Radiation to Axillary Nodes

Azz- I am in the process of doing rads and they are radiating my axillary area along with the entire breast area.  I was told it was standard treatment for someone with my dx.  I am also worried about LE and all the possible SEs associated with rads but feel the need to do everything possible to prevent this terrible disease from coming back. 

My mother was in her mid 70's when dx with invasive breast ca.  She had a lumpectomy with rads.  She virtually had no SEs with rads and is doing great 6 years after her dx.  

I think it is normal to worry and be scared but try not let it interfere with your decision making. 

Hi Azz,

Our cases are so similar. The biology, grade, and size of our tumors is similar.  We both had full axillary node dissections: You had one positive node out of 10 (according to your diagnosis listed at the end of your posting). I had one positive node out of 14. 

So, here's what happened to me re: radiation:  I consulted four radiation oncologists in the San Francisco Bay Area.  One told me I needed 33 days of radiation treatment, but no armpit. Another said 36 days, but no armpit.  Another said 25 days, but no armpit -- recommended by the rad onc at UCSF. Another told me 30 days and insisted on doing the whole armpit. 

Unfortunately, I went with the rad onc who insisted (INSISTED) on radiating my whole armpit -- even though I didn't want that.  But I decided to go with his program because he told me that he would "Never!" radiate my heart or lungs; whereas all the other rad oncs told me that they would have to hit a corner of my heart and a sliver of my lungs. Unfortunately, I didn't know that "Mr. No Heart No Lungs" was outright lying. (He won my business, didn't he?) Now I know that if a patient is radiated on the left side, a corner of the heart and a sliver of the lungs MUST be radiated.  There is no way to avoid it.

So, now I have full-blown lymphedema and an arm that has required months of physical therapy. If I could do it all over again, I would NEVER choose to radiate the armpit if it had already been thoroughly dissected.  In retrospect, I now see that the radiation oncologist at UCSF knew more than any of the others. She was the one who said, "Your axilla has been adequately dissected.  There is no need to radiate there."

Another thing: my Harvard-trained oncologist shakes his head at the idea that you must start radiation four to six weeks after your last chemo.  He said that if you need to take a few more weeks, it really doesn't matter. I say, It's better to take the time to look at all your options and make the best decision.

Best wishes. 

AZZ and blueballoon, I just wanted to comment on the exercises mentioned here regarding their effect on potential (or actual) lymphedema. First, with all due respect to your oncololgist, AZZ, our doctors are rarely trained in treating (or preventing) lymphedema, as the medical professionals trained to diagnose and treat it are well-qualified lymphedema therapists. (It's wonderful that your oncologist is interested in lymphedema -- is he by any chance taking regular arm measurements at your visits? That's one very good way to put a lymphedema risk management program into action.) Since not all therapists are trained in lymphedema, finding a good one can be a challenge. Here's how to find one near you, including some questions to ask:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

There have been two studies recently published regarding weight-lifting with lymphedema and when at risk for lymphedema. They are being seriously mis-represented by both the media and (unfortunately!) some of our doctors and nurses. They do show that exercise, if done in certain very careful ways, is not harmful post-surgery/rads (as was commonly thought many years ago). The studies were done with extremely close supervision by specially trained weight trainers and lymphedema therapists, so the recommendation is to begin weight lifting with skilled help from trainers who are knowledgeable about breast cancer and, specifically, lymphedema. If you already have lymphedema it's important to use well-fitting arm and hand compression when exercising. All of us need to work up very slowly to increased weights, and stop immediately if our arm feels heavy, achy, or tingly.

In terms of specific exercises to reduce risk of lymphedema and if you already have lymphedema, swinging the arms in circles should only be done VERY slowly to avoid forcing fluid toward your hards. Any exercise that places your body's weight on your hands should be avoided -- the push-ups off the table edge, for instance, put way more weight on your arms and hands than is recommended even by the studies we were talking about. If you already have swelling in your arm and place that kind of pressure on your hands you're risking new hand swelling as well.

Best idea is to find a good lymphedma therapist and see her/him BEFORE you develop lymphedema, so that baseline arm measurements can be recorded and you can get personalized risk reduction tips and exercise advice.  Blueballoon, if you already have a well-trained lymphedema therapist, do make use of her/his knowledge in beginning and maintaining an exercise program. One excellent source of safe and effective post-breast cancer and lymphedema exercise is the HealthySteps DVDs:
http://www.lebedmethod.com

Lymphedema is sure no picnic, but it's manageable, especially if caught and treated early. There are lots of gals with experience to share on the "Lymphedma After Surgery" board here, if you have any questions or concerns.

Be well!
Binney

Dear Kira

Since you work in radiation oncology do you mind if I ask you a question about radiation inflammation?

I experienced tingling and pins/needles in fingers during radiation treatment a few weeks ago. The rad Dr told me it was irritation of nerves. I finished the treatment last week and now I have 2 swollen fingers on affected arm. I did previously have ax clearance with 10 nodes removed. Prior to rads I had no problem with lymphadema at all.

In your experience Is the rad inflammation temporary and does this cause permanent lymphadema after the radiation treatment. I am seeing my physical therapist today but it seems that I get different answers from my team who assured me that rads would NOT increase chances of lymphadema since only the chest wall was treated and not axilla or subclavicular fields.

Kindest regards, susie

Dear Kira

Thanks so much for your informative reply. My physical therapist is great and well trained in LE. She agreed that the rads Drs make light of LE and don't inform of the real risks. I m hoping that this swelling is temporary but at least now more informed about the real risk of LE down the track. I wish I had had this info prior to rads treatment as i would have weighed up the pros and cons differently.

Thanks for the great links also. I did read somewhere that taking Vit E helps to prevent some of the scarring and fibrosis after rads. All the best with your LE treatment. I hope one day this problem will be a thing of the past for us ladies having treatment for this rotten bc.

susie 

Hi Azz,

One of my better doctors told me that the med students who go into radiation oncology are "really weird"  and I believe it.  I had consultations with four rad oncs, and I was stunned at how bad their social skills were. Three out of the four seemed like arrogant, inflexible people.  They didn't want to hear my questions, much less answer them.  They didn't want to discuss the ramifications or benefits of radiation in any detail.

 My point is that if you ask your rad onc to change his plan mid-stream, it'll probably rock his fragile boat and he'll probably have a fit. But now that I've been seriously hurt by excessively aggressive medical procedures, I will always feel comfortable stopping any treatment that I decide I don't want to continue. Of course, I will need to consider that the consequence might be that the doc may refuse to change the plan, and then I may need to find another doc.  

In the case of radiation, I suspect that any change of plan will cause a break in your treatment schedule while the plan is reworked. Not sure. Just guessing. Something to consider.

I have had only 2 nodes removed (micromet in sentinel, 2nd one was clear) and actually want my armpit radiated?? I asked for more nodes removed and my surgeon and oncologist both said it wasn't necessary.. is anyone is my situation?? Am I crazy to want it? I won't be starting til June as I will be in chemo til mid-May.

I had A.N.D. with 5 nodes positive.  I wish I had stopped radiation at the end of "regular" treatments & before the scar "boost."  I now have a wound that won't heal, LE & recently spent 3 days in the hospital with cellulitus.  My rad onc refused to see or talked to me at the end of regular treatments, I fired her but not soon enough. My advice, follow your gut. NJ