by Pat Taylor, CKN Editor, and Scott Slater, Advocate and Survivor
1. Please give a brief account of how you discovered your cancer. Your age, treatment and follow up care.
When I was 35 I was in the shower in my apartment in Brooklyn when I noticed for the first time that one testicle seems substantially larger than the other. This struck me as strange because I hadn’t noticed anything even remotely out of the ordinary on any other prior day. There was also no discomfort at the time, which certainly didn’t help as far as discovering the issue.
I made an appointment with my primary care doctor and the next several weeks were a series of misdiagnoses. I feared cancer, of course, but I was routinely told, “You’re young; it’s probably not cancer.” Looking back now, this strikes me as irresponsible, since testicular cancer is predominantly a young men’s issue. Eleven years later some of the specifics are hazy, but I had tests for something called a hydrocele, among others. Each one came back negative. Speaking of irresponsible, my insurance was hesitant to cover the procedure to test for testicular cancer because, again, I was “young”.
That test, by the way, was to remove the testicle entirely. I remember thinking at the time, only half-jokingly, “this BETTER be cancer.” Turns out, it was — a 4cm by 2cm stage IIB seminoma.
The next several months involved me being shepherded through the process. I am not particularly enamored with the way things were handled. I felt like a number being processed, rather than a patient being treated. Many of my doctors didn’t seem very interested in spending any time with me to answer my questions. After some online research, I learned that Dr. George Bosl, a leading testicular cancer researcher, was nearby at Memorial Sloan Kettering Cancer Center. Although MSKCC wasn’t among my covered providers at the time, I still managed to get a covered 3-hour meeting with him in which he answered all of my questions. I’m still very grateful to him for that.
Before long I was recovering from surgery and waiting the beginning of a rather intense radiation treatment: six weeks of daily radiation (with weekends off) over my torso, pelvis, and right leg. Before my first session (literally about 30 seconds before), I asked what the chances were that radiation could cause infertility. The answer was akin to, “Well, there’s a chance. Why?” So I demanded the use of a shield to protect the remaining testicle for the remainder of my treatments.
For follow-up, it was a pretty standard 5-year surveillance period with six-month CT scans and checkups to start, followed by yearly.
2. Did you preserve sperm?
I did, because I wanted to be sure that children would always be an option for me. The problem was, due to the speed of my treatment regiment, I only had about a week in between surgery recovery and radiation in which I could bank sperm. Apparently you need to do 3-5 visits “per intended child”, and those visits can’t be any more frequent than every other day. So I was able to schedule 3 visits.
3. Have you noticed any post treatment symptoms that you would attribute to hormone issues?
Oh definitely. I feel like that was the part that no one warned me about. I was often moody, occasionally depressed, less social. My libido took a huge hit and even though I feel like I thought about sex just as often, I rarely felt like physically following through with it.
4. We discussed body image and sex after treatment- any dysfunction emotionally or physically? Any anxiety when resuming intimacy with a partner or new date?
In addition to the above, I did have (and continue to have) some dysfunction issues, on an occasional but persistent (and random) basis. Doctors have said this is probably just due to age, but it literally began at the exact same time as treatment. I typically take Cialis as a backup although the insurance company is incredibly stingy about providing it. (My doctor requests that I take the low-dosage version daily, and insurance gives me EIGHT pills every month. The math doesn’t quite work out).
In general, dating was a nightmare at first. It’s not necessarily better, but after so many years it’s just something I’ve gotten better about dealing with. I’m much more open with new partners, etc., and that helps. But sometimes the libido just still isn’t there and that’s something I’ve learned to come to terms with.
5. Have you needed any follow-up care post treatment issues? Physical? Emotional? Mental health?
I’ve thought about pursuing counseling just because I’m sure there are parts of this I’ve never really dealt with. But as of yet I haven’t followed through. I do volunteer with Stupid Cancer on the regular and I’ve attended (and occasionally helped plan) every national conference they’ve offered over the past ten years. I find that going to these conferences, and the friendships I come home with afterwards, feel like some of the best therapy I could have ever hoped for.
6. What advice would you offer to someone newly diagnosed?
That’s a tough question to answer, because everyone has to navigate through their diagnosis in a way that is unique to them. Some people want to dive into the internet and learn everything, others just want to know when to show up to their appointment. No matter what, you’re probably going to feel lost and overwhelmed. I would recommend that you allow people to help. Not everyone is going to do or say the right thing, but remember that for the most part, people are trying their best. Let them in. I would also recommend that you remember that you are your own best advocate. When I was going through my treatment, I felt like a number that was just getting corralled through the various stages. Ask questions and demand answers. Get second opinions if anything doesn’t feel right. At the end of the day you need to feel like your team is, well, on your team.
Thank you for participating in CKN Testicular Cancer Series, Connor!
Helping to shed light on this disease and spreading awareness and education about these important topics is extremely important.