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Long time lurker and (almost) first time poster checking in with my story, that will hopefully be helpful to others.
I first found a lump in my left testicle sometime around May or June of 2018 after discovering an unrelated small movable marble sized lump on my ribs (dermatologist and PCP diagnosed as a lipoma). After some Dr. Googling I was pretty sure it was an epididymal cyst and since I had an appointment with my primary care physician scheduled for early August, I waited for that visit to go in for a consultation.
He thought it was likely a cyst as well, but scheduled me for an ultrasound a couple of weeks later. I had the ultrasound, and when I received a phone call from my doctor's office that same day a few hours later I knew it was likely something more serious than a cyst.
He referred me to the urological surgical oncology clinic, where I met with the surgeon who confirmed it was likely testicular cancer and scheduled me for a blood tests, a CT scan, chest x-ray and scheduled me for surgery.
Blood tests came back negative for tumor markers, CT scan and chest x-ray was clean.
I had my surgery on September 6, 2018 at 7:30 am and was feeling well enough to leave the hospital before 10:00 am the same morning. I woke up from surgery with a little nausea and pain, received a single opioid painkiller and some anti-nausea medication and was dressed and messaging my wife that I was bored and to pick me up at 9:14 am. Recovery has been uneventful and smooth, I had surgery for a right-side inguinal hernia back in the early aughts so I knew what to expect. Stayed away from opioid pain killers, and used the occasional ibuprofen and icing to manage the pain.
After the surgery, the surgeon's assistant called me to reschedule my post-op visit because my pathology report wasn't yet prepared so I finally went in for the post-op visit a little before three weeks post-op where the surgeon said everything was healing well but that I had a very unusual tumor and that he would be referring me to a medical oncologist to handle my post-operative treatment plan.
The pathology report is a total of five pages long, with the final diagnosis being an unclassified sex cord stromal tumor with spindle cells, 1.7cm.
The surgeon said that there aren't well-established guidelines for active surveillance as in the case of classical seminomas or NGCTs. In the pathology report, they called out the small size (1.7 x 1.4 cm) and lack of necrosis or lymphovascular invasion as favorable features but call out “elevated mitotic activity [that] may portend a risk for recurrence.†This specific kind of tumor is malignant in approximately 10-20% of adults, but hopefully I've caught it early enough that all I will need is surveillance even though I have one of the risk factors for malignant potential.
Since then I'm in a holding pattern waiting for my next visit and have gone through a crash course in sex cord stromal tumors, reading all of the journal entries and resources I can find on this uncommon diagnosis that aren't behind a paywall (if anybody has access to journals through their university, I would love to get a few PDFs from you). I've already contacted the International Ovarian and Testicular Stromal Tumor Registry (https://www.otstregistry.org) and will be sending them my file as well.
I first found a lump in my left testicle sometime around May or June of 2018 after discovering an unrelated small movable marble sized lump on my ribs (dermatologist and PCP diagnosed as a lipoma). After some Dr. Googling I was pretty sure it was an epididymal cyst and since I had an appointment with my primary care physician scheduled for early August, I waited for that visit to go in for a consultation.
He thought it was likely a cyst as well, but scheduled me for an ultrasound a couple of weeks later. I had the ultrasound, and when I received a phone call from my doctor's office that same day a few hours later I knew it was likely something more serious than a cyst.
He referred me to the urological surgical oncology clinic, where I met with the surgeon who confirmed it was likely testicular cancer and scheduled me for a blood tests, a CT scan, chest x-ray and scheduled me for surgery.
Blood tests came back negative for tumor markers, CT scan and chest x-ray was clean.
I had my surgery on September 6, 2018 at 7:30 am and was feeling well enough to leave the hospital before 10:00 am the same morning. I woke up from surgery with a little nausea and pain, received a single opioid painkiller and some anti-nausea medication and was dressed and messaging my wife that I was bored and to pick me up at 9:14 am. Recovery has been uneventful and smooth, I had surgery for a right-side inguinal hernia back in the early aughts so I knew what to expect. Stayed away from opioid pain killers, and used the occasional ibuprofen and icing to manage the pain.
After the surgery, the surgeon's assistant called me to reschedule my post-op visit because my pathology report wasn't yet prepared so I finally went in for the post-op visit a little before three weeks post-op where the surgeon said everything was healing well but that I had a very unusual tumor and that he would be referring me to a medical oncologist to handle my post-operative treatment plan.
The pathology report is a total of five pages long, with the final diagnosis being an unclassified sex cord stromal tumor with spindle cells, 1.7cm.
The surgeon said that there aren't well-established guidelines for active surveillance as in the case of classical seminomas or NGCTs. In the pathology report, they called out the small size (1.7 x 1.4 cm) and lack of necrosis or lymphovascular invasion as favorable features but call out “elevated mitotic activity [that] may portend a risk for recurrence.†This specific kind of tumor is malignant in approximately 10-20% of adults, but hopefully I've caught it early enough that all I will need is surveillance even though I have one of the risk factors for malignant potential.
Since then I'm in a holding pattern waiting for my next visit and have gone through a crash course in sex cord stromal tumors, reading all of the journal entries and resources I can find on this uncommon diagnosis that aren't behind a paywall (if anybody has access to journals through their university, I would love to get a few PDFs from you). I've already contacted the International Ovarian and Testicular Stromal Tumor Registry (https://www.otstregistry.org) and will be sending them my file as well.
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