DIEP Flap Reconstruction 2016
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I so understand where you are. I'm so sorry. Wish I could meet you and give you a big hug. It is hard at this stage because no one really understands what you are going through unless they have been through it. Are you anywhere near a first class teaching hospital? I would highly recommend a second opinion from some of the best in this country. I am sure they can even meet via FaceTime/Skype if you are not close. Insurance typically pays for it.
Tonight might be a light night on here due to the holiday, you will soon find that many will reach out to you. I also love the crazy town thread.
Big big hugs to you. XO
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Hi Pink,
I'm surrounded by family watching football so I thought I would respond.
Do you know what type of BC you have? Size of tumors? I was triple negative and had a tumor that was 4 cm so I had chemo first.
I was totally overwhelmed with my decisions. I chose a BMX because I read about too many women having a second primary in the other breast. I'm very happy with my decision. I had my drains for three weeks which sucked! I had pain and I think it sucked at the time, but I've honestly forgotten much of it. You will have plenty of painkillers.
I have tissue expanders and they are hard. It was uncomfortable getting them filled but I haven't had any infections. I am having physical therapy to prepare for my DIEP. My PT is loosening the fascia to make surgery and recovery easier.
Everything I researched indicated that immediate DIEP recon is an older procedure. I didn't feel comfortable with the possibility of needing radiation after surgery so I went for delayed recon. I was really worried about how it would look. I had nipple/skin sparing and no radiation. I'm very happy with my appearance. Do you know if you are a candidate for nipple and skin sparing
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Hi Pink. Sorry you had to join us, but I trust you will find this group to be a great comfort. I feel like a have a whole bunch of new besties thanks to these forums.
I'll give most of your questions a shot, providing you my history as I answer.
Question 1: What influenced you and would you do it again?
I was diagnosed with BC in January of 2015. The radiologist who did my biopsy said I was a perfect candidate for a lumpectomy, but since I am BRCA2, I knew that a bilateral mastectomy (BMX) was in the cards for me. My dad had breast cancer a couple of years prior and was tested. So when he came up positive, I got tested.
When I got my positive results, I was not interested in losing both breasts just because of odds. I decided to wait until something was found. Now that I am on the other side of something being found and realizing the ramifications, I am not so sure my initial plan was such a good one, especially since another doctor (integrative medicine) had revealed that my body made the bad, cancer-promoting estrogen. But, it is what it is.
After seeing the breast surgeon (BS), I thought a DIEP sounded like a good plan. He had given me a helpful book on breast cancer that laid out all of the procedures. It was the "Breast Cancer Treatment Handbook" by Judy C. Kneece. It goes over diagnosis, surgery, chemotherapy, etc., so is a great book to have on hand as you work through this process.
Later, I learned of a book that would have been helpful to me: "The Breast Reconstruction Guidebook : Issues and Answers from Research to Recovery" by Kathy Stelio. I got it from the library this summer and started to read it and thought how I wish I had read it before I started everything! Oh well.
I went to see the plastic surgeon (PS) that my BS recommended. I explained that I was interested in using my own tissues. He told me that I was too thin. (I learned later that was not true.) He recommended implants since they were the least invasive choice, and one that he did all the time. (Your PS will recommend what HE likes to do, not what is necessarily the best choice for you.)
Unfortunately I experienced a "rare" complication of implants: infection, twice. So, three surgeries later it was September and I was left with one expander (still flat) and the other side with nothing but saggy skin. The months of flatness showed me one thing: I didn't want to be flat! The infections meant that an implant on the left was no longer an option. The PS suggested a latissimus dorsi flap, but I really didn't want to move muscle.
I went back to my original BS and he recommended that I see someone who does the DIEP flap. I had to travel 1.75 hours to a teaching hospital where they did the DIEP. There I met Dr. Chu who trained at U of Penn and had plenty of DIEPs under his belt. He told me I was really the perfect body type for the DIEP and that I had enough stomach muscle to get an A or a B.
I decided on the DIEP. Factors that influenced my decision:
- I had no choice about moving tissue: muscle with the lat, which still requires an implant. The DIEP seemed to be the best for preserving muscle.
- I read through all of the 2015 DIEP forum and started the 2014 forum and was surprised to see that NO ONE regretted their choice of this surgery, even those who had complications.
- I met with a couple of women who had completed reconstruction. Some had implants and one had a lat flap. The implant ladies were ambivalent about the implants. One complained about how cold they were. The lat flap lady showed me the party trick: how she could flip her breast around by twitching the muscle. Oh joy.
- Implants need to be switched out every 10-15 years. The more I thought about it, the less I wanted to have to undergo surgery down the road.
- Implants can leak and need to be monitored. Again, something I was not interested in having to worry about if I didn't have to.
- Reading the implant and lat flap forums caused me to see that lots of those ladies regretted their choice. Further reading indicated that implants often have problems:
The occurrence of complications using expander-implants can exceed 40% in published studies. However, despite a significant rate, the complications themselves are usually minor and do not prevent completion of a satisfactory reconstruction. In experienced hands, good to excellent aesthetic outcomes can be obtained in more than 80% of patients (http://emedicine.medscape.com/article/1273841-trea...).
My PS was extremely competent. It was just bad luck that I had infections twice. I could see that implant reconstruction could be a good route, but it certainly wasn't for me. The more I read about the DIEP, the more I felt that it was a better option. You pay up front with a longer surgery and revisions, but you save in the long run by not having to do fills and swaps.
I liked the idea of having only my own tissue and I was not thrilled with the expander. Since I respected Dr. Chu and felt that he had my best interests in mind, I decided on the DIEP.
I had my DIEP surgery on 12/10, so I am just 3 weeks out, but I am completely happy with my decision. I would do it again in a heartbeat.
Question 2: What analogy can you provide about your pain level after lumpectomy/mastectomy? After reconstruction?
I had the BMX with immediate reconstruction using TEs. It was extremely painful. The pain pump helped, but I was nauseated and omitted during the night after surgery, so that didn't help at all. I took narcotics for at least 3 weeks.
Worse than the pain was the lack of mobility. Imagine your elbows being tied to your waist. That is all that you can move. I could not get myself in and out of bed. I couldn't even pull up my sheets. I needed help with showers for about 2 weeks using a shower chair because I was too tired to stand for the length of the shower.
I needed help all day long for about two weeks. After that, I started getting enough range of motion in my arms that I could reach into low shelves. I was not permitted to lift more than 2 lbs for about 6 weeks, so I couldn't grocery shop on my own for several weeks. I drove at 2 weeks, but I was pretty sore doing it. I didn't feel pain-free driving for about 4-6 weeks.
Question 4: What analogy can you provide regarding the expander experience?
Apparently there is the famous "iron bra" feeling with the TEs. I had missed the memo, but I figured it out pretty quickly! It felt like there was a tight strap around my chest even when I was naked. I could take a deep breath and it didn't hurt to do so, but there was a strong pulling sensation. It was like wearing a very tight bra that you could never take off.
The iron bra feeling did subside over several months. I was surprised that when I had the TE removed on the left due to infection that I still felt the iron bra feeling on that side. I have since learned that it is scar tissue formation under the muscle. It is a sad reality of reconstruction.
The doctor did not put anything in the TEs with the mastectomy, so I woke up completely flat. He was planning to start fills at 3 weeks, but I never made it to that because of infections. So I was flat for 7 months. I didn't want to mess with prosthetics, nor do I think they would have worked with the extra skin from the skin-sparing mastectomy.
Once the fills start, you begin to fill out, but they need to fill you slowly, adding 60-120 cc's at a time, waiting 2-3 weeks between fills, so it takes awhile to "grow." So, it is likely that people would be able to tell, unless you wore clothing that wasn't too form fitting.
I felt somewhat embarrassed being flat at first, but since there was nothing I could do about it and I had months to wait, I just made do. My PS wanted me to wear a sports bra, so I got one with a little padding and called it good. I teach homeschooled students once a week in a co-op class and all my students knew of my BC, so I just let it be. When I started to get fills in the one side that still worked, I was lopsided, but it was SO NICE to see a breast forming! I am sure I looked odd, but no one said anything, bless them.
When you get the TEs and once you heal they can start filling them. The first fill was pretty easy, but the next two were a little more uncomfortable--stretchy pressure under the pectoral muscles.
All through the time I had expanders, I hated the feeling I had whenever I used my arms, especially lifting things. It was worse when the expanders were filled. It wasn't painful, just weird, and made me not want to lift things. Other women I talked to said that their breast would change shape when they lifted something.
Once I had decided on my DIEP, I was ready to get the expander out.
Question 2b: What analogy can you provide about your pain level after reconstruction? (DIEP)
The pain was much better after the DIEP flap. I found I had full use of my arms right off the bat, so I had to think about not reaching for things because they recommended not lifting my arms above the level of my shoulders at first.
There was no initial iron bra feeling--hurray!
Most of the pain was in my belly, but it was mostly a very full feeling, like I had eaten too much.
Because I had to walk bent over like an old lady, my low back hurt, but not badly. Between pain meds and the Valium I asked for (to reduce back muscle spasms), I was quite comfortable as long as I didn't over do it.
I put a dose of pain pills at my bedside, so if I woke up at night, I could take another dose to ensure I was fine all night long. If I slept until everything wore off, it was not too bad. I would just take the meds and feel much better in 15-20 min. The ache-ness I get with the flu is much worse than the pain I felt after my DIEP. As long as I took it easy, I was fairly comfortable.
At three weeks out, I do feel some tightness in my breast area, but it is not nearly as bad as the "iron bra." I am sure it is scar tissue forming again. (You can't get away from scar tissue, even if you skip reconstruction.)
The best part? My breasts jiggle like they used to! Love it. My TEs never did that.
Question 3: How long was it before you could do light duty (such as computer work) after a mastectomy?
After my BMX with TEs, I think I was pretty much out of commission for at least a week. I think after that I was able to answer emails and such, but I was so tired and all that it was hard to really work on anything that took concentration.
After my DIEP, I was working on answering emails and working for an hour to an hour and a half about a week after I was home from the hospital. Again, it was hard to concentrate on anything difficult, but light brain work was OK.
Today at 3 weeks I played a few rounds of Dutch Blitz with my kids, so I must be doing pretty well! (I even blitzed out once, and my girls are quite competitive! Hopefully I won't pay for it tomorrow.
Question 5: How would you rate your satisfaction level with your reconstruction? What do you wish was different?
I am not done with reconstruction; however, I could happily live with the breasts I have right now. They are warm, soft, and mine. They jiggle! They look great under clothes, even form fitting ones. (I had fun showing them off in outfits over Christmas. My girls thought they looked amazing.) I even have cleavage.
I think I had unusually good luck on how I looked right out of the gate. I am looking forward to finishing, though. In about 3 months I'll have "Stage 2" which may involve cleaning up incisions, reshaping breasts, fat grafting, creating nipples. There could also be a Stage 2b, 2c, etc.
From my reading on the 2014 forum, I realize there is a lot of ups and downs about how women felt over the months as they continued through their reconstruction. It is a lot of work, but it is all up front. Remember that with expanders, assuming everything goes right, they need to be changed out every 10-15 years. Scar tissue can make them crooked. They can migrate up, down, or out to the sides. An older friend of mine somehow kept hers for 20 years and then got an infection. She had it changed out, but now it is all wrinkly under the skin, so she needs to go back and get it fixed.
Questions 6 and 9: If you went thru reconstruction, what analogy can you provide regarding the amount of feeling you have in your breasts, if any? How did you overcome any potential doubts about your femininity? Sexuality?My BS said that 90% of breast cancer is above the neck. Boy did he get that right!
I can tell myself that I am a woman without breasts, but it was really hard to get my heart to agree every time I looked down to the mess on my chest. I hated being flat and cried over it quite a bit. The one good thing about the infections and the time I spent flat is I know for a fact that this is not for me, although some women are happy with it. That knowledge gives me the courage and stamina to continue on with reconstruction.
I was also worried about intimacy with my husband. I am 55, so libido in the midst of menopause is at an all-time low. How would I manage without my breasts??
Bottom line: it didn't mess it up one bit, which is pretty amazing.
I can't feel the skin over my breasts or under my arm where they did the sentinel node biopsy. There is no incision under my arm, but they must have cut nerves getting to the nodes. That is really a weird feeling.
Over time, some of the sensation does return, but it is different. For example, if I feel an itch on my breast and I scratch, I cannot feel myself scratching. But if I rub my breast instead, it relieves the itch and that sensation feels fairly normal.
When my husband and I first returned to intimacy while I was still flat, he focused on other areas of my body. We had always focused on the breast, so it was pretty cool to discover that others areas of skin (belly, thigh, etc.) were pretty excitable places, so we focused on those. I wore a tight-fitting tank top or camisole, and it sufficed to get things started.
It took awhile for me to be comfortable with him touching what was left of my breasts before the fills, and he didn't do that much. Once the fills started on the one side, I found that having my breast stroked and held was very enjoyable. Again, I didn't have light touch sensation, but it felt pretty normal to be stroked or held. I suspect my brain filled in a lot. Nerve sensation does return to a degree, but it takes a long time (months? years?), so I suspect that I'll be getting more and more back over time.
Now that I have had the DIEP, it is really nice to have 2 pretty full breasts that are warm and soft. We have not returned to intimacy yet (recommended to wait 3-6 weeks), but I am looking forward to it. My belly has pretty good sensation. I can't feel the incision itself, but I can feel right above and below. If anything, it is super sensitive, so I have been rubbing/stroking it during the day to calm it down and get it used to being touched.
Communication is key to figuring out this new normal.
Work?
I am self-employed and homeschool my kids and teach others, so I can't really speak to the work environment. I can say that I have told some people in my life, but not all. It is too hard to explain, especially when the reconstruction takes unexpected turns. The people I told were those who loved me and were encouraging.
I do writing for a company in another state. I keep close tabs with a group of women there and general updates with the rest of the gang. I am grateful for our church, who in addition to prayer and verbal encouragement have come alongside and provided the help that we needed (meals, driving, etc.) along the way. You will need help, so take advantage of those in your circle who can come alongside.
If you do a DIEP with your MX, you should be able to go back to work at 6 weeks unless your work requires physical labor. After a second stage, I understand it is about a week or two off. You may need more than one second stage revision.
I did not need chemo or radiation, so I can't speak to those, so others will have to chime in.
If there are any complications, you will need more time, so it is hard to tell what you will need.
Lumpectomy versus Mastectomy?
I did not get the lumpectomy, so I am not speaking from experience, but when I was looking at before/after pictures of breast recon, I did see some pics of lumpectomies. When I think of lumpectomy, I thought it was just a small chunk of the breast removed. In some cases, it can be half, and the scars can be awful since a PS is not involved.
Also, because lumpectomy often dictates the need for radiation, you have to consider what the rads will do to your skin and surrounding organs. I didn't realize what damage radiation can do till I read more here. So, those are some questions for your BS and your oncologist: what is ahead of you and how will that affect your options?
Concluding Thoughts.
There are no easy choices, and you have to do what is best for you and then trust that you made the right choice. Fortunately, if you go with implants and decide that you don't like them, you can always go for something else, but you will lose a lot of time. I feel like I lost a whole year this year dealing with BC, and I am still not done.
It is a long journey, but in my case I am glad that I have moved along with the reconstruction, even with the bumps in the road. I have learned a lot about myself and my family has grown through it all. My marriage is stronger than ever, and I am much more appreciative of life and those around me now.
One last thing: take your SO or a close friend with you to your doctor visits, especially in this initial phase. You won't remember half of what they said, and it helps to have someone else along to help with questions and to discuss afterwards. You'll be assembling a team of people to care for you at this time, and you need to feel like every one of them is on your side. Take your time to choose the right ones. You'll be depending on them.
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Pink, have you seen an oncologist yet? Sounds like you need that feedback to decide what to do.
You can get a skin-sparing mastectomy, so that would leave your natural droop and skin which will make recon down the road easier. However, it seems like getting immediate recon makes more sense to be under once. But it sounds like the decision to go one way or the other depends on the oncologist weighing in?
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Hello BigSister -
After crying all day yesterday, my husband convinced me to go our closest friends' house in the evening to bring in the New Year. I didn't really feel like going, but it ended up being nice and several large glasses of wine allowed me to sleep through the night. After a long talk with my husband this morning, we spent the day out with my mother-in-law, so I'm just reading responses after my last post now.
I want to thank you so very much for all the information. While I've gotten a variety of good responses, there were a number of things in your post that I found to be EXTREMELY helpful. I shared some with my husband - especially about the expanders because that is one of the things I'm most apprehensive about and I think for the first time he may just have an inkling why (even though I've been trying to explain I think he might've thought I was making a mountain out of a molehill). I also appreciate your recommendation for literature to read. Makes me sort of wish I'd come to this site sooner - as my holiday vacation is almost over.
I plan to read your post again tomorrow to absorb it even more, but I do have one question I can think of right now (as it's a topic I've been researching tonight before coming to this site) - the sentinel node biopsy . . . was that prior to any of your surgeries. It is my understanding that one of the very biggest reason that they do not do BMX and then immediate DIEP-flap surgery (and I actually need to confirm this on Monday as the nurses info about this is different than what I understood from the PS when I met with her) is the concern about lymph-node involvement and having to do radiation if there's a positive node involvement, which ruin the stomach tissue.
I was reading and it appears that sometime a SLN biopsy can be done prior to a lumpectomy/mastectomy. Right now my IDC is clinical Stage 1 (not sure about the A/B part of that) and they don't think there's any node involvement. I thought if I could have the SLN biopsy prior to surgery, get those results back - then I could be at least a tiny bit more sure about whether the lymph are involved or not in order to perhaps push for no use of expanders (though I do understand about false negatives/positives, which is why I've also been researching different types of rads - like IORT). Anyway, just curious when that biopsy was done for you.
Also, in answer to your question - no, I've not seen an oncologist yet . . . well, not since I switched facilities (and while they don't seem to get the medical oncologists involved until after the surgery - that's another question I have for Monday; I think I should get to meet with one prior to my surgery). Well, it's late and I have an appointment tomorrow morning. Thanks again for your response!
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Hello jlstacey -
Yes, my facility (well at least the nurse I saw yesterday to see reconstruction pics) is saying that they don't do immediate DIEP anymore because of the potential need for radiation and what it does to the tissue. That is a concern of mine and what I'm trying to figure out now is if there is a way to know ahead of time (perhaps a pre-BMX sentinel node biopsy or some alternate radiation like IORT) to take the radiation thing off the table.
It truly is a shame that while a person is trying to absorb just the diagnosis that to make sure you're not just being given some "this is easiest" advice/recommendations, one must also do research ~ especially when one has their family pushing you not to delay surgery. In some ways I do feel since my initial diagnosis of my one breast the end of October - two months later is a lot of time not to have undergone surgery, but at the same time - such a short time (especially with two holidays in there and all kinds of additional testing that did not result in knowledge of the cancer in the other breast until the first week of Decembe)r. Part of my job entails research, but I swear I've been on overload trying to learn and also have a life to include holiday time with my family.
In answer to your question I have iDC clinical Stage 1 (not sure about the A/B). My one tumor is 1.7 cm. I don't have a copy of the pathology report for the other cancer in the other breast, but it is also IDC clinical Stage 1 (not sure about size on this one - I imagine smaller as I can't feel that one, but maybe that's just because it's located differently). One is a Grade 1 and the other a Grade 2 (can't remember which at the moment). Both are ER/PR positive and HER2 negative. The PS/BS are both on board with the skin-sparing - PS has not recommended nipple-sparing (have not talk to the BS about this yet).
Well, it's late - thanks again for your response!
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Hi Pink,
Glad you were able to have a good cry—I have had quite a few of those this year, and they really help.
It is really frustrating trying to wrap your head around breast cancer and reconstruction options. I am an over-the-top Type-A person and can usually conquer anything I set my hand to. I am also an RN and a teacher, so my background helped me learn a lot this year, but I certainly have not conquered the subject. It is more like herding cats. (For a good laugh, google "cowboys herding cats video." Here is a link: https://www.youtube.com/watch?v=Pk7yqlTMvp8 )
Sentinel Node Biopsy
I am not sure that you can have the SNB done on its own, or even if you would want to.
What they did for me was inject a dye or contrast a few hours before surgery. Then during surgery, they tunneled over to collect the nodes that filtered out the material—the first nodes that the breast drains into. They removed 4 nodes in my case.
After surgery I noticed that I had numbness in my underarm on the SNB side. It has gotten a little better over this year, but is still pretty numb and feels pretty odd when I shave or wash there. This is because they had to cut nerves to get to the nodes.
If they were to do the procedure separately, they would have to make an incision in the underarm to get to the nodes. I am not sure if more nerves would be cut by such an incision or how much easier/harder it would be to recover from.
Pathology
I am not sure how much an early SNB will buy you because there is still the rest of the breast to examine. After a mastectomy they send the entire, intact breast to the lab. The pathologist carefully examines the entire thing and checks the margins—the area around the tumor. This lets them determine the true size of the tumor. They also look for additional problems that might turn up elsewhere in the breast.
The good news (if there is any good news in the world of BC) is that you are ER+/PR+, Her2-. That is easier to treat than some of the other combinations.
I did not see an oncologist until after the fact, but I already knew what I had to do because I had been working with a geneticist for a couple of years after my BRCA2+ diagnosis. I contacted her after my diagnosis, and she was very helpful.
That is where an oncologist might come in handy--to help ensure that you are getting all the help up front that you can. I had a friend who was diagnosed with BC this spring. After seeing everyone, they had a big team meeting with her in attendance where everyone could share their findings and help her come up with what was best for her. It is sad that not all facilities have that kind of integrative team.
One of the things her docs order was the OncotypeDX because that score can help determine the likelihood of recurrence. There are also genetic tests depending on the history of cancer in your family. Those tests can help you decide how aggressive to be surgically. I suspect it is the oncologist and geneticist who are helpful in ordering those kinds tests.
Nipple Sparing
I could not have the nipple-sparing because I am BRCA2+ so I could not risk leaving any tissue behind. A few of the women on the 2014 forum had it, but not many. I am not sure it is all that helpful. There is a risk that the nipple might not make it, and I am not sure if you would even have sensation afterwards because of nerves being cut. I suspect it is mostly for cosmetic reasons.
Also, check with your plastic surgeon regarding how he creates the nipple. Some simply make an incision in the breast and do some kind of origami to create it. Others take a strip of skin from the fold in your groin to create nipples. (One lady I talked to was not so happy about that! She had implants. I know my DIEP surgeon just does the incision thing.)
I have seen several women's breasts after the fact, and they are pretty amazing with fake nipples. The docs do a good job reconstructing them, and a good tattoo artist can do a 3-D tattoo that makes them look like the real thing.
I kept reading on these forums that women all over the nation were having their tats done by "Vinnie." Someone posted a NY Times video about him—pretty amazing. I am either going to see him or someone comparable when my time comes. Here is the link. If it doesn't work, google "Vinnie nipple tattoos times."
http://www.nytimes.com/video/health/100000002915699/the-nipple-artist.html
Support
Just as important as researching your options is building your support team. This forum is tremendously helpful, but you still need people in your daily life to help you.
It sounds like your husband is your first line there. Listen to him! His wisdom will come from a much clearer head than yours, and it gives him something to do with his fear over your condition. It will strengthen your marriage as well.
In addition to my husband's help, I sent a group email to five close friends in my business world. We are all managers, and are very close even though we live all over the nation. Two of the five have a history of breast cancer, so that was helpful. They helped bring another rational mind to deal with my fears.
They were also helpful as a buffer with the rest of the staff in the company. They ensured that I didn't get pestered when I was down and they helped me know when it was time to let everyone else know how I was doing. My company is very supportive, so it is a good environment to be in.
My church was also helpful. When I was first diagnosed, everyone wanted to know what they could do to help. I asked them to send me bible verses for encouragement. That turned out to be so helpful! I wrote out the suggestions on 3x5 cards along with the name of the person who suggested it. When I was struggling or down, I would go through some of them. Not only did the verse help, but the name up in the corner reminded me that there was someone out there who cared deeply about me and my welfare. It brought comfort.
It was interesting that some of the verses that didn't mean a lot early on made a tremendous difference at different stages of the year. I still have them, and they bring me great joy.
So, find your rock on which you can stand. Then when the winds and waves of this disease hit you, you won't be washed away. Invite your support team to help you keep your footing. If you don't have a rock, it is time to find one.
I am so glad that you listened to your husband and spent time with close friends and good wine. It helps to get out and think about something else for awhile. Wine indeed makes the heart glad!
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Hi ladies. I am joining you on this 2016 thread. Did not have reconstruction with my bmx, did chemo and 33 rounds of rads. After consulting 3 PS and stories from others with bad TE experiences, it appears diep flap is my only option. The last, highly recommended PS I saw said they have an 80% failure rate and she doesn't like the trams because if the muscle. She says i am a great candidate for diep. I am a teacher, so the best time to have the surgery would be June. I am seriously considering it, although it scares the crap out of me. I don't really like the thought of a long recovery as I am impatient and this cancer already took a lot of time from me. I would love cleavage and a tummy tuck, but I haven't decided if the risks are worth it. I am hoping to learn from everyone's experiences. I did have a cat scan last week to check my vessels. I had a complete hysterectomy last year so PS was concerned about that.
Pink, I remember being where you are now. I was 50 at dx and I felt my whole world collapsing. My GP out me in Xanax to relax and sleep. I had very dense breasts and had normal mammograms leading up to dx. This cancer snuck up on me like lobular does, and I did not hesitate to get the bmx. I have not looked back. I know women who are really happy with their implants, and I know others who have had issues. Unfortunately at this point implants are not in the cards for me. The women on this forum are wonderful and are what got me through the darkest days. I will pray for you
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smrlvr, welcome to the group. I trust you will find help here.
I am not sure what you mean by "I would love cleavage and a tummy tuck, but I haven't decided if the risks are worth it." Under the hand of an experienced surgeon, the risks of a DIEP are pretty minimal. The failure rate is not very high--less than 1%.
I read through most of the 2014 DIEP forum which had over 100 women listed. Only two had flap failures, and theirs were due to problems that put them at high risk. Usually, everything goes fine.The surgery is long, but you are under a fairly light anesthesia, so that really isn't an issue.
The biggest concern for me was the hip to hip incision for the tummy tuck part. I can't imagine why women would want to do this for cosmetic purposes, but if they are willing, it can't be too bad!
Ask any questions you have here and we'll do the best to answer. I also highly recommend reading through the 2014 DIEP forum. I have been working on it for awhile, but it was reading the experiences and advice of those women that gave me the courage to move forward with my DIEP, and I am so happy that I did.
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Pink: I had DIEP with immediate reconstruction and rads after. Had my DIEP in Sept in and rads finished on Nov 25. So far, it hasn't affected my foobs at all. The skin has healed very well. I am 52. I had multifocal and positive nodes. I had two nodes that had micromets in them at surgery. One BS recommended having more out and mine said don't do it. I know you have a lot of info coming in and you are trying to process it. To me, the most important thing in having a DIEP is WHO does it. It isn't something you want to have done by someone who hasn't done many of them. AFter reading on here a lot, I decided to go to NOLA for mine and I am glad I did that. I had very little pain after my surgery. Conversely, my manicurist had the same surgery locally and she had a lot of pain.
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Good Evening,
Have any of you that had mx and immediate DIEP, did you find that after two weeks or so that another level if pain started? At first I was very numb almost all over, now I think I'm feeling the mastectomy and am aware of all my incisions, more pain getting up and down. I had weaned myself to 2 pain pills per day, now I need more. Just hoping this is another stage and will simmer back down soon, I also have a low temp for a couple of days 99.9 - 100.6 ish. Could also just be the temp making more achy overall. Dr is not concerned.. Two steps forward, one step back.
Just wondered what others had experienced.
Thank
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BigSister -
What do you mean about failures for DIEP flaps? How does a DIEP fail? I understand about nipple-sparing because if nipples are lower and your veins are more like a bush vs. a tree then there might not be enough blood flow for it to survive (and then you're stuck with that nasty horizontal scar when it fails and it has to be removed), but I haven't heard or read about any other type of failure with DIEP.
Also, thanks for the other additional information. I've already downloaded the one book you suggested in your first post and, after catching up on this thread tonight, will be reading it as much as I can before speaking with my BS on Monday.
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Hello smrlvr -
Thanks for your kind words. I do have a script of lorazapam (sp?) from my PCP that I had to see recently for an ear infection. He's been my PCP for many years and my son actually interned for him. Anyway, when I was diagnosed and was trying to research for doctors, my son reached out to him for recommendations. So, when I went in for the appointment we had a really nice talk and he provided me with a script. I've had to use them a couple of times so far as sometimes I've just been unable to turn my mind off, but on New Years' Eve . . . I wanted to be able to have some wine so I didn't want to mix. With that in mind, I just drank a little more than normal to make sure I'd sleep (that's not terribly hard to do as wine generally makes me sleepy). Long and short - I do have an actual script - and I'm really thankful for that!
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Pink, the flap can fail by the blood supply getting cut off in some way. It can happen if the vessel gets a clot or if the vein cannot drain what the arteries are sending in. The attachment can sometimes fail, but it is usually the former problems.
They give you heparin to thin your blood right at surgery and have you on aspirin a month to keep it from clotting. They check the blood vessels every hour for at least 24 hours to ensure they are functioning well.
Again, it is less than 1% of the flaps that don't work and have to be removed, so it is very uncommon, but it can happen.
None of the reconstruction options come without risk, but then neither does getting into my car to drive to the store, and I do that without a thought.
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NotAgain, I ran into trouble at about two weeks as well. I wonder if part of it is that we start feeling better so do a little more and get into trouble. I had to go back to the narcotics after essentially being off. It could also be that now that the worst of the healing is done, other parts of the body are finally getting a chance to be heard.
I am now over 3 weeks out and I am doing much better. Hang in there!
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Trvler -
What type of radiation treatment have you had? I've been researching as much as I could between the mastectomy recommendation the first week of December (just after getting back biopsy report for other breast biopsy that also came back positive), but with Christmas have not had as much time as I'd hoped and have just started trying to learn about the different types of radiation (especially after the PS's nurse informed me on New Years' Eve Day that my facility doesn't do immediate DIEP - which was not my take when I met with the actual PS, so I need to clarify that). Anyway, knowing this might be helpful for my next conversation.
Btw All - For those of you that did not have an aggressive form of BC, how long was it between your diagnosis, other testing, and your actual BMX? From the time I noticed a lump to the first diagnosis was a month with all the various testing, from the original diagnosis to the diagnosis of the other breast was another month, and now since then and now has been another month (this latter part being my desire not have any type of surgery prior to Christmas). I ask not because I'm not trying to delay, but I'm also trying not to rush before I've figured all out. However, my BS called last Thursday (I missed the call) and is looking to see if I've made a decision in order to schedule my surgery. I really do want to get things taken care of this month if at all possible, BUT I do still have a variety of questions after my meeting with the PS's nurse and after reading some things on this site. So, just curious what the average time seems to be between learning and taking action. I recognize that I'm NEVER going to be a complete expert on all this, so I'm never going to be completely question free and am going to just have to take the jump, but was just wondering. Thanks!
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thanks BigSister, good to know similar for you!
Pink, for me, for my first diagnosis, 2 months, my second, 1 month, for this big round, 6 weeks. Also, my BS was more in charge than the PS or MO in the beginning. Once you have whichever surgery you choose, they will check your sentinel nodes and further evaluate the tumor after it has been removed, and that will help determine next steps.
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Thanks NotAgain! Seems like we're similar in our BC types. Did you discuss the possibility of the potential need for radiation and what that might possibly do to the tissue with you BS/PS? Or are you one of the ones that that's off the table for because of previous treatments? I do remember reading that - without looking back just not sure if you were one of those folks. I'm afraid I may have a fight to get my immediate reconstruction without expanders. I REALLY wish there was a way to know nodal involvement prior to surgery. Seems like they really need to figure that out so women can opt out of the nasty expanders more easily if radiation doesn't have to be a concern.
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Hi Pink,
For me, radiation was the easiest part. Each time I had 30 rounds. Things may have progressed in 5 years and maybe they target it more, The only thing I did different was to lie face down for my rad treatments, it allowed the xray to cross less of my ribs and big organs since I was larger chested and my tumor bed was more in the middle or towards my nipple. Most people lay on their back. You will have plenty of time to make the radiation decision after your surgery. They let you heal a bit before you start. Fir me, tamoxifen started after radiation ended.
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PS: I would suggest you also read the DIEP 2015 and 2014 threads. Sure seems as though plenty of women still have rads afterwards. When I was first diagnosed, DIEP was an option though back then I believe they were still using abdominal muscle, which they no longer do and has made the surgery much easier.
Hang in there Dear Pink, we have all been where you are. It is tough, here's hoping you have a medical team you can trust.
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Hi Ladies!
Hoping 2016 will be my year for recon. I have been sort of trying to lose weight beforehand, but not with any real conviction. I start in ernest on Tuesday, and hoping to get close to my goal weight between June -August. ( i have put on a ton of weight and all the drs i have spoken with say i should do that before DIEP, since the fat doesn't know it is your breast once it is moved, and I would lose all volume.)
I had a skin sparing DMX in Oct. of 2013, and want fairly small replacements to my former DDs (too dang heavy!)
I am near Austin, TX, and am still looking for the best surgeon possible that my insurance covers. The surgeon that I had picked out has since moved on, so, I am looking forward to hearing about your experiences with your dr's. So please please please share your surgeons name and city.
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I had a nice little surprise last night as I changed into my jammies in the bathroom. When I pulled off my shirt and glanced in the mirror, I had a momentary sense of surprise to see scars on my breasts instead of their usual, pre-BMX, selves.
I just had to laugh. The new girls feel such a part of me that my brain forgot they were fakes!
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Pink: What grade is your cancer? Can you post your diagnosis in your signature? Have you not had an MRI? Don't let a BS pressure you into rushing to make a decision. Unless you have a fast growing tumor, it might not be necessary. I found out about my nodes in the MRI.
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Hi everyone,
Thank you so much, especially BigSister, for sharing your experiences with such candor and detail. I'm in the midst of my neoadjuvant chemo and having to make the decisions now of lumpectomy vs. mastectomy, then TE/implants vs. DIEP. I had been told by my BS that I wasn't a candidate for DIEP (it would only make one small breast), but the PS I saw last month in a very overwhelming and upsetting appointment told me that I was in the 'sweet spot' and could get two breasts out of my own tissue.
Since then, I've been weighing options and getting over the shock that DIEP is an option. I'm so glad for this thread and will also go back and try to read the 2014 and 2015 threads to get a handle on their experiences as well.
My surgery will likely be mid to late March. I definitely want to be as prepared as possible, particularly since my husband is concerned over the recovery time and the inconvenience it will mean.
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Trvler -
Okay, I changed my settings. What I know is posted. Currently they believe I have no node involvement, so I guess that would put me Stage 1A, but I've not had any info provided about my nodes for sure. The only pathology report I have says Grade 1 for the one breast, but if I remember correctly the breast that was diagnosed in December was Grade 2. I'm going to be asking for a copy of the pathology report on Monday.
So, that's interesting about the MRI and your nodes. Is that as accurate - as in if it doesn't show in the MRI then I'm for sure node negative?
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CarolinaAmy, I am so sorry that your PS appointments have been stressful. After all the troubles I had, I started to have my husband attend all of my appointments with me. I got much better information and respect with him in the room. Sad, but true.
Like you, my first PS told me I was too thin for a DIEP, especially to do 2 breasts. I believed him and went with the implants he suggested. But when implants weren't working because of infections, I traveled to a teaching hospital that my BS suggested and the DIEP PS said that I was the perfect body type. Apparently they prefer someone on the high side of normal. It seems like you'd have to be very thin not to be a candidate.
When I asked the DIEP surgeon what size the DIEP might give me, he took both hands and pinched my belly to show me. Basically grab as much fat as you could get in each hand. (He really pinched hard, but it gave me a good idea!) The amount he pinched looked good to me.
He also said that after the fact, they could do as many fat grafting sessions as I wanted to give me the size I wanted.
Since I still had an expander on one side that I had had one 120cc fill in, I asked if I should get anymore fills. He recommended going to about 300 because then they could do a smaller flap on that side. (It wasn't that much smaller after the fact, but a little smaller.)
300 cc turned out to be like a small A. After being flat for almost a year, I was thrilled with that little bit! So I felt like I would be happy with whatever I could get.
Although the doc didn't recommend gaining weight for the sake of my health, I did eat extra high quality calories to gain a little weight (a few pounds), so that likely helped.
When you wake up from the DIEP, the breasts are prettyswollen. I woke up to see good sized C breasts. I cried with happiness.
They have since calmed down to a solid B, and I am delighted. I think they are pretty close to the size that I used to be so long ago. They feel so right.
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Hi all. I had my diep stage 1 surgery on Oct. 19, 2015. It's been about 11 weeks now and my wounds have healed nicely (finally). I'm still a bit unnerved by all the numbness, but at least the tingling and burning across my chest is long gone. As I've healed up from surgery, I've noticed more of the post chemo side effects. Lots of aches and pains all over...as if I suddenly have arthritis all over. I've been taking gabapentin at night to manage some of the neuropathy issues, but I don't think it's really doing much. It's supposed to help with the hot flashes as well, but it's not helping that either.
Anyway, I've just gotten my stage 2 diep date. It's scheduled for March 3rd. I'll be in the hospital for a 24 hours observation. I'll spend 1 more night in the hotel before we fly home. I'm only supposed to have to go back for 1 post-op appointment at about the 4 week mark, so I hope that means that I won't need any drains this time. I'm not looking forward to the compression garments. I've tried to wear them in the past and always felt suffocated. Other than spitting a few stitches I healed really well and really fast, so I hope that my time in compression is limited in duration.
Best wishes to all of you heading in for surgery in the coming months. Those of you facing diep stage 1, you'll do just fine. It's rough, but completely manageable. Take it all one day at a time.
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My hot flashes are due to menopause, which started even before I had my ovaries out (prophy for BRCA2).
One thing that helped with the hot flashes was juicing A doc had us start that for a daughter with adrenal fatigue, so while we were at it, we all partook. I found my hot flashes diminished when I cox sisterly drank the juice a day. Whenever we stop, they come back.
We do mostly carrots and a little cucumber. We do about 1/2 to 3/4 cup servings. The juice needs to be consumed within 15-29 min or you lose out on the benefits.
My integrative med doc said that hot flashes are related to insulin levels, and the juicing helps stabilize it. I don't understand the mechanism, but I'll take the results!
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Hello Ladies,
I met with the plastic surgeon today. Looks like my surgery will be late Feb or early March. I should get an exact date later today when my BS office and PS office can coordinate a date.
I'm excited. And nervous.
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Pink: No, it is not definitive. But it's something. Are you having one?
I was told by the first PS I went to I would have smaller breasts with a DIEP. I went to the guy in NOLA and he asked what size I wanted and I said the same as I am now, which was a B. I fit into the exact same bra I a wore before the surgery. He did an extended DIEP. It's ESSENTIAL to get someone who has a lot of experience with this surgery. It's not like getting your tonsils out.
I should add that an extended DIEP is when they make the incision from hip to hip. I am not crazy about the scar but I didn't want implants.
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