Ben Freeberg’s Testicular Cancer Story

Cancer was never even a remote possibility on Ben Freeberg’s radar.

But like for so many diagnosed with cancer, specifically testicular cancer, life as he knew it stopped in its tracks.

While testicular cancer is the most common cancer in males ages 15-35, it is considered a rare cancer. Only 1 in 250 people assigned male at birth will have the disease in their lifetime.

He had limited family history of cancer, one of the risk factors for testicular cancer, which develops when cells in the tissue of a testicle grow out of control forming a tumor.

Often, the first symptom is a painless lump on the testicle—something that could easily be ignored.

Freeberg shares his cancer journey with us where he went from being a 24-year-old, who was active and healthy living in New York City, to receiving a cancer diagnosis in January 2018 and undergoing challenging treatment.

He provides advice for other millennials who have found themselves in his shoes and tells us how the experience changed his outlook on life, leading him on a path to creating a venture fund, Oncology Ventures, dedicated to improving cancer care and research.

Diagnosis

What were the symptoms or signs that led you to get checked out?

I started experiencing symptoms almost a year before I was diagnosed. I was at a dinner and I passed out there, and I was sober. It was just a regular day; nothing had happened. So, I went to the hospital.

I’m literally sitting there as a young 24-year-old kid at the time telling these doctors something is wrong with my body please test me. I said ‘Look, I’m incredibly active and healthy, and I wasn’t doing anything differently.’ The tests showed nothing, and they are telling me “Nothing is wrong with you. You’re fine. Just go home and relax.” It was a tough start.

That was almost one year to the day before the onset of my testicular cancer. If we had caught it then, I may have avoided chemotherapy and two surgeries. With the late, Stage III A diagnosis, I ended up having blood clots in my lungs. That was a key piece that made my cancer journey so difficult.

How did you feel when you received the diagnosis? What were your initial thoughts and emotions?

Folks have talked about how important early detection is and how you should test yourself, and go to your physician, but you never think it’s going to happen to you. Why would I go out of my way to learn about all these other pieces where it's a small percentage of it ever happening to me? I don’t smoke cigarettes or consistently eat fast food, all the things that would lead cancer.

I was diagnosed with Stage III A testicular cancer, and it all happened very quickly. I don’t know how, but you just deal with it. I remember asking the doctor all the time, ‘What are my chances?’ So, it was I think the fear of the unknown.

Before all this, I had just been on vacation, had a job and friends, was going out and had a regular life. Then all the sudden, I couldn’t leave the hospital for a week. It was a crazy.

Treatment

What treatment(s) did you undergo?

I had to start chemotherapy ASAP because I had blood clots in both my lungs. I had two surgeries and four rounds of chemotherapy (etoposide and cisplatin).

I was fortunate because there are a lot of perverse incentives out there where folks get reimbursed and paid for on the insurance, pharma, and oncologist side, so you have to really make sure you can put full trust into the treatment.

I trusted that the doctor I was going to was one of the best in the country for treating testicular cancer, and I was getting a tried-and-true chemo regimen that has a high cure rate.

What were the side effects of the treatments? How did you cope with them?

The rounds of chemo made me:

Neutropenic. So, I didn’t have enough white blood cells to fight infection.
Have a hard time concentrating, chemo brain is a very real thing.
Tired – I tried walking home from chemotherapy one day, and I didn’t even make it 4 NYC blocks.
Lose my hair

When you go through chemo, you lose hair in a weird way. It just doesn’t all fall out or fall out at once. I kept my eyebrows which is nice—sometimes those stay or go—and then I lost half the hair on my arms and legs.

I remember one day I was in the shower, and put my hand through my hair and there was clump of it. I realized then ‘I really have cancer and it’s infiltrating my body.’ Then, your hair starts hurting. It’s this very weird thing. So, I decided to shave it off completely. It took me four different barbers to get someone to agree to shave it for free, even after telling them I had cancer. That guy became my barber for six years.

Cancer, it's really, really tough. I could not be positive the whole time, and sometimes would think ‘Why me? What did I do?’ But I thought about it, and I could either be sad and have cancer or not be sad and still have cancer. So, there were a few things I did to take non-cancer moments like when I was in the shower or playing games with friends because in either situation, I realized it doesn't matter if you have cancer, you’d be doing the same thing in the same manner, unless you were in a lot of pain.

I tried to put everything into perspective and look at the positive side. People have it worse. I had a curable cancer that was getting treated the right way.

Life During Treatment

How did the treatment impact your daily life and routines?

It was so hard because I was in New York City. The hospital was like a 10-minute cab ride away, but waking up at 6:30 in the morning to pay for a cab to wait in a hospital and then go for four hours to have someone just pumping drugs into you that are saving your life but also making you feel terrible is really, really hard.

My veins in my arm were shot some weeks, so they had to start going into my hands, which really hurt.

There are just so many different pieces of it that I don’t think a lot of folks unfortunately fully appreciate how difficult that journey is. What are you going to do, not go?

Freeberg passing the time on the computer during one of his rounds of chemotherapy.

Did you have a good support system? Who helped you through it?

Everyone showed up—my family and friends. And I lived in New York City, where I realized that a lot of your social plans when your 24 to 30 involves drinking alcohol, which is not very accommodating to people undergoing cancer treatment, but my friends were.

People on the chemo floor were also awesome. We had parties and played games. The venture fund I was working for at the time was incredibly understanding and supportive.

One thing that I loved was joining Imerman Angels, which is a peer-to-peer cancer support group. And Johnny Imerman who founded the group has become a close friend. They match you with someone with the same exact diagnosis as you down to like finding me someone with my same stage, treatment, and chemo regimen.

My mentor went through everything, and it was really helpful because he would tell me things like, ‘This week is going to be rough, but if you make sure you stay really hydrated you will be in an okay spot.’ Or, ‘This is actually where you’re starting to feel a little bit nauseous maybe have the doctors give you some anti-nausea meds.’

If anyone who’s reading this has someone in their life that’s going through cancer right now, just call them or text them. Don’t ask them how they are feeling; chances are they aren’t feeling great. But just letting them know you are there for them helps so much, and so does just treating them like a human being and not overly coddling them.

Advice for Others

What advice would you give to other young men diagnosed with testicular cancer?

You have to be your own care advocate throughout the entire journey. And it’s tough. I was treated at Memorial Sloan Kettering, one of the best cancer centers in the world. I had good health insurance, my friends and family there, and understood the healthcare system, at least at a high level. And it was still impossible to navigate, and I had everything you could want and need.

Just take out any one of those things—not being able to afford a ride to the hospital, not having have insurance coverage, or even understand that you need to eat healthy, and it’s just unfair.

Do not be afraid to speak up. If you read, hear or see something, bring that up to your nurse, your oncologists. There are so many amazing patient advocacy groups too that are looking for patients to support. So, don’t be shy. It’s your life. Do whatever you can to give yourself the best fighting shot.

What should someone do if they notice potential symptoms?

Number one, if you think something’s wrong, really push for the right treatment and test. People always ask me ‘If you had a magic wand for helping improve cancer outcomes today, what would it be?’

Early detection.

If we can detect all cancers in stage one, instead of three and four, because the higher the stage not only the more difficult it is to treat, the more expensive it is and the worse the outcomes are.

For breast cancer in particular, if we find breast cancer in Stage I, 97 to 99% survival rate. If we wait until Stage III and IV that goes down to under 30%.

So, we're literally talking about chances of life. If we could detect it early, then we could also match folks to the proven treatments that are already out there.

Freeberg ‘seizing the day’ in life and on the ski slopes.

Perspective and Outlook

How did this experience change you outlook or perspective on life?

It definitely matures you a bit. It was a wake-up call that life is short.

I think it made me a lot more empathetic, appreciative, and aware that I should be spending my time doing things that matter with people that I enjoy spending time with, but also make sure that I am comfortable with spending time alone.

I was always a ‘seize the day’ kind of guy. I always was someone who tried to fit 10 plans into two plans and bring three different groups together.

I also started working in a different area of the finance sector focusing on health. We launched a fund called Oncology Ventures where we are investing into startups that are improving care, research, and outcomes in the care setting today.

What wisdom or life lessons did you gain from battling cancer?

As a young, healthy, fit person, I didn't really go into the doctor a lot to get regular checkups because I was fine, right? You should make sure that you are staying on top of your health in a medical way and getting the right scans at the right times. Check in and talk with your doctors and make sure that you're doing everything you can outside of those checkups.

It’s so easy to get so sad and frustrated about so many different things. There is so muc research out there that has proven that if you treat your body well, you spend as much time as you can outside seeing water, seeing nature, eating healthy food, laughing spending time with loved ones, and just relaxing, as difficult as that is, it will improve your outcomes.

Conclusion

Now celebrating his sixth year of cancer survivorship, Freeberg’s journey from advocating for his health and getting pushback from healthcare providers to receiving an unexpected cancer diagnosis at a young age and honing his financial expertise to better the outcomes of cancer patients across the US, is nothing short of inspiring and powerful for young cancer patients and the millions of millennials out there who second guess their symptoms or face barriers to getting healthcare access.

“There's nothing that pushes you more than a near death experience where you learn what's important and where there's opportunities for you to differentiate yourself,” he said.

From his stand-up comedy routines incorporating his cancer journey to the launch of Oncology Ventures and beyond, Freeberg is doing just that.

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