PLEASE: Last effort to ask about this - Bilateral Mast/Tissue Expanders/RADIATION

LifeInBloom100

Hi!

I cannot imagine NO one has been in my position, but so far, no one has replied on this topic. I'd be SO GRATEFUL if ANYONE can offer some insight:

Has ANYONE here had ER/PR+/HER2- Stage 2 Invasive Ductal Cancer who got a BILATERAL MASTECTOMY with immediate 2-phase reconstruction (had tissue expanders placed), had a few small tumors in the left breast and a small amount of cancer cells in ONE node, and UNDERGONE RADIATION THERAPY?

DID you have reconstruction failure or was there any impact to the tissue expanders during or following your treatment?

This was honestly my secondary concern. My 1st was radiation-induced health risks, but since no one has responded, I thought I'd ask for others' insight or experience with my concern for reconstruction impact.

Please? Can anyone speak to this?

I'm tormented as to whether to put myself through radiation now. I've already done the double mastectomy and a re-excision surgery to get clear margins (they're now clear!) and had ONE lymph node involvement out of 4 removed - with a small amount.

My oncotype scores for 2 tumors were 19 and 21, and I don't have to do chemo - just LUPRON injections to suppress my ovaries and ANASTROZOLE for 10 years.

Radiation oncologist says there is a 13% local recurrence risk.

I DON'T KNOW WHAT TO DO.

Thanks for anyone's thoughts....

morchella

Hi Life in Bloom,

I can so relate to how hard it is making decisions and wanting to avoid as much risk as possible.

I got the feeling these discussion boards are not so active, so I reluctantly joined / sort of figured out how to use Facebook and joined a group for my specific diagnosis. It has been a wealth of information!

Good luck on getting the information you are needing to be able to make your decisions. ❤️

LovesPrimes

Hey, @LifeInBloom100, I'm so sorry you didn't get as much help here as you were hoping for. I'm thinking about you and hoping that you will share what decisions you've made and how things unfold.

RocDocVic

https://csn.cancer.org/discussion/327358/please-last-effort-to-ask-about-this-bilateral-mast-tissue-expanders-radiation

I have not yet had surgery so I can't directly answer your questions. If it were me I'd ask the radiologist about what types of damages he has seen, prevalence, what is done to minimize damage etc. I'd then follow up with questioning reconstruction surgeon about damages that are commonly known, how it is monitored and what is done to correct the problem. New expanders/replacements, temporarily suspend filling, not fill all the way etc. Why did they recommend expanders right away knowing you'd have radiation? Why not wait until afterwards? Just a few thoughts, but certainly your team should address your concerns and questions. I know that if I can use Proton Therapy I will wait until post treatment for any reconstruction due to possible issues with expanders.

cheerfultulips

Hello LifeInBloom100,

Just wanted to check in on you and see how you were doing.

Hope you are doing ok.

Take care.

Jasmine8

I had double mastectomy in Aug with expanders placed and finished radiation in Nov. None of my Dr's seem to be too worried about complications. They do tell you that you need to do all the fillings and get to the size you want before radiation starts, the risk of complications is much more if you do fillings after radiation. I did not have any complications from the radiation other than the usual burns and my breast feels harder than the one that was not radiated but my plastic surgeon thinks it will soften up. I have to wait 5 months to switch them out to implants. They also say the longer you wait the better.

LifeInBloom100

Hello, @Jasmine8:

Thanks kindly for your shared experience. It sounds we've had the same trajectory (bilateral mastectomy with TE). I am not jumping over the moon to head to my own series, but I'm indeed taking the guidance of my oncology team and will my 25 radiation sessions Christmas week. I have also been expanded to the final size, and a tiny bit over-expanded on the left side (which is the one to be radiated).

I'm encouraged to hear you've gotten through with what sounds to be the typical skin reactions I'm hearing about. And I sure hope you're feeling stronger and emotionally managing well with this part behind you, and recovery ahead.

I will also wait 6 months for phase two of my reconstruction, by the way.

@morchella, @LovesPrimes, @cheerfultulips and @RocDocVic - I thank you all for checking in and for your thoughtful suggestions. I hope each of you is doing alright. @LovesPrimes - is it you who is having your DIEP procedure this month? I am thinking good thoughts for you!

🌻

Jasmine8

https://csn.cancer.org/discussion/comment/1711486#Comment_1711486

Hey there, just wanted to check in and see how radiation is going for you. You should be about 2 weeks in by now right? I didn't burn till about week 4. Just be sure you use the creams religiously and if you do start to burn ask for a Rx for StrataXRT, it's expensive but it will save your skin. Insurance usually doesn't cover it, I paid $90 but when my skin started blistering I started using this and it went away in 2 days and the blister's didn't get any bigger. I wish they had given me the prescription sooner, I would have started using it as soon as I got red.

https://us.strataxrt.com/strataxrt/

cheerfultulips

I didn't burn at all, but starting from the 5th week, I started getting hyperpigmentation. By the end of the 6th week, my left breast was very dark. Surprisingly, the pigmentation went away rather quickly once radiation sessions stopped. Right now, it is still one shade darker than the non-affected one, but I can live with that.

What I religiously did was to apply Vit E. oil mixed with Aquaphor throughout the day after the radiation treatment.

I also started feeling fatigued around the 5th-week mark. My doctor told me to keep my activity level up since that helps with tiredness. Staying hydrated and resting when needed helped too.

Hope you are faring well with the sessions.