A Mom Talks about Testicular Cancer - Episode #4

A mom talks about finding the right doctor and navigating testicular cancer treatment.  Joyce Lofstrom, the host of the Don't Give Up on Testicular Cancer podcast, shares her insights based on experience during her son's cancer journey. 

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Don’t Give Up on Testicular Cancer

Episode #4 - A Mom Talks About Testicular Cancer

SUMMARY KEYWORDS

testicular cancer, physicians, chemo, caregivers, resource, Max Mallory Foundation, RPLND surgery, cancer patient

00:00 – Joyce Lofstrom

Welcome to Don't Give Up on Testicular Cancer, a podcast where cancer survivors, caregivers, and others touched by cancer share their stories. The Max Mallory Foundation presents this podcast in honor and memory of Max Mallory, who died at age 22 from testicular cancer. I'm your host, Joyce Lofstrom, a young adult, and adult cancer survivor and Max's’ mom.

00:27

Hi, it's Joyce here, and today I wanted to talk about finding a good doctor if you have testicular cancer. 

I'm just going to be talking based on my experience as a mom of a son who had testicular cancer. And I'm also going to point out some resources that might be helpful to any of the listeners who have recently been diagnosed with testicular cancer or maybe seeking a second opinion if you need that. 

And I can't emphasize enough the importance of making sure that you have a physician that knows what he or she will be doing to help you treat this disease. It's a rare cancer, it's a different cancer as many cancers; it's not just one cancer, it's different types of cancer in each person, different stages, obviously, when you find it. 

And so it's really important as with any surgery, or any cancer surgery, to find someone that has experience in treating patients with testicular cancer, and if you have to have the surgery, the RPLND surgery, someone who has done it multiple times so that you are assured that you are getting the right treatment. 

My comments are not to disparage physicians who are doing this across the country, across the world. It's just a comment that sometimes when you are diagnosed with cancer, your immediate thought is, “I need to do something right away I need to get this taken care of.”

And sometimes that emotion clouds decision making. 

Let me just speak from my experience with Max, my son. When he was diagnosed, he actually found out in the emergency room at 10:30 p.m. at night. He had gone there about 3:30 p.m. that afternoon because of intense back pain. And this was in 2015. So, it's a few years ago, not during COVID. 

But he stayed in the hospital, he had to start chemo right away. He had to bank sperm right away. And you know, it had spread and so we didn't do what I'm saying we had him stay there. We had him begin chemo. We had him begin chemo. And that was it. Because of the severity of the disease. 

I think his chemo treatment was standard. And I also know that his oncologist was good and welcomed as time went on any kind of consult with other physicians who might treat testicular cancer. 

You know, I mention this because there are so many variables that go into this kind of diagnosis, and it's hard to know what to do first. 

Max had cancer that was not the kind that you find in your testicle, like an enlarged testicle, a lump, or anything like that. You know, his was, I'll say, hidden. He was born with one testicle. And even though we thought it wasn't there, it was.  There was a mass in his abdomen. But you can't feel it. 

And so, I think many young men may have a similar experience where it's not always a visible lump that points to testicular cancer. So, that's why I recommend looking at this list and just thinking about using it.

As you move ahead in your care. I want to tell you about another resource that will be helpful to anyone with testicular cancer or their caregivers. And this is a site from the Testicular Cancer Resource Center. The link to that page is t-h e-t-c r-c.org. Again, t-h e-t-c-r-c.org.

04:52

I'm on the resource page of that website and on that page, you will find a list of physicians who treat testicular cancer across the US and the world, really. They list the doctors in the US by state. Obviously, across the world, it's by country, 

I feel like this is a very important resource for anyone with testicular cancer. You can look at this page and find a doctor either in your state or close to you, if you're there isn't one in your state, or your country, consult with them. 

This page and these resources are not meant to disparage, or you know, end the relationship with a doctor you might be working with. Instead, it's a resource for consultation. And for some people, it's been a resource for care. 

We used it and found it very helpful. We used it to access surgeons, meaning, he got through chemo, then he had to have this RPLND surgery. And so, this resource gave us physicians to talk with about the surgery and who could do it, and what it involved, and so forth. And we wound up talking to two different physicians about this. And I recommend looking at this page and thinking about using it for any kind of questions you might have. 

If you're trying to find a physician to do the RPLND surgery, and again, if you are where you want to be location-wise, cost-wise, insurance-wise, which most of us face and make decisions often based on That's another way to do it, or

questions, or if you have questions, and I would say most of them, I don't know. 

But I would say most of them are open to at least hearing from you. And then you can find out what a consult might cost. You know what you might have to do for it. But I would definitely look at this page and think about using it when it comes to your own diagnosis and treatment. 

You know, the other thing is, as you go through it, ask questions. And don't be afraid to, I'm going to say, make demands. But a better way to say it would be, don't be afraid to ask questions. And if something isn't right, ask for it to be corrected. And I think sometimes that's hard to do. 

I've been through cancer treatment, not chemo, but radiation, radioactive iodine, for thyroid cancer, and you know, with all those treatments, you as the patient, you're very vulnerable. You are trying to get well; you're trying to focus on you and your health. And sometimes that's hard to do. 

Based on just many variables, what you're thinking or maybe you're thinking about your job, you're thinking about your income, whatever it might be. But if you have someone with you at the hospital or during chemo, I know right now that's hard with the virus going around the country. But get a list of questions together. And you could do it through the patient record. That’s one way to do it.

08:30

Or, send it to your doctor or call him or whatever will work to get those questions answered. It can make a big difference in what's going on with you. I'm trying to think of just a good example of you know what to do and how basic some of these questions might be. 

So, for example, washing your hands is very important right now, it's always been important in a healthcare setting to reduce the risk of infection.

08:59

And most of the caregivers will be washing their hands Well, they will be wearing gloves during treatment.

09:08

But there were times, again, this is several years ago when I saw that didn't happen. They either didn't wash their hands with the, you know, the dispenser in the room with the hand sanitizer, or most often, it was they did do that, but they didn't wear gloves. 

Now, okay, you could say that's not a big deal and doesn't matter. And theoretically, it doesn't. They have hand sanitizer.

09:38

But you know, I never felt comfortable with that, and it felt that was enough in a cancer setting. In a high dose chemo setting, you should always have on gloves. And again, I'm the mom This is, you know, me speaking about it. But say something; ask them to put on gloves. It's like I said, it may be hard to do. But you're there to get better, to make sure your child gets better, your husband, your son.

So, something like that is really simple. Ask about it, you know, ask for time with the team of doctors. That's something, we saw all the doctors separately.

10:26

I never saw the team come in until Max died.

10:30

You know, they talk, I hope, but ask to meet with them together, once a week. Find out what’s going on. Now, granted, you're not going to be in the hospital room. But if you're in a situation, such as a high-dose chemo situation, or just basic chemo for your son, and you want to know what's happening, find out what the team is doing, you know, you can do a call a Zoom call. You can do a call with everybody on the line, just on the phone without Zoom.

Yes, they're busy. Yes, they have a lot to do. But to take care of patients, I would say, that that's a reasonable request. It won’t be a long call, but it'll be enough for you to find out more about what's going on. And you know, just any kind of questions you have about that treatment, I think is very important for you to find out and make sure that they make time to give that to you. 

And so those are ways that I think will help you get through this, whether you're the patient or the caregiver. I think the caregiver can initiate these kinds of meetings since the patient, if you're in the hospital for chemo, it's hard to want to, you know, drum that up and think about, “I want to have a meeting with all of my doctors.”  

You're trying to just get through the chemo and feel okay. So, again, that's, I think, the importance of having that advocate, a person with you, with you remotely, but just have one and make sure that you can ask those kinds of questions. That's what I would say, is really, really something to think about and to do as you go through this. 

So that's about all I wanted to share. In this one, I wanted to just think about some tips that might help people as they listen to this and are trying to begin their care or think about the care they're receiving, making sure it's what they want, and just learning. 

And you can also find information on the Max Mallory Foundation website. We have articles there about survivors and people who didn't survive. We also have those resources I just listed in terms of finding specialists around the country. 

And again, I really would encourage you to do so. And it's not that you should stop seeing the doctor you have, and it doesn't mean you have to travel far away to get treatment. But at least learn more about these doctors. And if you need more information, get your physician to consult with them. I think it is peace of mind, if nothing else, to confirm what's going on with your treatment. 

I know it helped us a lot to do that. And to know what Max was up against and what you have to do to get better. I mean, it's really that simple. 

Thanks, so much for joining me today on Don't Give Up on Testicular Cancer from the Max Mallory Foundation. We have a website. It's at maxmalloryfoundation.com, where you can learn more about testicular cancer, donate, and also send your ideas for guests on the podcast. And for spelling, Mallory is m-a-l-l-o-r-y.

Please join me next time on Don’t Give Up on Testicular Cancer. 

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