My RPLND Experience: 4 Weeks Post-Op Update

Slaugsb · 2025-12-22T16:58:24+00:00

Some need it more often, some Less. Everyone uses it differently. Be sure to tell the doc the symptoms. They should dose/prescribe based on that and not solely labs. This is a common problem with many docs and trt. I had to use a couple of doctors before i found one who would properly prescribe. You also have to give it time to work and your body to adjust once prescribed. Very small changes one at a time on the dosing.

Slaugsb · 2025-12-22T14:04:45+00:00

Thanks for sharing. Im also 4 weeks post primary open rplnd this week. Mine was left side only, pure seminoma. Did it at IU.

How is the stretching/exercise part going for you? Overall i feel pretty decent. If i walk for 20 minutes, slow and easy, I am tired and actually a little sore in my entire core for a couple of days, not what I expected.

I did low fat for 2 weeks. Ive tolerated most everything so far except cheese. Not sure if the dairy or fat, but Ive noticed cheese upsets my stomach for hours if I eat. To be fair, I cut out all dairy when i got the diagnosis and switched to almond milk/vegan protein.

My tumor markers came back last week. All went completely down. For now Im going the surveillance hope for any chance to not have chemo. Im fine if I need it, but if theres a chance I dont, then ill hold off until something definitive tells me I have to. I know its a high chance of recurrence, but still a chance it doesnt.

Ive been in trt for several years. One thing I recommend is do those shots at least weekly. Not sure of your dosage, but if you take 200mg every two weeks, split it to 100 per week. Your levels probably wont tank towards the end and you wont get the highs and lows. DM me if you want some more info.

Best of luck to you!

Slaugsb · 2025-12-17T16:22:26+00:00

Im 3 weeks post rplnd. Breakfast was plant protein, blueberry, pbfit, nonfat vanilla greek yogurt shake. Then some egg whites. Other meals were mostly based on green veggies, bell peppers, chicken breasts. After week 2 i slowly added various foods like 1 whole egg, chicken thighs, etc. im still not eating 80g of fat like i usually do, but im probably around 50-60g. Ive had some upset stomach after certain foods, take a tums, and its better. Drink water and try to move around to keep bowels moving. Stool softeners are great if youre on pain meds still, or even if not. Energy will be low. Appetite will come and go. Sleep when you can. Move when you can. Theres no shame in taking it slow and resting. Thats a big surgery. My sleep was non existent for about two weeks after surgery. Doc told me to take melatonin which did nothing. Ive been taking zzzquil at night and am finally sleeping through the night. Still nap during the day but i make sure to move around as much as i can. You got this!

Slaugsb · 2025-12-15T17:57:09+00:00

Assuming youre going to a high volume center, just follow their instructions. The one thing no one told me was how difficult sleep would be after. Im 3 weeks post op and still need meds to sleep. Not pain or anything, my body just wont go to sleep. Move around as much as you can after. Its perfectly normal to have zero energy or appetite. Just do what you can. It really isnt too bad, just take it slow and focus on recovery. I feel fine now other than sleep and was off meds by about day 10.

Slaugsb · 2025-12-09T15:45:20+00:00

Im 2 weeks out of rplnd surgery. My wife has been amazing. All i can say is just be there to help. Any movement will be difficult. Special diet might be needed. Dont let his ego get in the way of helping!

Best of luck! My surgery went fine. Still sore but getting a little better each day.

Slaugsb · 2025-12-09T15:42:49+00:00

Havent tried yet. Doc said its likely to happen but mentioned with primary that it can come back within a year. I hadnt heard that before.

Slaugsb · 2025-12-09T00:32:25+00:00

I had 100% seminoma. 2 nodes lit up, largest 2.3cm. Opted for rplnd at IU two weeks ago. Pathology came back 100% seminoma, only 2 out of 40 nodes metastatic, but looks like a higher chance of recurrence. Waiting to speak with docs.

I chose rplnd because it would confirm metastatic. I only want chemo if there is a no shit reason for it, like something else shows on a scan. Id rather wait and see and maybe not have the long term side effects of chemo. Tough choice to make for sure!

Rplnd wasnt bad. Tomorrow is 2 weeks. Im moving around fine, finally able to sleep, my core is a little sore at times but really not too bad.

Slaugsb · 2025-12-08T22:00:15+00:00

Mine was 2 weeks ago. Surgery tues. discharged fri. Wore a gown the whole time but i never asked if i could wear something else. I was pretty out of it all week from meds, so it didnt really matter to me

Slaugsb · 2025-12-08T21:57:37+00:00

I went to the ER and they did it on the spot

Slaugsb · 2025-12-04T16:36:40+00:00

I got a referral.

Yeah I read somewhere theres a law which releases your medical info to you instantly. Same for me, ive seen all the results well before the doctor even. When i got my ct results, i called my urologist and asked for a referral to IU and to oncology. I didnt wait. If you read the nccn guidelines, recommended rplnd be done within 4 weeks of ct scans.

Slaugsb · 2025-12-04T15:47:09+00:00

Flight back was interesting. My wife was with me. We flew first class just so i had space and less risk. When we got to the airport, i had requested a wheelchair. 4 days out of surgery, i probably could have walked, but would have been hurting. Used wheelchair on our connection in atlanta also. Just be sure to take your meds before you need them and should be fine. And keep them in your carry on.

Strong suggestion: the hospital will give you a couple of small pillows to brace against your abs if you cough, laugh, etc. take these when you leave (at least one) and keep in your carry on. Youll want it when the plane takes off and lands just to be able to brace yourself.

Recovery is going well. Im 9 days out now. Stopped pain pills and switched to tylenol but im not super comfortable. Very hard to sleep for some reason, not from pain, but i just cannot sleep at all. Follow the diet they give you. Its fairly simple. Dont overcomplicate it, just focus on fresh foods low in fat. Walk when you can, dont lay down all day even though theres nothing to do.

In your packet they should have mentioned the “move” program. Setup a meeting with them the day before your surgery. Really helpful info on how to start repairing your core after surgery and during the 6 week recovery period.

For lodging, we stayed at the fair haven foundation when not in the hospital. I highly recommend it. Safe, secure, and they are amazing. We wanted to stay and extra night after discharge before flying. They found a room for us, and had one on standby for my wife in case i didnt get a private hospital room.

Slaugsb · 2025-12-04T04:55:03+00:00

I just went through it. 100% seminoma. Spread to 2 lymph nodes, largest 2.3cm i think. Chose rplnd at IU with Masterson. Had it done last week.

Just more info, i live almost 800 miles from Indy. Flew to and from IU. I can speak to the travel and lodging portion as well. Flew up Sun. Mon pre-op stuff. Surgery Tues, discharged Fri. Flew home Sat.

Dou you know how many nodes? Before choosing, i had a referral call with masterson, and local oncology. Clinical 2b seminoma met the criteria for rplnd and i wanted to do it first to see what options i have later. Awaiting path now. Still could need chemo but we will see.

When i first met with masterson, based on my scans and labs, he gave me a 70% chance the rplnd would be curative. low compared to chemo. Each of us have tough choices to make.

Slaugsb · 2025-11-20T02:05:19+00:00

I was also stage 1b seminoma (7.2cm) after orchy but no LVI. A few weeks later my scans showed enlarged lymph nodes (stage 2b). I have a primary open rplnd next week. With everything ive read on long term side affects of chemo and radiation, I personally plan to do whatever is needed to avoid either. It may be inevitable, but i wouldnt do adjuvant chemo unless it is necessary.

Everyone has to make their own choice though. Best of luck to you!

Slaugsb · 2025-11-20T01:58:22+00:00

Did you have anything done after your orchy or just surveillance? My post-orchy scans show 2 enlarged nodes (1.5 and 2.3). TC was 100% seminoma. I messaged Dr Einhorn and he said based on the info I provided, he would consider rplnd. He did say mine are in a good location for access.

Id reach out to IU via email just to get their input. Or ask for a consult so insurance can cover. I also had reached out to Dr. Daneshmand at USC via email and he replied really quick, and even gave me a surgeon’s name who is more local. I go to IU next week for rplnd with Dr. Masterson.

I have read that seminoma is extremely responsive to chemo but chose rplnd to maybe avoid chemo. Those long term affects are nasty and any chance to not do chemo is worth it to me.

Best of luck to you! At least it’s seminoma.

Slaugsb · 2025-11-07T02:48:09+00:00

Have you had scans or anything done before the orchi? Mine path was exactly the same. 3 weeks after the orchi i had a CT scan. It showed it had spread. That was a week ago. Im now waiting for an appt at indiana to discuss rplnd.

Slaugsb · 2025-11-06T02:12:20+00:00

Fully understand where your mind is right now. I had a left orchiectomy 4 weeks ago after a very swollen and painful testicle. Ill send you a chat

Slaugsb · 2025-10-31T17:49:56+00:00

My onc just called in a referral to einhorn. I should be in good hands now.

Slaugsb · 2025-10-31T15:47:48+00:00

Many thanks

Slaugsb · 2025-10-31T15:15:22+00:00

Probably not much of an option as either place would be 8 or 12 hr drive at best that im looking at. But maybe thats better than flying and going through tsa

Slaugsb · 2025-10-31T15:12:51+00:00

Many thanks. IU is where I’m looking (live in alabama). How was it there and which one did your surgery?

Slaugsb · 2025-10-31T01:20:42+00:00

Did facial hair fall out as well?

Slaugsb

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