Nipple Sparing Mastectomy with immediate reconstruction
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thanks TN!
I slept through the night for the first time since my surgery on the 11th! Now that's progress! I am scheduled for a fill tomorrow, I plan to pre medicate myself, and once home from that appointment will ready the bath and glass of wine! Thanks for the welcome , I am so happy to have found you all.
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Fairport, good luck at tomorrow's appointment. New bride, can't imagine having to be thinking about all of this as a newlywed. PS 73, sounds like your drummer is a boob himself that should be excised.
TN to answer your question regarding the PT, I go to a regular orthopedic PT place as my prescription was written for "range of motion". I selected the place I go to for the close location as I wasn't driving then. When I called I told them my surgical hx and requested a PT with experience with mastectomy pts, and it be a woman. I was told that if I had an lymphedemia problems then I would be referred to the local community hospital physical therapy department which treats that specifically. Turns out my PT has a mother with bc so she is sympthetic. On one visit they had me assigned to the PT assistant for the exercises but then my PT did the massage. I did tell the PT I wanted only her and I since changed my time slot to a less busier time.
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see my latest at page 41 of 1Step thread. Or go to my profile. Bad news today. Don't want to type it twice. But will look forward to your replies. Thanks. Hope you are all doing well.
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NewBride:
I am sad you are facing all this especially as a newly wed. I have only been here about a month but even that short a time has taught me that there are so many wonderful supportive and knowledgeable women here and they (we) are behind you and supporting you and sending HUGS..try to take all this one day at a time, its hard I know but in the long run its so much better to focus on healing and positive things rather than becoming fearful about things that might not even happen. (I have to constantly remind myself of that and am far from perfect! I do know though that when I am focused on what is happening now rather than what might happen tomorrow I feel a lot better and stronger...)
So ladies: about my fill appointment yesterday: it was my second fill, 50cc in each. (had 25 in the day they were placed and my first fill appointment last week I took 50 in each.) So can anyone advise me: Last night was my WORST NIGHT EVER! The pain is one thing, but the constant muscle spasms were unbearable. finally fell asleep at 5 am after yet another muscle relaxant and vicoden. I was advised by the NP who works with my surgeon that it was possible that I would have excessive pain with the TEs because I worked out frequently and have very strong pecs which may make stretching them challenging. I dont know if thats true or not but I do know that if I will always be that uncomfortable it's going to be hard to manage alone (my sister from out of town came to be with me for 3 weeks, so she wont be here next week when I get my next fill).So to you all who have walked this path before me: any suggestions? Im maxed out on pain meds. Should I go with much smaller fills (which means even LONGER before I am rid of these miserable TEs) or do you have any tips to manage the pain? Heat? Ice? and thoughts would be so appreciated. (today I have a lot of pain but the spasms have subsided)
thank you !!!!!!
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Fairportlady, Thanks you for the kind words. I am feeling a little better today and even have a little good news to report. Path from the nipple area was negative so If the nipple survives the surgery (and it looks like it might), I get to keep it. I had 1Step w/ Mentor 325ml round moderate plus silocone implant. That seems to be doing well too. I see oncologist on Fri. we'll probably talk about my colloid carcinoma. I'll everyone updated.
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New Bride, hang in there, I'm sure you'll have all your questions answered on Fri when you meet with the onc. Concentrate how well everything is going today that you get to keep your nipple and you are healing. Keep us posted as we are all learning with you regarding this collidal type cancer.
Fairport, I didn't have the TE's went immediately to the implants and can tell you I shared the pain. It was excrutiating. The pain got better after one month when I went from narcotics to anti inflammatory called Altram. I believe it is the tight pec muscle that was pushed far at once for me. I also worked out. Hind sight would suggest to those not to work out the pec muscle prior to surgery as you don't want it tight. I should have stopped working out the muscle the day I got the dx. The other pain you feel the sharp ones are the nerves regenerating, that will go away. Ice helps for short duration a few minutes at a time as you don't have all your feeling there and don't want to freeze it off! I never used heat and at PT they don't use heat on me. You will see that massage helps the pain as well. I am 7 weeks post op and feel very tight like I have a tight bra on but that is the extent of the pain. It does get better with time.
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New bride, I had to re read your posting. I am interpreting that you had the mastectomy for DCIS and the path came back another carcinoma that was not detected and the issue is that there was no biopsy of the SN at time of mastectomy so at this time one cannot see where the breast would drain to locate the sentinal node. The one question I would ask the onc is will Pet scan be enough of a diagnostic measure to determine if there are any node involvements.
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fairportlady,
I had terrible pain with the fills, too. Darvocet and Flexeril, when taken together, stopped the spasms and allowed me to sleep. I've heard that valium is a great muscle relaxant. You could check another thread, "Got my first TE fill yesterday - Ouch!" for tips on pain. Hope you feel better!
Kristen
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Sorry Ladies, I have been busy the last couple of days, so I have not been able to check in. My niece just had a baby girl!
NewBride, You will be in my prayers and let us know what the oncologist says. You stay strong girl and I am sending out positive vibes to you! I'm happy your nipple is doing well.
Fairportlady, I feel your pain. I did not have the TE's, I had immediate implants like PB, but I had the tightness and the shooting pains from the nerves too. I just took what the doctor prescribed till I used it all, and then took Advil for a few days. I did not use heat or ice, beware of either one with your numbness, the pain will get better each day. I do remember feeling better one day and then having more pain the next. So, be careful when you have a good day to not overdue it. I am at six weeks post-op and hardly notice the pain or tightness anymore, except when I get really cold and my pecs tighten up. I worked out previously and I have read this has caused problems for others too. So any ladies reading this prior to surgery: Do not work out your pecs!
PB, it sounds like you are doing well, except for the tightness.
6 weeks post-op report: Well, it has been a busy week and I have had my ups and downs, mostly ups. My pain is so infrequent now, that I am not constantly thinking about my boobs or should I say "foobs". Driving is still not fun. Today I went to turn with just one hand on the wheel-big no no! I still have hardness in the right implant, but the left is nice and soft now. I have been massaging my right one and it seems to be getting better. I still have pain under both of my arms, not too sure why that is still bothering me. I can see why I could be having pain on the side that I had my lymph nodes removed, but not sure why the other side is still hurting. My left breast has dropped nice, but my right breast is a little higher. This could be due to the tightness not letting it drop. I have been told this could be due to capsular contracture . Hopefully, the massaging will work this out. Work has been going good, but if I could make a suggestion to any ladies out there reading this that are preparing for surgery, take up to six weeks off, if that is an option for you. My job is not strenuous and I still had a tough time going back after four weeks. We need time for healing our bodies and our minds. I think the toughest part for me was being social again, I still wanted to "nest" at home and feel I was not quite ready to deal with other issues so soon. It does seem like six weeks is a turning point, so hang in there everyone, it does get much better. Hugs and well wishes to all!
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Good suggestion Kristinka! Fairportlady, you could also check out Exchange City.
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PB22, That's going to be at the top of my list. Colloid carcinoma is pretty rare (about 3% of all BC).and because of its mucinous nature is hard to detect with mammo. My stereotactic core needle biopsy shot right past it. (insert really bad word here). Because of DCIS, albeit extensive and high grade, I elected no SNB. Both BSs I consulted with were fine with it. So now here I am.
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New Bride, I understand your situation, will be following along with you.
TN, I agree with you, six weeks seems to be the turning point especially for driving and going back to normal activities. I am finding on some days I'm so thrilled to be back to my normal activities and then the following day whiped out requiring a nap. TN do you have any numbness in parts of your breast as I still do?
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TNLady: thanks for the info! I am on the exchange city thread as well: I am seeking out information any and all ways I can. I am a womens health nurse practitioner, but I can tell you that as a patient myself now, all that clinical experience over the last couple of decades doesn't really have a positive impact on me . What IS the best source of information AND support is found in these on line communities. BTW there is a rather incredible coincidence: Jean (mykidsmom) and I were good friends in high school!
newbride: will be thinking of you tomorrow and sending good thoughts/HUGS.
PB22 and Kristin: thanks for sharing your experiences with me! Last night wasn't as bad as the night before. My PS said I can double the dose of the muscle relaxant and that helps.I also now know that sitting in a chair with an ottoman allows me to sleep much better than laying in bed. OK so heres an ironic thing: in anticipation of my BMx, I did a lot of extra workouts in the weeks before it was scheduled because I knew I wouldn't be allowed to work out for a while afterward. Sooooo....if my pecs were firm and strong before, they were REALLY extra firm pre-op! UHG! If it weren't so painful, it would be funny! Thanks so much everybody:
I am sad that you all know this pain but lucky to have found you
On a lighter note, when I put a t shirt on now, it kinda looks like I have boobs! Perky boobs in fact! LOL...........Kathy0 -
Fairport Lady, I did the same thing working out to be in the best shape for surgery. Wait until you flex, you'll see those muscles.
Newbride, good luck tomorrow.
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NewBride, I hate that you are having to deal with more worry. One positive: maybe someone else reading what you are going through now, who has not been able to decide whether or not to have the sentinel node biopsy, will have an easier decision about going ahead with it. Remember you are in our thoughts and let us know how it goes tomorrow.
PB, I do still have areas of numb spots, mostly where my incisions are. I have more feeling in one nipple than the other. The nipple that turned black has more feeling, but does not perk up. The nipple that came through surgery okay, perks up, but does not have a lot of feeling. It is stange how I have feeling in some areas and not others. Are you having a similiar problem with the numbness?
Fairportlady, I am with you! I could not have made it without the advice and support of the woman on here. It has also helped me by sharing my experience and knowing that maybe it will help someone else too. I miss working out. I feel like my arms are turning to flab! The only thing I am allowed to do is walk. I love to walk, but it's just not cutting it. The truth is, I don't think I could lift too much weight now if I wanted to. If I move something the wrong way or lift too much, I pay for it later. What really stinks, is that I have also put on a few pounds-I'm a stress eater. I 'm glad your boobs are looking perky! Mine were headed down south before surgery, so perky boobs are definitely a plus.
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Thanks you all for your prayers and other support. There may be a couple of positives here. My BS is presenting my case for review at breast board (like tumor board but limited to BC only). I understand OC attends these boards also so having a rare cancer may get me input from many specialists in the field, not just the ones I chose. The moral of the story may be " Drs., Push for Those SNBs!"
Nipple appears to be hanging in there. Hyperbaric treatment was suggested by a friend to promote healing. I will ask at my PS appt. on Mon. Have any here done hyperbaric? I believe one of the ladies on the 1Step thread had it to help her during rads.
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Newbride, I think that is great news that a review board is looking your case over. The more minds reviewing it, the better. I did not do the hyperbaric chamber, but I have read about them, and it sounds like they can be very beneficial in healing. I don't think it would hurt to try it! I did read about the woman on the other thread trying it, maybe you could PM her. I am glad you are able to find positives in this trying time.0
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TNLady, Thank you. It's nice to have the support of intelligent women like yourself. I'm off to the OC and then to PS office. I'll post the latest when I get home. As far as I can tell the nipple continues to improve. The 1Step reconstruction seems to be causing me no problems either. Jeez, I sure hope I don't need rads. It could really mess up my PS's beautiful work. Well, wish me luck and send up a couple of prayers. Thanks.
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Newbride, tuned in to see how you made out, you have been in my thoughts today.
TN, yes, I still have numbness , when looking down at myself I am numb on the right sides of both breasts. I keep massaging to stimulate the nerves to heal but believe it will take a year for those nerves to come back. I am pleased with how my breasts move and when lying on one side they fall together. Overall am happy with the implants themselves except would like the upper fullness. I have an appt with PS next week.
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Hi Anne, Push ups are the best exercise for tightening those chest muscles which is what you don't want prior to a mastectomy as it will be more resistant thus painful when expansion is desired. You want them loose. Some of us here did the immediate implant without the gradual TE and was painful from what I read for both procdures, TE and immediate. I am only 7 0r 8 weeks out and have not tried a plank position yet as I am still tight and sore and I want the implants to drop and fill out and look the way they should look so we can evaluate what they are going to look like if that makes sense.
No it doesn't sound trivial to be concerned about the working out in the scheme of BC dx because it is who were are and what we do to stay healthy and look our best. It also will educate those who follow along how long it take in this healing process to get back to where we were and that there is life after BC dx. There is another thread on here about fitness which will can tell you how long in the process it will take to get back to your normal workout routine. I have started to work on my biceps only at 3lbs, am also concerned of the flab.
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Hi Anne, glad you could join us. I agree with what PB says, you want those muscles loose! I worked out previously, not push ups, but free weights and a weight machine. I had a lot of pain to begin with and have since learned from other posts, that being tight is not a good thing before surgery. I am almost 7 weeks post surgery and my PS will still not let me work my upper body out. I go back on the 15th of January and am hoping I get the okay then. I know how you are feeling, and it is not trivial, I also felt the same before surgery. I worried and still do worry about getting the flabby arms. I try hard to stay fit and it is really bugging me not to work out my upper body. I think each doctor has their own set of rules to follow because I have read on other threads where people are working out a lot sooner than I have been able to. We are so happy to have you here. I hope you will keep us posted on your progress. When is your surgery scheduled?
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PB, how do you feel after your workouts? Are you sore anywhere? How does your chest feel, does it get that ripply look others have talked about? Last night on the treadmill, I tried pumping my arms more aggressively and it made me very sore under my arm pits. I hope my doctor gives me the okay soon, I want my arms looking good by summer! It sounds like you are on the right track! Are you still seeing the PT?0
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I'm checking back today as I am thinking of how Newbride had made out yesterday and hoped she had checked in with us.
TN: Yes I am still in PT and just on range of motion. The PT has me holding a wooden broom handle and lying on table reaching all the way back upon return I am using my ab muscles to bring it back not my chest muscle. Also am doing chest presses with the broom handle, super light , do not feel it the next day at all, mostly for range of motion. She told me that the biceps work out with 3 lbs shouldn't feel in my chest which I don't. If I did I would not attempt it as I don't want to get that area tight. I also did 3lbs tricep exercises too and didn't feel it in my chest. What really helped with the stretching under the arm area is the PT put a styrofoam roller piece under me while lying on a table. your core has to keep you from rolling off, it is placed under your butt and upper back, you are supporting your self with your core. While holding that position I am told to open my arms out, which is where I feel the stretch. The stretch is good and helps so much. Another exercise to stretch is , I also am told to go to the corner of the room and lean into the corner,with my elbows bent on each wall, helps stretch the chest too.
I will specifically ask my PS on Fri what he allows at this point.When I flex I am seeing an indentation where the cancer was scraped close to the skin. I'll probably have to have some fat transfer to fill it in, but will be patient as things are changing daily as they settle.
Anne, I really miss doing the overhead presses for my shoulders-delts.
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Hi to Everyone. I was pretty tired after my trip into town yesterday for appt with OC and the PS asst. DH (dear husband) drove me to everything and then took me out for sushi. I continue to do well on the post op front at day 10 although I stll have my drain at about 40cc per day. One note of interest for nipple sparers: When I voiced my concern about a little exudate and blood on my wound dressing I was told that a little yellow (or green) is normal and that bleeding is in fact a good sign. It indicates blood supply to the area. Oh yea. Duh. I felt kind of foolish for about a second but then just decided to accept it as good news.
As for the cancer, the jury is still kind of out. OC has now classified me as Stage I. I believe my tumor is Bloom-Richardson Grade 2. To the best of my understanding the tumor is not a pure colloid carcinoma but in fact an IDC with colloidal tendencies. I don't know if that means good or bad news for me. The breast board meets on Tue the 2nd of Feb. I will probably learn more after that. OC is also sending a sample of my tumor for Oncotype DX. That may help determine a course of treatment. Right now it looks kind of like this: No rads (nothing to shoot at) so at least my reconstruction probably isn't going to get burn't down. The Tamoxifen that I thought I might opt out of is starting to look better and better. Four rounds of chemo may happen. And there is the possibility that nodes will be taken for dissection.
Basically I'm still in that place where we pray that the BS got all of it in the MX.
That's about it for now. Thank you all for you continued input. Your prayers other support make this all so much easier to do. I hope God is good to all of you.
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NewBride, I wish you could have got your other drain out, you will be much more comfortable when that comes out. It sounds like your doctors are on the ball with making sure you get the right kind of treatment. I had a place that came up on my incision that oozed a little yellow, and I can tell you that it scared the **** out of me. So, I don't think you should feel foolish at all. We are are own advocates and we have to be vigilant. No rads hopefully, that is good news! It is nice that you and your DH made a day of it, we always to the same. I like to pick some place special to go after my appointment so I have something to look forward to. I will be praying for you and thank you for checking in with your progress.0
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Newbride, thanks for updating us. From what I read about the collodial tendancies it seems that it is a nonaggressive form to have and well differentiated. I am hoping your oncotype comes back low. I would guess that you had a PET scan prior to the mastectomy therefore if there was an activity in the nodes they would have insisted on the node biopsy. I think you will do fine with the decision you made.
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Had skin sparing/nipple sparing mastectomy 2 weeks ago. The black areola is now pealing away in patches and underneath it is raw pink/red skin that is very tender. I've applied the antibotic ointment given to me for the drain wound hoping to avoid infection. I'll call the doctor tomorrow. I was confused about which doctor to call - the PS or Breast Oncologist. I guess I'll call both of them tomorrow.
I was thinking the new (red/pink painful areola) feels like a blister and I was wondering if buying second skin - the same thing you'd apply to a blister would help. Second Skin - Helps blisters heal naturally with these Spenco 2nd Skin® blister pads.
* Soft, hydrocolloid pad is covered by a thin film dressing to help keep blisters from drying out, promoting fast, scab-free healing
* Each application lasts up to 5 days and protects from dirt, bacteria and water
* Can also be used for cushioning to prevent blisters from occurring.Anyone had that advice? I don't want to move around too much until I get this figured out.
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I'd love to hear about the areola wound care. What did your doctor tell you to do and did the doc tell you how long it would take to heal the pink new skin? Do you think the pink new skin is more like healing a 3rd degree burn or healing a blister? I've searched the internet and I'm not getting any answers.
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I was surprised to see that I had stretch marks on my newly constructed 1-step AlloDerm boob. I was not forewarned about the possibility. I just have two small ones on the underneath side. Not a big deal but it would have been nice to know prior to surgery.
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Before changing out the implants ask about waiting for the Gummy Bear implants. They are far superior to anything on the market. Clinical trials in the US ended February 2009 and are awaiting FDA approval. The Gummy Bears have been used in the EU for the past 15 years. Advantages of the Gummy Bear - more natural shape, they don't leak (thus the name) and can last a life time. With silicone implants available today, the standard of care is a MRI 3 years post-op and every two years after that, with replacement after 15 years. Yet another thing to worry about!!
I'm on my PS's waiting list for the Gummy Bears.
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