Deciding on Reconstruction After Radiation - Help

mollieb

I have been MIA for a while. Just as I began to recover my energy, my work exploded, and I have been nose to the grindstone for more than a month. But I do need to step back and think a bit about whether to have reconstruction. I would very much like input from anyone with a thought on the matter.

I had a left modified radical mastectomy/node resection in November 2010, chemo from January 14 through August 4 (with a 7-week break for shoulder surgery), and radiation from early September through October 19.

I have just about decided "no" on reconstruction, for the following reasons: I am 61, fat, with clotting issues. In addition to all the surgery, treatment, etc. associated with a mastectomy, chemo, and radiation, I was hit by a Chevy Avalanche while crossing the street last April and had to have a shoulder replacement. I am tired of surgery. Radiation has left the tissue in the area of the mastectomy scar very hard and immobile, to a depth of about half an inch. Physical therapy has really helped the resulting loss of range of motion, but it doesn't seem to be having much of an impact on the hard tissue. (How long does that last, or will I have it forever?)

I don't care too much about my appearance. I am used to being fat, and I dress neatly and conservatively. My husband is okay with me having one breast -- he says, "Don't do it for me." Until the hard tissue problem, I didn't have much trouble with the prosthesis. Now it slides around.

If I had reconstruction, I would need, at minimum, the following: latissimus dorsi flap surgery (bring tissue from my back around to my chest and attach it there); wait for that to heal; insert tissue expander; expand; insert silicone implant; breast reduction surgery on the other side so they kind of match. Do something regarding a nipple.

I would miss a lot of work and those surgeries (especially the first) can be painful. (But I am used to pain now and could probably handle it.)

Those are my reasons for thinking the answer is no. Possible reasons for a "yes" include it's just much easier not to mess with a prosthesis every day. If I don't do it now and change my mind, I may not have the opportunity later. My radiation oncologist says it would bring new capillaries to an area where the old ones were destroyed by radiation.

So, what did you decide, and why? Would you do the same thing again? Would you feel differently if you were my age etc.?

Thank you, thank you, thank you for sharing your experience and thoughts.

Mary

Frankie Shannon

I had a bil mastectomy with
I had a bil mastectomy with no reconstruction as i was 67 i don't know what i would do if it was just one side but because of all the after affects and my age i probable wouldn't do it even then.You have to do whats right for you if your comfortable with out reconstruction then don't do it.Let us know what you decide.Hugs Frankie

RE

Hugs
Hello Mary,

Well I have had a lumpectomy with 16 weeks of rads on the side and a total mastectomy on the right side. The left side I have severe lymphedema issues so I have not had any reconstruction and to be honest with you I am fine with how that side look. Just three day's ago I revisited my reconstruction photos which go from no recon. and scar to the implant with no nipple to reshaped recon with nipple reconstruction. I too was tired of surgery (I have had 13 surgeries to date) so I waited 1 year before I had the reconstruction (expander with implant). After that was over, it is a process and takes a bit of time to complete, I waited 2 years to go back to have it tweaked to look more symmetrical and to correct a few imperfections and to add the nipple. I choose to have the nipple created rather than have it tattooed on. I would most assuredly do it again in a heart beat. I am a positive person who has a husband who loves me with or without breasts, that said I found with time I would look in the mirror and truly missed my breast. Once it was all done and I had a complete breast with nipple my soul rejoice, if that makes sense to you. Oh, by the way I am 54 years old.

Now let me expand a bit on other reason's why I choose to have reconstruction. My Mom had both of her breasts removed when I was 17 and she was 40. She was a fun loving, caring strong woman. She truly hated looking in the mirror and seeing what was looking back at her. I tried to encourage her to have reconstruction but she felt she could not do that because her original surgery was so intrusive and she was just tired of surgeries. I cannot forget how much it hurt her and how many times I heard from her how much she wished she had her breasts back. I did not want to have those regrets and now I do not and I have found that I am happier. It is not for everyone and you have to do what is best for you. I wish you all the best!!!

aysemari

If I could do it over again
I would say no to reconstruction. I didn't even go all the way
through, no nipples after 2 failed surgeries and no tattoo.. who
am I kidding they are not real. And honestly, I couldn't care less.
I am just so darn happy to be alive and if your don't like my boobs
tough luck!
Mine are very uncomfortable, haven't had a good nights sleep in quiet
some time. Though I can wear my old bras, these things don't go flat
so most of my tops and jackets can't be buttoned anymore. It took me
a while to figure this one out, here I thought I got fat. And I always
feel them pressing up against me. These babies are going bah bye when
their time is up, no doubt in my mind. That's just my input.

Hugs,
Ayse

Tux

aysemari said:

If I could do it over again
I would say no to reconstruction. I didn't even go all the way
through, no nipples after 2 failed surgeries and no tattoo.. who
am I kidding they are not real. And honestly, I couldn't care less.
I am just so darn happy to be alive and if your don't like my boobs
tough luck!
Mine are very uncomfortable, haven't had a good nights sleep in quiet
some time. Though I can wear my old bras, these things don't go flat
so most of my tops and jackets can't be buttoned anymore. It took me
a while to figure this one out, here I thought I got fat. And I always
feel them pressing up against me. These babies are going bah bye when
their time is up, no doubt in my mind. That's just my input.

Hugs,
Ayse

I was 62 when dx'ed. I determined that I would have no reconstruction--just not worth it at my age. I think it is a decision that each individual has to make. Certainly, if I were younger, more factors would enter the picture.

I have a couple of friends in their 60's & beyond who are not have reconstruction.

It is up to you; we will be behind you no matter what you choose!

Melaniedoingwell

take your time
I hope you are aware that you do not have to make a decision even now after a year's wait.

I was on a teleconference call the other night that Moffitt Cancer Center had set up in regards to reconstruction, what the options are, and what type is best for whom, etc.

The nurse who was sharing information said that some women wait for years before deciding to have reconstruction surgery. And any implant you get, while considered permanent is not lifetime. Implants generally are considered to have a 15 (approx) year lifespan after which they will need to be replaced.

I am 56, had bilateral last February and I am thinking - meh - why go through that hassle?? I will see a plastic surgeon within the next few months to discuss simply smoothing out unevenness. NO to implants, NO to reconstruction.

Good luck with your decision. You are the only one who can decide what is right for YOU.

I'm glad you have a supportive husband - I, too, have that blessing!

Melanie

missingtexas

I dint know if this will help or not
I was 38 when I was diagnosed. Bilat mastectomy. Radiation on the left side. The doctors wanted to wait at least 6 months for recon. I was nit a candidate for a flap although my ps said if we had to do a latissimus to get through it, we would. My expansion has been something I can't even describe. My right side (the one without radiation) I have felt 0 pain. Absolutely none. The pain in my left (radiated) side is a pain that I can't begin to describe. If you took my two c-sections and my mastectomy and put them all together it wouldn't even begin to touch the pain I get for several days after an expansion. We have cut the amount down and the time in between has been extended. It is at times unbearable. I am very small which may have some thing to do with it but my plastic surgeon said that you could take two people the exact same size age and treatment and they may react different when expansion starts. Now...would I do it again? Maybe. I have a 3 year old daughter. I want into look normal when she looks at me. I wish you tons of luck while you make this decision. It's not an easy one!! xox
Dana

mamolady

Bilateral w/ no recon
Mary,
I had a bilateral mastectomy in march of 2011. At first I did not care about the recon I figured I would go with prosthetic. Well the fake boobs are a little to uncomfortable for me so I don't wear them. I work in scrubs so most people don't even notice. Well one person does and she mentioned something about my looking like a boy. That made me look into recon. I spoke with the surgeon and went over the pros and cons. I am only a fair candidate for either the flap or the implants. The flaps I don't have much belly tissue to create more than a less than an A cup. The implants, I had rads on the right so the skin may not stretch well and it may be tough to get them to match.
My husband asked me why I would consider 15 hours of surgery, 5 days in the hospital and 4 months of recovery just for boobs? Since my only reason for looking into it was a stupid comment by an inconsiderate co-worker, I have put off recon. So for now I am working on loosing the weight I gained on chemo. I figure, if I am skinny (or at least thinner) I can be flat chested and no one will notice.
Cindy

ps - my daughter in the picture with me helped me find clothes, besides scrubs, that look fine with out boobs! Right now I am 48 years old.

atiredparent

I am in the same position
I am in the same position trying to decide. I saw a plastic surgeon last week and all the risks he mentioned were scarey. I am still not sure what I will do and have decided to wait. Fortunately I live in CA and the law states there is no deadline for me to have reconstruction even if I change jobs or insurance. In my oppinion when or if the time is right you will know and the decision will be easier. Don't rush the decision. Good luck on your choice.

atiredparent

mamolady said:

Bilateral w/ no recon
Mary,
I had a bilateral mastectomy in march of 2011. At first I did not care about the recon I figured I would go with prosthetic. Well the fake boobs are a little to uncomfortable for me so I don't wear them. I work in scrubs so most people don't even notice. Well one person does and she mentioned something about my looking like a boy. That made me look into recon. I spoke with the surgeon and went over the pros and cons. I am only a fair candidate for either the flap or the implants. The flaps I don't have much belly tissue to create more than a less than an A cup. The implants, I had rads on the right so the skin may not stretch well and it may be tough to get them to match.
My husband asked me why I would consider 15 hours of surgery, 5 days in the hospital and 4 months of recovery just for boobs? Since my only reason for looking into it was a stupid comment by an inconsiderate co-worker, I have put off recon. So for now I am working on loosing the weight I gained on chemo. I figure, if I am skinny (or at least thinner) I can be flat chested and no one will notice.
Cindy

ps - my daughter in the picture with me helped me find clothes, besides scrubs, that look fine with out boobs! Right now I am 48 years old.

Exactly my reasoning! I am
Exactly my reasoning! I am working on losing weight with the same thought that it will be less noticable if my belly doesn't always arrive on the scene way before me! I don't wear the prosthesis either as it very uncomfortable. I decided I don't care what people think and try to buy clothes that cover.

mollieb

Thanks, Everyone
I like the advice to wait. I will see my plastic surgeon on Friday and will see what she knows about Illinois law on how long I have to decide. Also, I hope she can smooth out the bumps while I am waiting!

Mary