u/NemoMeowDTD

Hello everyone!

Another update and with it more questions for our collective.

Finally spoke to Dr. Masterson at IU, and we both agreed Primary RPLND was an appropriate action, we have this scheduled for 10/02/26, with a CT scan 14 days prior and a pre op in person visit set for the 1st.

I’ve been reading that retrograde is very common with this procedure, however I do see many happen due to post chemo RPLND occurring. If anyone here has primary RPLND done, specifically nerve-sparring one, did you still experience retrograde? Or was it temporary and then normal bodily functions returned? I’ve banked already so I feel comforted in that regard. I chose IU specifically for the expertise they bring. Lastly, I’d like to make a list of things I can ask him to ease my mind prior to the surgery, any insight on what I could ask? I appreciate anyone taking the time reading this and helping out!

Also does anyone recommend anything for after the procedure is done? Anything that helped out during recovery? I keep seeing a squeeze pillow would be nice for pain management (I have pretty bad allergies and sniffle, and sneeze a lot.) anything helps!

Hey yall, back again haha after my last visit where the oncologist suggested there’s a high chance that the cancer traveled to the retroperitoneal lymph nodes, (just 1 that qualifies for lymphadenopathy, I was officially referred to IU for consultation for primary RPLND, and I’m set to have a virtual visit with Dr. Cary and Dr. Einhorn, however this was back 07/15/26, the last few days we’ve been seeing heartbreaking posts that have me really question if this wait is common? For context my predominant NSGST is Teratoma, (75%) could that feed into why the wait is still happening? Has anyone experienced anything similar? I was recently offered a new position but I’m hoping it might happen prior to my new position to avoid any delay on that end. I appreciate everyone’s collective knowledge! Thank you for everything.

Hey yall, didn’t know the flare to use so I apologize.

Any of you who were able to get critical illness, if you have a recurrence clause, how did you go about obtaining that? I was told once I am officially diagnosed but I wonder when that is? Would it be after returning the pathology from the potential RPLND I am going to have? Or after confirming the LN growth and the CT person describing it as potentially malignant? Just curious as when I originally applied for it I used my pathology report to show the cancer since prior to that it was only: “testicular mass” but at no point was I given something that said “yep you have testicular cancer” it all just went by so quickly.

Thank you all for your collective knowledge in all things TC and for helping us all navigate it as we go.

Hey yall, so I had my appointment on the second, my doctor basically said that due to rising tumor (1.0 difference. 2.9 in February, 3.9 in June.) markers and a single swollen retroperitoneal lymph node measuring 1.4cm they are now suggesting I be referred to a medical oncologist for possibly BEPX3, is this standard? I was hoping to avoid chemo all together, I am going to contact Dr Einhorn to ask for his opinion, what concerns me a bit so that my pathology was predominantly Teratoma, but I did have EC and YS. (20%, 5% respectively.) is primary RPLND still on the table? Or is chemo basically a given? I was trying my best to avoid PC-RPLND due to trying to get nerve sparring if possible. Any recommendations that I should ask Dr. Einhorn? Thank you all for your collective knowledge 🙏 I love this community and I appreciate you all

Hey yall, it’s been a hell of a ride these last 8 months, I had my radical orchiectomy on October 3, 2025 and pathology stated 75% Teratoma, 20% EC, 5% YS, my doctor decided surveillance was the best option as I did not have any high risk factors. (Lower end EC, No LVI, No spread outside the testicle.) I was placed on surveillance and had my first “official” CT scan in February, everything came back normal, tumor markers were stable, still dropped a ton from my last one in December, everything normal in my CT scan. Fast forward to June, I had my bloodwork done last Friday, and immediately the first worrying sign appeared. AFP jumped from 2.9-3.9 in a little over 4 months, LDH also raised slightly, I immediately began to freak out as most of us know how any sort of change and even normal bodily functions begin to become signs of reoccurrence after our diagnosis. I began to have lower back pain that faded within a day, nothing major but after my CT scan there it was, two lymph nodes that are borderline, no officially verbiage was used to specifically say it’s for sure cancer, not even said “suspected for metastatic disease” but sure enough 2 lymph nodes on the larger end and “currently meeting the criteria for lymphadenopathy” they mention that one would raise concerns for potential metastatic disease. I will see my doctor next week on the 2nd to talk about this, but due to my pathology seems highly likely an RPLDN is in the books.

This has been such a stressful 24 hours, but we’re all still here and thriving regardless of circumstances. I’m back yall thank you for always being here when we need to vent.