New to group; very high PSA; headed f... - Prostate Cancer N...

Prostate Cancer Network
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New to group; very high PSA; headed for da Vinci surgery

happycamperguy
happycamperguy

My Oct. 2019 PSA was 59.07. Follow-on PSA was 79,3 with PSA Free of 3.45 and PSA Free % = 4.4%. November 2019 needle biopsy showed Gleason 7 for all six prostate areas (Four were 4+3 = 7 and two were 3+4 = 7), "Perineural Invasion: Present: in all six prostate areas. Follow-on full body bone scan showed no bony cancer spread. CT Scan showed "no evidence of metastatic prostate cancer" and "unremarkable appearance of prostate. No convincingly suspicious pelvic lymphadenopathy to suggest nodal disease."

After much consideration and homework, I chose da Vinci surgery about 3 hours from home. Surgery scheduled for March 2020. My first visit with my surgeon is in a few days, and I seek to better understand likelihood of cancer spread, incontinence after surgery, how a surgeon decides to do nerve-sparing surgery or not.

I understand I can first do surgery and radiation later if needed, but I can't start with radiation and then do surgery later.

What might my very high PSA mean? If I risk having nerve-sparing surgery to allow for preserving continence after surgery but there is evidence of cancer in external neurovascular bundles, how effective might follow-on radiation treatment of neurovascular bundles be? I'd really appreciate some patient perspectives. Thanks in advance.

18 Replies
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I should add I’m age 70. No plans for children. Already on Lupron so almost no sex drive left, and I can live with that. Mostly concerned about permanent incontinence.

It is true that if you do radiation first, salvage surgery is a poor idea. But it is not true that there are no salvage options - in fact there are several, many with better outcomes than salvage radiation after prostatectomy:

pcnrv.blogspot.com/2017/09/...

It is an especially poor idea to go into surgery knowing you will do salvage radiation afterwards. The toxicity and effectiveness of salvage radiation is much worse than if you had done primary radiation.

There is one kind of radiation for high risk men like yourself that has outcomes that far exceed surgery or IMRT. It involves external beam radiation with a brachytherapy boost to the prostate and long-term ADT:

pcnrv.blogspot.com/2018/03/...

With your high PSA comes suspicion that the cancer has already spread beyond the prostate. If it is still in the pelvic lymph node area, it may still be curable, but only with radiation. The bone scan/CT you had only "detects" lymph nodes judged to be cancerous by their size, but lymph nodes may be cancerous while still being under 1 cm. Unfortunately, the type of scan capable of detecting them, a PSMA PET scan, is not yet available, except in a few clinical trials. Lacking that, it is a good idea to irradiate the entire pelvic lymph node area.

I hope you have done due diligence and met with radiation oncologists as well as urologists. They have very different points of view.

Thanks. I'll take a closer look.

Your PSA is awful high to not have spread beyond the prostate into the lymph nodes (LN), albeit not that it has by any means. Has your doctor discussed getting a PSMA scan to rule that out? If your PSA after starting Lupron is still above about 2.0, it's still possible to get a PSMA scan. I had the PSMA scan before starting Lupron and it picked up LN involvement where a CT scan might not. I was LN+ with a PSA of 29, Gleason 7, and went the radiation route with High Dose Brachytherapy (HDR-BT) followed by external radiation (IMRT). You should talk to a radiation oncologist.

About your concern about nerve-sparing surgery and incontinence. They are not related. Nerve-sparing prostatectomy means that the surgeon tries to avoid injuring the nerves (Cavernous nerves) which facilitates erection. Continence (which is controlled other nerves) is best perserved by doing the Kegel exercises before the surgery.

If you do surgery it is recommended to also remove pelvic lymph nodes (PLND) to rule out that the cancer has spread to the nodes. (Surgery with an extended PLND represents a valid option also for patients with known spread to nodes.)

How are pelvic floor muscles controlled? I thought it was nerves in the 2 nerve bundles that might be surgically removed. I’m not concerned about preserving erection, but I am concerned about preserving continence. You seem to be saying that the pelvic floor muscles are controlled by nerves AWAY from the prostate area where the surgeon has the option of doing nerve-sparing surgery.

I’ll keep doing kegel exercises in any case.

My anatomic understanding is that the nerves that controls the pelvic floor muscles is not part of the bundles involved in the nerve sparing procedure. But nerve sparing could have some positive impact on continence anyway (don't understand way). I think that the inevitable damage on the bladder neck sphincter has a much greater impact. Continence will rely on an effective urinary sphincter supported by strong pelvic floor muscles. Do the Kegel seriously! I had surgery and is 100% continent.

This is one study discussing the subject:

Preservation of the Neurovascular Bundles Is Associated with Improved Time to Continence After Radical Prostatectomy But Not Long-term Continence Rates: Results of a Systematic Review and Meta-analysis

europeanurology.com/article...

We found that avoiding damage to the nerves around the prostate improves urinary continence in the first 6 mo after surgery. After this time, there is no difference in continence between men who had these nerves removed and those who had them saved.

You’re correct. I met with my Urology surgeon in Spokane. He said the pedendal nerves controlling pelvic floor muscles, and therefore continence after surgery, are NOT part of the two neurovascular bundles controlling sexual function that may or may not be removed during surgery. He’s done more than 2,000 robotic- assisted surgeries, and always seeks to preserve the pedendal nerves.

He also ordered a 3T MRI to take a closer look at possible cancer spread near the prostate, such as at the bladder exit. And he’s an excellent communicator.

Hi HC, Welcome to the group. I had similar diagnosis, and had the surgery in August of 2018. My experience with the incontinence was pretty good. I had to wear liner pads for a couple weeks and then was good to go. Outside of a little drip now and then when I am at exerting myself, I am pretty good. I was most frightened by having to have a catheter for 8 days, and honestly it didnt hurt at all. I know this process can be intimidating, but know that there are a lot of us on here who went through the process, and can answer most questions or concerns you might have.

Best of Luck buddy.

I had this surgery...and wish I had had more info. Please review in detail the NCCN.org site for their patient guide to Prostate Cancer. An alternative therapy of ADT and Radiation might have give me 97% survival rate at 5 yrs vs. my present 42%. My Urologist never shared this resource with me. Best of luck.

I wish you well in your decisions. I faced the same decision Feb. 2018, after scans/biopsy confirmed non-metastatic advanced Gleason 9 PCa. (I had my scans on my 63rd birthday).

My urologist detected a nodule on my prostate during a DRE, which was also of concern. He recommended radiation or surgery, and mentioned both had similar outcomes (statistically). Once I chose surgery, he mentioned a clinical-trial. Then after an ECG and some blood work, they determined my health good enough for this trial.

The provided neoadjuvant cancer medicines for 12 weeks, leading up to my having a RP. It was everything they described it to be, the "kitchen-sink" of cancer meds.. Then in June of 2018 I had my RP. If you're interested there is more detail in my bio.

After my RP I had incontinence. I chose my surgeon as his specialty was in nerve-sparing. Unfortunately however, he had to remove 2/3 of the nerve bundle on the right-side. This is also the side my nodule was noted during a DRE. I wore pads for a good 6 months. I did Kegels daily. Then one day I noticed I no longer need the pads.

I am now 18+ mos. post surgery. Incontinence is that of an occasional drip at times, but very manageable. My PSA (tested every 3 mos.) has stayed low, below threshold (0.03). Prior to surgery, it was just above 9. As for ED, I would say that with assistance from sildenafil I can achieve close to 50%.

I wonder at times how results would have been if I had gone the path of radiation. However I do believe I made a good choice, in that the beast is out of me, along with 24 lymph nodes they removed from my pelvic region during the surgery. No regrets, I feel very fortunate, and I pray others have good outcome with their path decisions as well. I wish you the best!

Thanks. I learned last week at my first meeting with my Urology surgeon in Spokane that he will remove a number of nearby pelvic lymph nodes during RP surgery, and have a pathologist look to see if they contain cancer. I didn’t realize there are more than 2 lymph glands or nodes in the pelvic region. It makes sense to me that they would be removed. He also ordered a 3T MRI to look closer (than my CT scan) for cancer near my prostate, such as at the bladder exit area.

I was in Spokane just a couple weeks back. My son had an interview there, and asked if I'd ride along. It is a nice area, and much less crowed than over here in Seattle.

I wish you the best of outcomes!

Hi. Not a huge amount to add. I live in Australia. The PSMA PET scan seems to be rare in the USA. It’s pretty routine here in diagnostics. I live in a mid size country town and it’s available locally. . I only found this out reading homme-interrupted.blogspot.... and his later posts. Your PSA is high. In the UK the NHS does not do surgery if your PSA exceeds 20.

Check the MSKCC prostate nomograms, for the probability that your surgery will be "curative" (no recurrence in 5 or 10 years):

mskcc.org/nomograms/prostate

i think you'll find that TallAllen is right, and that the probability of recurrence is quite high.

In which case, ADT + radiation (or "brachy boost") makes a lot of sense.

. Charles

Welcome Cancer Brother.....dig deeper please...Peace

Hi New to,

Was left with incontinence and impotence post surgery, but can live with both -- had artificial sphincter installed, which works pretty well, and exploring shots, etc. to cope with the impotence. The surgeon was great. These things happen with RP. I don't at all regret having had it. Eye on the prize. No cancer four years.

Best of luck,

Fairway

Hi happycamperguy!

As you have no bone mets, maybe you could prevent it by taking curcumin. My husband with a Gleason 9, stage IV PCa discovered in November 2018 has no bonemets, certainly because he's taking curcumin for about ten years after another cancer he had before.

"Curcumin Inhibits Prostate Cancer Bone Metastasis by Up-Regulating Bone Morphogenic Protein-7 in Vivo

ncbi.nlm.nih.gov/pmc/articl...

Best of luck !

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