Young Adults with Follicular Lymphoma

I know many of you are "unconventional" Follicular Lymphoma patients. By this I mean you are young -- often much younger than the "usual" age for a Follicular Lymphoma patient. I was 40 when I was diagnosed. I know how it feels to get that shock of a diagnosis when you're young and healthy. (And I was healthy -- regularly running in 5k races. The healthiest time of my life, probably.)

So for those of you in this group, I have some good news! One the blog's readers, Fer, has started a Facebook group for younger folks with Follicular Lymphoma. You can find it here.

I've had a really nice email exchange with Fer over a couple of months, so I know he's a very thoughtful and interesting person. And he clearly cares about other young FL patients, too. I think this is a great idea -- something I wish had been around was I was diagnosed -- and I think Fer will do a great job with it.

This is the message Fer sent to the large Living with Follicular Lymphoma Facebook group describing the new group:

Hey everyone, I wanted to share something I've been thinking about.

As we all know, FL affects people differently, and I think age is an important factor in that sense. A lot of times, I find myself reading about someone’s experience and wondering whether this an FL thing or an age thing? Many symptoms, treatment responses, and even risks change with age.

Also, when looking for reassurance, I sometimes read things like, “I got to see my grandchildren grow up” or “The doctor said it’s functionally curable.” While everyone's perspectives are super valuable, they don’t always apply to someone who’s still in the middle of building a career, starting a family, or figuring out what this diagnosis means for a longer timeline.

After discussing it within the community and with the admins, I made a Facebook group for young adults with FL—meaning people who were diagnosed before or in their early 40s. The goal is to have a space where we can discuss the unique aspects of facing FL at this stage in life.

The age cutoff isn’t meant to be rigid but a mere suggestion—it’s more about life stage than a number. Many of us are in a phase where we’re still making big life choices, and the way we think about FL reflects that. If you feel like this group would be relevant to you, you’re welcome to join.

This isn’t about separating from the main group—this community is vital for me and I'm sure for you too, and I'm immensely grateful for it. It’s simply about having an additional space to talk about things that might not always resonate with the wider FL experience. If you were diagnosed early in your life and this sounds helpful to you, feel free to join!

Thanks, everyone!

As I'm writing this, there are already over 100 people in the group. And I think there will be a whole lot more joining. I tried doing a little research on young adults with FL, and as many of you probably know, there is very little work done. Some advice -- if you're looking at research in this area, pay really close attention to the dates of the articles. There are a few things out there that try to guess what the Overall Survival rate is for FL patients under 40. They are reputable sources, but they're old -- about 10 years old. That may not seem like a long time, but 10 years in Lymphoma research is like 100 years in other area. OS  rates that were calculated in 2015 were looking at data from 1995 -- just before Rituxan was approved. So that research doesn't account for R-squared, CAR-T, Bispecifics -- any of the exciting treatments that have come about lately.

My point is, there is still a lot that we don't know about young adults with FL, and what we do know is out of date. Whatever picture you have of your situation as a young adult, it is probably far, far better news than it seems.

One more bit to add to my rant -- when we read that FL is "usually something that older people get," I really have no idea what that means. I haven't seen anything definitive to back that up. What does it mean that the "most people" who are diagnosed are over 65? Does it mean that the median age s 65 -- so half of the people diagnosed are UNDER 65? Or under 60? 

My point here is, I think there are far more young people with FL than the medical community recognizes. I did some work recently with a coupe of other FL patients. One was diagnosed in his 20s, and the other in his 30s, and I was diagnosed at 40. Was that a random grouping? Or are there many more of us than it seems?

The Lymphoma community needs to do a better job of recognizing this and accounting for the different emotional and physical needs that come when someone is diagnosed under 40 than when they are diagnosed at 65. I hope that happens soon.

In the meantime, this Facebook group is a great start. I hope some of you can take advantage of it.

And thank you, Fer, for getting this conversation started. 

Oncologist Appointment

I have been spending far too much time lately with medical doctors. Three appointments in three weeks, and all of them related to cancer (diagnosing it, removing it, and checking up on it).

The first two were about my skin cancer diagnosis. Yesterday's appointment was my 6 month Follicular Lymphoma check-up with my oncologist, Dr. H. 

I'll get the important stuff out of the way -- everything continues to look fine.

*************

This was one of those check-ups that should have been fairly peaceful, but wasn't. At least not the lead up to the appointment. I'm just a lot more on edge these days than I usually am, which didn't make things easier. But I also offered to help a friend with something in the morning, and it took longer than expected, so I left home for the appointment a lot later than I would have liked. The drive in was a little stressful, because the roads are lined with snow banks, so everyone is driving a little more weirdly than usual. When I got to the hospital for my appointment, there was a fire truck blocking the garage entrance. (Didn't seem to be dealing with an emergency; just parked.)

I drove into the garage through a different entrance. This garage was built in the 1960's, and the ramp to get up to the higher floors is a large spiral, wide enough for one car, with concrete walls on the sides. So you're always looking around a corner, hoping there isn't anything coming at you. I've been in this garage dozens of times, and it just occurred to me how appropriate this is for a Cancer Center parking garage -- you never know what's coming at you and you hope there isn't anything coming your way.

The garage was almost full, and the few empty spaces had cars parked in them poorly so there wasn't enough room for me to get into one. I had to drive around for about 10 minutes before I could get a space.

I had to keep reminding myself that everyone is on edge in a Cancer Center parking garage. No one is thinking clearly. Everybody's brain is focused on other things.

That forced me to take a deep breath and calm myself down.  But it's hard to be kind when you're focused on yourself and all of your own baggage.

My first stop was at the attendant's desk. Everyone who enters the hospital gets a visitor's badge. The desk attendant had a nice long conversation with the person in front of me. I tapped my foot impatiently. Then I remembered how nice it must have been for that person to be remembered  by the desk attendant. Probably made her day. [Deep breaths. Find inner peace.] Things got better from there. I got out of my own head.

The next stop was the blood draw station. That went pretty easily. The phlebotomists at the Cancer Center are really very good -- the needle goes in smoothly and they rarely leave a bruise. And they're polite and friendly. It sounds funny, but it lightens the mood a little to get a good blood draw.

I got in to see Dr. H fairly quickly, too. The exam went fine, as it usually does. He asked some health-related questions, and some non-health questions. He knows my wife and I have travel plans, now that our kids are older. So I told him about our Rhine River cruise coming up for the spring. We talked about work, and the new stresses there. We talked about my kids and their various exciting happenings.

The physical exam was unremarkable. No swollen nodes. No obvious issues. He keeps offering to see me once a year instead of every 6 months, but I like seeing him more frequently, and he understands that. But he sees my name and his first reaction is to wonder if I'm having a problem and that's why I need to see him so often. 

The blood work results weren't back from the lab yet, so we couldn't talk about them.

He was pleased that I am keeping up with various vaccinations (Covid, flu, shingles. Might be time for a pneumonia shot, but my immune system seems to be holding up, so he's not anxious about it.)

I asked what he was excited about in the world of lymphoma. He's still very excited about bispecifics, and he talked about some of the successful research that's been happening lately. I like to have a plan for treatment, in case I need it. Of course, he said, we'd do a biopsy and use that to help determine a treatment plan. But if I do need treatment again, and it isn't too aggressive, he'd want to start with Rituxan, since it worked so well for me the first time, and then consider a bispecific if we needed to. It's good to have a plan.

And that was it. A stressful ride home, but I had a few moments of peace, anyway. Funny that it came in a Cancer Center.

Hopefully, I won't have any more doctors' appointments to write about any time soon. I'm sure I'll find something else to share with you.

Stay well. May your own visits to the oncologist bring you peace, too.

Skin Cancer Surgery

 As I wrote in a recent post, I was diagnosed for a second time with skin cancer. The first time was Basel Cell Carcinoma. This time was for Squamous Cell Carcinoma. (They are the most common types of skin cancer. If you want to know the difference, the Skin Cancer Foundation is a pretty good place to find information.)

Yesterday, I went in for the surgery to remove it. Everything went fine.

I've done this before, and not all that long ago, so I had a good idea about what was going to happen. I didn't have any questions for the nurse or the surgeon.

This is an in-the-office procedure, at least for my skin cancer. Like the first one, this one was on my scalp, though near the back of my head. I was told to wear a shirt that buttoned, so I wouldn't need to pull it over my head. I have a couple of old button-down shirts in my closet, so I picked one. But first I looked back at the picture I posted on the blog from the first skin surgery to make sure I wasn't wearing the same shirt this time. ("You're ridiculous," said my youngest child when I told them I that I did that). 

I had the same surgeon as the one who did the first surgery. He looked at his work from last time and said it looked great and that he had done a good job. (This was banter, not arrogance. I appreciate a doctor who kind of tests the waters and makes small jokes.)

I sat upright in a chair and the surgeon numbed my scalp. 

"How have you been?" he asked. 

 "Oh, I've been OK," I said. "Except, you know, some skin cancer."

He laughed. "Skin cancer isn't a joke," he said. "But the survival rate is very, very high, especially when it's taken care of early. So it's god that you're here."

He poked around my head a little.

"You have a very tight scalp," he told me. "There are two types of people in the world. I know that sentence can go in a lot of different directions, but in my line of work, there are two kinds of people in the world -- those with tight scalps and those with loose scalps."

I said I assumed he preferred loose scalps, since they were probably easier to work with.

"Absolutely!" he said. "Think of the difference between the scalp of a 95 years and a 35 year old. You, my friend, have the scalp of a 35 year old!"

Like I said, I appreciated some banter.

Then he started the procedure, and in about two minutes, he was done.

He did a procedure called Mohs Surgery, where thin slices of the skin are excised, and then examined under a microscope to see if there are cancer cells present. If there are, the process is repeated until no cancer cells are found. 

As he prepped the sample for the lab, he told me that this seemed like a very shallow tumor, since I caught it early. He didn't think a second round of excision would be necessary. And even better, I probably wouldn't need stitches to close the would. The lab results would be back in an hour.

So I spent an hour in the waiting room. If you've ever been in a dermatologist's office, you know that most of the patients are on the older side. This particular group today seemed to have trouble with their hearing, or maybe with their phones. But in the hour I was waiting, I heard full conversations between parents and their adult children, including some very personal details I probably shouldn't have heard. I also heard a variety of very loud ring tones. And for some reason, someone was doing a google search that their phone was reading out loud. "Searching for...How much cinnamon to add....." No idea what they were adding the cinnamon to. I hope it worked out for them.

After an hour, I was called back in to the exam room. Everything looked great. No further excision needed, and no stitches, either. The whole thing took less than 90 minutes.

When I wrote to you about this a couple of weeks ago, I promised some "handsome photos." But since this is on the back of my head, I can't show you my face and the bandages at the same time. So you get to see my handsome scalp instead. The good news is, as I was sitting on the floor trying to aim the phone at my scalp, my dog Katara decided it was a good time to come in for a hug. So you're not getting my handsome face, but you are getting a heart-warming moment anyway.

So the lesson with all of this is, be sure to keep up your regular check-ups, especially for any and all cancer screenings. Ask you oncologist which ones are important. And when you suspect there's an issue, get it checked out -- early detection is almost always better than later. (Though later is better than never.)

I told you all of that a couple of weeks ago, but it's worth repeating anyway.

Stay well, everyone.