Radiation: To Do or Not to Do

     Soooo before I even started chemotherapy my husband has been VERY against me getting radiation.  Every time a doctor would say it was a possibility he would strongly object.  I always had more of an open mind.  I felt if someone could argue a good case, backed up with  

 evidence I would do it.

     As I was nearing the end of my chemo my oncologist said that he was not convinced I should get radiation.  He suggested I go see the local radiologist and see what he had to say.  So we had a consultation with the radiologist.  I told the doctor I was there to see if I really needed radiation.  The doctor said of course I did and scheduled my first appointment to get started.  I was to go 5 days a week for 6 weeks.  He didn't back up  his claim with any studies or evidence. We asked him about side effects and he only told me the short-term effects.  He seemed to think there really was no negatives or long-term effects of radiation.  After the appointment I figured that I would get radiation.  The doctor gave me the impression that it was really my only choice.  But, Corey HATED the radiologist.  He said he felt like he had just heard a high pressure sales pitch.

     A few days later I had an appointment with my oncologist.  I told him that the radiologist said I should get radiation.  My oncologist exclaimed, "Why??  What evidence or data did he have to support this decision."  I told him he said I needed to because of how big the tumor was, how aggressive it was, and 2 positive lymph nodes.  My oncologist again wanted to know what studies there were to back him up.  I told him that he didn't talk about any studies or evidence.  My oncologist was not happy.  He told me I needed a 2nd opinion and then to carefully make the decision for myself.  He sent me to OHSU in Portland.  There was a radiologist there that he really respected and he felt that a research/teaching hospital would give me a much more open minded opinion than a radiology center.

    A few weeks later I traveled to Portland for my 2nd opinion.  First of all, let me say I was really impressed with this radiologist.  I will call her Dr. M.  Seriously, she was amazing.  Here are some of the things she discussed with me:

- If she just looked at my pathology report...at first glance she felt without a doubt I needed radiation based on my age, 2 positive lymph nodes, and the size of my tumors.

- BUT then she looks at the data.  She said the data is confusing.

There were 2 studies published in 1997.  Women with my pathology it was shown that radiation improved local control/recurrence and survival.  This created a whole new group of patients they didn't previously treat with radiation.  But, she said there were flaws in these studies. She said a lot of people now think that the study is outdated too, because chemotherapy and hormone treatment have improved greatly since those studies.   Since those studies more studies have been done to look at who specifically in that pathology group really would benefit from radiation.

- Looking at the data from the more recent studies she thinks my chance of local recurrence in the chest wall or lymph nodes is probably 10-12%.

- Dr. M said radiation would reduce that down to 3-5%.  BUT, it would probably NOT improve my survival.  She said my survival benefit would come from chemotherapy and really hormone therapy.

- She said if my tumors were bigger, if I was estrogen negative, if I had more nodes involved, if I was less than 40 years old she would have said radiation was absolutely necessary to survival because my chance of recurrence would have been much higher.  She said I am in a weird middle group.  That my case was controversial.  She said if you got a room full of radiology oncologists there were would be a LOT of discussion and disagreement about my case.

- She did say that radiation would be a benefit....a small one, but still a benefit.  But, that I needed to look at all the negative side effects too and then make a decision based on what was best for me.

Here are the negatives she discussed with me:

- About 20% of my right lung would be permanently scarred.  She said I probably wouldn't notice it unless I became a runner (that is funny - me a runner?)

- During radiation I would lose hair in my armpit, have sore ribs, and be tired.  She said I was young enough that I would bounce right back.

- It would also limit my breast reconstruction options.  It would make putting an implant in very difficult/impossible because the skin would be scarred and not very stretchy.   I would also have to wait a YEAR after radiation is over to start reconstruction.  YIKES....to be lopsided that long would be AWFUL.

- very small chance of causing thyroid problems

- very small chance of causing a brand new cancer

- Can cause soreness in the ribs/chest wall for a up to a year after radiation ends

She also talked about different breast reconstruction options.  There are some pretty neat options out there.  I asked her who she thought was the best plastic surgeon was.  She said she was biased, but she gave me a name of a lady at OHSU who she said did AMAZING work.

So....what did I decide???  After discussing it further with my husband we both felt that it was best for me not to do radiation.  I am sure there are people that would disagree with me, but I feel really good about my decision.  I have faith that I have made the right decision and I am going to go forward with my journey without fear.