January 2018 Surgery group! Please see updated list in thread!
Comments
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houmom- it feels great having those drainage tubes out. Working for a few hours today felt great. Im resting now. What is your next step in tx
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I got my genetic testing back and I have no genetic links to cancer. I am so relieved to know that I did not pass on a cancer gene to my daughter! My biggest fear was to find out this was genetic and I possibly passed the gene on to her.
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Dipaquette-You must be relieved.
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ItsStillMe--thanks for the suggestion! I will see if I can get it at my drug store. I think things are exasperated by some friction I feel whnever the expander moves in that breast. For some reason, the expander is more active in one than in the other...
My PS still thinks it is related to the nerves trying to figure out what is going on. I hope he is right! Otherwise, when I go for my exchange, he will shave off more underneath the nipple area, which means I would lose all sensation there, never mind the good sensation I feel in the other part of the breast.
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Jo, just read your post and woohoo! So happy for your good result!
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Jo I’m doing Tamoxifen and that’s it for me now. I’m in ‘active observation’ until further notice. I will have stage 2 of the DIEP recon in a couple of months to refine the original surgery, one breast is about a cup size bigger than the other so that will be good.
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Jo - I had similar treatment as you, but before my surgery. I had 6 rounds of TCHP, then continue with H and P to complete a full year. Once you get through the chemo treatments, herceptin and perjeta every 3 weeks are a piece of cake. More importantly, the monoclonal antibodies (H&P) are a game changer for HER2+ lesions. You can get through this. I'm rooting for you. Sharon
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philaflash-I believe my MO said 6 rounds of TCHP then H+P to complete a year. What was the most diffucult side effect of TCHP for you? Thanks for the encouragement. I was reading my path report last night and I found lvl present. Today, I called my doctor's office and they acted as if it was no big deal. When I Googled it, it sounds very scary. I was actually too tired last night to dwell on it. After spending half a day at Mount Sinai Medical Center and then going to work for 3 hours there was nothing left in my tank last night. I watched the Olympics on and off. I feel rested today but Im not going to over do it. Have a good one, Sharon
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Jude-my surgeon was very pleased and positive. Initially, he thought there several nodes involved. I was relieved there was only 1 node involvement. I worked 3 hours yesterday and I crashed as soon as I arrived home. Are you still over doing it? Your idea using the ace bandage for the drainage sites was great. I didn't have an Ace bandage so I used a very wide soft belt and it worked great. Have a good one.
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Jo - I'm sure you know the usual side effects from carboplatin and taxotere: fatigue, hair loss, drops in blood counts. If offered, get the on pro neulasta. I found taking Claritin two days before and five days after chemo helped with potential neulasta bone pain, which can be a problem. I had none. My white cell counts never got low enough to be a problem. I also had no nausea or vomiting, which I credit to the premeds they give before infusion. The worst side effects for me were the fatigue and the secretory diarrhea caused by the taxotere. I've lost thirty pounds since last summer (I could afford to lose it, but it's one helluva diet i wouldn't recommend). You really need to make sure to drink 60-80oz of fluid a day. Lomotil was my bff. I usually felt better by the second week, and really good by the third week. Then you do it all over again. There are other side effects, but those were the worst for me. Tell your oncology team about side effects; there are so many choices to help you through this. I'm now seven weeks post chemo. My hair is finally starting to make an appearance, albeit ostrich fuzz. The diarrhea pretty much resolved after the first month. Fatigue is much much better. And at 67 years, I'm two fills into perky new boobs. Herceptin and perjeta infusions are an excuse to read a book for two hours. Feel free to PM me if you have questions. Remember, we all have our own experience on this journey. My walk and yours may be completely different, but there are lots of similarities. We're all in this together. Best to everyone.
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philaflash- looking forward to starting chemo and to finishing it. Thanks for the detailed information.
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Jo, I'm glad to hear that you and your surgeon are happy with your path report. I wish you the best as you start the next steps in this process.
This seems like a trivial question to ask all of you, after the discussions about more critical topics, but I'm sure some of you may have suggestions for me. I had the post-op with the PS yesterday. Even though the drainage is way down, one side was only 12cc for the day, he wants to leave both drains in for another week. At least he did remove the tegaderm that had me wrapped from almost collarbone to below the chest so that was good. Anyway, the drains feel as if any movement is about to pull them out of the sutures. I felt better several days ago. He says the drains and suture area look good. Any suggestions on how to alleviate this painful pulling sensation?
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maggie2- I was fortunate that I experience pain with my drains one-day-only. Jude had suggested using a compression bandage. I didn't have a compression bandage so I used a wide soft belt and tied it around the drainage site and applied light compression to the insertion sites. That prevented any jiggling. It worked for me. My surgeon remove my drain tubes 9 days post op. I had less than 20 CC's coming out of each tube. Don't forget you had complications so maybe your surgeon is being more cautious.
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Hi friends, I actually had surgery yesterday BMX (nipple sparing) and just got home a few hours ago. I was hoping some of you from the January surgery group could let me know how often or how much you’d get up just to walk around a bit. I don’t wants or overdo it but also am not great at being sedentary. Pain/soreness is tolerable with pain med and muscle relaxer. I feel it more when I do get e.g. to use restroom etc. I’d appreciate any helpful tidbits suggestions during this initial post op.thank you
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Thanks Jo, I'll give it a try.
HopefulAC, I came home last Wednesday, 1/31. Getting out of bed was difficult for me, too. The first couple days, I took a nap both in the morning and afternoon, but I would walk around the house just to change positions and not be isolated in the bedroom. I was also able to stand in the shower the next day and let water run down my back. Just that activity wore me out but it got me up and moving. The exercises that the hospital PT sent home with me required that I be out of bed, too. Each patient is different and each doc has different post-op instructions.
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HopefulAC- I was very fortunate. Other than taking over-the-counter Tylenol I didn't experience any pain. Day 2 in the hospital I was walking up and down the Halls. Upon being discharged from the hospital within 3 days I was walking 2 miles a day. It was not power walking, min-moderate pace. Each person is different. I was still taking naps in the morning and in the afternoon. Yesterday was the only day in which I felt I had over done everything. I worked a half a day yesterday. It was too soon to return to work. It was Day 9 The drainage tubes were pain in the neck.
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HopefulAC...Glad your surgery is over. My instructions were to walk as much as possible to prevent blood clots in the legs and because circulation is good for healing. I also wore support hose to prevent blood clots.Best for your recovery
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I had my first post-op with the PS today and I have a bit of a healing issue.
It seems the expander was folded in one spot and was pushing out on my skin. Add it that my chest is numb, was bandaged for a week and I had a bump that was running on clothes and is now like a wound. They deflated me a bit, so I feel like I am going backwards they are hoping giving my skin more time to heal before stretching along with an anti-microbial cream to put on the area. I’m a bit discouraged by this and hope it heals 0 -
Touhhcookie- I'm so sorry you're going through such a difficult time. Hopefully you'll start healing soon.
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Hi Maggie,....those darned drains, I had no problems with mine because my BS made a loop where the drain exited my skin and taped it to my skin and my compression bandage covered it. It meant I couldn’t strip the drains right at the beginning of the drain but that didn’t appear to matter. Good luck with everything Maggie, you are lucky getting exercises...my BS really didn’t give any guidance I ended up finding some online.
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Shadie, Amazon has it!
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I had my first post-op consult with PS today and had an issue with a fold in the expander causing a wound in my skin (kinda like a blister). They expanded me by 75ccs to get the fold out, then took it out because it was putting too much pressure on my skin. When I went to change the bandage on that problem area, I see my nipple is starting to turn black. At the PS it looked a tad purple but not black. For the first time since the day I was diagnosed, this put me to tears. When do we get a break? I know it could be worse but I guess I was hoping for no issues. Did anyone have a nipple sparing mastectomy? If so, any nipple issues that were able to be resolved?
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Toughcookie101 I am so sorry to hear of your complications I was unable to have a nipple sparing BMX as my cancer was too close to the nipple but I know I would likely be in tears to if tuesday happened to me. I hope there's something your PS can do to save it.
HopefulAC even getting up every hour during the day and moving around will help, I hand a very heated time sitting still so that helped. My PS does not want me walking at a fast pace, she said that bringing up your heart rate can slow healing and since it took me 5 months for my last surgery to heal (bled at least some daily for 5 months) I am not talking amy chances.
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ToughCookie...With my left MX a year ago, my nipple turned black right after surgery, but it did recover completely. I had severe ptosis ((sagging) so at the time if the exchange, the PS grafted the nipple up higher. The graft mostly took, lost a little nipple projection which was okay. Hope your nipple and skin issues get better.
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Judeshome--thanks! I will look for it. I actually think at this point that it is less about the nipple and more about the movement of the expander in that breast! You can actually see the expander move when I turn my body in a particular way. It seems that some tighter bras, never mind putting something over the nipple area, holds the thing a little better in place. But I will check out getting something to numb the area, too.
ToughCookie--I had a nipple sparing PBMX, and I had a dark area at the base of the nipple and over part of the nipple itself. I was afraid it was necrosis, and at about the 2-3 week mark, most of it fell off. My BS and PS both told me that if it was necrosis, it would be apparent within the first two weeks or so. Specifically, they said to look out for a difference in temperature between the two nipples--if the black nipple is cold, that is a bad sign, because it implies lack of blood. Good luck to you!
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Thanks for the suggestions on the painful drains. I ended up putting maxi pads over the drain insertion site in the skin and then loosely wrapping an ace bandage around my chest. I think part of the problem is that the BS requires wearing a post surgical mastectomy bra for 2 weeks. The band of the bra keeps rubbing on drain site. I’m thinking of putting in a call to the PS to see if I can use the Emla cream on the area.
ToughCookie, Im sorry to hear about the nipple issue, especially when you were able to have nipple-sparing mastectomy. Mine had to go to get the clear margins. The crazy thing is that on my “good side”, during the attempted direct-to-implants part of the surgery, the PS had to stop due to the skin being overly stressed. I now have a tiny area that he’s not sure will come back. The cancer side skin seems fine.
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Hi, January sisters - anyone get a backache after their fills (50cc)? Achy between the shoulder blades.
I'm two and a half weeks post BMX with TEs and I can finally sleep flat on my back and briefly on my sides! Bliss. Wishing everyone continued good healing and a great weekend.
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Oh Philaflash - you are sooooo lucky. I can still only sleep on my back in a raised position, not on my sides at all and I'm 3+ weeks out. I'm yearning for the day when I can sleep on my side or even my tummy *sigh*. I'll let you know this week about achy back - I have my first "fill" Monday. I'm looking forward to it only because it's moving things forward and in the right direction - otherwise, I'm terrified.
Holly
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HollyDolly - nothing to fear about the fill. You'll be pleasantly surprieed. I think it's the fear of the unknown that's terrifying. The fill is nothing compared to everything so far.
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Philaflash,
I really hope so!! My experience in the hospital was miserable. I actually found hell on earth. You made me smile.
Holly
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