What Are You Reading about Testicular Cancer – Trends and Topics

 | In 2022, 10,000 men will be diagnosed with testicular cancer. Podcast host Joyce Lofstrom discusses testicular cancer headlines from news alerts and her experiences talking with cancer survivors. She covers the topics of harmful forever chemicals – PFAS as one – linked to testicular cancer, life after completing the cancer journey, healthcare insurance coverage, and finding and receiving the needed care during and after cancer. 

Transcript

Season 2, Episode 14:

What Are You Reading about Testicular Cancer: Trends and Topics

00:00.00

Joyce Lofstrom

Hi, this is Joyce and it's just going to be me today talking with you and I just want to talk a little bit about some of the testicular cancer headlines I've seen in the recent weeks and I'm talking to you in mid-August [2022], to give you an idea of when those headlines appeared.

I use a Google Alerts, which is how I get most of my news on testicular cancer, and on Twitter too. I'm just going to look at an alert from a couple months ago. And what I am struck with when I look at these headlines, it's a couple of things. One is, this actually appeared after June, but is recurring: concern about the PFAS contaminants in the environment—really, across the world; but I'll talk specifically about the U.S. There are repeated headlines about that on water being contaminated--concern not just with testicular cancer, but other kinds of cancer that seem to be linked to these chemicals. They call them ‘forever chemicals,’ meaning that we all have them and, you know, some amount in our bodies, and they can now measure them and it's pretty scary that it's been going on for many years and just now we are more aware of it.

And we want to do something about it, and I think I say that as the mother of a son who died from testicular cancer. But really, as a mother or a parent in general, when you hear about this type of thing and. Just wonder what you can do about it. I think that's something for all of us as consumers to keep up with, and I will. I know the Chicago Tribune did a big study and investigative reporting, with a series of articles on it. So that's something I can give you more information about.

02:39.14

Joyce Lofstrom

The other thing I notice in some of these headlines is, I'll call it, the knicks of people getting testicular cancer. But it seems it makes sense in a way, you know, sports figures who have been diagnosed with testicular cancer, and you know I see a lot of headlines of people who are just diagnosed and or starting their journey and then others who have been through the treatments,  the chemo--whatever it is they have had to do and are back on the field or wherever they might be playing. I guess my point in talking about this is just kind of the categories of topics that are covered in these alerts. So, here's a headline back to the PFAS. And I'm using the abbreviation because it's much easier. In this headline from a town in Illinois--Belleville, Illinois--which is by St Louis I think, it says that a new law signed in to law in Illinois makes it illegal to incinerate a class of toxic chemicals known to cause cancer and other health problems--and these are the PFAS. If you spell that out, it's per- and polyfluoroalkyl substances.

This new law says they can no longer incinerate these chemicals, and this is related to the Department of Defense because this ingredient is used in firefighting foam. It was also used at military and installments such as Fort Scott Air Force base. The other thing that's kind of scary about this ingredient or this chemical is that this group of chemicals is also very common in consumer products such as non-stick pans, waterproof clothes, microwave popcorn bags, fast food wrappers and stain resistant items.

05:21.76

Joyce Lofstrom

They also link PFAS to thyroid disease, low birth weight, reduced responsiveness to vaccines, increased cholesterol, liver damage, kidney cancer, and testicular cancer. And these chemicals are unregulated in the U.S., according to this article. So there's just a whole lot of information on what they are and then also the health risks that we all might be exposed to. And they're talking about if you live close to a place where there’s a manufacturing plant that would produce PFAS, then you would have need to have some concern about that. So this article just goes into that those details. Again, this was June 8th [2022] from Belleville News-Democrat reporter Chelsea Landis. So if that's something of interest to you, I would look that up at the Belleville News Democrat website--it's now illegal in Illinois to incinerate toxic chemicals known to cause cancer.

That's just the beginning of that topic from two months ago and I think the other thing that if you do this type of alert for any topic. There are always some articles about how to prevent or how to be aware of testicular cancer, which I think is very helpful because it's basic information and I bet most of you listening know this already. But if you don't, It's important to be aware of it. So in this article which is from the St. Luke's University Health Network and the Penn Foundation for Behavioral Health Services, it talks about how to stop the spread of testicular cancer and it's, really, comparing what I think is a good comparison: the need for men to check their testicles as women check their breasts for lumps. It kind of sets the stage for us about testicular cancer: you know, it’s not as prevalent as many other cancers, but I think that's why it makes it important for us to keep building awareness.

08:05.52

Joyce Lofstrom

Because without us building awareness, that number will go up--so it's real basic. You know the whole thing about self-exams and making sure that we do it, men do it, and if you find something, make sure you go check it out--which is really the message for everybody.

On these podcasts that I've done, it’s to tell people not to wait—and not just men with testicular cancer concerns, it's anybody with anything that might seem kind of weird. Avoiding going to a doctor about it because it's scary and you're afraid--it's sometimes easier just to let let it go and think, oh well, you know, it'll be all right and I won't have to worry about it, and things like that. It's better to find out. I mean, there's no other way to say it. That's just a basic concern.

I'm looking at some other headlines back to that topic of the chemicals. Here's an article about chemicals in tap water. This is in New Jersey, a story about a young man in New Jersey who developed testicular cancer and they're saying contaminated tap water might have been the  main reason for his cancer. It was five years ago, and he was in Middlesex County of New Jersey, and he was 25 at the time. So he had his testicle removed, and had chemo to treat it.  So again, it's back to the water, and they measured this was PFO--another chemical that is of concern and it's part of this group of chemicals, the PFAS chemicals.

This article just goes into what happened and what they did, and concerns that the water was contaminated because there was a chemical manufacturing plant near the water source and that's how that chemical got into the water and again it's just something to think about.

10:49.33

Joyce Lofstrom

Now I don't live near a plant that produces these chemicals, thank goodness. But many people throughout the country probably do live near plants that produce different things. So I think again, if you do, maybe that's just something to look into. It doesn't mean your water's contaminated, but it's worth finding out about it. That kind of goes back to our whole thing of protecting the environment and, you know, keeping people safe.

I think the other thing when I look at some of these testicular cancer stories is, I think about  Max, my son who died, and I mean, his cancer was genetic. He was born with an undescended testicle, and we were told he didn't have a testicle on that side, so nobody worried about it, including the doctors.

You know my message on that has always been, if that is your situation, or your loved one’s  situation, then you really need to go check it out and ask about it and make sure that they can find where the testicle might be or just have all the information as your son gets older.

Now here's an article that I've seen this several times. It's a new procedure--new surgery for having an RPLND [Retroperitoneal lymph node dissection] and this doctor is in San Antonio and it's a less invasive, more robotic surgery to remove lymph nodes that you get removed with that. It’s really invasive, RPLND surgery. I've read about this surgery, and he has been doing it successfully and he can do it without harming major blood vessels, which is also very good.

This paragraph from the article, and then I'll give you the source, says ‘instead of an incision running the length of this young man's torso, Dr. Mansour has adopted robotic surgery. Using five small half-inch incisions to remove the lymph nodes after everything was removed, the big lymph node is no longer there. The doctor said with this kind of a surgery there's a less of a chance of infection, less blood loss, less pain.’

13:28.53

Joyce Lofstrom

You also have a shorter hospital stay--down to about two days in recovery and two weeks after. That's a big deal for any of you who have been through this. If this becomes protocol I think that's good news for anyone looking to have this surgery.

So this next article is from television station WAFB local news outlet, Baton Rouge, Louisiana, written by Marshall Lewis on August 4th, 2022, so if you just go to WAFB News and look up August Fourth you'll find this article with the headline of stopping the spread of testicular cancer. It's very interesting, and it's a short article, but it also talks about this new procedure. So I think that's one to look at as well, and to think about as we see advancements in treating testicular cancer.

But what else can we talk about with this? I think another topic that comes up in these headlines is fertility, and what men have to do to preserve their sperm to have children later after their surgery, or chemo. You know, I think you know I've talked about this with a couple of the men I've interviewed, and this happened with Max. It seems that the request to preserve your sperm often happens quickly, meaning, so oh I have to have the surgery tomorrow and by the way you need to go over to this office and take care of your sperm and make sure you have some now. I'm not a man, and so I can't talk about it from the perspective of that, but I can talk about it based on Max and based on these other young men I've talked with--which is basically  you know you have to do this now in the middle of worrying if I'm going to live or die, and getting ready for surgery or whatever, chemo in some of it. 

16:13.62

Joyce Lofstrom

It's just it's the way the situation unfolds and you've probably noticed that when men are diagnosed with testicular cancer, surgeons don't want to wait. They want to take off the testicle if that's what they have to do, start the chemo, and get going. So I I don't have any other insights on that for what you have to do, it's a huge component of dealing with this cancer and hoping that you're going to be okay. So many men have done this successfully and have had children after their treatments. You are told you ‘have’ to do it-- if you want to do it So maybe not everybody wants to do it? [bank sperm] Something to think about.

18:47.64

Joyce Lofstrom

The other thing when I look at some of these headlines is health insurance coverage. You know Max also told me that when he was just trying to find out what was wrong with him when he had this pain in his back, and he was at a urgent care clinic in a little town in Wisconsin where he was working. Another young man came in and needed treatment for something, but he couldn't get it because he didn't have health insurance.

Again, this is six years ago, so 2016, but Max said to me how lucky he was to have health insurance. At that time, you know, he was on mine because he was under 26 and that was good. He had good coverage but it raises the point of people who don't have that benefit.

People who don’t know what are they going to do. And yes, there are public hospitals, there are places you can go and ask for help and so forth, but often that's challenging when you're in the midst of this health crisis. So I mentioned that and here's a headline about it, a cancer survivor in the UK who slept in car for last eight months because he can't find affordable accommodation in Jersey--this is jersey in the UK. Because he didn't have money to get an apartment or what he needed, with this guy, the amount of money he made wouldn't cover his rent and so he's homeless. He was diagnosed at 23 was testicular cancer, given the all-clear seven years later. So it's just the situation, there’s not a lot more information about him what he's doing. He's trying to get access to government housing. But apparently whatever he needed didn't work, and so it's just it's a situation I think about a lot because in my opinion, poverty is probably the biggest issue or challenge in the United States. Until we address poverty, I don't think a lot of the other issues that we face will be solved. That's a big ticket to say, oh just solve poverty, I mean how do we do that? But that’s just another thought on health insurance. 

 21:29.97

Joyce Lofstrom

So this guy was actually in a relationship that fell apart. So that's why he has wound up with his car as his home. So there's there's always more to the story. But it's it's been going on for him for a long time to find a place to live, and this was an article in The Jersey Evening Post on June 7th [2022] and the headline is, Cancer Survivor Sleeps in Car. As I said earlier, for the last eight months. So, it's a topic that comes up on any kind of illness, because if you don't have health insurance or you don't have the money to take care of yourself then it's more than a challenge. It's life threatening. I think you know that's something many people face. I guess my question is,  what can we do about that? There are resources like American Cancer Society and others that  may have help, but maybe not often. I know they have a way to direct people to resources for financial help.

I think the other thing and that I'll end with is the kind of family link, the genetic link, and I've talked about this on one of the previous podcasts. You know, there have been generations [with cancer] and I’ve seen just a couple of these mentioned,  one on Twitter, and then one um with another connection through Max's dad, Chuck. In one story, the grandfather, the father and the son, they all had testicular cancer. They all survived. 

But again, that's a lot. I guess it's no different than women with a lump. And I know that: with my family--I'm adopted--but my birth family, all the women, all my aunts, including my birth mother, except one and there's five of them, had some kind of cancer. The one that didn't have cancer, who was the oldest, had Alzheimer’s, or dementia. But all the other women had some kind of cancer in their lives. Most of it was after menopause. But I find that that interesting I mean I've had it as well.

But my cancer I know was caused by radiation in 1960s for acne. I had zits and we went to a dermatologist who told us he would give me ‘light treatments,’ which included putting a lead vest on my chest to protect it--from the ‘light treatments.’ They didn't cover up my neck, and that's where the cancer started, in my thyroid. So the family connection, the genetic connection, I think is worth paying attention to if that's a situation in your family.

This is, just as I said, more like a trends conversation about what I see and what you might see when you read about testicular cancer. The other topic is about fitness. A lot of people with any cancer, not just testicular cancer, survive and then decide to start running marathons or do something to get back in shape, and probably to get confidence back or feel better.

It can be as simple as walking 30 minutes a day it doesn't have to be a huge endeavor to get fit. I think that's another way people have dealt with it. I think one of the people I talked with on the podcast ran the New York marathon with the Canadian team, and so he had been running marathons at home. He was working with his students. He was a teacher to help them learn to walk and run [for fitness], so you know there's lots of ways to give back that may not be directly to testicular cancer. But better lifestyles and healthy living, of course, is really worthwhile.

So that's kind of what I have right now. I hope everyone is having a good summer, wherever you are, and we will be back with some more podcasts and guests in the weeks ahead. That's it and enjoy the day. And if you want to listen to some of our podcasts, you can go to the Max Mallory Foundation and just click on podcasts. We're at http://www.maxmalloryfoundation.com.

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