(No Subject)

Hi, New here.

Posting for my husband with his permission.
Newly diagnosed Monday. Age 54. Otherwise healthy. No meds. Bone scan and abdominal CT yesterday.
PSA between 24 and 28 for past THREE MONTHS (!). Treated with 2 kinds of antibiotics. Didn't budge. Biopsy 2 weeks ago.
6 of 12 cores positive, all on left side. One core on right suspicious. Not definitive.
Two 3+4=7, three 4+3=7, one 4+4=8. Two of the 3+4 were 60% cancer, the 4×3s were between 70%, and 90% and the Gleason 8 was 90%.
All cores had perineural invasion.

Husband has been symptomatic with pain in groin, pressure and discomfort with bowel movement, and fatigue. Sometimes back pain which he says is not bone pain.

I'm finding myself pretty angry at the surgeon for writing three months like a cavalier ba $t*rd.

What I've done so far: sent pathology to Dr. Epstein at Johns Hopkins. Still waiting for his Gleason scoring.
Made a back up appt with radiation oncology at teaching hospital, and with medical oncology at same place.
We are going Monday to get results of scans, then will consult with other docs.

I feel like this has already spread. I hope I am wrong.
I also feel like we have not been cared for properly with this urologist. If husband requires surgery, I don't personally feel like I would trust this guy anymore. They said they sent his slides to JHU, and I had to call all week to confirm they did. Yesterday I found that they had not! They overnighted them yesterday afternoon at my insistence.

Also, urologist gave us the news, he never mentioned that all positive cores had perineural invasion. I had to read it on the path report.

What should I be doing/asking for that people might not offer? I got refused when I asked for 4kScore and fusion biopsy. Worried that people are in the dark here, or that we are coming across old school docs. Trust eroded.

I want to advocate for my husband as best as I can.

Also, with these numbers and symptoms, do y'all suspect it could have spread? The Gleason 8 has me extremely worried.
Thank you.

Thank you! I saw another post a didn't have a title and thought, "I'll be sure bit to do that!" 😂 thank you.

I will let the uro anger go. One less thing to hold onto. I need to keep my heart and mind open during this.

We are in Florida.

Thank you so much.

Thank you, George. My ignorance was causing emotions I don't want. There's enough gowing on.

Good to know. Back in August when we found out about the PSA, I started info gatherIng, I ran into the name Dattoli. Then I lost the file I had been saving somehow. Forgot the name. Thank you!

I was researching perineural invasion and a few studies showed it to be potential indication of mets, so I got worried there.

If there is a chance for surgery, there will be no nerve sparing options, I'm assuming. Do they ever spare nerves on one half?

Hi KT, sorry you have to be here. You are doing the right thing, it's important to be your own advocate. As far as nerve sparing on one side, yes that is possible with surgery depending on what the surgeon finds. I am not sure if radiation cooks the nerves or not.

While there are good resources in Florida (Dr. Patel in Celebration for robotic surgery for one) I highly recommend you consider making a trip to MD Anderson and let them work up your husband. You will have urologists and radiation oncologists consulting and will give you recommendations (they are all salaried so there is no conflict in interest.) If the answer is brachytherapy (seeds) they have one of the best Docs in the country. My urologist/surgeon (John Davis) has performed over 2,000 da Vinci robotic radical prostatectomies.

There is a nice hotel on the campus (Rotary House) and all buildings are interconnected with walkways including the hospital part. In fact, we leave tomorrow for 18 month follow-up appointments with Dr. Davis and my radiation oncologist at MDA.

KT,

the next steps should be an MRT and a bone scan to determine if there are metastases and whether the tumor has grown outside the prostate. Depending on the results the treatment will be planned.

If you want the best diagnostics you could have a PSMA PET/CT done.

To decide between treatment choices there was a large study made called "ProtecT". This could not determine a difference in cancer control between surgery and radiation, but there were less side effects with radiation: Patient-reported outcomes from ProtecT

George

KT...sorry about your husband's diagnosis, but glad to see you advocating him. (Not sure if your screen name indicates your a Vonnegut fan or a sci-fi writer.) You've already got some good info here and I'm glad to see you already have an appointment with an RO. (And although I have no personal experience with Dattoli, the reputation is excellent.)

Scan info will be key since they'll let you know if there are obvious mets. (Just be forewarned that they also show every nick and bump your husband has had over the past 54 years.) Even if there are no obvious mets, hormone therapy is still a likely next step.

Please report back on the scan info and best of luck to you and your husband.

Sorry to hear of your frustrations with the doctors treating your husband. In most cases, you and your husband are the best advocates for his care. So you have to stay on the doctors.

Get more opinions! Talk to friends; odds are someone close has had prostate cancer, or knows of someone who has. Many of us are more than happy to help newcomers to this "club". Seek out the nearest well regarded medical center of excellence in prostate care.

Regarding surgery, an experienced surgeon will try to spare nerves when possible. It depends on the pathology and what the surgeon encounters once he is operating. In my case, I know he spared the nerves on one side, and some on the other. Just remember, the first priority is removing all the cancer.

Good luck.

You got a lot of good advise here..I had surgery (which failed) and then radiation (which also failed)..If I had to do it again, I would skip the surgery, why sign on for all the side-effects of surgery when radiation, especially today, can do just as good a job if not better with much less side-effect risk....Find and talk to the best RO you can find. MO too..Sounds like you are on the right track....

Thank you, everyone. You have shared such helpful information. I am going over the links and all replies with my hubby.
Allen, your PC blog is wonderful.

We are meeting goes with the disgnosing urologist in 45 minutes to find out results of bone scan and CT scan.

I have a tracking number for path samples on their way to JHU now...they will get there by 3 tomorrow, so that is in the works.

We will know more this evening. I will probably make a siggy and start a new post with a title.

I remain grateful to you all...

Thank you, Alephnull . I was going to ask doctor about that. He is running 45 minutes late, so I am taking the time to go over my list of questions. Going to look at y'alls sticky threads now that I think of it....