Subject: 8 Month plus Wait - 6cm Mass - PET Scan CLEAR - Nervous but Hopeful and Trying to not think the worst especially with Pathology
I’m finally posting this because I’m spiraling and need some perspective from guys who have been there. I ignored a lump for about 8 months due to fear and being in denial. I’m finally seeing the Urologist on the 30th this week to get the surgery (orchiectomy) scheduled, but the "math" of my scans is scaring the life out of me. I don’t what to feel it’s been a whirlwind of emotions. The pathology and entire process since I went to the ER and they pretty much told me “ I don’t want to give you hope but it’s most likely cancer”. I’ve spiraled and the types of pathologies and what it could show has got me extremely worried. This has been going on since February 28th and the process is taking longer then expected. I’m super worried for myself and well being.
The Timeline & Growth:
• Feb 28 (Ultrasound): Left testicle measured 5.5 x 4.5 x 5.2 cm. Two separate masses were identified, the largest being 3.8 cm.
• April 8 (PET/CT Scan): The mass has consolidated and grown to 6.0 cm.
• My Concern: I’m terrified because it grew from 3.8 cm to 6.0 cm in just 6 weeks. I feel like I've waited too long.
The Clinical Data:
• PET Result: CLEAR. The report literally says: "No definite evidence elsewhere of additional primary or metastatic malignancy." Lymph nodes are unenlarged and have no hypermetabolic activity. Lungs are clear. only in the left testicle it shows “1. Asymmetrically enlarged left testicular mass (about 6 × 5.5 cm) is irregularly intensely hypermetabolic and of concern for malignancy.”
• Tumor Markers: AFP is 6.6 (Ref range <6.1). HCG is <5 (Normal).
My Questions for the group:
Pathology Check: "With an AFP of 6.6 and a 6cm mass, did many of you find it was a Seminoma or a Non-Seminoma? Did the low markers mean a less aggressive type for you?"
• The "Wait" Anxiety: "Has anyone else waited months and had their tumor grow to 6cm+ but still stayed Stage 1 after the final pathology?"
• Surgery Recovery: "For a 6cm mass, was the post-op pain more intense than a smaller one? How soon were you back to light exercise or running?"
• Surveillance vs. Preventative Chemo: "If you were Stage 1B (over 4cm), did your doctor recommend Surveillance (just watching) or one 'safety net' round of chemo (Carboplatin or BEP)?"
* So many things I have questions for and im just everywhere…
I’m nervous for my life but trying to stay hopeful because of the clear PET. Any insight would mean the world. I’m trying to learn to navigate while trying to understand what doctors I need to see and how to do everything. I’m so scared for my life but I know this community has helped so many people. So much regret and trying to not allow myself to bear it all. any insight or advice would help immensely. Willing to take privately aswell. Appreciate y’all
Thank you