Breast LE and about to start rads...

jessica13

I have mild breast lymphedema following a lumpectomy and SLNB, as well as substantial scar tissue under the tumor bed from the oncoplastic surgery. I have been having it treated with MLD for 6 weeks and it is manageable but I am petrified of how badly radiation will exacerbate both the scar tissue hardness and the lymphedema.

I will not be having rads to the axilla (though I guess there could be 'scatter') but it will be to the full breast.

I am 35 and more concerned about the quality of life, given that I may have to deal with cancer again in my lifetime anyway given statistical odds from my age, but don't know if it would be stupid to decline radiation.

Have any of you had surgery related breast or truncal LE and went through radiation anyway?

Thanks!

Binney4

Jessica, believe it or not, you're in a very good place. Just knowing to be aware of this is the key to keeping the quality of your life at its very best. First priority: do everything you can to defeat the rotten breast cancer. Radiation is a great tool for that! And just as you're doing, be aware of the risk of LE and stay on top of it. If you have a well-qualified lymphedema therapist already, and s/he's someone you can work well with, ask her to help you through this time. Though she can't do a complete MLD during rads, she can teach you a daily routine you can use to help keep your affected quadrant clear by stimulating lymph nodes and doing some deep breathing and gentle exercise. Ask her about using arm and hand compression prophylactically during rads, and if she agrees that would be helpful, have her monitor the fit of garments to be sure they're just right for you.

Other risk reduction suggestions here:
http://www.stepup-speakout.org/riskreduction_for_l...

Once you've healed from the effects of radiation, your therapist will be able to help reduce any new swelling or hardness, and you'll be ready to take back control of your life. Please stay in touch and let us know how you're doing.

Gentle hugs,
Binney

kira66715

Jessica, I had LE of the hand prior to starting rads, and didn't even know enough to question whether rads would make it worse. My rad onc actually denied that rads caused or exacerbated LE....clueless...

The reality is that  whole breast radiation "hits" much of the level I/II nodes with a fairly significant dose of radiation, even when the axilla is not targeted. Even with IMRT, it depends on the tangents, but much of the area will receive a hefty dose of radiation. However, there are studies that show a survival and recurrence benefit from lumpectomy with radiation over mastectomy and it's thought that maybe that radiation to the axilla may be part of it. But, whole breast radiation, even when not aimed at the axilla, increases the risk of LE. 

Stanley Rockson MD of Stanford, on his Lymphatic Research and Education site, says that radiation increases the risk of LE to around 15- 25%. 

Actually, no one knows what the actual risk is, because there is no single standard to either define or diagnose LE.

However, there have been recent studies showing that with SNB--and add the scars of oncoplastic breast surgery in--the incidence of breast LE is quite high, but unfortunately, quite too often not recognized or diagnosed. But, it has a tendency to improve with time and you are getting the correct treatment.

I worked in radiation oncology, and many of the women developed breast LE during treatment--I would see the exaggerated pore size as treatment progressed, but so many also improved with time.

Radiation has acute--inflammation, burn, swelling--issues and chronic issues--fibrosis. Treating the breast with MLD will help with both.

One of the women on these board was treated for radiation fibrosis with trental and vitamin E and did very well--she was treated at Sloan Kettering.

So, the bottom line is that you're young and the point of breast conservation is to use radiation to prevent the local recurrences. It is likely to flare your breast LE, but you're on top of it. 

The only ways to avoid radiation to the axillary nodes is 1) brachytherapy--where they put an implant in the breast and do twice daily treatments for 5 days--but lots of issues with cosmetic outcomes and recurrence risks, or 2) prone position--laying with breasts down on the table

My vote is to treat the breast cancer completely, but with awareness and discussion to minimize--if possible--the LE. And that would be to discuss the radiation planning with your rad onc. 

Kira

jessica13

Thanks ladies, you've made me feel a lot better.

I had always expected to do lumpectomy + rads but then I got LE and it turned out part of my tumor was Her2+ so I also did chemo and will have Herceptin and Tamoxifen... Radiation and its impact on cosmetics/LE was just the straw breaking the camel's back, so to speak.

I will be in the prone position so can hopefully avoid the arm LE, and I guess I have to have faith that time will improve the situation. Feeling in control of it does help!

Cheers

Jessica