August 2009: radiation therapy and shingles

I should never have had radiation. Toward the end of my chemotherapy, I went to see a radiation oncologist for an initial consultation. We discussed my cancer and the genetic attributes. I told him I was planning on undergoing an oopherectomy and bilateral mastectomy. He explained that my case was not clear-cut, due to the fact that I had only one lymph node involvement. Had no nodes been affected, I would not need radiation, period. If there were three or more positive nodes, I would definitely need radiation. One node was not so clear. He told me that his opinion was that I don’t need radiation because of the surgeries that I was about to have; he felt that I was being very aggressive with my treatment and that that was enough. I was so relieved – that’s what I wanted to hear.

Well, my oncologist wasn’t exactly thrilled with that answer. She wanted to take my case to the “tumor board” and get more opinions. She did and then told me that out of 5 radiation oncologists there, 3 said yes and 2 said no – it caused some controversy apparently. She asked me to go to another radiation oncologist for a second opinion and so I did. This time, I was told that, although it’s borderline, I should just do it because I’m young and I have young kids and I should do everything in my power to improve my chances of survival and minimize potential for recurrence.

My Oncologist agreed that I should do everything I could to improve my chances, too. Soooo…reluctantly, I agreed to do it only because I couldn’t think of a good enough reason NOT to. I was to receive 28 sessions of radiation.

The radiation itself was easy, but going 5 days a week was a pain in the ass. Toward the end I was quite sore and raw in a few places in my armpit area. The sore spots in my armpit began to welt but I thought it was just my wounds healing – so did my Oncologist. It started to spread down my inner arm to my elbow and it itched like MAD! I thought I had bed bugs or scabies! A week and a half later I saw my radiation oncologist for a follow up and she took one look at the rash and told me I have Shingles. Apparently no one bothered to tell me that cancer patients sometimes develop shingles from their weakened immune systems. Had I known this, I would have sought treatment sooner for this rash – as it turns out, I found out that shingles is best treated when the medicine is started within 72 hours of the rash showing up. I was well beyond that.

The medicine I was given did not help at all. It itched beyond anything I could even try and explain. After 4 weeks of having this rash, I woke up one morning in serious pain all over and I had swelling in my armpit the size of a tennis ball. I went to the ER and ended up confined in the hospital for a week with a bad Staph infection!! 

When I left the hospital, the rash and itching was not better. The infection was better, but I had to go home with a drain coming out of my armpit; it came out a few days later.

After 8 weeks of suffering, I went to see my Oncologist for a follow-up visit and she, like me, had had enough of this rash! She sent me to see her husband, who happens to be an Infectious Disease doctor, that day. He told me that it looks a lot like Shingles, but he’s never seen nor heard of shingles appearing on the radiation site like the rash I had. He thought it may just be an allergic reaction to the radiation!

He sent me to a dermatologist for a skin biopsy. The dermatologist agreed. She told me that although Shingles can last for several months, it’s the persistent nerve pain that lasts and not the actual rash. This was the first time I had heard that! So she took the skin biopsy and the results came back a week later indicating no sign of shingles, but there was a bacterial infection.

She gave me a topical steroid cream to help the rash and itch (finally something to help the itch!), another topical ointment for the bacterial infection and an oral antibiotic – Amoxicillin. After just two days, the rash started to go away and the itching dissipated! Hallelujah!

I truly believe that the radiation therapy was ‘the straw that broke the camel’s back’ and that had I not done the radiation, none of this shingles/staph infection/allergic reaction crap would be going on – I know I can’t do anything about it now, but I’m really pissed that I decided to go through with the radiation even though I really didn’t feel it was necessary!