Stage IV and reconstruction

[Del]

I was wondering if anyone who is stage IV has had reconstruction, and if you think it's worth it? I was diagnosed in April, 2007, with 7 mets in my liver. After chemo and Herceptin my liver now shows no signs of cancer (since Jan 2008). I am starting to think about the possibility of reconstruction, but I'm leary about recovery time (I have 3 young children and don't really want to be in pain for a long time). Is a silicone or saline implant any easier re: recovery than a TRAM or DIEP? I have an oncology appointment in Jan, and will ask my doctor then about reconstruction, but wanted to have some info first. I know my future is uncertain, and don't want to waste my time on reconstruction if mets will be showing up again, but on the other hand I hope and pray that I will have a long run with this Herceptin! Thanks in advance for your help!

[Lien]

I have no info about reconstruction, as I had a lumpectomy, but I think that if a reconstruction would make you feel better about yourself, or if you think it would improve your quality of life, you should seriously consider having it done.

Having said that, I think that any kind of surgery comes with risks. Do you think you can handle complications?

And would your decision be influenced by the way others view your body? I remember how my husband couldn't look at me right after surgery. He slept on the couch for weeks, because the scar scared him a lot. At the time I would have done anything to reassure him. Or my sons. I'm not sure that would have been a good thing. They all adjusted and now none of them even seem to think a lot about my cancer.

Ofcourse I'm NED and almost 5 years out from diagnosis, so that's not the same. But my point is: would it help you to have reconstruction done, or would you be doing it for them? And if it's the latter: how would it make them feel if they sensed that's your reason for having it done.

It seems to me that this is a complex issue. In a situation like this, I sometimes use this trick. I flip a coin. The moment I see the result, I monitor my reaction. Am I relieved? Do I feel sorry? That way I know what my gut reaction is. And I often go with that.

I'm not sure I've been very helpful. I hope you find an answer that makes you feel better.

Hugs

Jacqueline

[Sherryg683]

I am 3 years out with a stage IV diagnosis and have been NED since treatment. I understand your aprehensions about it being a waste of time. I still find it hard to buy things on sale for next season because I wonder if I'll still be around then. I only had a lumpectomy and didn't need reconstruction but if I did and I know what I know now, I would definately have it done if it was important for me. We can't live our lives waiting for that shoe to drop, we got to put on our dancing shoes and keep dancing. I had one friend who had a trans flap and another girl I know who had the implants. The one who had the implants had a much easier time of it and it looks really good, it did take longer with the gradual expansions and all. The one who had the transplant now says she would not have chosen that route. She was in a lot of pain for awhile in her stomach where they took the tissue from to make her breast. ...good luck..sherryg683

[SoCalGal]

Hi Del-
Gotta say that which reconstruction to choose was one of the hardest decisions I've had to make in my LIFE! I was never really sure I made the right choice but have let go of my awful feelings of regret that used to haunt me. There is a school of thought that surgery can trigger recurrence. I am not up on that concept but you can research this.

You can have the advantage of my wisdom and also keep in mind these are my opinions so check further.

I think that IF it is "only" one breast missing I would not do a thing. IF you had bilaterals then I would recommend implants over any flap procedure if you hate being breastless.

Here are my reasons:
1. doing nothing but throwing a prothesis in your bra is easy. no side effects. no risks of surgery and drains and ongoing recovery.

2. my many surgeries left me with weird nerve damage (?) and phantom itching so even tho I have "breasts" they look the best with a bra on. And ALL bras in the universe create some degree of discomfort for me after 30 minutes. the whole idea behind my gi-normous recon. surgery was for me to throw on a Tshirt over jeans and go-go-go. It has not worked out that way. I had infections and cancer spreading in the skin and wound up needing a second flap using my latisimus dorsi/back for enough skin to close with clear margins. OOPS.

3. surgery that involves other body parts is risky - unless there is just no other choice - IMO - don't involve perfectly innocent parts of your body. I used my tfl from my legs because I was too thin everywhere else and have weird sensations and some compromise of strength and balance as a result. Many woman who use their tummy are happy but nothing is without risk and flaps are more involved than expanders and implants.
4. I don't know much about implants except I read a lot and heard a bunch about hardening/contraction and or encapsulation and painful scarring. that's why I chose TFL free flap double recon. but wish I would have just gone breast-less.

Hope I've helped and sorry if I've added to your confusion. Feel free to PM me more questions.
Glad to read you are ned!

[Mary Anne in TX]

Hi Del,
I don't know if "it" is worth it, but you surely are. I'll bet you will get lots of suggestions from all those who have had one type of procedure or other or not!! I had mastectomy on one side and am an Amoena Girl myself. But I'm an "ancient one" as my kids call the older and wiser! So, I've continued to ponder it and have not done anything yet. I hope you'll find your answer as a Christmas present to you! Best wishes, ma

[Ruth]

Hi Del - I too was 36 with 3 small children (one was 9 months old) when I was diagnosed. I also had a MRM and radiation. Did you have radiation? I waited about two years and then went in for silicone implant. I knew I was high risk because of the radiation but it ended up working for me. I think impants are the easiest on the body but the fills are what takes the longest. The surgery is outpatient and I was in discomfort for about a week afterwards.
I got frustrated with swimming, finding cute tank tops and dresses when I had my prostesis. I know everyone's opinion is different about it so I want to say this is only my opinion about myself! :-) I was nursing my youngest when diagnosed and my remaining breast shrivelled down to a minus zero I think! Even the smallest protesis was bigger than my breast so I had to pad my left breast to match. I just got tired of all the work I guess. Now I can go braless, wear spaghetti straps and buy any swimsuit I want! It makes me feel better about myself and that is really what the key is. I don't think anything is a waste of time if it makes you feel better about yourself! I also didn't buy stuff for a while because I worried I wouldn't get to use it. It's hard but weigh the pro's and con's. Thinking of you! Ruth

[Louise O'Brien]

Del:

I see you're from Ontario. If you're anywhere close to Toronto, you have access to some very skilled plastic surgeons should you decide on the latest surgery - the DIEP flap, which takes tissue from the abdomen but does not cut into the muscle. Recovery is said to be quicker.

I'm six weeks out from having a DIEP flap and I'm doing really well. I'm not in pain but I'm still uncomfortable around the abdominal area - the swelling has gone down a great deal but it feels like I'm carrying a small, hard, rubber tire down there. It's not noticeable and my stomach is certainly flatter. Last weekend I took out a pair of pants that were too tight on me last year - and they fit beautifully.

I had no intention of having any reconstruction surgery. I just kept appointments with two surgeons because I was curious. The first one only did the tram flap but I didn't like him - and I walked out convinced that operation wasn't for me - and he certainly wasn't the doctor for me . However he referred me to another surgeon who specialized in Diep flaps so I kept that appointment, again just out of curiosity.

I went armed with a list of questions about all the options from implants to more extensive surgery. He spent two hours with my husband and I, patiently going over everything and not trying to talk me into any procedure. In the end, because I was so impressed by his quiet, thoughtful and professional manner and the time he took with us, I committed to Diep surgery.

That's the first thing you might want to consider - a consultative appointment without any obligations. There are some excellent surgeons at Princess Margaret hospital.

I'd say there are a few things you need to consider before making a decision as the surgery does involve at least six weeks recovery:

1) Your body type. If you small and slight, a Diep flap might not be the right option for you as they need a decent chunk of tissue.

2) Any good surgeon will tell you that not all Diep flaps "take" i.e. connecting blood vessels is tricky work. They have to tell you that. Most of the procedures work and you certainly need an experienced surgeon but you need to know there is a risk involved.

3) Is there someone who can carry a good part of the load for you for a few weeks after you get home i.e. cooking, looking after the kids, doing laundry, cleaning the house etc.

Because you won't feel up to it - and your rest is important. You're recovering from major surgery and a heck of a long time under anaesthetic. You're also recovering from abdominal surgery and that is initially painful. I had very little pain around the reconstruction site despite the stitches. It's the stomach area that requires the recovery time. I am still wearing an abdominal binder and I'll have a few physio sessions next month to help strengthen those muscles.

I was not supposed to drive a car for several weeks or lift anything over five pounds.

In four months I'll go back for a reduction and lift on the good side and I can hardly wait because the left side looks so good now. I'm a B cup now and I can hardly wait until the summer when I can wear a tank top.

The morning of my operation, I put all the special bras and prothesis in a special bag and I'll donate them to the cancer society. It was so good to know I wouldn't have to wear them again.

So - in a nutshell - it's major surgery and you have to know recovery time is involved. But I'm really happy with the results so far. It was the right decision for me but I did a lot of research beforehand.

Think about a consultative appointment; write all your questions down and bring your husband or a friend with you because they'll remember what you've forgotten. That will really help you with your decision.

Edited to add:

I don't think OHIP covers silicone implants - just saline. That's what I was told last year anyway - I don't know if it has changed since.

[Mary Anne in TX]

Good grief, Louise, you have me wanting to go! ma

[SoCalGal]

Wow - that was well put Louise. I thought that they needed some muscle for establishing good blood supply. I think that the DIEP uses some muscle but not the whole muscle but maybe I'm mixed up (as usual).


One more thing to add from me - all the women I met with the TFL flaps and patients of Dr Shaw - the doc at UCLA who pioneered the procedure - the ones who were doing well were not in treatment and didn't need further treatment. The 2 ladies w/probs were on chemo which makes healing different and sometimes difficult. Just to keep in mind. xo good luck! Flori

[Louise O'Brien]

I asked whether or not they used part of the muscle and they said no. What they do though, is make one small cut in the superficial fascia which is a membrane between the tissue and the abdominal muscles. Has something to do with the blood vessels.

And that's where I still feel it today - not pain as much as a pinching sensation. That's where the pain originally came from. Considering that I have a scar from hip to hip - one side is totally pain free - and the other is almost there - it's just that one spot that bugs me.

I wanted to add something about implants as I wasn't really an ideal candidate for that. I was quite concave and sunken in on the left side after my mastectomy. An implant would not have corrected that.

That's another thing that affected my decision. I didn't want to wake up disappointed with the results.

That caved-in look is all gone now. My husband was amazed at the difference.

I even had a new belly button constructed and the old one closed off because everything shifted after the operation.

One last note - I'm really finding the reaction to my getting this surgery interesting. Not as supportive as I thought it might be. I've been asked why I would want to do something like that to myself - almost as if people assume it's just plastic surgery and it's all about vanity. Just call me Joan Rivers!

I'm fairly open about talking about it - in case there's someone out there who needs to hear the positive side. There's so much support for people undergoing chemo and surgery - much less so for this final step.

And I guess it's because they have no idea how someone looks after a mastectomy - and why it's so important for some of us to take that step. It's not about vanity - it's about trying to recover and recapture a part of ourselves that we lost when we were hit with this disease.

Edited to reinforce something Flori said:

This is an operation to have when you're feeling well and strong. I waited until I was through treatment - and added six months for good measure before undergoing this. The surgeon also thought this was important.

[jml]

Hi~
I was dx'd Stage IV - liver mets @my primary dx (May '02)too. Since then, my journey w/this disease has been a bit bumpy at times, including just a lumpectomy when I was first dx'd, but eventually including a liver resection in Dec '05. Shortly after the liver resection, we discovered local disease in my breast again, including a 1cm invasive tumor + lots of high grade dcis, so I had to have a mastectomy.
I opted for immediate, staged reconstruction - w/saline expander, then finally, silicone implants. The expander filled w/100cc's saline was placed during the mastectomy & honestly i didn't notice a huge difference b/c I was pretty small on top. The gradual expansion was a little weird & I was SO GLAD to swap over to the permanent silicone implant ("dual plane" placement of the implant)- much lighter, much more natural feeling. Recovery time was minimal, pain minimal & I'm fortunate to not have had any complications - except for a bad reaction to the surgical tape, so the incision scars are more significant than they should be. The breasts-shape & size -themselves are great.
Tram/Lat flap recon was not an option for me b/c I didn't have sufficient tissue to create a breast mound, and also my docs discouraged this choice b/c I'm very active, teaching pilates & training private clients, & these procedures would alter my anatomy too much, making it hard for me to do my job.
In addition, I have worked with a few BC survivors, post tram flap reconstruction to help them restore strength, flexibility & balance of their core. To be totally honest, I'm not fan of this type of reconstruction. I have found that my clients were not aware how significantly this surgery would change their functional strength & ultimately, the "bonus tummy-tuck" is just not worth it.
If you haven't had radiation & the result from your previous MRM hasn't left you with a significant deficit, my vote is for reconstruction w/implant only-it is the least invasive of the reconstruction options.
Ultimately, your surgeon will guide you towards the best option for your body.
My breasts are a little bigger now than they were before, they're certainly higher than they were before, but ultimately they are still proportionate to my body size. On a totally superficial note, I certainly fill out a t-shirt better than I did before, & that's not a bad thing
While I'm still dealing with the complexities of Stage IV disease, I don't regret my choice & the time invested to have the reconstruction.
There is no "right" choice, but there is the "right" choice for YOU.
Best of luck!
Keep the Faith~

[Soccermom]

Small correction here ...a true DIEP uses no muscle whatsoever. A Surgeon who has not performed many of them may resort to utilizing muscle which then changes the surgery to a TRAM flap.
Be wary of Surgeons who cannot tell you for certain that you will wake up with a DIEP flap...or a GAP flap etc.
I hope that you will be able to do whatever procedure you elect!
Marcia