Having just received my diagnosis I am feeling a bit overwhelmed. My first positive impulse is to reach out for support, and improve on my prayer and meditation life. Staying positive is infinitely valuable. I have not yet had lymph nodes and bone scan performed, but we are working on getting that scheduled. I have scheduled an appointment first of January with a surgical urologists who specializes in robotic surgery. Once I meet with him, and have more information we can make a final decision. I decided to go with what I consider to be the best most highly qualified group in my region. For me that means initially a trip to Houston i.e. Baylor. I will say that visiting this site helped decision to have the biopsy, which I am thankful that I have now had.

The results of the bone scan and lymph nodes were negative which for now is a relief, and I will have the surgery in February. Things seem more stabilized since the diagnosis for now. I think that some of my nervousness following the diagnosis was due to the effect of the antibiotics I had been taking. Of course I am not minimizing the impact of the diagnosis itself, but I do notice a difference. I had been on doxycycline for a month preceding the biopsy with a goal of reducing the PSA, and I was taking ciproflaxen following it. Cipro can make some people jittery and insomnia prone. I am at the top of the list for those effects. My original urologist who did the biopsy believes that the robotic surgery may be the best chance for a cure. The biopsy revealed diffuse PC, and there was some perineural invasion, which the surgeon will take into account when he does the robotic prostatectomy. Another advantage pointed out by the surgeon who will do the prostatectomy is analysis of all tissue removed. So we will be revisiting that overview six weeks post surgery. Traveled to Houston last week to meet with the surgeon, and felt that after speaking with him I didn't really want to pursue any other options as ETBT. I am working on putting this into perspective spiritually in the context of its impact on relationships, libido, lifestyle etc. I find that reading the Disiderata on a daily basis is helpful. I also rely on the Psalms. I have begun to let people know that I appreciate there concern and interest in helping, but I may also need some space. I will be attending a retreat next week toward the goal of gaining more perspective.

My post surgery appointment day two weeks ago was a whirlwind. After a five hour drive the day before I found my way to the appointment in Houston the next morning, and met with my surgeon. Very compassionate guy, and a highly skilled surgeon who is tops in his field. We discussed the pathology. There was evidence of seminal vesicle invasion, and a few lymph nodes, but negative margins. Not the news I wanted to hear. He sent me across town to speak with a radiation colleague. So we are going to proceed with low dose image modulated/guided radiation therapy, which at their facility seems to have been taken to an unprecedented level of accuracy and minimal side effects. I will also look into a local treatment center, but am pretty convinced for now that I will probably be subject to fewer side effects with the group at St. Joseph Cancer Center.

For now I am working on improving the incontinence issue in preparation for the treatment, and trying to wrap my mind around being away from work for 8 weeks and living out of town. My next appointment is June 7th to assess the incontinence and maybe start the treatment. I'm currently taking Cialis and getting some VED therapy for the ED. Fortunately, there is a formulary in Houston that can provide the Cialis at a significant discount over retail. The ED issue may prove more challenging when I start the radiation therapy associated hormone treatment, which they use to 'bruise' the cancer cells prior to radiation i.e. the 'one-two punch.

I am now back to running daily, and enjoying the somewhat spring weather. This outlet along with prayer, meditation, and reading are helping the cause. I am trying to set better boundaries with family and employer, but this has proven challenging since there is significant added stress at home and at work due to another family members illness and the usual job stress. Along these lines the Serenity Prayer comes in handy. I will keep all of you in my prayers as we proceed on this shared journey.

I completed the adjuvant radiation treatment (39 sessions) in December. I was taking Casodex during the treatment, and my PSA had risen as of October 2016, which was when the radiation treatments were started, slightly to 0.105 since the initial surgery. I had started the Casodex in August 2016 due to the increase. As of March this year it was checked with the ultra sensitive method and the radiation/Casodex if you will apparently brought it down. I found the adjuvant radiation tolerable and the expertise of both the radiation oncologist and his team were impressive. I had some hesitations going into it, but I am now glad that I did it. I stopped the Casodex when the radiation ended in December.

At that time I had begun having some problems with anxiety, and suspected that is was mostly due to the radiation treatments. I did see a counselor about this, but didnt go for many sessions. I found a book on rapid eye movement memory reprocessing therapy to be helpful as a kind of self help tool. Although there isnt much literature on free radicals (which are generated by the radiation to some extent) crossing the blood brain barrier and causing anxiety that I could find I suspect that there may been something going on there. My radiation oncologist prescribed Sanex, but I actually never took it. Since then the anxiety has subsided significantly. I also run and get out in the woods whenever I can. So that helps of course. I was also finding that the Casodex was causing significant breast tenderness. Since the PSA has dropped I have not tried to initiate any more drug therapy. Although, I suspect its quite possible with my scenario (the pathology after surgery indicated 3T). There are some suggestions in the literature now that periodically going off Casodex helps prolong the efficacy and prevent the onset of treatment resistant cells, but I don't suggest doing this unless its coordinated by a clinician. I am also taking Zetia for cholesterol lowering, and I did run across a paper on the use of Zetia to prevent blood vessel growth to tumours. It was an animal study, and it may not tread water clinically for this disease, but it was an interesting find. I don't have the reference now but will try to look for it before I go on here next time.

I will have another ultra sensitive done at Baylor this summer. If you need a good reference for radiation treatments in the Louisiana and New Orleans area Dr. Monsur at East Jefferson Hospital is a good bet for adjuvant treatments. Regarding ED: Its not as bad as I thought before jumping into the big PCA therapy pool. I still take a Cialis generic obtained from a Houston formulary at a lower cost than what Walgreen's sells it for. In this department I often think of my surgeons response when I addressed it with him. 'Orgasm is up here (pointing to his head).' Of course I understand that with ADT those go too. That is probably down the road. Thank you for your thoughts and prayers out there. I will continue to keep you in mine.

Three months after the initial follow-up from adjuvant radiation. The PSA rose from 0.056 to 0.12 as determined by ultra-sensitive. The accuracy of these measurements and why this is occurring are subject to question. Following radiation there is inflammation, and there is typically a stabilization period for 6-8 months following radiation. I will get it checked again in September, and if the PSA continues to rise they are saying they may do a MRI, and if needed consider a local treatment if there are minutely detectable amounts that are treatable in a small local area.

It has been a busy year and I want to update my story. I recently had a check-up in Houston. All was good. However the PSA had risen to (0.452) since last time. The six month progression following adjuvant radiation was March 2017 (0.06), June 2018 (0.12), Sept. 2017 (0.180), March 2018 (0.280), Sept. 2018, (0.452). So it is slowly rising. The next assessment will be in January. We are not pursuing any additional therapy until it enters a zone between 3 and 5.

I am leading a very active life. I still run daily. I am still working full time. I am in a discernment process regarding retirement, and PC has been a factor to consider to some extent. As mentioned above it has been a very busy year due to moving to a new house.

I am also interested in seeing immuontherapy make some progress in PC. I have listed some recent PubMed papers below along these lines, which may be of interest.

I will keep all of you in my prayers.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5646317/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5968765/

https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0032726

I returned to Houston last week to have an Axumin PET Scan. The results were negative with no suspicious areas. So they are going to just monitor PSA's for now. This is kind of a milestone it seems and is helpful in evaluating time and plans to some extent. My PSA doubling time as of July was 8.2 months. Getting the Axumin approved wasn't a problem with my insurance. However, it took some time to clear the hoops with out of state offices. Apparently the routine MRI and Cat Scans that are typically required before approving the Axumin were waived due to out of state providers. I am considering consulting with a local clinician. My urologist suggested some local oncological urologists and oncologists.

During this time of staying at home due to the pandemic a zoom meeting for men with PC was made available by Russell and Jean Benjamin of the Benjamin Yancy Fondation. It is likely that they will host another one in May. This was my second opportunity to meet and share with men on the subject, and to my knowledge one of the only one in the metropolitan New Orleans area. The are reaching out to men with PC. So I would encourage you to contact them if you are interested. They offered a virtual meeting today, and may do something similar in weeks to come. On the PSA front my doubling time is 8.6 months. I have an appointment in Houston for this month and unless it is virtual I will have to reschedule.

Since my last post I have not undergone any further treatment with the exception of a month of Casodex in January 2021. Since then my PSA levels went down to as low as less than one and six months later are currently elevated to 4.27 as would be expected. However, I noticed a cessation of sciatica while on the Casodex.

I met a few weeks ago with the urologic oncologist (UO) who had done the surgery in 2016. Due to the expense of the Axumen scans I have had previously (all clear BTW) at $5K a scan I am entering a study my UO invited to participate in with Gallium 68/PSMA. However, I will have to get an MRI to qualify. Although the Ga/PSMA is a relatively new approach I have seen a few posts on YANA where a few men had this done several years ago.

I am still going to Houston Methodist for treatment. So the next few trips will include consulting with an oncologist my UO recommended, having the MRI and the Ga68/PSMA. The UO mentioned that the Ga68/PSMA tends to visualize mets to the aorta and scapula which might not be visible in the Axumen. Nonetheless the driving interest in this approach is the potential to use the results to guide stereotactic radiation or a trial using Lutetium 177

On the anecdotal side of things I recently ran across a paper that reported a one-patient case using capsaicin to lower PSA. It was a peer reveiwed paper and can be retrieved easily from the internet. This piqued my interest in using hot sauce! I will follow-up soon with the results of the above mentioned studies. Until then God Bless as we journey on.

This year has been pivotal. After being cleared by my insurance for PSMA PET scan I had the scan in August 2022. This of course is the new FDA approved radionuclide scan that is more effective and sensitive compared to AXUMEN etc. There were some lymph nodes that did appear in the scan, but not to a great extent. However because there were mutiple nodes the oncologist did not suggest following up with additional radiation, and did not really offer a plausible reason. We agreed to do Casodex for four months and follow with intermittent on and off phases to help prevent formation of repressor cells. So the oncologist did really weigh in on the pros and cons of follow-up radiation. When asked again he simply stated he didn't have enough information.

However, after consulting with the radiation oncologist who did the salvage radiation five year ago I found he was optimistic about pursuing additional treatment since the PSMA scan had shown nodules above the previous radiation field with no indicaiton of recurerrence there. He really did his homework and teased out the locations and selectivity of the mets. However, he stated the treatment would require 30 more sessions. I then consulted with the urologist who did the original diagnosis to seek a second opinion. I am asymtomatic at this time. Moreover, I had some concern about side effects. For example incontinence has increased since the radiation and surgery some five year ago. The good news from the PSMA was that there were no bone mets. However, an indication of nodules near the aorta, and pelvis. Also within the field of the colon and vertebrate. The urologist indicated I could probably wait on the decision to proceed with further radiaiton until Feburary to April 2023.

I have been taking intermittent Casodex in the meantime and that has kept the PSA down. It has some side effects but does not impact the libido per se. Testsoterone fluctuates while on Casodex. This is paradoxical since PSA goes down. I am alternating on four month and off 1-2 months. My PSA has not gone above 5, and goes down about one unit per month when on 50 mg of Casodex per day. There is some precedent intermittent antiandrogen in the literature as well. I am in an off phase now. There are some mood swings due to fluctuating testosterone but probably not to the extent one would encounter with lupron and the like.

I am also looking into surgery to address the incontinence. One thing I am finding in the area where I live is simply not many support groups. There was one group that surfaced before the pandemic but has not picked up speed again. Any suggestions? Will keep you all at prayer. Will check in again in a few months.

Since last updating I have continued with intermittent Casodex (on 3-4 months off 1 month). This approach is keeping the PSA levels between 0.5 and 2.0. The Casodex has some side effects but it is mover preferrable from my perspective tha some of the other antiandrogen approaches. However, it is the only antiandrogen I have tried. I decided not to pursue further radiation at this time. This year I have looked into onptions to address the incontinence. I am also experiencing a ventral hernia that could have arisen from the prostatectomy. This is not unusal, but there are considerations to weigh in on given past radiation and scar tissue from the past surgery. All considered I think things have gone well given my original diagnosis. I welcome any communications you might like to share as we continue on this journey.

Jay's e-mail address is: vedwards53 AT yahoo.com (replace "AT" with "@")