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This member is a YANA Mentor This is his Country or State Flag

Jay Edwards lives in Louisiana, USA. He was 63 when he was diagnosed in December, 2015. His initial PSA was 40.00 ng/ml, his Gleason Score was 8, and he was staged T1c. His choice of treatment was Surgery (Robotic Laparoscopic Prostatectomy). Here is his story.

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.

UPDATED

January 2016

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.

UPDATED

April 2016

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.

UPDATED

June 2017

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.

UPDATED

June 2017

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.

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


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