Pardon My Rant...But Hear Me Out
There are several things that I wish medical oncologists would share with us before we receive treatment. These are not life and death issues but they do tend to contribute to a better quality of life for survivors.
We need to talk about hearing loss as a side effect
Patients receiving cisplatin and other platinum-based chemotherapies need to know that they contribute to hearing loss. Patients with hearing loss can experience isolation and depression. I miss half of what gets said or it is badly distorted. Of the long term side effects, this one bothers me most.
Loss of hearing is a side effect of chemotherapy. I learned several years ago that children who will be receiving cisplatin are given sodium thiosulfate to prevent hearing damage. Studies established that it works in a significant percentage.1
At an educational seminar, I asked the Head of Thoracic Oncology at an NCCN designated Comprehensive Cancer Care facility about it. I wanted to know why it is not given to adults. His response was that they give it to children not knowing it will work. NOT KNOWING IT WILL WORK? I was given cisplatin and etopicide not knowing that they would work!
Some side effects of the chemotherapy drugs are not long-lasting but the loss of hearing never goes away. In fact, it gets worse. We have learned that cisplatin migrates to the small bones of the ears and remains there with a far longer half-life than it does in the rest of the body.2
Get your hearing checked before starting treatment
With patients now surviving longer than ever hearing loss becomes an even bigger problem. I first became aware that my (now profound) hearing loss could be attributed to chemotherapy by another patient. He believed that all patients should have a hearing test prior to chemotherapy and another post-treatment.
In many cases, if it can be established that loss of hearing is a result of treatment, the insurance company has to pay for hearing aids. The friend who brought this to my attention has passed on now but many of us have taken up his cause.
Making the patient voice heard
At every local and national patient education seminar, I attended I made my voice heard. I didn’t stop with medical oncologists, I asked every radiologist, surgeon, and researcher I met if they were aware that their patients’ hearing should be tested. Most were aware that treatments cause hearing loss but not one knew that screening is not standard of care.
Patients across the country are asking about it. And we’ve been heard. Currently, there is a clinical trial underway that tests the efficacy of a new chemical combination that researchers hope will prevent hearing loss. It combines sodium thiosulfate with sodium hyaluronate. Patients will receive the solution in one ear and a placebo in the other. They will be randomized as to which ear gets the drug and which gets the placebo.
Know the facts and be prepared
Understand it’s a long-distance between establishing a treatment works and making it standard of care. Until hearing tests become standard of care it’s what you can do about hearing loss. Had I known the effect this would have on my hearing I would still have taken the recommended treatment. However, I would have insisted on including a visit with an Ear, Nose and Throat Specialist (ENT).
Medicare and most insurance companies will not pay for hearing aids unless a clear chemotherapy/hearing loss correlation can be established. Medicare will pay for a hearing test but nothing more. A patient who needs a hearing aid will pay $3,500 or more out of pocket.
If you are about to enter chemotherapy with cisplatin or carboplatin, please demand a pre-chemotherapy hearing test. You’ll thank yourself for it later.
Do you find that staying zen through your lung cancer diagnosis has helped you in your journey?