Hello, I'm writing on behalf of my 56-year-old uncle, who suffers from recurrent head and neck cancer. His cancer started at the base of the tongue but has now spread to his lungs. He has six small tumors on a recent PET scan. He's currently living in Mexico but plans to come to the States soon once he's issued a visa. They said he wasn't a candidate for immunotherapy in Mexico, but I'm not sure what kind of testing determined that. Do you know if any treatment options exist? The doctor in Mexico suggested he should receive palliative care and enjoy the remainder of his life. My uncle wants to keep on fighting to the end. What are some suggestions? I can provide the images upon request, thanks.
Reply # - September 4, 2021, 03:36 PM
Hi Cal, Welcome to Grace. I'm so sorry you need to be here for your uncle, though he is lucky to have you.
A couple of things I'd like to share. Stage IVC hypopharyngeal cancer (back of the tongue) cancer that has traveled to the lungs with 7 tumors isn't considered curable. That doesn't mean it's not treatable. This is a type of situation that is highly individualized; previous treatment, comorbidities, present health, PDL1 status, rate of progression, and the person's goals all are considered in the treatment decision making process. Plus a second opinion can concur...or not with the diagnosis. We can't make such recommendations legally or ethically. In such a case a 2nd opinion from someone who specializes in head and neck cancer at a large academic center would be the oncologist with the most up to date info your uncle would need to make decisions including possible clinical trial options.
These videos discuss head and neck cancer. I'm always impressed when these oncologists talk about how they approach things differently when there are no straightforward treatment decisions. The first video from the video library column is worth listening to, Dr. Weiss at around minute 7 discusses his preference for balance between longevity and quality of life.
A PDL1 test the amount of pdl1 a person has on their tumor. When it's less than 1 then he probably wouldn't benefit from immunotherapy. Some studies (talked about in the first video) show that immunotherapy with chemo lengthens life but the side effects can be intolerable which is where Dr. Weiss states his preference of not treating with chemo and immuno together.
There is confusion over palliative care and hospice care, they are different. Hospice care is when you no longer take anticancer treatment and all care focuses on quality of life.
I don't know how his doctor defines palliative care but this is a good definition, "Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment." found here.
Cancer is a nasty, horrible thing and we aren't taught to know when to stop treatment and let hospice in. Doctors aren't taught to help people transition (there is good research that suggests palliative care started at beginning of diagnosis improves longevity. This type of research would have been game-changing if it were a drug being tested.). We learn that fighting to the end is somehow honorable or brave. The fact is many many too many people die while in ineffective side effect inducing treatment when they could have quite remarkable and more months with the help of people who know how to do it well (hospice). Stopping treatment that is only making you sicker and die quicker IS NOT giving up. This might be something your uncle would be interested in.
All the best to you and your uncle,
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.