post rplnd surgery vs. watchful waiting

I was faced with the same decision in October of last year (2023). I was diagnosed in May 2023, with stage IIIb non-seminoma cancer that had spread from my left testicle, through multiple lymph nodes, and also had four sizable tumors spread between my left and right lung. I underwent an orchiectomy immediately in May 2023, followed by four rounds of BEP treatment that summer. When I went for my post chemo CT scans, the tumors in both lungs had been reduced in size to where a lung specialist said that they were no longer an issue. Unfortunately, the lymph nodes in my abdomen had basically remained the same size. I spent a considerable amount of time researching the RPLND procedure and met with multiple specialist to weigh the pros and cons. I finally made the decision to have the surgery done on November 13, 2023. After all of the research and consultations I have come to understand that unfortunately with testicular cancer, if you still have enlarged lymph nodes showing on a CT scan after completing chemo, it is the only way to confidently know that you have removed all remaining cancerous tissue from your body. Multiple Oncologists suggested that I have a PET Scan performed to have a better understanding before agreeing to surgery ...... which would have been great (I absolutely did not want to have additional surgery done!), but, it turns out that PET Scans are unable to identify active vs. inactive testicular cancer cells. So again, the only proven option for confirming and / or removing the remaining active cancer in the abdomen is an RPLND.

I would highly suggest that anyone who has already gone through chemotherapy and still has lymph nodes that show on their follow-up CT Scans should immediately see a specialist at what is called a "Center of Excellence" specializing in Testicular Cancer. It is a very rare cancer and unfortunately there are few Doctors who truly understand the nuances in treatment and diagnosis. I ended up having my RPLND surgery done at the Moffitt Cancer Center in Tampa, FL. I know that Moffitt and the Indiana University Cancer Center are both world renowned for their research and treatment of testicular cancer, so I would highly recommend seeking an opinion from a Doctor at either location.

The surgery itself is extremely technical, requiring two specialized surgeons and (in my case) 10 support staff in the operating room. The reason it is important to have a specialist perform this operation is that the lymph nodes that need to be removed are located in the back of the abdomen adjacent to the aorta, vena cava, as well as the nerves that control ejaculation. There are very few surgeons who have been trained specifically on this procedure, so please speak with a specialist. The surgeons that worked on me at Moffitt are Dr. Scott Gilbert and Dr. Privthi Murthy. They were able to successfully remove all remaining active cancer without causing any ancillary damage.

My recovery was not that bad, and for me it was much less painful than the experience with chemotherapy. The first couple of weeks post-surgery I was in moderate pain and on a restricted diet. I am now 12 weeks post surgery and other than mild discomfort where the scar is from my incision on my abdomen, I feel fine. If you have any questions about this procedure, please reach out to me at jonathan.r.doyle@gmail.com and I'll be happy to share more. Prior to having the surgery, I found it extremely frustrating that I couldn't find someone to talk to that had already been through it, so I'd like to offer my support to anyone else in the future that is faced with making the decision to have any RPLND.