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Michele H., AL

I was diagnosed with SCLC last May and have concluded chemotherapy and radiation (right lung) and Prophylactic Brain Irradiation. At this point there is no evidence of cancer where they have scanned me. This is great. Unfortunately, I have extremely low BP 86/63 and a fast pulse 100 and experience a debilitating amount of dizziness and weakness. I also have shortness of breath, cough, headaches, lower back aches and peripheral neuropathy in my feet and hands. I went to my oncologist's team and the upshot is that "if there is no active cancer, there is not anything they can do for me". "We do follow up blood tests and scans and take care of cancer." I've made an appointment with my old Internal Medicine doc and a pulmonologist. When I saw the pulmonologist he asked if an adrenal panel had been run for the low BP/dizziness. I said no and he ordered a morning cortisol test which was low. Then he suggested I go back to my oncologist to get taken care since they had more of my history. I am feeling like there is a really important of post-chemoradiation care component missing from the "system" (let's hope it's just me). This would be some kind of Internal Medicine doctor who is knowledgeable about chemo and radiation side effects and can help you go "Live life" as my oncologist told me when they said my tumor had shrunk enough that they could do PCI. This also makes me wonder about what kind of care I will find if/when the cancer comes back and I choose not to do any more treatment. Will the cancer center show me the door? A funny anecdote: Yoga is encouraged, so I took a one on one gentle yoga class from a teacher who is also an RN. I had to slide down the wall from dizziness after stretching one arm up. She took my pulse and we did the rest of session lying down because my pulse was too fast. I have some appointments set up and do wish there was a discipline for post chemoradiation side effects. My trust with my oncologist is pretty much broken at this point. To use a boxing analogy: She is a top notch cut man, but for now I am out of the cancer fighting ring and I need a trainer.

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