In Fall 2015 my GP told me my PSA was 'a little high' and referred me to a specialist. Against common wisdom I didn't go right away, too busy, felt fine, doubted accuracy of the PSA, etc. A few months later I did get a rectal exam, and when a lump was detected, the biopsy results brought bad news.

After the shock and then the scans, then searching for the right medical team, I opted for prostate removal, done 11/11/16. That went as well as could be expected (had to go a 2nd week with the catheter, not at all fun). Dr. McGinniss was positive afterwards, saying the tissue analysis showed no activity outside the capsule, nothing in lymph nodes he removed, etc.

The next couple of months were mixed. The abdominal pain subsided, I was finally able to sit without pain, and the continence returned. And while the sexual function was still at bay due to ED, I was optimistic it would return at some point.

Unfortunately, the 3-month PSA test showed I'm in the small percentage who still show a PSA reading (0.154) after completing the robotic laparoscopic prostatectomy. Have an appointment with Dr. McGinniss next week to discuss my options. Will post again after that consultation.

Thanks to everyone who's posted here, it's been truly helpful in dealing with these health issues.

On 2/15/17 I had a follow-up consultation with Dr. McGinniss, who'd performed my prostatectomy on 11/11/16. The 3-month post-op PSA (taken on 2/1/17) was a disappointing .15. A second PSA was taken 2 weeks later and had risen to .21. Doctor advised waiting for another PSA check in 3 months, and depending on the PSA level may opt to administer prostate bed radiation therapy along with hormone therapy. While Dr. McGinniss is an excellent surgeon and otherwise knowledgeable, I'm researching possible candidates for a second opinion, possibly someone with more of an oncological background and who may be familiar with nutrition-based therapies.

Meantime I've gone onto a total plant-based diet, as well as taking daily anti-cancer nutritional supplements such as licorice root powder, milled flax seed, black raspberries, fenugreek powder, and apple peel. I stopped taking daily multi-vitamins which I didn't tolerate well and produced anxiety. Now I feel very good, have lots of energy, and despite the ED have been experiencing libidinal urges. I'm maintaining a strong positive outlook despite the adverse PSA readings. I think it's important to manage stress and as much as possible maintain good physical condition (I currently work out 5-6 times a week) in order to give oneself the best advantage in dealing with the disease.

Thanks to everyone who's posted on yananow.org, as it has been very helpful for me. I admire the courage everyone brings to the board. I hope my posts will be helpful to others as well.

My former Urologist/Surgeon Dr. McGinnis referred me to a Radiation Oncology group at the Bodine Center of Jefferson Health in Philadelphia. Met with that team and EBRT was suggested, along with ADT. I received a 3-month Lupron injection along with daily oral Casodex starting May 12 ('17). I haven't had any tests since starting it, so I don't know if it's keeping my PSA in check. The .3 reading was from late April ('17), so it's likely somewhat higher by now. However, I've had no adverse side effects from the ADT so far, and actually feel better on it (less anxious, sleeping much better). I'm waiting to hear from the Jefferson team on when/if I'm to start salvage EBRT. Maintaining a strict diet/exercise regimen, which at the least is helping my state of mind and sense of well-being. Best of luck and health to everyone.

After the first 3 months on Lupron (Androgen deprivation therapy), my PSA went to 0, or undetectable, and has remained there for a year, although I'm told it likely will eventually quit being effective. Side effects are minimal to none, maybe a little insomnia, and a little weakness, not too bad. My oncologist urges me to have salvage radiation, but I refused, not wanting to make things worse. I have fairly good bladder control, a little leaking but not too bad, and don't want to aggravate that. I'm obsessive about diet, vegan, lots of broccoli, pomegranate, green tea, turmeric, things like that. Problem is, I don't know if it's the Lupron keeping my PSA down, or if the healthy regimen is working, probably a little of both. But I feel good and am active, despite the doctors telling me I have aggressive prostate cancer (Gleason score around 9, I think).

Good luck everyone.

With my disease being of the more aggressive type (i.e., high gleason scores) I was put on hormone therapy - quarterly Lupron shots. Standard protocol was to administer Zytiga/Prednisone only when the Lupron failed to work. According to my oncologist, it was determined that outcomes are better if I also start on Zytiga, in pill form, along with Prednisone, while my PSA is 0, rather than waiting for it to rise, indicating the failure of the Lupron. I've been taking Zytiga (brand name for Abiraterone) now for about 10 days, and aside from the ED, which I already had due to the Lupron, haven't experienced any major side effect issues. Will update if adverse effects to crop up.

Research has shown this will add 'about two years' to my statistical survival time; however, I'm always optimistic that my nutritional regimen will take me beyond that. (See website www.nutritionfacts.org)

Happy Holidays to all, best wishes for a healthy New Year.

After much consideration, I've decided to undergo salvage radiation. As my history states, I did have a prostatectomy but that didn't remove all the cancer, so I've decided to try the next step of salvage radiation therapy. I'd put it off, but decided it was time. I have to thank another forum member, Jon R., who shared his experience with the RT and made a case for trying it. I'm going to include the email exchange here, as I very much appreciate that anyone would care enough to weigh in on it. There were other factors in my decision, but Jon's encouragement made it easier.

Here's a part of Jon's original email to me:

Bill; Jon R. here, a fellow cancer victim. I try very hard to not give advice to guys going through this and am trying hard not to here but I do wish to advance my opinion for you to weigh. I read your story with interest as we all do. I know you are on the drugs but have refused the radiation so far. Be aware that the drugs can hide the extent of cancer and make it difficult to judge just what stage they are at. You already know the drugs are a stop gap measure and will likely fail at some point in the future. You have already taken an aggressive step to rid yourself of this menace. My opinion only here is that as long as one chooses aggressive treatment up front and you have a second chance at aggressive treatment, one should go for it and not stall while hoping the cancer will just go away. Radiation is not to be taken lightly but if there is still some remaining cancer left after the surgery, it is your last chance to really get rid of this disease.

This forum has been so valuable to me, as I'm sure it has been for many others. I only hope I can help others as I've been helped. Thank you Jon!

As noted earlier, I finally decided to undergo salvage radiation therapy as a last attempt to rid myself of the cancer that remained after surgery. This was a 40-day regimen and was completed on April 1 without major issues (fatigue, some blood in stool). Now a month out, all is back to normal, and I'm even starting to feel the 'urges' again. In two months I'll be back on the PSA-go-round to see if it worked. If not, it's back on hormone therapy for as long as it will suppress the disease. For now, I'm grateful for what I have, family and friends, sports, good food, a sound mind. My wife will disagree with that last one, but I'm sticking to my story!

Thanks again to Jon R., who took the time to read my boring notes and to encourage me toward the radiation treatments. There's some comfort in knowing I've done everything I could to beat the disease, so no regrets.

Best wishes to all who courageously battle this ornery blight.

My apologies for not updating my story since May of 2019. But, as the Dude says, "I've got information man! Certain things have come to light!"

After my unsuccessful prostatectomy, and during my 18 months on ADT, my marriage of 28 years began to fall apart. I went off that in March of 2019 and started on a 40-day radiotherapy regimen, all the while struggling to salvage my marriage. The RT oncologist assured me the salvage radiation was successful, and not even to check PSA until end of the year. Meantime I moved out of my home and was miserable, lonely and afraid. Divorce proceedings began in May.

In July I attended my 50th HS reunion in Omaha, NE, met a former classmate Jan, a compassionate, beautiful and spiritual woman savvy about nutrition. I found work in Omaha and moved there in October 2019. Having Jan in my life did wonders for my outlook. However, I soon learned my PSA it had risen to 5! So much for the assurances about the success of the salvage RT.

I found a top-notch oncologist in Omaha, Dr. Luke Nordquist, who offered the option of taking Xtandi, which prevents the cancer cells from bonding with the testosterone, which they need to survive. It has served me well for nearly three years (PSA undetectable), and doesn't have the adverse side effects of ADT, which works by significantly lowering testosterone. These past few years have been a gift, to enjoy life with this wonderful woman and to develop a positive mindset.

There are no guarantees, but at this point I welcome and enjoy each day. Probably how I should have always approached life. And who knows what tomorrow may bring? I'm very grateful, and while it may sound strange, it seems like the healing has begun. Not necessarily 'remission', but at least keeping it at bay to enjoy a good life for that much longer.

Best of luck to all.

In November 2023, the Xtandi stopped working and my PSA jumped to 9. I was switched to ADT Eligard, but after 2 months PSA still rising. A PET scan showed increased cancer activity in some lymph nodes in the pelvic area. Abiraterone was prescribed to further limit testosterone production. Waiting to see if this will better fend off the cancer growth. I attribute some of this to the stress of caring for my fiancee who suffered from prostate cancer for several months and died last week. Whatever my disease does, it'll be alright, whether I can join her sooner or later, it's all fine.

Bill's e-mail address is: wbpettit5 AT gmail.com (replace "AT" with "@")