Rad after chemo post mastectomy (stg 1)

Petrochick · January 2011

I had positive margins following my bilateral mastectomy. It was only stage 1, but it seems that 3 mm of margins were remaining - probably because the tumor was close to my skin. I'm undergoing 6 rounds of TC chemo right now and now the rad onc is suggesting radiation. Anyone been in a similar situation?

I'm thinking I want to do everything to make sure the cancer is gone, but I'm worried about the long term side effects since I'm only 30 and plan to live another 50-60 years 1 ;-)

I realize I may be at higher risk for a recurrence since I'm triple negative and BRCA1 positive. I'm pretty frustrated since I chose the mastectomies and tissue expanders/implant route thinking I could avoid radiation. Now my surgeon is talking about deflating my expanders and not being able to even attempt another surgery for 6 months post radiation completion. I'm probably looking at a skin transplant after the radiation and I'm not a happy camper! Does this mean I have to go back to being completely flat and be bald?!? Grrrrrr.

Sorry - sort of a vent but also curious if anyone out there has been in a similar boat.

char123 · January 2011

Hello Pet: To make a long story short, yes have the rads. 10 years ago, I had a mastectomy and no rads, here we are 10 years later and it came back, same exact place, just under the skin. I was told if I were to be diagnosed today (instead of the original BC 10 years ago) They would do rads and I most likely would not of had the recurrance. So again, yep do the rads....

thenewme · January 2011

Hi Petrochick,

I had double mx with expanders placed, then chemo, then rads. I just had my exchange surgery from expanders to silicone implants this past November, so it is possible. I didn't need a skin transplant or any deflation of expanders. I did have to be completely expanded before starting radiation, and had to wait quite a while after rads for my exchange surgery, since apparently rads can cause some tissue changes for some time after finishing. The expanders, as you know, aren't the most comfortable (HA!), but honestly, another 6 months after rads isn't so bad in the scheme of things.

I had rads because my tumor was 5 cm, but I'm not at all sorry I did. I wonder if maybe your doctors are just trying to prepare you for possible worst-case scenarios? I'd definitely ask for more information before you decide for sure. Find out what your specific risk is for both local and distal recurrence, and find out what the benefit of radiation would be in *your* specific case. Find out about the long-term effects from the specific radiation therapy they're planning for you. Ask lots of questions both here and with your docs about any specific concerns you have. Learn all you can about triple negative, especially with BRCA - it's really a whole 'nother ballgame.

In the end, it's a hard choice, and what it really boils down to is your personal risk tolerance.

Please feel free to ask questions here or via PM. I'm not BRCA+, but our diagnoses are otherwise fairly similar.

Petrochick · January 2011

Hi thenewme,

After reading comments from others it sounds like I should take the radiation if I want to reduce my recurrence risk. My surgeon made it sound unlikely that would be able to keep me expanded and then successfully do my change-out with the radiated skin. I'm glad to hear that you were a success case. Hopefully I'll be able to go that route. I'm pretty much already fully expanded and I still have 5 rounds of chemo left, so that's not the problem. I'm hoping that means the skin will be used to the stretch and hopefully won't thin too much from the radiation.

Did you have the entire breast radiated or was it more focused? This is another question for anyone else out there. My rad onc made it sound like she always wants to the do the entire breast. I'm thinking, we can at least cut it down to the quadrant we know the tumor was in. My tumor was only 1.5 cm and in the upper, central quadrant (the reason my surgeon doesn't want to do surgery - the scar would be visible in most clothes and you run the risk that the margin was actually on the chest wall). So if they can focus the rad in that area, less chance of arm issues if we don't have to radiate that part of the breast? And maybe less chance the skin will be too damaged? Just my thoughts. I'm sure they're rather nuke it all just to be safe, but I'm thinking about the complications. Curious what others have had done.

thenewme · January 2011

Hi Petrochick,

You should push your surgeon to explain exactly why he thinks you'd need deflation and/or have difficulty with radiated skin. There may be some specific reason in your case, or it may be that he's just personally comfortable with doing it or something. Perhaps you could consult with a second breast surgeon for another opinion.

I did have whole-breast radiation, plus axillary nodal area and a suspicious intramammary (IM) node. My tumor was upper-inner quadrant too. Mine was at the 11:00 position. I had 9 nodes removed, and haven't had any trouble (knock on wood!) with lymphedema or other issues with that arm. Wait, I did have some painful "cording" in the beginning, but that went away with stretching and physical therapy.

I was worried about radiation too. My skin is VERY pale (nearly translucent, haha), freckled, and I sunburn very easily. Somehow rads was not that bad for me. It was red and sore, but I've had sunburns that were much worse. It healed up fine, and there is no skin damage that I can see, not even any tan coloration, but my PS did notice some underlying rads-related tissue changes when she went to do the exchange surgery. It wasn't anything serious, but I think the final cosmetic result wasn't quite as perfect as she was hoping for, but I'm totally good with it.

As far as your surgeon not wanting to re-excise for clear margins due to scar visibility, personally, I'd really question that. If there are other reasons for not doing it (like chest wall issues), that's one thing, but please don't let them leave cancerous tissue in you just because you *might* have a visible scar.

How are you doing with chemo?

dlb823 · January 2011

Petrochick, I don't know where you're being treated, but when these sorts of questions come up (and it sounds like you have several), it's often a good idea to get a second opinion, just to be sure you're on the right track. And sometimes just hearing the reasons for recommended procedures or treatment explained and/or reconfirmed by another doc or medical team can help a lot.

Since you're in TX, if you haven't already been to one of the 4 places listed here, getting a second opinion at one of them might help clarify your thinking about the need for rads, as well as any other questions you have about margins and expanders: http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

Good luck! Deanna

Petrochick · January 2011

Thanks for all the input. My docs are meeting this afternoon to present my case at tumor/cancer board. So when I go visit my plastic surgeon tomorrow I can find out what the thoughts if the team are. I just wanted to see what others have done too.

The plastic surgeon is concerned about contracture with rads and thinks there is risk of still not getting everything with another surgery. This is why he brought up the whole tram or wherever flap idea after rads. He's been good about listening to me and my desires. I guess we'll see what my skin looks like after the rads. I too am very pale and freckled.

First round of chemo was not too bad. Hair started coming out and I got it buzzed on Sat and I'm wearing my wig at work now! Round 2 is Thursday. Hopefully no worse than the first which was mostly just a really bad weekend (fluish).

thenewme · February 2011

Hi Petrochick - How are you doing? I'm thinking about you! Hopefully chemo is going well, and the countdown is on!

Rad after chemo post mastectomy (stg 1)

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