Survivorship (Yale Cancer Answers)

As most of you know, as I get farther away from my diagnosis (it's been 17 years now), I am more and more interested in the idea of Survivorship -- what happens after the diagnosis, and the treatment, and maybe even the cure. The assumption is often that we're "back to normal," whatever "normal" means. But most of us need some help to get there, or to accept whatever counts as normal.

And that's what "Survivorship" is -- everything that goes into being someone who has experienced cancer and is now living that life. 

For this, I want to share an episode of Yale Cancer Answers. This is a local radio show that makes its episode available online. It is put together by Yale Smilow Cancer Center, which is where I go for my appointments. Each week, a different cancer specialist is interviewed for the show. Lately, they've been doing a "50 Years of Progress" series, asking the guest to talk about how their specialty has changed over that time. (Yale Cancer Center is celebrating its 50th anniversary this year, so this is part of their way of looking back.)

Their recent episode on Survivorship features Dr. Tara Sanft, who directs the Survivorship Clinic at Yale Smilow. You can find a recording of the episode here, and a written transcript here, but there are a few things that I want to highlight.

First, Dr. Sanft says the Yale Survivorship Clinic is "one of the nation’s only multidisciplinary clinics specializing in cancer survivorship." That's probably true, which is a real problem, given how important survivorship is. But even if a cancer center doesn't have a separate clinic, many do offer survivorship services through other departments -- maybe social workers or other mental health support, or a dietician, or post-treatment support groups. So if you go to your own cancer center's website and you don't see a Survivorship Clinic, it's worth asking your oncologist if there are other services available to you. Doctors often don't tell patients about those services unless they are asked, so ask.

(You might find something really good. I found out once that someone had donated free theater tickets to a popular show to the survivor clinic, thinking that people recently finished with treatment might like a free night out.)

Second, I think it's interesting that Dr. Sanft, looking back 50 years ago, characterizes Survivorship in the past as being nonexistent. Not so long ago, maybe 20 or 25 years ago, cancer patients were supposed to feel grateful for surviving. The idea that we were supposed to be offered something extra, like counseling or diet advice, was just not something anyone thought about. And as she pints out, patients are still grateful when treatment is over. But that doesn't mean our needs are all gone. We have a whole new set of things that we need. 

I find that change in attitude to be fascinating, especially if we look back 20 years -- not so long before I was diagnosed. It's not all that long ago. You don't need to look back much longer than that -- maybe 50 years -- when cancer patients weren't even told that they had cancer, because it was thought that their delicate selves couldn't handle the news. The families were told, but the patients were told with different words. You didn't have a tumor, you had an "abnormality." We've come a very long way.

Finally, Dr. Sanft talks about "the role of health behaviors in survivorship" -- the things like diet and exercise that we can do to help our recovery, make ourselves stronger, and allow ourselves to keep living the lives we want to, that we are able to. This is her big focus as a researcher, and I appreciate it. I like the term "health behaviors," because it gives us some control. Our behavior is something we do, not something that is done to us. There is plenty that we can't control, but we should control the things that are good for us. That's not always easy.

And that relates to one more thing that she points out as she discusses the way things have changed over 50 years. She says people with cancer sued to be called "cancer victims." That one hit me hard.

I remember years ago, when I was first diagnosed, having  conversation with someone I worked with. For some reason, we were talking about labels for cancer patients. She told me for someone who was less than 5 years from diagnosis, they were called a Cancer Victim. After 5 years, you're a Cancer Survivor."

It just made my blood boil. First of all, you're a survivor from the day you are diagnosed. More importantly, I'm not a "victim," and I don't like being labeled as one. 

There's a kind of helplessness that comes with the label "victim." It's very much in line with that 50 year old thinking. You have cancer, you're a victim, you're helpless, and if treatment keeps you alive, you should be grateful and just go away and live like nothing happened.

Nope. I'm going to talk. And part of my talking is to thank the people who have helped me in any way. But there's so much more to be done after the treatment stops. And I want to be an active participant in all of that. I want to make decisions and do what I can to live the life that I want to live.

So I hope you'll give the Yale Cancer Answers episode a listen. If nothing else, it's a good reminder to find out what you want and figure out how you can get it.

Take care.

When the Doctor Calls

Yesterday morning on my way to work, I got a phone call from an unfamiliar number. My wife was driving, which makes it easier to answer phone calls, but I didn't recognize the number and started to put my phone away.

But then I remembered that I was waiting for a call from the dermatologist.

I had an appointment last week so she could check on the surgery I had a couple of months ago to remove a Basal Cell Carcinoma and see if anything new had popped up. She found a couple of Actinic Keratoses on my head, as usual, and froze them off. Then she checked the rest of my body, and finally my face. (I like to think she saves the best for last.) She noticed a small bump next to my eye. It's been there for years. 

"It seems different," she said. "I think I'd like to biopsy it, just to make sure it isn't a Basal Cell."

She removed it and said she'd call me with the results in a week.

So I remembered that when the phone rang. I picked up and put it on speaker phone.

"Hello, is this Robert?" she said. (Doctors always call me "Robert," rather than the more familiar "Lympho Bob.")

"Yes it is."

"This is Dr. M. We have the results of the biopsy...It's benign." She said what kind of growth it was, which I don't remember, and said if it grew back, and it worried me, she could biopsy it again, but it was all fine for now.

I thanked her and hung up.

My wife said, "Well that's a nice way to start the day."

I agreed, and said, "When she started talking, I was trying to get a sense of whether this was going to be good or bad from here tone of voice."

My wife laughed. "Me too. She sounded happy, but I didn't know if that was because it was good news or because she was trying to be positive about bad news."

It's amazing to me that even after 17 years, that same feeling comes back, and those same strategies kick in. I've had several conversations with doctors about blood cancer diagnoses -- the first diagnosis 17 years ago and then results of scans, or of blood work that was a little off. And now I've had two skin cancer diagnoses, and a couple of others that ended with negative biopsies. 

And every time, every conversation, that strategy kicks in of trying to guess what's coming. The actual diagnosis -- yes it's cancer or no it isn't -- comes at the end of the sentence, after about 10 seconds. But somehow our wonderful brains make a thousand calculations in that 10 seconds. Is her voice happy or serious? Does she sound busy and this is a routine positive call, or is she quiet, behind closed doors, where she can focus on giving negative news?

There are even more clues to analyze when it's person. Did it seem like she lingered outside the door, trying to get up her courage? Is she avoiding eye contact? Did she breeze right in, lighter on her feet because this was going to be an easy conversation?

I'd like to say I've gotten better at doing those calculations after 17 years. I'm not sure I have, and I'm not sure it's a skill I actually want. 

But I also know that I'm not the only one who goes through that process, looking for clues and making calculations in mere seconds. We cancer patients are like computers. It's not artificial intelligence. It's about as real as it gets.

And that was my thought as we drove on to work. It just gave me a sense of belonging, of being part of a large group of people who unfortunately don't want to be a part of that group, but are stuck with it. But we've found each other, and that's what matters. The things we go through are not just things that we go through alone. There are things that we share that connect us -- experiences, feelings, desires. We are not alone.

My wife was right. It was a nice way to start the day. 

Take care, everyone.