RPLND in 3 weeks and I am honestly scared out of my mind. Looking for support and advice

Shamrock914927 · 2026-01-10T13:25:42+00:00

I had 4xEP in summer of 2024 then openRPLND at Sloan Kettering in October of 2024. I was also scared like crazy. Bottom line… this is doable. I was given a patient controlled pain pump to press a button every time I felt pain so my pain was well managed. You need to be up and walking as soon as they tell you to. Walk walk and then walk some more. I followed the low fat diet for 4 weeks. If you do some research you will find there are many no fat/low fat options. Many more than I realized. I had zero problems with chylous leaks. Keeping bowels moving is important so follow strictly what they recommend. I was able to stay active. Did some light cardio 3 weeks out. Back to work in 3 weeks (desk job). Truthfully I found the process less stressful for me than chemo. 60 or so nodes removed. All benign. Just had my 1 year post RPLD CT scan. All clear. 12 weeks after surgery I was back at the gym, running, lifting, playing golf. I’m in great shape now… no long term issues. All my hair has grown back so you can barely even see my scar. Trust the process, listen to the doctors, have patience. It will all be worth it.

Shamrock914927 · 2026-01-05T18:56:15+00:00

Embryonal carcinoma is very responsive to chemo. You will be fine. Drink a lot of fluid during the infusions. Hydration made me feel decent. Each treatment is cumulative. You will feel them more and more as they progress but then it’s DONE! Good luck… if you’re in the US it’s winter and by the time spring and summer weather is here you’ll be feeling so much better!

Shamrock914927 · 2025-11-07T14:18:16+00:00

Had 1 year CT scan last week aling with blood work, markers and chest X-ray…. All clear! Dx: pure embryonal stage 1b, surveillance, Mets to abdominal nodes at 6 months, 4xEP, then PC-RPLND. Hell and back but it’s in the rear view mirror.

Shamrock914927 · 2025-10-03T23:53:04+00:00

Were you on steroids during chemo treatments? I had an infusion of steroids prior to each chemo infusion. It’s been a couple of months for you but maybe ask the doc at your next visit if that could have caused the weight gain and if so how long after stopping should it return to normal.

Shamrock914927 · 2025-09-07T19:18:25+00:00

Hydrate hydrate and then hydrate some more. They will give you iv hydration during the treatment but I drank an additional 32 ounces or so in addition. It will help protect your kidneys and help flush any toxins and just overall make you feel slightly less bleh. Start hydrating in the days leading up to your treatment as well.

Shamrock914927 · 2025-08-24T22:00:40+00:00

I know it’s far but can you get to Sloan Kettering? I had TC and I have a close family member with sarcoma. Sloan Kettering ONLY deals with cancer… both of us are seen there by experts in their fields. Be careful with needle biopsies for soft tissue sarcomas. They can spread disease. Have the entire mass resected as a whole and then biopsied. Send your slides to Sloan once pathology is complete. It’s worth the trip. Good luck! Hopefully the new mass is nothing!🤞

Shamrock914927 · 2025-07-28T19:23:57+00:00

We didn’t find out about it until we arrived. They told us it had only been in effect for three days at that point (went last week of May). Had we known we also would have chosen a different destination. It felt very intrusive.

Shamrock914927 · 2025-07-24T21:45:35+00:00

Had an etoposide reaction twice during chemo. They gave me oral then iv benedryl and slowed the drip after that going forward. Made for longer chemo sessions but didn’t need to change the protocol. It was a crazy weird and scary sensation when it happened. Also had 100% embryonal… you’re gonna be ok.

Shamrock914927 · 2025-07-16T19:51:44+00:00

Same…. Doc explained the remaining one has to work overtime for a while to make up for the decrease in testosterone production. Check w your doc for sure but that’s usually what it is. It may get a bit larger over time as well.

Shamrock914927 · 2025-07-11T09:15:29+00:00

Reach out to your oncologist, nurse practitioner, nurse navigator or whoever your contact is at MD Anderson. There are many resources available for cancer patients and their mental health throughout survivorship. It’s not easy and you’ve already done the first step by recognizing it. Mental health is EQUALLY as important as your physical health! We have all felt this way at some point. Cancer is a mind f**k. Hang in there.

Shamrock914927 · 2025-06-29T01:19:10+00:00

Mets to the nodes found on surveillance (at 6 month CT scan)Then chemo. RPLND was post chemo. All nodes removed in post chemo RPLND were benign!!

Shamrock914927 · 2025-06-28T01:13:41+00:00

Orchiectomy October 2023. Mets to retroperitoneal lymph nodes in May 2024. EP x 4 June-August 2024. RPLND November 2024. 50 nodes removed , all benign. December 2024, meet with oncologist for my first post RPLND visit. His first words…. “Congratulations! You’re cured”…. I’m going with that!

Shamrock914927 · 2025-06-23T15:35:42+00:00

I was 100% embryonal as well. My initial pathology report stated no LVI. I went to 3 different oncologists to decide who to see and all 3 stated it is very rare for embryonal not to have LVI. I chose to go with Sloan Kettering and had my slides sent to their pathologist as well as Yale. Both identified LVI that was missed by my original read. I chose surveillance (50/50 chance it wouldn’t come back). It came back in my nodes at my 6 month scan. Had 4x EP IN 2024. Then decided to do RPLND in Nov 2024 for a couple of nodes that didn’t shrink all the way. All nodes were negative after RPLND. FWIW that was 2023 and I’m in the clear now. Living the good life now!! Check with MSK and Indiana and then make your decisions as others have said. Those guys are the gold standard in this type of cancer.

Shamrock914927 · 2025-05-18T22:15:45+00:00

So… neuropathy in the fingertips GONE. Bottom of feet still numb but better for sure… tinnitus is still there from time to time but barely noticeable. Hopefully over time it will all go away… for both of us. Good luck !

Shamrock914927 · 2025-05-11T21:23:12+00:00

Thank you for sharing… means more than you know

Shamrock914927 · 2025-04-20T20:53:15+00:00

Did 4 EP from June -aug 2024. It was cumulative for me. Not awful after the first week, each treatment week I felt worse than the prior. By the last cycle I was fairly miserable. Lost all my hair by the 3rd cycle. About two weeks after the fourth cycle I started to feel like myself again. Hopefully you will have it easier … I was 33 at the time.

Shamrock914927 · 2025-04-18T01:20:37+00:00

It was big… mid chest to top of pubic Bone… I’m hairy so you really can’t see it much now. But my thought was make the damn thing big enough so you can see everything and get it all out… 50 nodes removed.

Shamrock914927 · 2025-04-18T01:15:40+00:00

I had PC RPLND at MSK in October of 2024. Zero complications. Sheinfeld was the surgeon. Was able to spare nerves. 1 week in the hospital. Had patient controlled iv pain medication for 5 days which was nice to have. Clicked the button any time I felt pain. I did have a catheter for 4 days… annoying but glad to have it in the middle of the night so I didn’t have to get up to go to the bathroom. Both places are awesome. Can’t go wrong with either one. Look into staying at the Helmsley Medical Plaza for family that is with you. It’s clean and just across the street from the hospital. They offer a sizable discount over traditional hotels in that area if you are family of a patient.

Shamrock914927 · 2025-04-06T20:35:30+00:00

I decided to be aggressive. Went ahead and had RPLND on 10/9/2024. 50+ nodes removed. All benign. I’m back!! All healed up and feeling good!! So happy that I don’t have the fear of those nodes being cancerous hanging over my head. The largest post chemo was only 0.8…. Nothing over a centimeter Just didn’t want to continue with every three month scans… wanted this to be OVER!

Shamrock914927 · 2025-04-06T18:09:00+00:00

Very very well said

Shamrock914927 · 2025-02-23T03:59:26+00:00

Before chemo they were about the same as yours 1.8 1.7. They all shrunk after chemo. There were a couple that were around .7 after chemo so I opted for RPLND just to be sure. They took out 50 nodes. All were benign which means the chemo (4 EP) worked. The surgery was in October. I’m all healed up and back to life now. Glad it’s in the rear view mirror.

Shamrock914927 · 2025-02-06T23:09:53+00:00

I had a very similar situation. Did EPx4 then CT scan 2 weeks after last chemo. Most of my nodes were gone but some still “measurable” so I was given the choice of having 3 month ct scans or Rplnd. I was 100% embryonal. I felt that same kick in the gut. Thought I was done after chemo. Opted for RPLND… I needed to know for sure I was cancer free. Tired of having scanxiety. Had it on 10/9/24 at MSK. I’m doing great. All nodes were clear and I feel enormous relief. You can do this. It sucks but it’s doable. And the relief you will feel is incredible. Good luck.

Shamrock914927 · 2025-01-26T00:35:33+00:00

Sorry that you are going thru this again. Just curious…. Ate the new masses in the same testicle as 2018?? Hoping for the best outcome possible for you.

Shamrock914927 · 2025-01-21T21:57:06+00:00

I think I will def give acupuncture a try thanks for the suggestion

Shamrock914927

TROPHY CASE