Nipple Sparing Mastectomy with immediate reconstruction
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gunner- I'm looking at a possible ooph myself. At my appointment at MDA this week the onco is recommending genetic testing, which I never had done, because she said since I had a male relative with BC I'm at a higher risk of having a genetic link. If I have the gene she is recommending an ooph as well. I'm afraid I don't know enough about it myself to advise you. Maybe someone else will chime in? Would you get the ooph in place of taking Tamox?
As far as the scar tissue I would recommend working with a physical therapist experienced in working with BC patients. They can break up the scar tissue with manual manipulation as well as ultrasound. I had an issue with some forming that was tugging on the implant but it's all been resolved now.
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Hey Kate cant take tamoxifen on for a year and half gave me a blood clot thats why they want to do ooph to put me in menopause, the tamoxifen seems to have caused havoc on uterus having issues with weird bleeding im a mess. U take tamoxifen as i see u were dcis like me i had dcis 2x same breast 5 years apart .
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Elizabeth - If the oncologist feels you should be on hormone therapy and you can't take Tamoxifen (estrogen blocker) they will sometimes force menopause surgically so you can take an aromatase inhibitor like Arimidex. Is that the plan? Sorry you're having such a rough go of it. It's frustrating to face one roadblock after another with BC. Hang in there!
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Kate33 - Aaargh - more waiting! So sorry you're going through this. Meanwhile, how is the lymphedema doing?
I just got scheduled for another follow-up ultrasound at the end of October. I've been feeling pretty relaxed about the lumps as they seem to be surgery related accoring to the MRIs and ultrasounds. But, the last teeny lump to pop up suddenly feels larger and that's odd for over a year post exchange. Hopefully, it just means that there's still healing taking place...hopefully
So.....we're in the waiting room together. What's up with these outdated magazines?
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Tina, Kate im not sure i should do lupron shots or do surgery with ooph. Im 53 lost my job need to work. Ive gone on like 10 interviews with no call backs. Been a joke my life seems a joke who gets cancer twice i had to get rid of the blood clot before i could move ahead with lupron or ooph. I just feel lost. My nipple on the implant has moved to the right i fear rejection got appt sched back with my plastic surgeon. Kate i go to UCSF Cancer center I was told if cancer comes back it is on the skin of implant where are your lumps.
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Surgical menopause - ughhhh, the worst time of my life. Why do women have to go through all this nonsense? You just reach a point when you get tired of being fooled with. I usually try to be positive, but sometimes it is hard. OK, done with the pity party. I had a modified radical hysterectomy the year before I had my mastectomy and I had nausea, insomnia, severe anxiety and depression. I lost 50 pounds, I was a mess. I will pass along a tip though. GO TO THE CHIROPRACTOR. Once I had my back adjusted it was like wave after wave of tension was released from my body and I felt like I had my life back. I took a break from the chiropractor when I was recovering from my mastectomy and tram reconstruction, but once I was able I got myself right back there, it has truly been a life saver. My chiropractor is probably one of the most positive people I have ever met and I always feel better after leaving the office.
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gunner - I'm the lumpy one
You're right, with mastectomy the breast surgeon can never get 100% of the breast cells beneath the skin so in theory if there's a local recurrence it should be palpable. My lumps are superficial and benign in appearance on imaging so I am told we'll continue to follow that way unless it seems prudent at some point to do biopsies. Urgh!I can't take Tamoxifen because I've had superficial clots in my legs after flying several times. So, I'm limited to the aromatase inhibitors like Arimidex.
Good luck with the job hunt!
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gunner- I am not taking Tamox as my BS didn't feel it was necessary. Also, no lumps, I've been having sternum pain and bone scan and CT came back with some abnormalities.
Tina- Your comment about the magazines made me laugh
so thanks for that! Yep, this waiting sucks! Guess these (hopefully) false alarms are just part of our new normal now, huh? Does your doctor know the lump feels larger now? If not, maybe you should give them a call? I'm sorry you're having to sit in the waiting room but it's nice to have the company. 0 -
Tina- Forgot to say- LE isn't doing too badly. I only have to wear my sleeves when I'm doing something strenuous like gardening or something. The swelling is really minimal but can definitely feel it if I overdo. I feel pretty lucky, though, that it's not worse than it is. I have been following the new lymph node transfer surgery that's going on right now. It sounds pretty promising.
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Kate, sorry you are back to waiting room. Wishing you peace of mind while you wait. False alarms are horrible! Hang in there!
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Hi all can any one tell me what surgical menopause was like the physical exp before during and after I am 52 peri meno and have to do either lupron shots or ooph due to blood clot from Tamoxifen. What can I expect feom surgery recovery and after, will I be a zombie.
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Hi gunner. I had abdominal hysterectomy and ooph in 2008 at age 40. So it was surgical menopause. The recovery was hard because I had csection incision. As far as menopause....it took weeks for me to feel different. I had problems with insomnia and hot flashes mainly. Everyone is different. A year and a half later I still had them bad so I went on estrogen. I'm off now but Effexor seems to help so much with hot flashes.
A website called Hystersisters is just like this one. They have all topics as well as pre surgery threads. I loved that site when I was going through it and they can answer all of your questions, as well as give you support.
Good luck!0 -
Hi Beckers,
Thank you for the info. I wish it would cool down.0 -
I know Elizabeth....I'm so ready for cooler weather!!
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Gunner- I had an ooph because I am BRCA2+. It was my 4th surgery in 2011. I had lumpectomy, NSBMX, and exchange to implant before my ooph. For me it was a very easy surgery. I just felt like I had done a ton of sit ups. Kind of sore but not really in pain. I was off for a few weeks because of Christmas vacation at my school. I do get some hot flashes and night sweats but that may be due to taking letrozole or the surgical menopause. I know it is different for everyone; just wanted to share my experience. Good luck with your decision.
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Hi all. I've been on the site for a while but just found this threaded.
Hi TinaT, I see you're in here!.
I am 33 y/o and had a NSDMX with TE placement on Aug 31. I get my first round of chemo tomorrow. Blah.
My PS seems ok with the way my nips look thus far. I'm not. Well it's not that I'm not happy, my right nip is just gross looking. It's attached nicely but the center of it (where the tip would be and then the whole bottom under it) is raw and gauged looking. We have to put gauze with triple antibiotic on it daily. I haven't gotten my first TE fill because of a little raw spot (from the steri strip tape) at the base of my right breast. Blah.0 -
MrsCich, boy do I know the Bacitracin ointment on nipple and gauze routine! I am 8 weeks post and finally just have a small part of the scab left. I got infection and had to go through 2 rounds of Augmenten. Hopefully it's done but now the nips don't look alike. :-(. Round 2 we will try to get them to match. PS says they will be sisters, not twins. Ha.
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I have also been on this site for a while, reading more than anything and was poking around tonight and found this thread. I had a NSBMX with tissue expanders on 7/27 - so disappointed becasue we were goingto do the NSBMX with the DIEP flap but my PS decided to stage the process. Now that I am in chemo, I think I am glad I am waiting. Hopefully I will be able to have the reconstruction in May - finish chemo in January and the PS said I have to wait 90 days after the final treatment.
I have had 2 fills but that is also on hold for a while. I was not blessed with long legs but I do have a long torso so the expanders are higher to than I would like but my PS called this the ugly duckling state and has assured me I will be very happy with the DIEP flap once we get to that point.
I can't wait toget the TEs out - they are on my mind all of the time because I feel like they move around and I don't have any feeling across the middle of my chest - in 2 months the sensitivity hasn't increased much but I was happy they were able to save both nipples so I will take the good with the bad.
Beckers - it is so encouraging to see you had your DIEP in August and you say you are still chugging along. I haven't had time to go through all of the recent posts here so I am sure there are others but I am defintiely anxious to get through chemo and to reconstruction! While the DIEP scares me I am very excited about it at the same time!
Wishing everyone the best!
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MrsCich - I'm surprised to see you on this thread! I thought I read on another thread that you had decided against NSM because you would require a breast lift, etc. and it was turning into a rather complex surgery. I can't guarantee that the nipples will survive, but please don't give up hope quite yet. Things can definitely look ugly before they look better so hang in there!!!0
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Sherbab, I did have DIEP. I have no regrets. It is a tough recovery, I won't lie, but some bounce back faster than others. Overall, I am very glad I did it. Got rid of old tummy scars and stretch marks too. I am having stage 2 in Dec to lipo more tummy fat that they will graft into one side to fill in a flat area and they may have to build up left nipple that is flat. My PS said to get something from Le Leche League that they use for inverted nipples and try it. Apparently it is suction type cup and helps pop nipple out. Worth a try I guess. Ha.
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TinaT, my PS gave me a bunch of options but I chose NSBMX with immediate TE placement.
Backers, I don't think my right will ever heal. How long does this take? Like I previously said, it is attached nicely to the breast but my nip (from the center) looks like its melting off. The open, indented/gauged looking area, is yellow/white like a wet scan. I had a minor infection at the top of that same nip, where it was attaching to the breast. Ugh.
T minus 1 hour and 30 minutes until I sit in the BGC for chemo. Blah.0 -
Hello Ladies, Discharged from the hospital the day before yesterday from NSBMX.
Taking Percocet every 4-5 hours for pain, antibiotic, Ativan for nausea, and colace with prunes, apricots, and more prune juice! No movement yet. : (
Did any of u gals have a significant amount of swelling under the area just below the armpit? I feel like my expanders were put in the wrong place! Lol. Since my NSBMX was a bit different then most because of my large breast size, and droopiness I knew going in things were more on the risky side for necrosis. Decided to trust in the doctors, and go for it. Would have lost them anyway if I just went with a BMX. Having said that I have a few questions for you girls. I haven't peeked at all, btw I have a very weak stomach and don't think I'm ready to see it all but kind of have an idea what things may look like. I've been told the ps did my incision in the inframmary fold, and did not need to do the half anchor that he originally thought he'd need. The BS said that my left nipple (cancer side) is looking great, the righty is a bit dusty? Three days post op he peeled back blistered skin off righty, and said it had some pinkness below the blister. The strange thing though is that I feel pain, and irritation when he fiddles with it. Is that normal? I see the BS today for my path results (gulp) and want to also be prepared with a list of questions. Do any of you ladies have suggestions? I also gave a great amount of pressure a few inches under my collar bone. I think that might be the expanders? I know the PS mentioned he does fills very gradually, so I hope it wasnt filled too much at the time of surgery. I'm in NO hurry for that aspect. I want to just heal!
For you women struggling with the ooph decision, I highly recommend that hystersisters website. I had a complete hysterectomy this past may, and found a huge amount of support on that site. I'm 46 and was put on a low dose HRT vivelle patch. Changing it twice a week. Well 2 months later we confirm the breast cancer and that it indeed had estrogen+ receptors I ripped that thing off my body so fast! So needless to say surgical menopause, with no HRT and a breast cancer diagnosis has made our home a bit of a hot house in more ways than one! As far as the surgery, it was a breeze! Honestly, probably easiest surgery I've ever had. It was a laparoscopic surgery, and then they pulled out everything through the vagina. Pain was minimal, took one Percocet on day one, and only Motrin for another two days. Area where cervix once was took the longest to heal. A good six plus weeks. Felt a little tugging from within but other than that I was pleasantly surprised things went so well.
I'm also not a great candidate for tamoxifen because of a questionable dvt after a long flight 10 yrs ago. I am interested to know about the alternative med to tamoxifen.
Thanks for listening, and helping me figure this whole thing out. I so appreciate any advice or experiences you've had. You are all incredible people, and I am so lucky to be in you're company. Wishing each of you a wonderful pain, and worry free day.
~kellie0 -
I had NSBMX in March and I had my exchange 5 weeks ago. On my right side two weeks ago I started having lots of nerve regeration feeling. I now have some feeling back in my nipple. Of course nothing like before but it is feeling. I am thrilled and my PS was really happy about this news. My left side I don't think there is any hope as I had a lump and rads and after rads I had no feeling in the breast anyway. so going in to BMX I was without feeling. PS agreed he doubts I will ever get feeling back in that breast or nipple.
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Sherryc - That's exciting news! I had some feeling in one nipple shortly after surgery. Then it went away, but it slowly has come back again. For me it's a rather uncomfortable sensation. Nothing really on the cancer side (which was the side with necrosis and partial loss). My BS says many of her patients report return of sensation, but usually quite different than before NSMX. However, at my last appointment she said that she's had some patients reporting more "normal" nipple sensation, but it sometimes takes up to 2-3 years. It's really encouraging that you've had such a quick response!0
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Tina glad yours is coming back as well. Hopefully it will get better. Mine goes between the uncomfortable sensation to just a dull sensation. But at least it is something. the day after my BMX I still had feeling in the upper pole of my right breast. It was very dull but I could feel pressure on it. PS said that was a very good sign that I did not loose 100% and felt that with time I would get some feeling back. All during expansion I would have to take a deep breath for the needle going in because I could feel it.
Kate so sorry you are back to the waiting game with the Pet Scan, but at least you will have more answers once it is over with.
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oh, this is all wonderful news about the nipple sensation. i am hoping that my nipples make it through, but if they don't, they don't. i'm doing immmediate reconstruction to minimize need for further surgery or possible infection, since i have the mets to the liver. thank you everyone, for your feedback.
btw, even though i'm mets to the liver, i plan on living a long damn time. i've responded incredibly to the chemo and no my tumor markers are steady. :-)
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gritgirl - Amazing that we're all in the same boat here, but each journey is so different. You're right - if someone is physically a candidate for nipple-sparing why not at least try? If they don't survive it unfortunately it could mean an additional surgery and that's no minor thing. On the other hand, if they are removed initially and nipple reconstruction or grafting is done down the road that's surgery as well. The best we can do is gather as much info as possible, listen to that little voice inside, and keep trying to push through.
Best of luck, Sidewaysgirl
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Kellie- It's wonderful that you're feeling well enough to post! Glad everything went so well and hoping you got some good news with your path report today. Did your BS address your concerns with the swelling under the armpit? My guess would be that it's related to either where they did SNB or is it where your drains are? The pressure in the collarbone area could be from the drains, too. I remember feeling that but it went away when I had my drains removed. The drains wrap all around each breast so could be pushing on things. As far as the pain in the nipple I would only take that as a good sign- that there is sensation there! The best advice for recovery is hydrate, hydrate, hydrate! Keep a water bottle, Gatorade, Vitaminwater, etc next to you and drink constantly. This will not only help with the constipation from the pain meds it will help flush out all the anesthesia quicker, too. Just remember to take it easy and don't lift your arms above your head or do any heavy lifting until cleared to do so. Good luck with everything. (((gentle hugs)))
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Kellie, if the swollen part your speaking is under your arm but not part of the pit, then yes, I have that. The area where the side of the sports bra is, is where mine seems fatter. It comes and goes. From what I understand its from the cutting of the muscles for the tissue expanders. I'm almost 4 weeks post op and it still "swells"
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MrsCich, it feels like it takes forever to heal. I'm on week 8 and still having to dress it. It sounds like the yellow/white area is called slough and is normal in healing process. Mine got very red and spread to breast skin when it was infected. I came very close to getting hospitalized for IV antibiotics. I just finished taking 2nd round of antibiotics yesterday. The girls on this site encouraged me to be patient. My breast surgeon said to me today that even though my nipples aren't perfect, they are so much better than if tattoos. I have to trust her. Plus the plastic surgeon will work his magic again in December. Hang in there.
Kellie, glad you came through surgery so well. I felt very swollen under armpit area, which feels so much better now at 8 weeks post. Still some tenderness from drain site on one side at times but so much better. Wasn't the Hystersisters website wonderful? It helped so much when I had hysterectomy. If they took your ovaries, maybe you can take aromatase inhibitors. Lots of great and informative articles on this site about them. Good luck with the healing.0
