I lost my husband to complications from diabetes in 1995. Seventeen years later, I was diagnosed with pleural mesothelioma. I never remarried. I had been independent for a very long time when I began my journey with this rare cancer. When I received my diagnosis, I didn’t think about not having a significant other in my life to help me through it. I simply thought about me — what I needed and what I wanted.
Recently, I read an article in The Washington Post by Joan DelFattore, Ph.D., a former professor of English and legal studies at the University of Delaware. She shared her experience of battling cancer as a single woman with no children. The first oncologist she saw questioned if she could manage the challenge “alone.” He talked over her when she tried to explain her strong network of friends and extended family.
DelFattore’s only hope at survival was a combination of two chemotherapy drugs, but her oncologist felt the standard of care would be too harsh for “someone in her situation.” Thankfully, she moved on and found another oncologist who gave her the recommended treatment.
Using her background in research, DelFattore reviewed 59 studies based on the Surveillance, Epidemiology and End Results Program database. She found alarming differences in treatment rates between married and unmarried cancer patients. These findings concern and upset me, both as a former registered nurse and as someone who went through a cancer diagnosis as a widow. It’s appalling that medical professionals could judge a patient and dictate their treatment options based on their marital status.
Here’s what I have learned since being diagnosed as a widow:
1. Patients need to have all the information.
To me, doctors have no right to withhold information from a patient. Even when my husband was alive and we had to make medical decisions, we both wanted and expected to have all the information laid out for us so we could make the most informed decision possible. It’s anybody’s right to have all the facts before making important choices about their health and life.
Yes, medical information can be difficult to understand — especially regarding a rare cancer such as mesothelioma — but the best doctors will take the time to explain a patient’s treatment options so they can make the decision that’s right for them. For example, some mesothelioma patients may elect for palliative treatment options and a better quality of life, over an aggressive surgery that may extend survival. Some may be adamantly against chemotherapy, even if it may improve their chances.
But for a medical professional to not give a patient all their options — for whatever reason — is just wrong, and I sure would never go to them.
2. Find a doctor you can trust.
I have a great relationship with my medical oncologist, Dr. David Jackman at Dana-Farber Cancer Institute. From day one, I was upfront with him that I didn’t want anything sugarcoated or held back. He’s respected this request and has always been a straight shooter with me. He’s never questioned whether I could handle a particular treatment based on my family dynamic. That’s the way it should be.
Doctors should never withhold treatment options from someone based on a prejudgment. I can’t imagine what I would have done if it happened to me. In my case, I was probably more prepared to face cancer than someone who was reliant or dependent on their spouse when it came to decision-making. I have family, friends and even acquaintances who will now come to me and ask questions because they know I’m well informed. They ask me about insurance or medical problems. I’ve even gone on appointments with them, listened to what the doctor said and helped friends ask the right questions.
3. There’s more to every situation.
I understand doctors are human and sometimes jump to conclusions like the rest of us. But it’s important to know there’s more to every situation. One of my brothers has accompanied me to most of my medical appointments since my diagnosis. At the beginning, Jackman and his staff didn’t know he was my brother. They assumed he was my husband or significant other.
Obviously, they know all the facts now, and I have a great working relationship with Jackman and his staff. But this goes to show that doctors often look, see and judge before getting the whole story. Just as it’s important for patients to have all the information, doctors should also have all the facts and be willing to investigate before making assumptions about a patient’s personal life and support system.
It’s not often you find someone who is totally alone. You may have lost a spouse or have no immediate family members around, but you may still have support from close friends or extended family. Everyone’s situation is unique. Usually there’s someone who can act as a support system.
Organizations such as The Mesothelioma Center at asbestos.com and their team of patient advocates are another example of the help that is out there. The group’s registered nurse, Karen Selby, helped me find the right specialists and make difficult treatment decisions after my pleural mesothelioma diagnosis.
There are, of course, exceptions. I have a friend whose wife is very ill. My friend was her primary caregiver when he was diagnosed with cancer. He went through debilitating treatments while caring for his wife. What if he has a recurrence, and he can no longer be his wife’s caregiver? I look at his situation and still feel it’s best to offer him all the facts and let him decide.
That’s what it’s all about — put the decisions in the hands of the patient and their support system, whatever that support system may be. If a patient then feels they are not comfortable with a particular treatment option, based on any reason, they can look at alternatives.
And if you feel your doctor isn’t being transparent enough with you, it may be time to find another doctor.