Radiation Oncology --- 50/50 for Radiation

So today I spent two hours hanging around with a radiation oncologist who specializes in breast cancer only to learn that he thinks that MAYBE I should have radiation.  It's my decision.

I am standing in a place where there is no bright white line to follow for treatment.  

The arguments for radiation (which would be 6 weeks of daily treatment Monday through Friday following Chemotherapy).  One; I am young; I had a relatively aggressive form of cancer (proven because my tumor was small but had already traveled to my lymph node), and the cancer traveled across my chest wall through that lymphatic system to my lymph node.  Because the sentinal node biopsy only took 5 lymph nodes, and I did not have a full axillary dissection (where they take more nodes), there is a 9% risk that I have some other node involvement.

Chemo is great at treating little bits of cancer cells floating around your body.  It's not so great at treating "clumps" of cancer cells.  Another lymph node involved would be a "clump".  Radiation is great at getting clumps.   Not that they know if or where the clump is but if they shoot radiation at my chest wall (where the cancer traveled through to the lymph) and the lymph nodes than if it is there they will get it.

So those are the arguments for getting radiation.

Here are the arguments against.  Radiation is rotten.   It has more long term negative health consequences than chemotherapy.   Skipping quickly over the short term radiation side effects of 6-8 weeks of exhaustion, dry cough, potential pneumonia and skin irritation), some long term side effects can include: scarring of the lung tissue where radiation was applied, lymphedema (I'll come back to this), and skin healing ability.  Oh, throw in the risk that radiation actually can cause cancer 20 years down the road.  Radiation also increases the likelihood that I will have issues with my reconstruction, including possibly additional surgeries and an unsatisfactory result (his exact words).  Dr. S said, "usually Dr. F and I can come up with a satisfactory result."  I don't really like the word "usually".    Radiation increases the complications in reconstruction because it will damage the skin and cause it not to be able to heal.  It results in more scar tissue.  Most commonly I might have to have multiple surgeries for the reconstruction.  Worst case (highly unlikely but possible) I would not be able to be reconstructed on that side.  

In addition, If they radiate my lymph nodes my risk of lymphedema increases from 2-3 % to 30%.  Your lymph glands are what carry fluid around your body.  They drain the fluid from your hands/arms back into your core.  If you have lymph damage then the drainage doesn't happen.  This results in arm swelling.  People with lymphedema have to get treatment (massage, wear tight arm support, and wraps) to encourage the drainage to work.  This would last the rest of my life.  Exercise makes it better.  I struggle with figuring out how we would bike across the country if I had an arm needing constant attention.  Perhaps I could bring our masseuse?  She might be up for a road trip across the country!

The doctor yesterday openly admitted that medical professionals underestimate quality of life issues.  I, of course, always a smart mouth, replied, "yes, but you have to be alive to have quality of life issues."  He laughed and agreed and repeated what he had said earlier, women who get only chemo have a higher morbidity rate with recurrence. 

What this doesn't address is the uniqueness of cancer, even breast cancer.  No one can ever say which cancers will reoccur.  So, how far do you go to avoid the risk of recurrence?  Do you compromise your quality of life for the next 30 years to ensure that you have the lowest possible risk of recurrence?  And even with that, if I have a really unique strain might it not come back anyway?  No one is willing to really say what my current risk for recurrence is, but I think it is somewhere in the 5-10% range. 

There is no research study that shows one way or the other. In the limited studies they do have (done in Europe and Canada 10 years ago where the surgery was probably not as good as mine) more women who got chemo and radiation vs. chemo alone lived. So I fall in the 50/50 bucket.  If Dr. S had a randomized trial he said he would put me in it.  He tried to run a trial like this a few years and couldn't get enough people with the right characteristics to enroll so it closed and we don't know the answers.

I am much more scared of radiation than chemo.   Dr. S advised to take my actual pathology slides to another institution and get a second opinion on the pathology and the radiation oncology suggestion.  He suggested the only other true breast cancer radiation oncology specialist in Chicago at Rush.  I have time, I just need to see her before my last cycle of chemo begins March 15th. 

To have something to look forward to, Ken and I booked a long weekend for our family in Scottsdale in mid-February (after 1/2 the chemo is done).  We got a great offer for a room by email (the one I had been fantasizing about).  Just a few days in the sun.  I'm looking forward.