As I have tried to navigate my wife’s cancer, I have struggled to get answers and have an honest conversation with any of her oncologists. Today I had an honest conversation.
I have done enough research to know that the chemo my wife is receiving for her retroperitoneal liposarcoma, which has now metastasized and spread to her lungs and retroperitoneal lymph nodes, is at best, around 20% effective. When I tried to have this conversation last week with her doctor, a medical oncologist specializing in sarcomas, he redirected the conversation and responded that we need to “tough out” the chemo and “stay the course”. In a phone call today with the same doctor, which had a quieter and more intimate tone, he acknowledged and confirmed what I had already discovered through my research.
My wife’s medical oncologist confirmed that the chemo treatment she was undergoing was at best 10% to 20% effective for her type of liposarcoma, but he went on to say that it was the best and only treatment that we have. If we find that this first combination of chemo drugs is not effective, then there is another combination that we can try, which is also only 10% to 20% effective. The odds are terrible, but at least I have some confirmation from her doctor of what I had read, but had not had confirmed.
We had an important conversation about my wife’s quality of life and at what point we would move to palliative care. Since my wife is spending her days lying on the couch or sleeping, her quality of life, in my opinion, is terrible. She is so weak that a trip to visit her doctor in New York City from Washington, D.C. becomes a three-day affair: one day to drive up; one day to see her doctor; and one day to drive home.
We agreed that she should continue the chemo since it was the only tool in the medical toolkit for her condition until the chemo options were exhausted. We also discussed that they could tweak the chemo depending on the side effects she was having. Her quality of life, as she progressed with chemo, would also determine if she continues with the chemo or moves to palliative care.
We talked about the potential of leveraging next-generation tumor sequencing, i.e. DNA testing, to look for cancer treatments that might be effective. The doctor said that they have sequenced thousands of sarcomas and that they have found that there are usually two genes that are amplified in her particular liposarcoma. They have not, to date, found any chemo drugs that are effective against these two amplified genes. So even though we are going to do genomic testing, it will not be for another three weeks when we are in NYC, and then the results take 6-8 weeks to get back. I do not see this providing any value.
Finally, the doctor asked me how I was doing, which I really appreciated. I had a chance to tell him a little bit about my life and how this was affecting me. While today’s conversation confirmed what I already knew, it also made me very sad. I do not see any clear path to find a magic bullet that can help my wife. It is tragic and very very sad. But I was grateful for the first honest conversation that I have had about the reality of my wife’s situation with one of her physicians.