Psa of 7+ AFTER rp!?!?!

Sheilkat,

My dad grew up in Sanford, and our camp is in Acton.

I'd repeat the other recommendations--get one of those pleated folders with the tie flap and put all the paper, CD's of scans and x-rays, and a spiral notebook and pen. Keep everything, and if you don't have copies, ask for them. Use the notebook to write down questions and answers--it's good to go with him to be a second set of ears and to take notes.

Do get down to Dana Farber as soon as you can--plan on a full day of consultations--and see if local treatment can be arranged, sometimes it can.

Oh, don't worry TOO much--chances are he'll be around to bother you for a good long while.

Don’t be surprised if you don’t get to go with your husband for the scans. I had to drop my wife off for a couple of them and same thing happened with her oral surgeon this week as I waited in the parking lot. This does not really matter in the scheme of things but hopefully you can be in on the consults which may be video still at many places. Makes follow ups easier from Maine also.

Hi again, it's always stressful waiting for the scans, three plus weeks. Hubs was relieved to find out that both the cat and bone scan came out clear. Some arthritis going on, but hey 2 bouts of Lyme can do that to you. Stupid insurance won't cover the PET scan they suggest cause you know, a psa of 7.7 AFTER ralp is nothing to freak out about. (Sarcasmlol) so a pelvic mri is in order and if that's negative maybe.........insurance companies are satanic. I wonder how my referral to Dana Farber is coming along? But new complication after getting the clean scans. He started complaining about pelvic pain and swelling. Ultrasound confirmed an inguinal hernia and they referred him to a general surgeon! Knowing him, it's probably because he's been doing too much physical stuff since surgery 4 months ago. Heck he's chopping wood right now. Geez. Guess he won't be after they fix it and winter is coming. Anyone here have experience with hernias after surgery? I did read it's not an uncommon side affect. And laparoscopy might not be possible after a ralp. With all that's going on can't he just get a break!?? (The clean scans were a nice break but knowing something is behind the curtains is a buzzkill). At least he upright taking nourishment I guess. Lol. Thanks again and be well!

I have a post RALP umbilical hernia that causes no pain or problems. Previously I have had 2 hernia repairs. Just tell him not to read or watch anything funny. It hurts to laugh.

Shielkat, keep us posted as things progress. The good news about PCa is (mostly) that it's slow moving. The bad news about PCa is that it is slow moving. Hang in there.

Oh, if he wants to cut wood for winter to keep his mind off his situation....then let him. It's good that he feels good enough to do it.

Hi again. I have a little update. If you've been following our story, my husband was diagnosed after a PSA of 13 and biopsy Jan 2020, ralp May 2020, post surgery PSA was a disappointing 7.5!! CAT ,bone, and MRI scans all unremarkable, developed inguinal hernia which needs to be fixed, and finally a PET scan lit up one lone renegade lymph node, nonenlarged, hidden in the back, suspicious of metastatic disease. Geez, they took the wrong ones out during surgery. (the 9 they took were clean) The waiting has to be the worst. one minute you're sure you're a goner, next you're ok, then back again. Wait 4 months for a surgery you expect to fix you but fails, wait 4 weeks for a scan, wait 3 weeks to convince insurance to pay for the next one, wait another 2 weeks for the third scan. And then BOOM next week we're meeting the oncologist. I knew there was cancer left behind and relieved he wasn't lit up like a Christmas tree, but my poor guy is back to the "goner" phase. He's nervous about the hormone therapy we expect will be next. Last night he said his testosterone makes him who he is. Plus the hernia makes him very uncomfortable and reinforces the idea that there are much more sinister things going on his body besides a "common" hernia and a renegade lymph node. Otherwise he feels strong and well, albeit he tires easy and doesn't gain weight with his huge appetite. His GP said his weight has been steady though. He has always had a super fast metabolism. The worry is always there. We will know more on Tuesday when we meet the oncologist. THEY ARE LETTING ME GO!!!! Thank god for that because not being allowed to go to his appointments has been TERRIBLE! Once again we will request a referral to Dana Farber in Boston. Too bad they can't just fix the hernia than zap the renegade at the same time. Maybe they can. Keep us in your thoughts and prayers. Thank you all.

Continuing on after today's appointment, all the PET scan showed was some mild uptick in one non enlarged pelvic lymph node tucked way in the back, I call the renegade. Not a candidate for removal,Djin, way in the netherlands and not even remarkable enough to dis finitively pinpoint. And as we know with pca, the demon cells can be anywhere. We saw a fabulous oncologist, Dr Christian Thomas, today. Oncologist went well. He wasnt convinced the PET showed anything ,the arrow left by the radiologist didn't convince him either, but having a post surgery PSA that high indicates cancer left behind. No question. And with a PSA that high they expect to see something more substantial on the scans, which they didn't. (Prayers work) They took a PSA today too and the doc suspects it will be even higher. So he got his first hormone shot today. That should kill the cancer cells throughout the body. 7 more in the next 2 years and a referral to radiation. They are trying for a "cure" which sounds good to me. I wasn't really expecting that. We didn't even pursue the referral to Boston. Dr. Thomas exuded knowledge, confidence and optimism. Wish us luck. RO appointment next week. And away we go. BTW we got home from the appointment and start of adt and what's he doing? Chopping trees in the backyard!! God love him. Wish everyone wellness!!!