Reconstruction

Elizabethtx · 04-22-2011, 12:08 PM

Hoping to get some sage advice or just thoughts on your experiences. I will finish my year of herceptin in May. I am considering reconstruction and it is consuming my thoughts! According to the surgeon who did my MX all is ready. Not sure if I am! This past year has ben long, with every treatment possible. I finally am starting to feel "healthy" again. I now know why the docs are so pushy about having immediate reconstruction! If you wait you agonize over the decision to go back into surgery. It also seems to me to be a leap of faith that I will stay NED. I know you all have wrestled with your choices. It seems so small compared to treatment for C, but here I am asking for advice. Would you do it all the same again? Did RC bring normalcy? If you don't wish to respond on the thread, please message me. I know others out there are wondering the same thing!
Elizabeth

chekmark · 04-22-2011, 02:53 PM

Good luck with your decision. My doc told me she wanted me to wait until I was done with herceptin before getting reconstruction which will not be until November but I cannot wait .She said they want to monitor the area closely and also does not want me to have any incisions while on it. I would also like to hear some responses. I will do as she asks but for my sanity I wish I could get it sooner. Lots of luck to you. And congrats on almost being at the end of treatment.

Margaret Eleanor · 04-22-2011, 03:30 PM

Been lurking a long time, but this is my first post. I am adamant about reconstruction and this topic has over come my superstition to post.

I find your thoughts on reconstruction and the pressure (implied in your message) from your plastic surgeon interesting. Based on inital meetings with my surgical oncologist and my first plastic surgeon, the plan for me was bilateral mastectomy with immediate tissue expander placement (because DIEP would keep me out of commission for so long...my 11 year old daughter plays club soccer, sings and plays piano, and I do not want to miss anything).

I checked in with my plastic surgeon after six months of chemo, and before mastectomy, just like he told me to do. He changed his mind and doesn't do tissue expanders before radiation any more. In fact, his exact words were "I don't know why you're here. You must have slipped through the cracks. I recommended delayed DIEP for you and I will no longer put in tissue expanders before radiation. There's nothing I can do for you. Come back after I get back from my fellowship in July 2011." I was devastated. I cried.

Last week I went to see a different plastic surgeon in the same practice and he refused to even consider putting in tissue expanders and implants since I've had radiation. With ZERO discussion from either him or his partner on DIEP (I cut off DIEP discussion as soon as the original PS told me I'd be in ICU for 4-5 days and overall hospital stay of 5-7 days), he went on to tell me that I have unrealistic expectations of the outcome of DIEP, the extended recovery time of DIEP, and he does not consider me psychologically ready for any type of reconstruction. He says Herceptin has nothing to do with his decision. I was P!$$ed. I threw my purse at the closed door after he left (pretty much cementing, for him anyway, that I'm not psychologically ready). I have a hard time accepting him telling me I'm not ready for reconstruction, but he is the same PS that will do a boob job, lip job, or liposuction on an 18 year old girl for graduation.

I am frustrated and confused! I need some information, education and advise. I do have an appointment with a totally different PS, different practice, everything, in about 10 days. I will bring my purse and try very hard not to throw it.

I'd love to hear from others on reconstruction. Why you did or did not reconstruct. What options your plastic surgeon gave you. What procedure was recommended for you. What you chose to do, etc.

My stats: diagnosed 6-1-2010 @ 48 with IDC 4.5cm multifocal tumor right breast, with 2 positive axillary lymph nodes all ER+1%, PR-, Her2+++; neoadjuvant chemo, 7 treatments with taxol/carboplatin/herceptin 7-12-2010 three weeks on, one week off; then taxol/herceptin 9-13-2010 to 10-11-2010 with no break, 4 dose dense AC 10-25-2010 to 12-6-2010; surgery 1-4-2011 pathology shows nodes pCR and 4mm breast tumor remaining (a satellite of the primary tumor); 30 rads (including 5 boosts) 02-21-2011 to 04-1-2011 (no foolin!) continue Herceptin until Oct. 2011; currently on Arimidex (but not for long...LH and FSH are falling, expect rising estradiol when blood is drawn next week)

Jaimieh · 04-22-2011, 04:29 PM

I had reconstruction done at the time of my surgery and it failed only after I had my implant exchange and then another exchange, removal of all implants followed by removal of all scar tissue. After that time I was told by my local PS to find a good option that didn't include implants because of my bodies reaction to them. So I sat from Sept. thru January without anything except for prostetics to heal and at the end of January 2010 I had hip flap surgery in NOLA.

Sorry for the story but I figured that I would give you my side. While I had my implants I NEVER forgot that it wasn't my breast. I had pain, tightness and was just in a constant state of discomfort.

After I had my hip flap surgery I was never in constant pain. I had to spend 10 days in NOLA but once I was home i was off the pain medication within 2 days and I was driving. I went to my kids games I was just slow and made sure no one bumped into me. I was not flat out for 6-8 weeks, I was up and turtling along. I went back for 2 more surgeries because I wanted to look the best that I could. After stage 1 I looked better than a lot of other peoples "after" pictures but I wanted to look the best possible for my body. I now a year out forget about my reconstruction which IMO is a step in healing and recovering. I love my girls. I was never in an ICU, I was only under for a little less than 5 hours for bi-laterial flap reconstruction and within 24 hours I was up cruising the halls.

I wish you the best just make sure whatever you do, do your homework.

Elizabethtx · 04-22-2011, 08:24 PM

Margaret E,
To clarify, at the original diagnosis I visited a PS on the advice of the onc and surgeon. There was tremendous pressure to have immediate reconstruction, DIEP being the primary choice. I could not deal with all that and figuring out the protocol for the cancer diagnosis itself. I chose to delay and was told after surgery it was the right choice considering I had 2 positive lymphs that did not show up on pre-surgery scans. Because of the tissue sparing MX I also ended up with close margins! From what I understand now the radiation makes saline/silicone implants very unlikely.

I am not set on having any reconstruction. Just feel like because of the tissue remaining I must make some decision. Leave it like it is or DIEP. I am not looking forward to 5 days in the hospital and 6 week recovery! It is so difficult and personal. Hope others are willing to share their choices to help us along in this process. Glad you posted!
Elizabeth

Lauriesh · 04-23-2011, 07:06 AM

Hi, I had a diep flap, so I thought I would give you my experience with it.

I was originally diagnosed in march, 2005. I had chemo, rads and a year of herceptin that I finished in may, 2006. I had my diep done in sept.2006.
I was 38 and in excellent health. I stayed in the hospital for 2 days and recovery took about 6 -8 weeks.

My kids were 4, 7 and 8 at the time of my reconstruction. It was difficult, but doable with help from my husband. it is a big surgery, but I have no regrets. I am so happy with the results.

I live in MN, but went down to New Orleans for my surgery, as they are considered the best in the country.

Good luck with your decisions

Laurie

Sheila · 04-23-2011, 07:38 AM

I decided to have reconstruction 1 year after my mastectomy. I was part of a study, using a tissue expander that was later replaced with a silicone implant made by Mentor. During my reconstruction, I had a recurrence in the lymph nodes in my neck...they P.S> thought it was a reaction to the tissue expander. I thak God I demanded a biopsy...it was the breast cancer in my nodes, and I was node negative originally. My surgery was fast tracked, so I could begin treatment. I have pain, scar tissue and a capsular contracture. I have been in treatment ever since, and Mugas and echos are a struggle as my implant is on the left, and it is hard to visualize the heart. Even last year, when I had a pericardial effusion, I required thoracic surgery as the implant was obstructing them doing a needle aspiration. Reconstruction is a very personal decision....in my case, I wished I would have left well enough alone. I actually felt less deformed before the reconstruction! 8 years later, i am back to wearing a symmetry shaper to even out what the reconstruction lacked.
Many have had excellent results....if its a choice you make, be sure to research the plastic surgeon...you only want the best...many insurance companies dictate who you can go to.....this is not fair. Do your homework!

Elizabethtx · 04-25-2011, 06:39 PM

Thanks for the responses, starting to think flap surgery, as long as the recovery is seems to have less long term issues. So many people have complained of implant issues. I have an appt with the PS in May to talk about all the alternatives. Only two more Herceptin, so I am really looking forward to that!

Mary Jo · 04-25-2011, 08:00 PM

Hi Elizabeth - I just read your post and would love to tell you of my experience. I was dx in June of 2005. Stage 2B - had right breast mastectomy in July 2005 and started chemo in Augustv2005. March 2006 had left breast prophylactic mastectomy because suspicious area of calcification was found near chest wall. Had biopsy and it was benign but decided I wanted breast removed. All surgeries, chemo, radiation and one year of herceptin were completed by Oct. 2006! I was so happy it was all behind me but learning to live with a cancer dx was hard for me. I NEVER thought of reconstruction and knew more surgery, doctors and hospitals wasn't something I wanted to sign up for. I really was fine being (as I would often say) breastless and my main goal at this point was to be healthy and strong and to get back to the business of living. This was 2006 at 46 years old. Then it was 2008 and I was 48 years old and a 3 year survivor! Things were changing! I was healthy and strong and was definitely back in the land of the living! All of a sudden the thought of having breasts again started like something I might consider. I started doing my homework and realized that the only reconstruction option right for me was DIEP. I met with an excellent plastic surgeon who specializes in DIEP, Dr. John Hijjawi at Froedtert in Milwaukee, WI and the rest is history. I had bilateral DIEP in June of 2008! The surgery was a complete success. I recovered quickly and completely. I have never regretted my decision to have this done when I did. I could never have went through this at the beginning of my journey. No way! I had plenty to deal with then......like living! Having or not having breasts wasn't important to me at that time - living was. To be perfectly honest with you, the hardest part of making the decision to have this surgery for me was that whether I had it or not I was perfectly happy! I didn't have to do it for me to feel whole again, because I did feel whole. I started to feel as if I wanted this for me. I could do it if I wanted too. I was 48 years young and thought ..... Why not? So, I did it.

I hope this helps you somewhat. If you have any questions whatsoever please don't hesitate to contact me.

Praying you will be led to the right decision for you.

Mary Jo

Mary Jo · 04-25-2011, 08:34 PM

Hi Elizabeth - I just read your post and would love to share my experience with you. I was dx in June 2005. Stage 2B. Had right breast mastectomy in July of 2005. Started chemo in August 2005. When chemo and radiation were finished a "suspicious" area of calcification was found near my chest wall in my left breast. I had a biopsy and it was benign, however, at that point I decided I wanted that breast removed. So in March 2006 I had a prophylactic left breast mastectomy. By October 2006 all surgeries, chemo, radiation and herceptin were over. Now I had to learn to live with my new normal and that was hard for me. Reconstruction was NEVER something I thought about doing. I could never have dealt with all that while going through everything else. Especially psychologically. No way! My main goal at this point was to become healthy and strong once again. Not having breasts was never an issue for me....NEVER. I was happy with breasts and I was happy without. I wanted to live again - I wanted to be healthy and I was determined to put this all behind me and to move forward with all I had learned and to start to give back. --- Fast forward to 2008! Maybe reconstruction is something I might consider. I am now 48 years young ( in 2008 that is - today I am 51) I started to think that maybe this was something I could do for me. So, I started to do my homework. After learning all I could I realized that DIEP was the only option right for me. I was afraid of implants and being 3 years out from dx realized DIEP was a natural and good option for me. I met with my wonderful plastic surgeon, Dr. John Hijjawi in Milwaukee, WI at Froedtert and my decision was validated. It WAS a great option for me. I was healthy and strong, both physically and emotionally. So I decided that yes, I was going to do this for me. Not to make me happier - not because I didn't feel whole. Just because I could. You see, I was happier than I had ever been.....actually felt more whole than before cancer. Being (as I would always say) breastless, was ok with me....ok with my hubby....we were fine! But then I thought, why shouldn't I do this for me. What a gift to give myself. After much prayer and soul searching I went ahead with the surgery and in June 2008 had delayed bilateral DIEP. It was a complete success with no complications whatsoever. Cosmetically speaking "they" were/are beautiful. As I had no regrets being breastless, I now have no regrets having had the surgery. It was right. However, dealing with all the "other stuff" first was what I needed to do. I needed to heal physically and especially, emotionally first.

Elizabeth, in some small way I hope my story helps you. I will pray and ask God to lead you to the right decision. If you have any questions please contact me.

Gods peace and love hold you close.

Mary Jo

Mary Jo · 04-25-2011, 08:37 PM

Oops! You now have 2 posts from me. Almost identical. I thought I lost the first post so tried to think of everything I said in the first post and rewrote it. Now I see the first one posted. I will leave it their too. This makes 3! Geez Louise what a pest I make of myself. Haha!

Elizabethtx · 04-26-2011, 03:26 PM

Thanks Mary Jo,
maybe I need to hear it twice! Part of the problem is I am a great big chicken and all my life have avoided doctors! Crazy thing to say after a diagnosis of cancer. I felt like you during the early process could not even imagine thinking about reconstruction. Everytime the surgeon and PS started talking all I heard was blah, blah, blah. Now here I am one year out and the idea is starting to take hold. Thank you for sharing your story, it helps so much!
Thanks to everyone willing to share their experience good or bad!
Elizabeth
,

lisagh · 04-26-2011, 05:15 PM

I had BMX on dx and TE inserted at the time of surgery. At first, I wondered if it were worth the trouble. I was just wanting to get on with the process, but did get the TE put in.
The TE have been ok- just feel stiff. I have been getting expansions during the last several months slowly. I have a very good PS. The last one was a bit uncomfortable afterwards because the size now.
I only have 2 more fills to go- and am hoping to get a date for surgery this summer after chemo! (2 more rounds of TCH to go for me). I was told I can have this done even when on Herceptin by my MO, PS, and BS. The PS and BS are very experienced in the field (I had 2 opinions for everything- that's just me).

Now that I am getting near the end, I am glad that I had this done. I don't think I would have initially without others bringing it up. The TE surgery for the exchange is minor. The TE insertion wasn't long either.
Personally, I don't like recovery from long anesthesia- I was worried about surgery- that's just me. I was glad to go home the day after my BMX and TE procedure and did fine.
My exchange will just be an OP procedure- my PS said probably about 45 min per side.
It's a tough decision. I am glad I had this done- and am happy w/ the type. I can't say though it was easy doing chemo and having fills some during that- but glad it's done. The fills are nothing compared to chemo.
My PS discussed all options for me- he also does many other procedures well. It's a matter of what is best for you. Not an easy decision in this tough journey we are on.
Best wishes.
Lisa

Cal-Gal · 04-26-2011, 05:40 PM

Hi Elizabeth,

I chose to NOT have reconstruction at the time of my bilateral mastectomy surgery.

I have never regretted this decision for one moment.

The only adjustment I have had to make is in wearing clothes e.g. not being able to wear tops that are too deep in the front, otherwise my prothesis shows!!!

I am not even conscious of wearing prothesis any longer(I go flat around the house) when I get ready to take a shower and take off my bra--most days I say to myself-
"oh I forgot!! I have no boobs!!"

Good Luck with your decision,

Hugs,

I dont even think about this

mmoons · 04-27-2011, 10:58 AM

I, too, chose not to reconstruct. I had a double mastectomy in May 2009. I think this was the best decision for me because I am tall and thin. No one can tell. Most all the time I go without any prosthesis.

It is SUCH a personal decision. This just happened to be the right one for me. However, when I made my decision, the "opinion givers" came outta the wood work. I was 43 and single. People were incredibly vocal about the mistake I was making. Crazy, huh? I have loved being boobless and free. I can out-jump my kids on the trampoline. LOL

I feel terrible that anyone feels pressure to do anything that is not in their heart. It is an individual's decision.

Love to you all,
Maureen

Cal-Gal · 04-27-2011, 01:28 PM

Agree Maureen,

This is a personal decision one has to make by oneself, I too had all the opinion givers coming out of the woodwork...I too am single....again, I have never regretting the 'no reconstruction' decision for one moment.

In fact my Dr. shared with me that 100% of the women he knows that make this decision (no reconstruc) are happy and that only about 50% of the women who reconstruct are happy-he feels that it is because they have some expectation of having their original breasts back-of course none of us will ever have our original girls back.

Hugs,

swimangel72 · 05-13-2011, 04:06 PM

Before making any decision about breast reconstruction, including Diep, and other tram surgeries, be ready to read the fine print. I skimmed over that part - and was very upset when I ended up getting MRSA in my abdominal incision. It's so important to find the most experienced PS you can, especially with Diep or other flap surgeries - and be get yourself in tip-top shape. Your immune system needs to be at it's best.......please visit www.hospitalinfection.org to learn the stats of hospital acquired infection and how to help yourself avoid this nightmare. Good luck with your difficult decision!

yanyan · 05-18-2011, 10:26 PM

I am having double MX with immediate reconstruction next week. Did tons of research online and decided to go with latissimus flap with expander for the following reasons:
1.Good cosmetic result on the front ( with skin sparing mx, a circular incision is made around areola. Tissue from the back is harvested and tucked in the chest. A round piece is cut from the harvested tissue and stiched together. The nipple reconstruction and tatooing can usually cover the incision)
2. Latissimus flap tolerates radiation better than implant only
3. I only have enough abdominal tissue for one breast
My surgeon, plastic surgeon and oncologist didn't mention anything about delaying the reconstruction, i am very surprised to be honest since i am stage 3 grade 3. The recovery time will be longer though since there will be additional surgery on the back and ofcourse scars on the back as well. I didnt want to go with only the tissue expander because it does not tolerate radiation very well. i didn't want to take the 50% risk. With lattismus flap, the risk is 20% to 30%. Also, with only tissue expander, there will be a horizontal scar, maybe not as wide as a mastectomy scar but still very visible. It kinda of defeated the purpose of immediate reconstruction in some degree.

dberg · 05-22-2011, 09:24 AM

I see the tx in your user name and can't help but think you might be in Texas. I live in San Antonio and want you to know there is a plastic surgery group here (PRMA) that deals extensively with DIEP, among other autologous reconstructions.

I also delayed my reconstruction and from personal experience it did take 6 weeks to recover completely. However, after a couple of weeks I was able to function very well, just did things a little bit slower.

I know other women that have used this practice. Let me know if I can help.

Westcoastgirl · 05-22-2011, 05:34 PM

Hi all, I had a double mastectomy Jan09 and at the time my ps was adamant that I should wait until everything was done before moving ahead with reconstruction (small implants), which was done Nov2010. I had lots of time to think about it and often thought I would not bother to reconstruct. I took really good care of my skin and the original surgeon left a lot of skin so I could go direct to implants. (I had so much skin and the two sides were very different so that if I had not done reconstruction I probably needed to do something to clean the excess up.) I know with radiation it was iffy whether I would have a good result. It was a lot less surgery (day surgery) than a flap method but it was painful enough, soon forgotten however. I was not willing to have them cut and scar any other part of my body thus implants were all I would consider; that or nothing. I am pleased with the result and can almost wear anything that I used to. I look down and I have cleavage even. I have become partial to padded bras to even everything out and will have a minor surgery in 6 months to fine tune the breasts (make them the same size) and to create nipples. I am happy with the results and am pleased I did it. I am smaller and NOT almost perfect like I was once upon a time but I am happy to be alive and healthy and these breasts were done with minimal surgery and I am pleased with them. Just a lovely perk at the end of all this....yup perky.