Nipple Sparing Mastectomy with immediate reconstruction
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Carole and TNLady, It's possible that insurance would pay for hyperbaric treatment if it were provided through a hospital burn center or something else a little more conventional far as medicine is concerned. The place that is available to me specializes in chiropractic and other alternative healing methods. They told me, even before my visit there, no insurance will pay for it. Frankly, in the case of this place, I can see why. I got a distinct feeling of quackery about it.
I'll just have to hang in there with the Silvadene and be patient. I'll see PS every week to check the progress of my healing and trim eschar as it separates from new skin. If things take a turn for the worse I may look for hyperbaric treatment outside of my area.
PB, Losing the drain was fantastic and I can't wait to be able to shave my legs comfortably. I have been shaving under my arms since about day 6 post-op. I would have looked like I had a poodle under each arm otherwise.
Jan. 20, 2010 Left breast nipple sparing MX. Immediate 1Step reconstruction with Alloderm. No SNB
Diagnosis: 10/27/2009, DCIS, 4cm, Grade 3, 0/0 nodes, ER+/PR-0 -
NewBride, I like your comment about the poodle under the arms, I had the same problem. I still have a hard time shaving under the arm I had the lymph nodes removed, it is like a crater under there and I still don't have complete feeling back. I have to get help with that one. I'm so glad you have your drains out, that is such a big relief-it's freedom!
Fairport, I hope your nipple is looking better and your fills are going good.
7 weeks post-op report: Feeling much better. My left breast is feeling more and more like a real boob now, much softer. My right breast is still harder, but softening up some. Still can't reach as high with my right side. I seem to be getting more energy and I am able to more each day.
PB and PS I'm thinking of you! Best wishes to all!
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TN lady:so happy that you are feeling better now that you are 7 weeks post op! Had my 4th fill yesterday: BAD night last night and into today too with muscle spasms. This is the worst yet, but I don't want so slow things up (like going to every other week for fills or going in to have him take a few cc's out) I am taking the muscle relaxantl and trying some range of motion stretches to deal with the spasms and am slightly better as I write this. One nice thing: my dog knows somethings up: he hasn't left my side and keeps getting in my lap to comfort me....so sweet. It actually helps some: feels like a hot water bottle or heating pad!
my best to all you ladies : thinking of you and sending hugs and best wishes
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Fairport: My dog was the same. I spent 4 weeks in bed and he stayed right beside me. He didn't want to play and never went after my drains. How many more fills left after this one?
TN: Good to hear yours are settling. My breast cancer side is still firm. Had my co workers over and showed off my docs handiwork.
Newbride: what week are you in now?
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I've been reading through this thread and it has been very encouraging. I'm 35 yrs old and have just been diagnosed with DCIS. As far as I know, it's stage 0, I guess I won't know that entirely until some form of surgery is done. Everyone is pushing me towards the route of lumpectomy/radiation but I have so many concerns about radiation and recurrence, especially because of my age. The doctors give you such great survival rates, but when you look at the fine print, those are only rates for 10 years. Guess what - in 10 years I would still be considered young for breast cancer. So I am STRONGLY leaning towards a bilateral mastectomy. I'm still researching so no decision is made yet. It seems many of you did the second breast propholactically, and I'm curious if this was covered by your health insurance. I've tried contacting my insurance company and they are useless.
I love the idea of doing the implants at the same time as the mastectomy, especially if can spare my nipples.
Thanks!!!
Laura
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PB loved your story: dogs rule! My PS says once I have the size I want (judging by how much projection I have) then he fills 50% above that then I would get the exchange 3 weeks later. I am petite (5ft 3 in 115 lbs) I have as of now 220 cc in each, he thinks 300 tops but maybe less so Im guessing about 4 more fills . I cant imagine that as of tonight because I am still sooo uncomfortable but usually after 48 hrs I feel a lot better.One thing new and very positive: I actually look like I have boobs now: and perky nice ones at that!
Imnop (Laura) welcome! But sorry you are having to deal with all that. I am very new to this, had BMx and TEs Jan.11. My diagnosis was atypical ductal and lobular hyperplasia. My surgery was prophylactic and even though I am in a challenging stage of the process right now (translation: muscle spasms suck!) I have no regrets: the thought of close monitoring, future biopsy's and all the stress of literally waiting for a malignancy (that the odds were quite high for) reminds me how lucky I am to have had this choice to make .Cosmetically the skin and nipple sparing surgery is such a great option and I am just now getting an idea of how that will be working out for me and Im feeling even better about my decision. Of course everyone is different but like I said: no regrets here!
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Hello to all of you. I am now 3 weeks post-op. The healing continues. I'm carefully getting back into a normal routine. There are a few motions that still hurt but I think it will all be OK in the long run. Losing that drain was the best. I was getting kind of tired of buttons too so it is nice to be able to pull a T-shirt over my head. The nipple continues to make slow progress but every day it seems to look a little better. I have appts. with BS and OC at the end of next week. I should get my Oncotype DX score then and find out what happens next. The last thing I heard was probably chemo. All I can do right now is pray everything will work out. I am starting to get nervous about it.
lmnop, So young to join us here. Do you have a strong family history of BC? Has your doctor recommended getting tested for the BRAC gene? If your insurance provider is less than helpful, talk to your breast surgeon about insurance coverage for prophylactic MX.
Pets are great. My normally tempermental siamese cat has been so sweet since I came home from the hospital. She slept every night with me in the recliner for the 2 weeks that I was there.
fairportlady, When I had my drain removed I took a Vicodin about 1 hour before my PS appt. It really helped alot. Would it be possible for you to take some pain med on the days that you have fills?
I hope everyone is doing well. I'll check back later.
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I actually have NO family history at all! I will be doing the genetic testing, which will weigh heavily in making my final decision.
I've also been struggling with fertility over the past few years so my body is not at the top of my list right now. Betrayal!
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Hey gals, I hope everyone is recovering well. NB - how are your nips feeling? Sending prayers for all of our nips to heal nicely.
Im five weeks post op and doing ok - my range of motion seems to be getting better but I do tend to get stuck while reaching for the glasses in the cabinets. I started carefully walking my dog again and once I get my real (fake) boobs I look forward to running. I bought my first non-underwire bra since I was fourteen - so funny, but wow I guess this is the silver lining for having to go thru this drama!!!
Imnop - Im so sorry to hear about your dx. I understand where you are coming from - I started with a lumpectomy and just prior to rads I opted for the bmx. There was so much information coming at me at time of dx, I couldn't wrap my head around all of it. Then and now, I still I feel that bmx is very radical - but Im 100% on my decision and feel it was the right thing for me to do. Regarding the brca gene, I believe I read somewhere that family history only accounts for 15% of breast cancer and it seems right because more than less of the women Ive connected with who have BC have had no family history. So at time of decision making I was told by my BS that a lumpectomy with rads is the same recurrence rate as a bmx give or take a few percentage points. However, what was not told to me until a few months ago was that a new cancer popping up increases over time at approx. 1% a year and apparently once you have breast cancer you are now in a slightly more narrow window of getting a new version of breast cancer. I don't mean to scare you and obv not make light of it whatsoever, Im just passing information along that was given to me by my drs and this was one of the reasons (amongst others) for my bmx. I would confirm my numbers with your onc to be sure since the villainous chemo brain is living inside of me. Hang in there sounds so f** cliche but do so if you can
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PS73: Thank you for your input. It is definitely the increasing percentage over time that is getting to me. At 35, with no kids yet, I hope to have a long life to look forward to and knowing that that number goes up all the time keeps me awake at night. My husband thought I was being very radical at thinking about the BMX at first, but the more we talk and I tell him my concerns, the more he seems to be coming around. I have a few more appts to get more info on radiation and the BMX surgery (which I am super scared of) and then hopefully I'll feel more prepared. Like you, there was so much coming at me at the time of the dx (which was only a week ago) that I really didn't absorb very much. I was too busy trying to get up after that truck hit me! I was happy to follow the path of least resistance. But now I feel like I have to get all the info and do what's best for me even if it's harder. My biggest prayer right now is that the gene test will be negative. I don't want my sister and neices to have to deal with this. And it will greatly impact my decision to have a baby.
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Imnop, you are smart to look at all options and by talking with others that have been through the same decision making process. I remember what a shock it was to me when I found out I had DCIS. I was lucky to have found breastcancer.org. I did a lot of research on both options and read many of the posts on other threads here. I did have prophylactic on the side I did not have cancer in, and my insurance did cover it. I do not regret my decision at all. I did not want to go through radiation. I have read on other posts the difficulty other woman have had with nipple or skin sparing after radiation. Radiation can damage the skin and make it hard to do the nipple or skin sparing if you have skin damage. I wanted to save my skin and did not want to take the chance of not being able to do it in the future. It is a hard decision to make and I'm sure everyone is telling you that you are the only one who can decide. I remember thinking that I just wish my doctor would make the decision, why did he have to give me options? I read on a post that the reason the doctors leave the decision to us, is that they cannot tell us to take out good tissue. I don't know if that is true or not, but it makes sense. It worked out for me in the long run, they found A-typical tissue in the prophylactic breast after surgery. To me, the decision process was the most difficult time during this whole thing. My doctor set up appointments with both a plastic surgeon and a radiation oncologist, so I could look at both options. Even though I was already leaning towards a BMX, he thought it would be a good idea to talk to both doctors. Once I made the decision and made my appointment for surgery, it was like something had been lifted off of me. We are here to help you with any of your questions.0
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I believe it's law that insurance companies must pay for reconstruction when a bc patient elects MX. And must pay for the prophy MX and reconstruction as well.
Imnop, what a rotten deal for a 35-yr-old woman to have to deal with bc. I elected BMX when I went for my first consultation with my BS (breast surgeon, who was also my breast specialist). Dh was with me and completely agreed with my choice. But I'm 66 and my main concern was staying alive and doing whatever I could to avoid a future dx of bc. I'd had my breasts a lot of years. The thought of losing them was worse than the reality. I've adjusted very well to my reconstructed breasts.
With all that said, I absolutely agree with TN that I would think long and hard about radiation and the damage it could do to your skin. I've read quite a few posts by women who had lumpectomies and radiation, then later on had either another primary bc or recurrence. As young as you are, you probably want to check into DIEP, which was an option for me since I live near New Orleans and the NOLA drs. are highly recommended for DIEP.
Best of luck.
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imnop - seriously. it is as if you are sharing my thoughts at time of dx! I too was concerned about the brca for my little neices/sister/mom - that is all I cared about! Did you find out your ER/PR status yet? You are doing everything right to look at all options. I agree with what the other ladies mention about researching every angle. Ive bumped up a DCIS thread for you titled "Past Post From Beesie for Understanding DCIS".
*I just got back from my herceptin treatment and woot woot, I lost five of the twenty lbs I gained!*
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I am 1 week post op..bilat mast with recon. I feel good. Tylenol for some soreness. 3 drains out yest. one tom. nipples spared. Surgeon says great decision..found cell changes in both breasts post pathology. For me it was a no brainer...get rid of it. So much info and recon options. I am just looking forward to filling of the expanders. I am lucky..early detection..early stage. I am new to writing but have been on this site multiple times to read all the wonderful info. In fact..I am the one that mentioned this option to the doctor. This was not presented as an option initially..I had to bring it up then it was recieved with open arms. I am an RN ..I have a pt who is now dialysis dependent d/t chemo reaction and she had wished she knew about mast with recon...so this site is great for info.My insurance doesn't cover an extra surg bra 100$$...so found a support bra that hooks in front at kmart ...just so to launder the other.
So how is it going now for you??I am getting a little bored already. I am used to working at work or at home..hard to sit. I have good range of motion now..can't drive or lift yet.
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Imnop: Along with the other girls, I am sorry you have to go through this at your age. The good news is that it is DCIS and you have time to consider all your options. I was DX in Oct and had the surgery in Dec. I asked my onc how long would it have taken to get to the next stage of invading the nodes and was told about 3 years. Not telling you to take that long , but don't rush. A few questions; where are you from? The reason I ask is that alot of surgeons do not do the skin/nipple sparing procedure yet so keep researching. Are your breasts dense, making diagnostics difficult on your healthy breast? Where is your DCIS located? What grade? Have you had an MRI to determine if you are multifocal, meaning more than one? You mentioned you have read all the responses so won't go into my reasons specifically as I already posted, however not sure if I mentioned that if you do one side and leave the other, the other side will gain and lose wt as you normally do and the mast. side wont. It may not be a noticeable change for others but if your as picky as we all are, it could bother you. The outcome with a skilled surgeon looks great with both the immediate placement of implants and the TE route. My insurance was BCBS and they paid for both sides. Being that you are <40, if it is genetic perhaps that would help you decide. Because you are so much younger than alot of us who have kids and have been married along time, as Carole said we've had our breasts awhile, this decision would have been much harder for me at your age. My husband was totally on board with my decision.. I asked him if he minded that my boobs were fake and his response was "they're not fake they are part of you". but I woke up with breasts and he didn't see a big difference. My scars looked no difference than someone with a lift and augmentation. Perhaps you want to keep one breast for the sexual stimulation. Try to rule out what you care about and what you can live without..
PS73 is correct that there is a 1% rate of recurrence every year and it is cummulative. So you can look at it two ways, if you are not aggressive now, perhaps in 15 years for you there will be advancements in treatments/surgeries or you could look at it from the perpective of taking care of it now and moving on. The other thing to consider is what your post op adjunctive tx will be. At your age, if your are receptive + and have to go on tamoxifin for five years and then maybe arimidex, your still going to be young when you finished and then back to worring about the healthy breast??
Fairport: I took a percocet prior to my drains coming out but it didn't work as well for the chest muscle stretching.
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I am 41 . 1 week post op. bilat mast with recon. The surgeons said best choice. They too do not give this as a treatment option..I had to ask..but when i did the doctor was totally on board and basically said thats what she would have done. Skeptical about the insurance..I have a high deduct . Covered all both breasts and the alloderm used for recon which is very expensive but necessary. my insurance even covered my genetic testing. The doctor has to call to check the insurance stuff..they know how to write it/present it. I tried getting those answers and they said the MD has to submit it. But no problems. Actually there is a law in PA states insurances are required to cover recon with mastectomies and to make them match/fix the other as needed.
I would recommend this route to anyone at any age with breast cancer. Even at a low grade/stage the odds of coming back invasive was too much for me. Too much wonderful surgical options out there. Good luck.
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Hi there ladies
Thanks for the pre-medicating suggestions. I take the muscle relaxant just prior to a fill: doesnt do much. The good news is that just like the other times: I am a mess for about 36 hours, then the spasms just stop! I feel totally fine tonight, can actually watch tv or read a book and not be thinking about my breasts at the same time. I know that must sound crazy but seriously: its been hard to think of much else !
imnop: thinking of you: so happy to see all the support and information you are finding here...
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Imnop, I was dx'd with DCIS in rt breast at Thanksgiving, had a lumpectomy with unclean margins. Breast surgeon wanted me to determine wider lumpectomy with rads, or mastectomy asap. I gave myself a week a to let it all settle. For me, I knew I had to get all the info needed so I could be at peace in going into surgery. I have a special needs adult daughter who has many medical variables, and this played into my decision. I wanted to be done, once and for all, all the way, in the soonest time possible, whatever that meant. Fortunately, with DCIS you do have a little bit more time to do your research. I finally chose bilateral mx, with a DIEP reconstruction (abdominal tissue transplanted microsurgically up into breasts). I was told that it is the patient's choice regarding what to do with the other breast. I'm 3 weeks post op and doing well. My path labs came back with abnormal cell growth in my "non-cancerous" breast, so there is a possibility that a few years later that breast could have given me trouble, too. You have to seek your place of peace in determining what fits you, your perspective, and your needs. Some prefer dealing with one breast at a time, it is within their comfort zone. I will have one more small surgery to balance out breast size and to clean up some of the scars, but if you were to see me today, my shape is almost entirely normal. I'm very surprised and relieved. Cancer-free, no rads, no chemo, and a decent figure. At Thanksgiving time I thought my world was caving in - which it was. My doctor offered almost no advice, so I did the research on my own, actively using this site for ideas, as well as other online resources. You can do it. And soon enough you'll be on the other side, hopefully with a doctor telling you that you are cancer-free.
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Great post, kcshreve. I had the option of DIEP but the stomach incision put me off. I wanted to get back to playing golf asap. How is the DIEP recovery?
My BS told me I could take 2 or 3 months to do my research and make up my mind on surgical choice, but I told her, "I want this cancer out of me!"
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Wow! I can't tell you all how much I appreciate all your information. I guess everyone really feels the same way about this. And I'm really glad to know that this is the worst part, at least emotionally. I can't tell you how relieved I am to hear that insurance covered a non-diagnosed breast. In my opion, why do one? So I can worry about the other for the rest of my life or until that one has to go to. That's crazy to me. I'd rather have a matched set and relieve as much of the worry as is possible. The other breast does have some denser tissue and was actually the reason for the mammogram in the first place. Turns out it has fibrocystic tissue (determined by MRI) and it's lumpy and painful almost all the time. It has always worried me so I'm pretty sure it would drive me insane now.
I am ER+/PR-, but I don't know what HER is so I can't answer that one. My husband and I have been through so much to try to have a baby, in fact just had a miscarriage after IVF in December, so the thought of giving up on that is a huge factor for me. DH thought I was a little crazy when I first mentioned BMX, but the more we talked and I explained, he can't really come up with a good arguement against it. Yes, I know I'll have some scarring and I will admit I'm a bit vain, but as I told him, I would be pretty stupid to put my vanity above my life. He agrees.
I do feel like the world is caving in, but I am getting more and more moments of not feeling that way. Valium helps! Good friends do too. I'm getting around to telling people, which is so hard, but it reinforces how many wonderful people I have in my life. That is something that's easy to forget. Gotta take the blessings where you can find them I guess
Thank you all and I'll keep you posted.
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Steph, I'm so glad you joined us. I am 41 also! I'm happy you have found this site helpful. It has been helpful to me in many ways, sharing my experience and talking with others going through the same situation, has been like therapy to me.
kcshreve, Glad you are here. Your experience is why I decided to go ahead with the BMX to begin with. My doctor wanted me to go with the lumpectomy/radiation, but I was worried about the having unclear margins and having to go through the same thing you are going through now, so thank you for sharing your experience.
Inop, I had the fibrocystic cysts in my breast without the BC also. It was the same for me, I kept complaining about the pain all through the month, not just during my periods. My doctor had me get CT's, chest x-rays, etc. and decided it was chest inflammation. When I went to my GYN and told him, he sent me for a diagnostic mammogram. So, it was a bonus for me to have the prophylactic breast removed because I no longer have the pain to deal with. They also found A-typical cells in prophylactic breast during the post-op pathology. Telling people was very hard for me too. I could not tell many people at all to begin with without bursting into tears. You will see that a lot of people will want to help you and are very sincere about it.
PB and Fairport, What kind of dogs do you have? I have a Boston Terrier and she never leaves my side. She was so cute when I had my tubes, it's like she new to be careful around them. I agree dogs rule!
NewBride, I have a cat too, but he is very allusive and sticks to himself. I still love him though! LOL
Healing wishes to everyone.
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hi ladies
Im kind of freaked out now: I got a statement in the mail from my insurance co, yesterday, it was a long list of my hospital charges (which were even more than usual because I have a bleeding disorder (newly diagnosed same time the breast was, when it rains it pours) and I had bleeding complications on the left and needed emergemcy surgery on day after the BMX along with 3 blood transfusions,. anyway it said the room and board line ($1500)i am not responsible for because it was the hospitals responsibility to obtain prior authorization and they didnt. All the other charges ($23,000) it said "patient my be billed for". There was a big stamp on the paper saying THIS IS NOT A BILL it was however a preview of what must be on the way.I callled and spoke to who Im sure will be one of many layers of people who said she will submit it to be changed (after all a lot happened in the hospital besides room annd board, it makes to sense)
Both my surgeons have done this many ties and indicated its covered, and my primary care agreeded that doing this is an appropriate course of action.The day of my pre admission interview and testing they asked my for a $150 copy which I gave them. I may have a battle on my hands though because I acted before I had malignant cells, My diagnosis was atypical ductal and lobular hyperplasia, My breast tissue was dense, making mammograms sub optimal, I always ended up with ultrasounds, additional views, etc. Was covered for MRI because of my risk factors, I was being checked every 6 months. It was feeling so stressful for me, it was like they were watching and waiting for the malignancy that was certain to come,,Family history was Mother with breast and ovarian cancer (2 seperate primaries) Breast maternal grandmother and aunt. Ovarian cancer paternal grandmother and aunt. apparently because my mother had both' the impact on my risk is higher than if she had either alone.(BTW had my ovaries removed 10 years ago on the recommendation of a GYN oncologist)
Im really hoping this is going to get settled quickly. Besides the $, I am only partway through this, I still have the expanders in and need another admission for the exchange. What if they wont cover the exchange without paying all the charges up front? I really want them out asap. I am going to trust my docs I guess, if I need to appeal they should be able to help with my documentation. Jeeze, Im finally feeling so good :no pain meds in 2 days, energy is back, going back to work in a week: It is so disappointing to have to justify this.
OK feels better to vent.Thanks for listening. My little Cavalier King Charles spaniel is on my lap. if he could talk he'd be saying "no worries...its gonna be ok"
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fairportlady, the last thing you need now is a hassle with your insurance company. With your family history, I don't see how the insurance company can quibble with your surgery decision. I'm almost sure your drs. would have gotten pre-approval. I know mine did. Neither of my insurances (Medicare, BCBS) covered the expense of the On-Q pain pump my PS considered necessary so I paid for it out of pocket in advance. $500. It was the actual cost of the pump for bmx, no mark up.
I agree with your spaniel. It's gonna be ok!
Enjoy feeling good today.
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Regarding scarring - every doctor has their own techniques for incisions. In my case, my scars are thinner than I'd expected. i don't heal nicely from incisions, but for some reason I've done OK with these. On this side of the procedure (DIEP), I think I'd still be fine even if the scars were not so thin. It's the matter of having the cancer be gone for me, my mind is at peace and I can make peace with my body. I can't answer the question about golf, since I'm at 3.5 weeks and am only walking (2 miles/day on the treadmill). I've understood that many can return to exercizing around week 6, depending upon how they feel.
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Fairport, Insurance companies can be so annoying, but there are laws to protect us. My insurance sends a form that sounds similar to yours, and they always pay. I agree with Carole, I'm sure your doctors got pre-approval. I'm sure things will get straightened out for you, I know it is hard not to worry though. Venting always helps too.
kcshreve, my doctor gave me the okay to do the treadmill after two weeks, but it may be different with the DIEP procedure. I'm hoping to get the approval tomorrow to start working with small weights tomorrow. My arms are getting flabby! It's good to hear your scars are doing well.
I hope everyone is having a nice weekend. I have a PS appointment tomorrow, which is over an hour away, and we are expecting snow for the next two days. I
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TN - are you allowed to work your pecs? My PS said I cant work my pecs for atleast a year.
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PB, I will not know until I go to see my PS tomorrow. I am guessing most likely not, but if he gives me the okay to work my arms I will be happy. I will let you know what he says.
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I'm afraid to work my pecs. They're pretty developed from years of playing tennis and golf and from gardening and working out. I can make my breasts do all sorts of jumping tricks with slight flexing. I'll be interested in hearing what the different PS's say about working the pecs.
My PS warned me that the presses can relocate the implants sideways under your arms. I didn't ask him if there was a certain time period to avoid those exercises.
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TN good luck with the PS...hope the snow isnt too bad. I will ask mine about working out when I have my weekly appointment tomorrow. Im interested in my arms without straining my pecs.I am curious how the muscle spasms will be tomorrow, at least I know it they're bad they wont last more that a day and a half. I cant wait for the weather to get warmer so I can go on long walks with my dog.....
hope everyone had a good weekend and will have a good week.....
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Fairport, I agree with you, I can't wait to take long walks outside again. I did not make it to my appointment today, we had ice on the roads, so I had to cancel. Are you still having muscle spasms? If you are, you may not want to work out your arms yet.
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