Psa of 7+ AFTER rp!?!?!

Thank you in advance for allowing me the space to vent. I'm a wife, and the hubs was diagnosed in Jan 2020. PSA of 12. Biopsy was 6/12 bad samples. All on right side. Gleason 3+4. Had robotic nerve sparing surgery in May. Negative margins. Epe present but non focal, right base, adjacent too but not involving seminal vesicle. Seminal vesicles negative for tumor. No mass legions of Lymph node candidates identified. Lymph nodes checked, per husband's request. The ones they checked were negative for metastasis. Devastated by a 7.5 psa 3 months later, surgeon surprised, got a retest immediately which came back 7.6!!!!!
Now waiting on bone scans, cat scans and whatever else. The waiting is horrible. No one seems to share our urgency and worry. Covid worries don't help either.

Shellkat, welcome to the forum, very sorry about what you guys are going through right now. I was also perplexed by the large number. But as Djin said, at that PSA level, whatever is left behind should be picked up by imaging, so the Doctors will know where to radiate.

Of course it’s always possible that imaging will show metastasis to bones or elsewhere, but I’d be surprised if that was the case, with a PSA of 7.

Based on an assumption that is the case, I’d suggest that you start now to seek out a competent Radiation Oncologist, if possible at at a Center of excellence, such as Memorial Sloan Kettering, MD Anderson, etc, depending on where you live. Having retested and reconfirmed the reading, I see no reason to wait for imaging to at least get the ball rolling. Once you get the imaging results, you,LL have the relationship established. Radiation oncologist is probably your next stop assuming imaging shows no distant metastasis. Your surgeons work is done. He’s not the one to depend on for further treatment.

Should the imaging show a surprise of distant Mets, then you’ll want to seek out a Medical oncologist, but I think that’s getting ahead of yourself for now.

Good luck to you and your husband, please keep us posted,

Remember too your hubby has to heal before having any radiation. How is his continence?

Thanks everybody for the support! We both really appreciate it.
Djinn, there was NO Cat prior to surgery!!! He saw both a radiologist and a surgeon prior to deciding on treatment. I remember the radiologist would of started with a CAT. Why not the surgeon???? Covid has limited my ability to be with him at appointments (I always went to the serious ones!) Dam, I haven't even met the surgeon in person. She did call after the surgery with great hopes of success, although she did mention the epe. The Gleason stayed at 3+4 after surgery, percentage of pattern 4,40℅, prognostic grade group II, tertiary pattern absent. I don't think they took entire lymph nodes, from what she said on the phone. In the pathology it looks like one on the right side was dissected and 8 were dissected on the left.

Pratoman, thanks. His scans are next week so we will find out more. Family suggested seeing someone at Dana Farber in Boston (2 hours away). We will look into that. Hubs can be stubborn at times. Lol.
GoBucks (O-H. . . 😉 My dad is an alumni lol) He is healing well and the incontinence has greatly improved. He feels pretty good and strong, despite the anxiety, but can't seem to gain any weight however he has always had a zippy metabolism. They told him his PSA was too high to warrant radiation now.
And thanks Mumbo, we are in Southern Maine, the surgeon came highly recommended and friends have had successful rp within that urologic practice. We just got unlucky, or something. I can't help but feel the Covid restrictions have been a detriment and not allowing an advocate during serious treatment discussions is criminal. I will be with him during his scans and will insist on accompanying him on future appointments. No way he is facing this alone. I

Thanks again everyone for the advice and support. We will keep you posted.

The initial scans also serve as a baseline reference for future scans.

To Djins point, I do not recall having a CT scan prior to surgery, but I did have an MRI, my surgeon said it was part of his planning process. I was a g6 on biopsy.

Shellkat t, Dana Farber would be an excellent option. I highly recommend you get there post haste, and no longer rely on what sounds like a local practice, I’m guessing, associated with a regional hospital network. Mumbo did a better job of expressing something that I tried to do gently. Continuing to work with the surgeon would likely not be helpful now. Even the scans, someone correct me if I am wrong, but why a bone scan, I think one of the more advanced PET scans would be more helpful, AUXUMIN, PSMA (not sure if PSMA has been approved yet or stilll clinical trials.

Wow. I think covid has a lot to do with what appears to be sub standard care. Gee, he hasn't even seen his urologist since the appointment after the biopsy. Back in Jan. one appoint in April was canceled because of covid and he hadn't had the surgery yet. His fear with cancer, and I know he is expressed it, was once you cut it, it's likely to seep out and infect. So he decided to take it all out. He was concerned that surgery wasn't scheduled until May and bad cells were seeping out the biopsies. I suppose it's time to batten down the hatches, research more and find better doctors....on a side note, He has had numerous cats 4 years prior for serious pneumonia complications not connected to any cancers, maybe they used these as a baseline?? But now I have the feeling we are just getting strung along. Hate to feel like that. Plus remembering back to the pneumonia and the complications after they poisoned him with the iv antibiotics (another horror story for a different support group, ha!), he often under exaggerated his symptoms to the hcp. Thus, I went to appointments with him. lol. Covid stopped that. Grrrr. We are going through a different hospital system now, btw. Just bad luck with doctors I guess. He's only 62. Still working (much to my dismay, his job is super stressful, he sells cars....grrrrr) he's scraping and painting windows right now, and we will take a kayak later. Lots of things to mull over.

A CT scan, before surgery, for a G3+4 is SOC, I believe, and I had one.

As you can see from my history below, Shellkat, I had persistent PSA after surgery also, but not as high as your husband. As others have said, your man need to get his stubborn butt to Dana Farber now, unless he has a secret wish to die a miserable death. You will find no better, even in NY or CA.

I've seen too many urologists and oncologists, and the most knowledgeable radiation oncologist I've ever had an appointment with was Dr. Anthony D'Amico, at Dana Farber. Easy to understand, empathetic and first class. A PhD in radiology from MIT, before he went to medical school. A short bio:

Dr. D'Amico is a professor of Radiation Oncology at Harvard Medical School and is the chief of Genitourinary Radiation Oncology at the Brigham and Women's Hospital and Dana-Farber Cancer Institute. He received his PhD in Radiation Physics from the Massachusetts Institute of Technology in 1986, and then his MD from the University of Pennsylvania in 1990, where he also served as a resident and then chief resident in 1994. He has gained international recognition for his work in detection, staging, and treatment of prostate cancer with over 140 peer-reviewed publications, and has co-edited four textbooks in Urologic Oncology. His prostate cancer research is funded by federal grants from the NIH, NCI, DOD and MA DPH.

adamico@bwh.harvard.edu Good luck!!! Appointments can be difficult. Make one now, then research to your hearts content. Appointment can be cancelled at no cost ;-)

Shellkat, thanks for being a good resource for Hubby. Tell him I said I-O!

Sheila,

I'm curious, if you care to share, where in S. Maine? My dad grew up in those parts, and I am the current owner by inheritance of a camp that has been in the family since 1936.

I, too would strongly suggest you get down to Dana Farber and get a full evaluation. You'll need to meet with a Radiation Oncologist and a Medical Oncologist, and get up to speed promptly. Usually they don't do follow up radiation until at least 3 months post surgery to give time for healing. If he has issues with continence or ED from the surgery, radiation will be a step backwards for that healing process.

You are a terrific advocate for your husband. Thank you.

If that PSA is accurate, the condition is quite serious. Nothing about having or understanding PCa is either easy or clear. You need to be an active advocate for your husband. Please do the following ASAP:

1. Get the Dana Farber appointment now. You don't need a referral, and your surgeon's job is over.
2. Get a second PSA test immediately.
3. Have your doctor forward pathology slides to Dr. Epstein, at Johns Hopkins, for a 2nd reading.
4. Have the hospital request a Decipher genome test.
5. Insist that your husband record all doctor visits. What's said can be confusing, and denial doesn't help.
6. Check out this blog. prostatecancer.news/2016/08 It contains some valuable persistent PSA data.

While this is a very serious situation, don't lose heart, or let your husband ignore it, because it will only get worse if you don't get moving very quickly. Time is of the essence.