Managing Long-Term Survivorship

The concept of long-term survival was not even a consideration when Gregory Kalemkarian, M.D. started his oncology practice. Dr Kalemkarian spoke to us at a Lung Cancer 101 program earlier this year. He is the head of Thoracic Oncology at the University of Michigan’s Rogel Cancer Center and his words caught my attention. Dr Kalemkerian discussed changes in practice that include the patient becoming an active member of their care team; encouraging patients to understand everything they can about their disease; and he believes there should be a doctor/patient conversation about treatment goals.

Changing the way we think about survival

Long-term survival means the emergence of long-term side effects. And short term side effects have lasting repercussions. For the growing population of Stage IV survivors, this means living with long-term problems. Some side effects used to be ignored because the patient would be gone in a few months. The thought was side effects would only be a minor inconvenience in the greater scheme of things. Dr Kalemkarian told us this type of thinking is changing.

Getting a cancer diagnosed and staged requires a lot of testing but there are two additional tests I would recommend newly diagnosed patients seek. They include a hearing test and a bone density test.

An unexpected side effect: hearing loss

Something that’s a minor irritation for a couple of months will become a major irritant in a couple of years. I have hearing loss and tinnitus. Both are known side effects of cisplatin. When a child is set to receive cisplatin they are usually given sodium thiosulfate in the hopes it prevents damage to the inner ear. There is no other treatment. When I know someone is about to have cisplatin I urge them to have a hearing test. Some insurance companies pay for hearing aids when it can be demonstrated that hearing loss is due to a treatment.

Breaking bones

Osteopenia may cross into the osteoporosis zone. Chemotherapy and radiation may both require the use of steroids. Steroids relieve swelling caused by radiation and nausea from chemotherapy agents and do a lot of good. Steroids also leech calcium from bones. For me, this meant compression fractures of 4 of my vertebrae. Three of the vertebrae required repair via kyphoplasties which help to restore some of the height to the bone and reduced overall loss of height for me.

It’s not just my back. My ribs have taken a beating. Every time I laid on a metal table for a CT I experienced a compression fracture of a rib. Once a shower chair collapsed on me re-breaking several previously healed fractures

Advice to the newly diagnosed

Prior to my cancer diagnosis, my osteopenia had been managed with Vitamin D, calcium, and exercise. If I had had a post treatment bone density test to establish a new baseline we would have realized how brittle they’d become and I might have started on alendrondate earlier. This would have saved me a great deal of unnecessary pain.

The hearing tests and bone density tests are two I recommend early in the process. There are other tests patients should stay on top of and I will address those next.