now has two primary cancers: a renal clear cell carcinoma and an advanced pancreatic neuroendocrine tumor (spread to the liver). Despite his diagnosis, he is still his old self, but better. He volunteers a ton, is an advocate for patients and integrative oncology and takes pretty good care of himself. He is all about his next adventures and refuses to let cancer get in his way! And most importantly, his sense of humor is better than ever.

Burt Rosen

For those of us who live in this world — the world of cancer — we have all heard of the term “scanxiety.” In my mind, it means the fear of the unknown when it comes to getting the results of your scans. Are my tumors spreading? Are they growing? When you don’t know, but are about to find out from a scan, you develop scanxiety.

Last week I had scans. I am not usually prone to scanxiety, but since I know I have another major surgery in the near future, my spidey senses do tend to tingle a little bit when I get my scans.

Luckily, I am stable, so there is no need to push me into surgery today. My next scans are in another three months so I can rest my scanxiety until then.

But I am still on my treatment which is a once-monthly shot (Somatuline [lanreotide] for those familiar with neuroendocrine tumors). I had my last shot the same day as my scans, almost two weeks ago.

The side effects of the shot are not consistent. I have had shots with no side effects, shots that resulted in bad diarrhea, fatigue issues, issues the day of the shot, issues two weeks later, etc. Finding a pattern is tough because I don’t really have one.

This time, I have had way worse fatigue for the past two weeks. Not debilitating, but I am a person with a lot of energy and I have definitely slowed down. If my energy level is usually a seven (or pretty close), lately it’s been a four. I hate fatigue as a symptom because it makes me feel like I am sick and stops me from doing some of the things that I wish I could do.

Here comes my big epiphany. The scans are only one small part of my diagnostics, but the one test that actually has an anxiety term associated with it. Why?

I know enough to be dangerous, so I pushed my doctor to do a complete blood cell test, a comprehensive metabolic panel and an iron panel. These are all blood tests to see if my platelets, iron, hemoglobin, etc. are at lower numbers and if that is what is causing my fatigue. There is no such thing (to my knowledge) as “blood testiety,” but why not?

Scans can just tell me size and growth. That’s only one part of the picture, and I would argue, not the most important part (that would be how I feel, but that's just my opinion). They don’t tell me how I feel, how my body is performing, how my blood is doing, why my symptoms are what they are, etc. Scans aren’t even close to 100% accurate, as we all know.

So why is “scanxiety” a thing, but there are no “-ietys” attached to other tests? Is it because it’s a more expensive test? Because it needs more scheduling? Because a tech does it?

I can’t figure out (and I don’t have an answer)why scans are considered the biggest test we get. I used to consider them critical too, until I realized this week that a scan can’t answer why my fatigue has gotten worse.

I had a great conversation last night about this topic with my wife. She raised some really good points. For example, in addition to being an “event,” a scan offers something tangible: images that you can see and measure and can drive discussion. Scans make things real. You can see parts (or all) of the human body and see how the tumors fit into the overall structure. It almost tells a more visible and understandable story, which makes it more of a thing.

A blood test, or other tests, tend to offer data points. Data points are numbers on a spreadsheet that don’t have context, the way a scan does. Unless you are analytical, the average person won’t know what to do with data points, but they will understand photos. Maybe a good metaphor is having a baby. Ultrasound photos are a big thing. They are scheduled, show images, show context, etc. As opposed to the blood tests which no one talks about. I am not sure if that’s a perfect metaphor, but it helped me understand!

So that’s what I am thinking about. I am putting my scans in perspective, advocating more for myself to get the tests that I know I need, lessening (or trying to) my scanxiety and getting a better overall understanding of how to know how I am doing.

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Anxiety over scans makes sense, but isn’t there more anxiety about other cancer tests, too?

Anxiety About Scans and Other Cancer Tests

Look, let’s be honest. No one wakes up and thinks, “Boy, I wish I had cancer,” but here we are. For me (and I am just me, we are all individuals) I chose to learn from the experience and change my life. What used to matter to me no longer does, and what didn’t matter to me might matter more.

Click to see how different my perspectives are before and after cancer.

Since I am a visual thinker, one day I decided to diagram out what my life looked like before hearing the “he knows he has cancer, right?” and after. This is what I came up with.

You can see some of the biggest shifts for me. I was on the career treadmill before being diagnosed with kidney cancer and a pancreatic neuroendocrine tumor. Chasing promotions, more money, more responsibility, more people reporting to me, etc. I like to think I wasn’t too cutthroat, but I definitely had career ambition.

Now? Life takes center stage. Living every day, one day at a time, appreciating every day, and being thankful for all of the experiences and all of the little things in the world around me are what matter. When I look for a job now, the title doesn’t matter as much. What matters is that I find a role where I feel valued, I work with great people and I learn a ton. Being more and more senior doesn’t even enter my thought process.

Family is even bigger than it used to be. I spend a lot of my time figuring out how to make my diagnosis easier for my family. One of the things I’ve realized is that seeing them experience and enjoy life makes me feel better. Nothing makes me feel better than when my wife or kids (I have two) are experiencing new things and enjoying their lives. This sounds selfish and a little bit “all about me” but it makes me feel better. My family is made up of the most important people in my life.

Friends have become much more important to me. I am not a guy with a ton of close friends. I used to stress about that until my therapist once said to me “It sounds like you have some good friends, why not focus on deepening those relationships and stop worrying about quantity?” He was very wise. That’s been a focus for me. I feel like my better friends are even better, and any newer relationships are even deeper.

Friendship is an interesting topic. I no longer care whether everyone likes me. If I matter to you, and you matter to me, we have a real relationship. If it's only one of those two pieces, I don’t plan on investing too much time.

The other major difference is self-care, one of the overused terms of our time. For me, self-care has become self-learning and self-listening. I have learned a ton about myself, and I ask and listen to myself all of the time. I ask myself everything. What should I eat?When should I sleep?What treatments are right for me?I’ll never forget having a doctor tell me that I needed an upper endoscopy. Old Burt would have said fine and done it. New Burt said ‘No, I don’t feel as if my body can take it and it will do more harm than good.’Later, I had another doctor agree with my instincts.

So, I guess all of this is to say, ask yourself, “Self, how have I changed? What used to be important to me that isn’t anymore, and what wasn’t that is now?” You might be surprised at some of the answers or it might confirm what you already know. Either way, you will understand yourself a lot better!

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When life hands you cancer lemons, what flavored lemonade do you make?  

Appreciating Life More Than a Career After Cancer 

When you are diagnosed, and go through treatments and surgeries, you often fall into a “Woe is me” mode (and deservedly so). It’s very easy to focus on the things you’ve always done and now question whether you still can.

I was a mountain climber and a rock climber, went backpacking and hiked the hardest hikes I could find. When my treatments started (and by treatments, I include everything from chemo to meds, surgeries, supplements, acupuncture, meditation, etc.) I lost my energy and “being in shape-ness.” Worst of all, I started to lose some of my desire to do things.

Now, me being me, losing desire is not something I want to do or will allow myself to do. So, I launched a new program just for Burt. I call it my “I Can Do It” program, or ICDI for short (and feel free to steal the idea!).

I realized that I don’t need to summit a mountain tomorrow. But what I do need is to start proving to myself that I can get there eventually.

The things I’ve done since I’ve launched my ICDI program:

I rejoined my gym (guess what? I rarely go now just like pre-diagnosis, but that’s not important. I took the step to rejoin!).

Early on after a major liver surgery, I took a day and drove to the beach and back by myself on the same day. I drove about three hours round trip and stayed at the beach for a few hours, all by myself.

I went on a 7.5-mile hike, again, by myself.

In a more radical bout of ICDI-ness, I took a 1,800-mile, 10-day solo road trip: Portland, OR (my home), Coeur D’Alene, ID, four nights of solo camping and hiking at Glacier National Park, MT, Banff, Canada for a conference, Spokane, WA, and home. It was an amazing trip that proved to me that I am much more capable than I realized!

I took a 2,400 solo road trip to Los Angeles from Portland for a conference about Neuroendocrine Tumors (one of my cancers), saw my incredible in-laws (Ted and Carolyn), went to a Chargers game with my son (talk about pain), saw friends in the Bay Area and drove home.

Recently, I went to New York City for two weeks to see friends and family.

Did a polar bear plunge one weekend in Southampton, NY.

OK, so why should you care about what I’ve done? You shouldn’t. We are all individuals and move at our own speeds (as we should). I don’t recommend that anyone take the ICDI adventures that I have. Here is what I recommend. You do you.

If you love golf, but can’t play 18, play nine. Can’t play nine? Play one. Can’t play one? Go to the practice range and hit as many as you want to. Don’t want to do that? Practice putting on a putting green in your living room.

Let’s say you love writing but aren’t up to writing the great American novel. Write a short story. Write a blog post, and if you really are struggling, write a Haiku.

I honestly feel like it's not about achieving your ultimate goal right away. It’s about proving to yourself that you can take the steps needed to get there one day.

All about the baby steps, one foot at a time, whatever saying you want to use. I think the key is to just do something, anything. As you begin doing stuff, no matter how small, not only will you feel great but you will see what you are truly capable of. You will prove to yourself (the most important person out there) that you can then take the next step. And knowing that you can do stuff is one of the most healing things that you can do.

Good luck! I’d love to hear about the steps you take!

After cancer, taking baby steps towards stuff you want to do is what matters.

Having Cancer Doesn’t Mean You Can’t Do Cool Stuff 

Being diagnosed with cancer is certainly a life-altering event. That being said, so is a chronic illness diagnosis, the death of someone close, the loss of a job, etc.

What helps us get through the bad stuff or learn how to cope with it?

My diagnosis story, like all of them, was unique. I was in the hospital for some other stuff, got scanned, and wouldn’t you know it? Surprise — I have cancer.

In the early phases of post-diagnosis, I realized that my life had changed. I was no longer the person who would care about job titles, salaries, perks, etc., but I was growing up and beginning to care more about others and how I could change the world.

About two months after my diagnosis, I decided to go take a walk in the woods. No headphones, podcasts, music or phone calls. Just me and my thoughts. It was Yom Kippur (I don’t believe and am not practicing) but I decided that this was how I wanted to be spiritual.

My walk and my thinking helped me to crystallize what is important to me (and what I call my strategic plan):

Supporting my friends and family (added in 2023, I review these formally once a year. By formally, I mean when I remember!)

In short, Mattering is what matters to me. I recently met a new friend who is writing a book on the concept of Mattering and became hooked. Now I am slightly obsessed!

Mattering is about feeling valued and adding value. It's not about the size of the value, but about the impact. You can matter to yourself, someone you care about, a community, the world, the universe and so on. What is important is that you feel like you matter and that if you weren’t there, your absence would be felt.

Mattering gives you a sense of self-worth and a desire to make a difference. For me, it gives me energy and a reason to be active and engaged.

So, how has mattering helped my health? Well, I know myself. First, setting up the time and having the mindset to go on my walk and come up with my four principles helped me. I use those principles to guide a lot of my decisions. I am always focused on helping others which in turn makes me feel great and helps my mental health. I don’t sit around thinking “Woe is me,” I sit around thinking “How can I help?”

Since my focus is on healing myself and others, I have been spending a lot of time learning, meeting people, blogging and helping others. I am even starting a nonprofit for people with neuroendocrine tumors in Oregon. But everything I do helps me feel like I matter and am helping others.

The boost my mental health gets from helping is huge. It gives me a ton of energy, a big desire to make an even bigger difference and a drive to help more people. Have I volunteered and gotten involved in too many things? 100%! But I know that the more I keep my brain engaged and the more I matter, the better I feel.

So, my advice to you? First, you are likely already mattering but might not have ever had a word to describe it. Recognize where you matter and be proud of yourself. If you feel like you aren’t, join an organization, volunteer or even just listen to someone else.

The more you feel like you matter to others and are helping, the better you will feel mentally. For me, I am convinced it’s why I feel as well as I do, despite two cancers, one of which is stage 4.

Recently, I have been focusing on the concept of Mattering, and it has boosted my mental health.

Burt Rosen

Anxiety About Scans and Other Cancer Tests

Appreciating Life More Than a Career After Cancer

Having Cancer Doesn’t Mean You Can’t Do Cool Stuff

What Has Helped Me Get Through My Cancer and Feel Great? Mattering!

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