It was a typical Wednesday on May 4, 2016, I was at work and feeling great. When I got home from work, my wife and I enjoyed dinner together and then I took a shower before relaxing for the rest of the evening, as I do day in and day out. As I stepped out of the shower, my wife told me that my right testicle still appeared to be red and swollen. Yes, that’s right, she told me the night before that my testicle was red and swollen, but I am a typical guy and shrugged it off. This time, she made me call our doctor’s office and the on-call nurse told me to go to the emergency room. I was shocked because the nurse didn’t tell me what she thought was wrong, only that I needed to get to the ER. I contemplated waiting until the next day to just get an appointment with my primary care physician, but my wife made me go to the ER.

After getting an ultrasound and blood work results in the early hours of May 5th, the ER doctor came into my room and told me that I have a testicular tumor. I left the ER not knowing what was happening, what a testicular tumor even meant, or what was in store for my future. The next day I met with a Urologist to follow-up from my ER visit and discuss next steps. I remember sitting in the doctor’s office when my Urologist came into the room. He sat down and said, “I am sorry, it’s cancer and the testicle has to come out.” I was devastated and couldn’t speak, I broke down. I didn't know if he was going to tell me it was curable or if I only had a number of months to live. On May 9th, I underwent a right orchiectomy to remove my right testicle and recovered over a couple weeks.

Now, here is where my follow-up care after my diagnosis and right orchiectomy shifted. After my right orchiectomy, I had my first appointment with an Oncologist to discuss my diagnosis and treatment. I was diagnosed as Stage 1A, with a Malignant Mixed Germ Cell Tumor, Non- Seminoma that consisted of 30% Teratoma, 30% Yolk Sac Tumor, 20% Seminoma, and 20% Embryonal Carcinoma. My initial AFP level was 1,151 and my HCG level was 4.6. The pathology of my right testicle indicated that there was no vascular invasion outside of the tumor. After repeated blood tests over several weeks, my Oncologist told me that my AFP levels had not decreased to normal levels in the time they should have, and that I needed to undergo 3XBEP for treatment and assurance that no cancer would return. I agreed with his treatment because he’s the doctor and he should know what I need to do to cure my cancer, right? Wrong!

My wife was skeptical of his treatment plan for me to undergo chemotherapy after doing a lot of research on testicular cancer and the various stages of the disease. Despite my wife trying to get me to get a second opinion, I got on the schedule to start chemotherapy and to get a port. My wife found a testicular cancer Facebook group where she connected me with a Testicular cancer survivor. I talked to him about my diagnosis and my Oncologist’s treatment plan for me. It was about the day before I was scheduled to get a port installed when I called my Oncologist and put a halt to my treatment so I could seek a second opinion. This was the best decision I could have made, but at the time, I was so focused on being cured and not wanting any cancer to spread or return.

I sought a second opinion from Dr. Lawrence Einhorn, a true TC expert. After he assessed me and reviewed all of my results, he advised that I don’t need chemotherapy as a treatment due to my AFP levels returning to normal and my pathology tests indicated no spread of cancer. However, Dr. Einhorn stressed that if my cancer does return, then I will need to be treated with 3XBEP chemotherapy. Since July 2016, I have been on surveillance and seeing a former colleague of Dr. Einhorn’s at John’s Hopkins in Baltimore, Maryland. May 9th will hopefully be my one year anniversary of being cancer free, and I am remaining optimistic.

I was essentially days away from almost subjecting myself to chemotherapy at the direction of my first Oncologist, when I clinically did not require this treatment. It angers me to think my first Oncologist recommended I undergo chemotherapy as a preventative treatment and not because I truly needed it. It was because of my wife, her research, and determination to make me seek a second medical opinion before committing to chemotherapy. Had I not listened to her and not gone to the ER, I likely would not have detected my TC early enough to avoid chemotherapy. It was because a member of the TC community put me in contact with Dr. Einhorn to seek medical advice for my diagnosis. I realized that sometimes a person needs the help and guidance of others who have gone down a similar path and have your best interest in mind.

It was stressful enough to be diagnosed with cancer, and the last thing I wanted was to prolong my treatment by seeking additional medical opinions, but I am glad I did. And I hope anyone who is in a similar situation does the same. After this experience, I understand the importance of seeking a second (or third) opinion when it comes to health matters, and sometimes other things life throws at us. It never hurts to just get a second opinion, even if your doctor feels undermined. It’s my body, and I am going to call the shots from now on. At the time, I was making uninformed decisions because I put my trust into the hands and expertise of an oncologist who unbeknownst to me, was not fully familiar with how to treat testicular cancer.

Since my initial diagnosis, I have lived 11 months cancer free without undergoing chemotherapy. I often think how my life since then would be different had I ignored everyone and went through with it. I know I am still in the early stages since being diagnosed with cancer, and I know I have many years left on surveillance undergoing scans and blood work, and that there is still a possibility cancer can return. I will always come out on top because I have the support of my wife, family, friends, and the TC community on my side, no matter how tough things get.

Jason Alexander
TCAF Guest Blog

Jason Alexander on the Importance of Second Opinions