to do is put it in some women's magazines so they're aware of this option.
My BS has been making presentations to ob/gyn's through the University Hospital in Tucson, AZ. She's trying to get the word out to the "front line" doctors so they can advise their patients. She used my photos at the last one (with my permission, of course). Now I just need to put them in the photo forum. I will look for your article.
yowyow- I didn't even know they were doing NSM in '06. That's awesome! I don't know why more surgeons don't train in this procedure. I have a hard time finding a surgeon in my area that did them. Ended up driving 2 hours to find one. Where did you have yours done?
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GAgirl101: I though I was taking TCH like you, But I am acutally on TC. There is too much for us to rember all the time. I have no knoweledge of taking a lower dose of TCH every week.
PB22: Thank you for your prayers.
Gulp: So sorry to hear about your father. Remeber to take care of yourself also.
EVERYONE: Yes, we are going to KICK cancer's but and Rock IT!!!
Hugs to everyone and prayers to all who have been affected by cancer.
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Happy29: That is awesome you were intervied for the magazine. The more we are informed the better it is for those who have to go through it.
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Welcome new members we are glad you joined us.
gulp, hugs and prayers
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gulp, I'm so sorry to hear about your dad. I lost mine suddenly 7 years ago and a day doesn't go by that I don't think of him. I will be praying for you and your family.
everyone, Monday is my first fill (happy dance). I'm excited and prepared to pop a med beforehand! I don't know if I would get any pain but I don't wanna wait and find out! I have been really lucky that I didn't have any nipple changes and am having a good recovery..almost feel guilty about this! I hit 2 weeks post op already and figure that it only gets better...right? (=
I don't have my final path yet. BS told me it would be a good month. Is this normal? GAgirl, we had surgery the same day but you got your results a week ago....I wonder why the heck mine is going to take a month.? I was informed that my "preliminary" results showed a tad more DCIS but supposedly no invasive as of yet. I would LOVE to just get the final news as soon as I can. I HATE this waiting....bummer....
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gulp and gagirl my thoughts are with you in this time....know that all of us here are pulling for you both!
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Hi ladies...just found this thread. I had a BL nipple sparing mastectomy on 12/28....I also had some nipple necrosis...It turned black right out of surgery then just turned into a scab after about a week. When it came off everything was fine! My incision is underneath in the breast fold. Does anyone else have their's there? I'm now scheduled for my exchange on 6/1....and I'm super excited!
Gulp~ I am very sorry for what you are going through with you father. Even though I am new to this site and I don't know you well yet....you and you father will be in my thoughts
Mandi
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MandiPandi, I had my incisions there..they are still healing but I just had my surgery on May 6th. I believe TNLady had her incisions there as well (the inframmary fold).0
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MandiPandi- Welcome! Glad you found us. I also had my incision underneath the breast fold. I was really happy when I found out my BS was going to do the MX that way. All the photos I had seen showed incisions through the middle of the breast. I guess it depends on how big you are. It's easier to do it underneath if you are fairly small breasted.
There is another thread called "Where are the skin saving nipple saving procedures being done". If you get a chance post on there where your NSM was done to help others find a surgeon.
I'm having my exchange done on 6/29 so I am right behind you!
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My incisions were underneath the breast folds as well. My surgery was done like a breast reduction/lift, my BS did the surgery on the right breast (malignant side) and took approx 650 grams of tissue, and then my Plastic surgeon came in and did the lift/reduction on the left breast. He took approx 605 grams of tissue off of that side. He did the 'finishing' up work and used the rest of my breast tissue to make me symmetrical. So, I didn't need to do the TE's or have the exchange to get the implants....so, that part is not familiar to me. I am much, much smaller, but I am of equal, still have a feminine form, still have my nipples, and they were able to get good clean margins using that technique. Has anyone else had their surgery done that way? I wasn't sure if I fit into this forum, but it was the closest I could find.
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hurleygirly- it took 3 weeks for me to get my path back (after they said it would be one week to 10 days) but the results were great. I had started to worry but delay doesn't necessarily mean bad news apparently. It's just different everywhere it seems. I had my first fill (and 2nd) last 2 weeks- no problems! Yay! it looks like I'll be able to do the exchange surgery in July at this rate. In the not so great column I still have 1 drain in (4 weeks out) and it's still draining 60 ccs a day.
Mandipandi- that's where they did my incisions as well.
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