I'm in the Gray Zone for Radiaton Therapy - anyone else?

I forgot to mention that I also had a double mastectomy - 6 rounds of TC - skin sparing reconstruction with saline implant.  I think I am leaning towards not having radiation but there is that little part of me that knows that if I do not do radiation and have a recurrence I will be so mad at myself.

I too was in the grey zone for rads.........I chose rads.  I'd had a mod.rad. mast. 3cm. tumor, ER/PR pos.  Her2 neg.  1/14 nodes pos. chemo ACT.

My understanding is that "standard of care" for 0 nodes and tumor less than 5 cm with mastectomy is "no radiation."  the radiologists would not even consider a request if that were the case.  On the other end of the spectrum, a tumor over 5 cm or more than 4 nodes and automatically they would consider you absolutely should have the radiation, even though you had a mastectomy.

The "gray zone" is the middle which is unclear from research - there's no good research on how much benefit a woman with a smaller tumor (less than 5 cm) and few nodes (less than 4 nodes) would have from radiation - on local recurrence.  One radiologist told me he felt that the chance of local recurrence in a woman with my stats would maybe be 10-12% which means that there could be a 90% chance it would not recur locally.  Apparently, although Chemo has some benefit for local recurrence, my understanding is it has much more impact on any renegade cells that slipped through the lymph system. The radiologist was not aware of studies done where women had my stats, no radiation, yet remained on tamoxifen or hormonal suppression and what the effect of the taxmoifen would be in preventing local recurrence.  I think I have to take that up with my oncologist.  I have in my notes from one radiologist that the "total benefit" in my case could be 3-5% points (they don't really ever know).  So, the question is do you go through that for 3% (which some people would feel is undoubtedly worth it and others would not).  The "gray zone" is that there's no right or wrong, it's comfort level and your willingness to accept the potential side effects of the radiation vis-a-vis reconstruction and other risks.  The frustrating part is that it always brings you back to the bottom line - that there's no one right answer.   

Grey zone here.... did rads... had 1-3 positive nodes...I only did the rads because I am 41 and was her2+. There is no real proof on this yet. In a few years, the study will be released. I am thinking.. from talking to the rads onco .. Dr Author... Dr. Wall and Dr. Yu.. from around the US a few months back...they are leaning toward rads.

This was the hardest thing for me. I had to make this choice.

I did my research on Reconstruction. I had TE placed at time of mast. I was fully expanded in 6ish weeks.. ( small-med C cup).... I did rads... skin and muscle did well... had exchange at three months ( this is early.. but I did well)..So far my recon. is really good. I massage the implants daily.. and the rads side is only about 20% firmer than the non rads side.

PM me anytime.

ps...my exchange was a month ago...

Pondfrog/Jen...

I wish I would have called your rads onco....

Thanks for sharing your story!

Sharon... Edit Edit Edit....hehehehe... I do that too..hehe...

Hoping.. what decision you make will be what is right for you. NONE of this is easy.. we all know that. You will do the right thing for you!

I have a similar dx as you and am in the gray area too. You can read my signature below. My tumor was located in my inner part of my left breast 3.3 cm and my 1 lymph node was 1.4 cm and located in my arm pit.  I had clear margins as well. I have 2 opinions from radiologists about whether or not rads would benefit me. My radiologist here was very iffy about it and could not give me any percentages. He was the one who recommended that I get a second opinion and told me who to go to. She is located in St Louis (3 hr drive for me) and she is a radiologist oncologist who specializes and only deals with the breast. She went over my case and pathology report and spent a great deal of time explaining everything to me. She feels that the benefits outweigh the risks in my case and that my chance of recurrence WITHOUT rads would be around 25% and WITH rads would drop to 5%. That is a big difference.  She also recommended intramammory nodes to be radiated also since my tumor was located near the inner chest wall. My radiologist didn't even discuss that area with me. She also said that this is my window of opportunity to hopefully prevent a recurrence and that I should take advantage of it now and treat it aggressively. Of course she went over all of the side effects too , especially about how the tissue expander and implant would be affected. She recommended that I should do the flap procedure once this radiation is finished. I really don't want to do that surgery and I think that I will stick with getting the implant. My PS says he wants me to wait 6 months after rads are finished to do the exchange.

I have debated back and forth with this, but I have decided to go ahead and do the radiation to prevent recurrence and for overall long term survival in my case.

Hoping, I reached the same conclusion.........hit it with all I've got for treatment options and no regrets.  I'm glad you have felt relief with your decision.

Gentle hugs. 

I am so glad that you made a decision and at peace with it. I agree with you totally about having no regrets and hitting it with everything you can now.  I too worry about my expander and future implant, but Ii am hoping for the best. (((Thanks Estepp-Laura)))  I have been posting on the August rad thread since I will be starting next week.  Oh, and I am going to insist on no tattoos. I am sure that they can use the marker with tape everyday. I do not want a permanent reminder of having rads.

Hoping... they can erase them at exchange... BUT.. they do leave little white dots... that might still have a little grey to them. They really are not to bad.. but I personally did not want them. I have enough things reminding me of BC...:)    HUGS