Up and Down, Back and Forth, Conflicting PCa history. Will value all opinions re future treatment. TYIA!

[Bethpage]

In a post on Feb. 3, which was incomplete regarding my husband’s 4.5 year history with diagnosed PCa, I replied to George71 (his post entitled, “SABR-COMET-10 trial that radiates up to 10 lesions”) that my husband and I are struggling as George71 is with the decision of how/when to proceed with (husband's salvage) treatment. Tall_Allen questioned why we’re “struggling” since my husband has not had salvage radiation to his prostate. I would really appreciate feedback from as many of you as are willing to reply, so will give his history in as short a form as possible, but also to give complete info. Husband is now 77 yo, skinny (5’10,” 145 lbs.), no meds, teaches 6th grade math in FL.

IF you have the time to read this and respond, THANK YOU!

Husband started yearly PSA testing in 1995

2003, first PSA rise to 7.47, TRUS biopsy 12 cores negative, PSA rise attributed to extreme BPH.

From 2004 to 2009, PSAs up (highest 7.65) and down (lowest 5.43), TRUS biopsies done every other year, 12 cores always negative.

2010, missed PSA due to relocation, new job, house hunting, moving and finding a new urologist.

2011, BPH still worsening, gland estimated to be 100+ grams, PSA 7.74, urologist prescribed Rapaflo (allergic reaction to Finasteride) for BPH, recommended eventual Green Light.

2012 & 2013, urologist did not repeat PSA, pushed hard to do Green Light without further tests or attempts to resolve BPH, so consulted another urologist.

March 25, 2014, new urologist, PSA 11.75, recommended TURP.

April 2014, PSA 14.80. Later in April, TRUS biopsy, all 12 cores negative. Biopsy caused prostate to swell so that husband could not come off of Foley, so he was told now no alternative other than simple prostatectomy. Surgeon could only do open simple prostatectomy and needed an assistant surgeon from Tampa.

My reaction, just NO!

June 2014, consulted with Dr. Vipul Patel, Celebration, FL. Dr. Patel did not repeat PSA nor biopsy, but scheduled robotic simple prostatectomy based on history and latest biopsy results (3 months earlier).

August 14, 2014, laparoscopic robotic simple prostatectomy, Dr. Vipul Patel. Prostatic tissue removed in “simple” was 86 grams. Post-surgical pathology revealed tumor 100% G 3+3 = 6 involving less than 1% of the entire gland, largest tumor focus 4 mm in greatest cross-sectional diameter as measured on the microscopic slide, 100% negative margins, staged pT2c, no report on lymph nodes because it was a “simple,” but no lymphadenopathy.

Sept. 25, 2014, PSA 0.2

Sept. 2014 to Dec. 12, 2016, PSA rose in slow increments, but not continuously, to 1.2. Until PSA reached 1.2, Dr. Patel always advised that rise was normal because the surgery was a simple prostatectomy, and so prostate tissue remained.

December 2016, 3T-MRI revealed “mass” under bladder; PNI was observed.

March 2017, MRI-guided biopsy, 1 of 4 cores positive, G 3+4. Dr. Patel was convinced (and convinced us) that he could do salvage surgery to remove the mass and seminal vesicles. Discounted PNI as unimportant.

July 25, 2017, salvage laparoscopic robotic by Dr. Patel revealed NO mass under the bladder. All tissue analyzed in pathology was 100% negative for disease (despite that 1 positive biopsy core.)

August 23, 2017, PSA 0.6

Nov. 15, 2017, PSA 1.0

Dec. 13, 2017, Axumin PET, No positive identification.

Jan. 4, 2018, PSA 0.8

Jan., 2018, Dr. Patel referred to MO who recommended 2 years of ADT to start at the appointment plus 44-55 days of radiation. Dr. Patel disagreed because of the results of the Axumin and declining PSA.

Jan. 17, 2018, C-11 Acetate at Phoenix Molecular Imaging on advice of Dr. Patel. No positive identification.

March and June, 2018, PSA 0.7 (remained the same)

Sept. 2018, PSA 0.9

Nov. 2018, whole body bone scan. Reported very mild uptake at L4, possibly arthritis. Recommended 3T-MRI follow up to perhaps distinguish early met from arthritis.

Dec. 3, 2018 DCFPyL at Stanford, indicated mild uptake in LEFT prostate bed.

Dec. 4, 2018 68Ga RM2 at Stanford, no positive indication.

Jan. 2019 MO prescribed MRI prostate/pelvis w/contrast and MRI lumbar w/contrast. Lumbar w/contrast MRI was negative. Did not have MRI prostate/pelvis w/ contrast because it was coming up at Mayo Rochester.

Jan. 28, 2019 MRI prostate/pelvis w/ contrast.

Jan. 29, 2019 Consultation with Dr. Kwon, Mayo, Rochester. Advised MRI showed “very mild increased uptake RIGHT prostate bed.” Dr. Kwon recommended 18 months ADT plus 6 to 8 weeks of radiation to the prostate bed. Husband advised he has cognitive impairment; Dr. Kwon revised to “perhaps 6 months of ADT.”

Jan. 29, 2019, C-11 Choline PET. Results:

"FINDINGS:

Status post prostatectomy and lymphadenectomy. Very subtle mild choline uptake

at the right seminal vesicle margin, corresponding to findings at MRI.

Similarly no definite choline uptake corresponding to abnormal findings on the

left seen at PyL PET/CT exam.

No choline avid lymphadenopathy.

Diffuse mild choline uptake throughout the marrow is likely reactive.

Other findings on low-dose noncontrast CT: Vascular calcifications.

Nonobstructing bilateral renal calculi.

IMPRESSION: Very subtle choline uptake at the right seminal vesicle margin

corresponding to area of abnormality at MRI. No choline avid lymphadenopathy or

osseous lesions."

[Tall_Allen]

Again, why are you resisting salvage radiation of the prostate bed, as Dr Kwon recommended? Of the scans he's had, DCFPyL was the best. But it really doesn't matter, his persistent PSA is caused by prostate cancer. i don't understand what your reason for hesitating is. PSA may fluctuate, but it's not going away on its own.

[Bethpage in reply to Tall_Allen]

Tall_Allen, I guess that we're resisting because we're still influenced by Dr. Patel's 4.5 years of insistence that with a simple prostatectomy, husband will continue to produce PSA. In honesty, some resistance also probably comes from the fact that he's 77, still working, has noticeable (recognized by him) cognitive impairment and is advised not to do radiation without ADT. Fear of QOL to follow. I hear what you're saying and respect your advice. Thank you!

[Tall_Allen in reply to Bethpage]

i GREATLY respect Dr Patel, but he is a urologist. His job is over after the surgery. He does NOT follow patients who get salvage radiation, whether it succeeds or fails. Radiation oncologists are the ones who do, and that is the ONLY kind of doctor you should be listening to. This article shows the divide in advice patients get:

pcnrv.blogspot.com/2017/03/...

PSA quickly disappears after a prostatectomy if it was successful. It will never be as high as 0.8. At that level, adjuvant ADT is clearly called for. It may be possible to use two years on Casodex 150 mg/day rather than Lupron shots if you think that would be better for his cognitive abilities:

nejm.org/doi/full/10.1056/N...

It is possible to let the cancer take its course without further intervention, and he might get about 10-15 years, more or less, but he would expect to suffer with metastases for the last 5 or so years. If that is the course he prefers, he should know what to expect.

[Bethpage in reply to Tall_Allen]

Tall_Allen, thank you SO much for the extra explanations and links. It is _exactly_ what I was looking for (although I do always value other opinions because everyone has one and we have been offered many). We do realize NOW that Dr. Patel should have not waited until 2017 to refer us to an MO. That is water under the bridge. We should have realized earlier, when Dr. Patel said, "I might get a paper out of this salvage surgery," that we should move along. Maybe we did realize and just didn't want to hear our own inner voice speaking to us. Other than you, not ONE person has told us that the PSA should have never gone above 0.8 after simple prostatectomy. Not ONE. I sincerely appreciate the advice about Casodex as I have been watching this site and a couple of others about that treatment for several months - as I agonized. I am 65, have had severe Sjogren's for over 25 years and, for the last two years, lymphedema that does not respond to classic, proven treatment. I cannot read much or drive at all, but have taken responsibility for management of the PCa, except for his two surgeries and all of those myriad scans, of course, which are not small thing. I will not outlive my husband's cancer, but SO much want for him to do so. His mom lived to 90 and beat both colon and breast cancers, died from congestive heart failure. I do NOT want him to suffer from the effects of metastases for ANY amount of time, much less 5 years. From the content of your posts that I have read in the past few months, I want to hope that my husband still qualifies for a cure, if any such thing exists. I wish that for him more than anything. So THANK YOU from the bottom of my heart for the time it took you to respond to me THREE times!

[whatsinaname in reply to Bethpage]

Yes, Bethpage, there is absolutely no doubt in my mind that Tall_Allen is the BEST we have on this board. I can only hope that he stays on and contributes here for a long time to come.

All the best to you.

[TNCanuck in reply to Bethpage]

Best wishes to you both. Tall Allen can offer you more sound advice than I could ever attempt to....he's a blessing to all.