HELP !!! Radiation after Reconstruction

Anonymous · July 2016

Tfrancis · July 2016

I'm 23 years old and I recently got diagnosed with Stage 3 Inflammatory Breast Cancer. I have to get a mastectomy and I'm extremely nervous. The cancer is only in my left breast but I've decided to do a bilateral mastectomy. The thought of losing my breasts is extremely nerve wrecking, nevertheless, this is what makes me feel like a woman. I've been so emotional lately just dealing with all of this and I feel like no one understands me and how I feel about my breasts. I've been searching in hope to meet someone who has went through this process and maybe can share their experience. My question is after I do the surgical procedure, will it be a bad idea to do immediate breast reconstruction ? I have to do radiation after , will the radiation affect my breast expanders ? please give me feedback , I just can't fathom having to deal with no breasts.

BethL · July 2016

I am so sorry you're having to go through this. I can't give much as far as radiations impact on breast reconstruction goes because I didn't have radiation with my last diagnosis...which resulted in mastectomy. There are many amazing women here who I know will have great advice, but just wanted to let you know I'm with them in supporting you. I believe there's an inflammatory breast cancer thread as well and other young women who can relate to the issues specific to your age. But no matter what age...we are all sisters and here for you.

Frill · July 2016

I remember feeling the same way in October when I was first DX. I was to have BMX with immediate recon. I woke up with one MX, no recon. I couldn't look in the mirror for months - I didn't look down in the shower. But I'm making it, except I'm really worried about how recon will turn out. I got used to the one boob thing when a therapist said that I didn't have to like it. I don't know why it made a difference for me, but it did. I still haven't started recon and I'm ok with the one boob thing for now.

You will find a way through this, even if it feels like you won't right now. My hospital has Body Image Therapy that my surgeon made (yes made) me go to. If your hosp has something like this, I would take advantage of it. She's the only person, except on here, that I'll talk to about this.

Huge hugs. Distract yourself with things you can control, keep moving around and we are here for you

SpecialK · July 2016

There are a variety of approaches when it comes to needing radiation after mastectomy and wishing to have reconstruction. Some plastic surgeons will place expanders and rapidly fill them, often slightly overfilled on the rads side, and then do exchange to implants after waiting a minimum of six months after radiation is complete. Have you had chemo, or will you be having it? Often you can fill during chemo if your blood counts hold up. Some plastic surgeons will do direct to implant, if you are a candidate, but others don't like to radiate implants as they can tighten and become too firm on the radiated side. Some doctors will place expanders at the time of surgery, overfill, then deflate the expanders just prior to rads, then re-inflate and exchange at a point afterward. Radiated skin does not stretch well, so initiating implant reconstruction without first having stretched the skin with an expander has very mixed results and a relatively high failure rate. Many women choose autologous reconstruction - using their own tissue from another part of the body - if they require radiation. I would recommend having a consult with several plastic surgeons, who specialize in these approaches, and see what they think is best for you. I am sorry that you are having to deal with this at such a young age when this should be the last thing on your mind and in your life. Wishing you the best.

AnasNana · July 2016

Yes radiation will tighten the skin. My radiated breast was right and hard. The permanent implant was placed before radiation as the skin does not heal well after radiation.

Jenwith4kids · July 2016

I had radiation with my TEs in, finished in October, 2014 and had my exchange surgery at the end of April, 2016. It was a long wait, but worth it. I did have the radiated side a little over filled... and because I know, I can tell that the radiated side is a little bigger - (well, higher and tighter) than the non-radiated side. Totally can't tell in clothes, and if you didn't know you probably wouldn't notice - and frankly, most woman are NOT symmetrical! Some doctors won't do surgery on radiated tissue; I got lucky, my PS had no problem doing that. Maybe choose a plastic surgeon who is willing to do it - at least make sure you ask the question. And don't pay too much attention to the horror stories - for every bad story you here there are many good stories you don't hear about because they aren't here posting!

Good luck to you!

Lisey · July 2016

There is a large group of fiesty younger women who choose to stay flat... if you are on FB look up Flat and Fabulous. I got the TEs and the pain and IRON BRA feeling was agony for me... to the point that I made them remove them 3 weeks later. Keep in mind that you will not feel any foobs you get placed.. they will be mounds on your body with little/no feeling and if you are doing a simple BMX, you won't have nipples. Keep in mind the following:

1) TEs hurt... and while some people can deal with it, others cannot

2) The mastectomy breast pockets are more fragile than just normal implants. I was told I couldn't sleep on my side for worry the TEs and implants could shift into my armpits.

3) There is a rare but real type of Cancer that can come with Implants Here's a link: http://www.breastcancer.org/research-news/completely-removing-alcl-is-best-treatment

4) Many women suffer with infections and have complications during the TE process and some have to have them removed entirely and start over again..

5) Radiation does affect the skin and can make it hard.

6) if you get a reoccurance it can hide better with implants, and you'll need to get mammograms still (more radiation)... us flatters never have that again. (editted to add: my doctor told me I would be non-compliant if I didn't do mammograms, however it appears my doctor was not following protocol when he said this, so this point may not be true).

7) My friend who had implants had to massage hers so they wouldn't calcify (like a pearl)... doing maintenence on implant foobs is necessary. I personally would hate to touch these mounds I can't feel and have to massage them all the time...

8) You'll have to replace them every 7-10 years, which is a lot of extra surgery for someone as young as you are.

As a younger Flat and Fearless woman, I was pushed into immediate reconstruction and I wasn't told that over 55% of women choose no recon at all. I simply chose a recon option and plowed ahead... I wish someone would have told me all the stats and issues. I have a friend who did the DIEP and now that she sees me flat and happy wishes she went that route too (and I'm wearing kick ass clothes I never could have worn with my 34DDs.).. Have you seen any runway models with boobs? Flat is in baby...

Alirena · July 2016

I had radiation after a bilateral mastectomy and immediate reconstruction with tissue expanders. I had the exchange to permanent implants done 6 months after radiation was completed. I experienced no problems and 4 years later the radiated side is still soft.

Alirena · July 2016

I had radiation after a bilateral mastectomy and immediate reconstruction with tissue expanders. I had the exchange to permanent implants done 6 months after radiation was completed. I experienced no problems and 4 years later the radiated side is still soft.

SpecialK · July 2016

Those with implant reconstruction do not have mammograms, there is no breast tissue to image. It is not mandatory that implants be replaced every 7-10 years, the manufacturer's warranty expires at 10 years so they do not have to pay to replace the implant should there be a defect that occurs after the 10 year point.

Lisey · July 2016

SpecialK that is NOT what I was told 1 month ago by Kaiser. I was told I will be forced to have the mammograms or be considered non-compliant... Because there is still a possibility the skin (which has fat under it to live) still could have the cancer pop up... AND there is still a possiblity it would hit my chest wall or muscles and that mammogramming would be the way they find out.

I actually pushed back on getting mammograms because they never helped me and add to radiation, but the doc said I would have to do it. It could be Kaiser has a different policy, or maybe my doctor was mistaken or confused, but this was huge point of contention with him after getting the TEs in.

SpecialK · July 2016

Lisey - that may be Kaiser's own policy, but in my experience - personal, and here on BCO, those with implant reconstruction use MRI to image, and only then to check implant integrity, or if there is suspected issue - not annually or routinely like mammography. If you have cancer large enough to image between the implant and skin it is easily felt and seen, at the chest wall MRI is the better tool. I have had implant reconstruction for 5 years, have had zero mammograms. I don't personally know a single person with implant recon - for breast cancer, not augmentation - who has had a mammogram.

Lisey · July 2016

Well I went and researched it after you posted and made a disclaimer on my initial post as well. I think my doctor was either confused or going off the reservation because I can find no other place where they say you do it. - Honestly, it's just one more reason I didn't like him (my plastic surgeon).... he didn't listen to me about wanting only A implants and didn't listen to me when I told him to remove them and just make me prefectly flat. He left skin there 'just in case'... asshole. I'll have to go back to a different surgeon and tighten it up when I'm recovered.

SpecialK · July 2016

Lisey - your surgeon does sound like a piece of work. One thing to think about now is that as your swelling recedes and things soften after you heal, some of that skin may retract a bit - I hope so. It takes quite a while before you really know how things will look, give it some time. I had a 600cc implant in my left side from 2012 to 2014. It was removed for 18 months, and I was amazed just how flat that side became even after having that large implant under it. I had no skin removed after the implant was removed, it was just left "as is" and it eventually did become more taut. To have new implant recon on that side I had to go through the TE and expander process again, and I exchanged for a new smaller implant this past May. I know it is frustrating to not feel listened to by your docs, particularly when it is something as important as this, and requiring another surgery for that is pretty inexcusable. Hang in there!

Frill · July 2016

After reading all of this, I am completely confused at the approach my doctors have taken. I don't understand why, if I'm supposed to have radiation and that's going to tighten my skin - I don't have TE's or anything. It's been so long, but I thought she said they didn't like to do TEs with radiation. Right now, though, I'm almost done with chemo, about to start radiation, and all this is starting to weigh really heavily on me.

HELP !!! Radiation after Reconstruction

Comments

Categories