After initial diagnosis with biopsy Gleason Score of 7 I discussed treatment options with my urologist and primary care doctor. Decided on robotic surgery with a very well regarded and experienced local surgeon.
Since I wanted to get the best local surgeon possible I ended up waiting until March 25, 2009 for surgery. It went well, lymph nodes and margins negative, although the pathology report indicated that my cancer was actually a Gleason Score of 8.
It has been awhile since my initial entry and a lot has happened. My post-surgery PSA's at 3 and 6 months were both < .01. At 9 months it went up to .07. This got me pretty worried and I started to get serious about my diet. I had read quite a bit on the subject and felt that it could indeed slow the growth of tumors.
I started slow. Cut out red meat, eggs and most dairy. Added pomegranate juice, soy and green tea. Slowly worked more fruit, veggies and whole grains in. Found out that sugar can fuel prostate cancer and also cut out white potatoes, sugar in drinks, and desserts. Still can't give up alcohol. Although I have cut out beer, for the most part, and switched to wine.
Unfortunately, it didn't seem to help much. End of March 2010, 12 month PSA came in at 0.28. This really freaked me out. With my Gleason 8 organ confined tumor, a Biochemical recurrence 12 months after surgery with a 6 month PSA doubling time is a really bad sign.
Set up appointments to see my Uro, and two medical oncologists, one local and one at Dana Farber. Also worked harder on diet. Was getting ready to go vegan when I read Dr. Myers book on Hormone therapy and diet. I decided to switch to a Mediterranean diet, still cutting out sugar and adding green tea and soy. I also added supplements that he recommended. In addition to the multivitamin and selenium that I was already taking, I added vitamin D and E, lycopene, pomegranate extract, soy isoflavones and omega 3. I have lost 25 lbs from the initial rise in my PSA and I am down to 170, BMI of 24.
Uro and medical oncologists all recommended salvage radiation therapy with hormone treatments. Chance of success is less than 50% in my case. DF (Dana Farber) doctor said, only 30-40%, but you have to go for it.
I had a MRI and bone scan in advance of SRT (Salvage Radiation Therapy) and had my next big scare when it turned up a lesion on my lower spine. Because of my stats and location of lesion, both my Uro and radiation oncologist were pretty sure it was cancer. I went through two bad weeks before another MRI with gadolinium and CT scan showed that it was actually a hemangioma.
Radiation treatments are now back on. I saw a local radiation oncologist and one at DF, and decided to have treatments at DF. This was a difficult decision. I liked the local guy and treatment center was on my way to work. DF is about 90 mins away and I probably won't work while getting daily treatments (hopefully I can get ST disability). Locally there was little coordination between Uro, medical oncologist, and radiation oncologist. All decisions seemed to take longer and there was some disagreements. Quite often I felt that if I didn't push things they would just drag out. DF had a plan for my situation that I agree with and we ready to go.
I had a shot of Trelstar on May 25 (2 months after my PSA reading of .28 - this is the dragging out I talked about). Just prior to the shot I had a PSA reading of .50. Salvage radiation therapy to start end of July.
I set-up an appointment to see Dr Myer in Virginia in July. I am looking forward to this consultation.
Just prior to starting radiation treatments I had a consultation with Dr Myer in Virginia. One long day of travel from Connecticut, but well worth it.
Dr Myer generally agreed with my treatment plan, but tweaked it a little. Put me on ADT3 with HT limited to one year due to the fact that I am pre-diabetic. Increased the frequency of my blood tests and added several tests. Adjusted my diet and supplements. Diet to focus on veggies. Fruits to be limited.
I have gotten through seven radiation treatments to date and my biggest problem is travel. I haven't found a good way to get to Boston. Driving two hours each way doesn't work. Luckly I can take a train, but it's expensive. I am entering my third month of hormone therapy. Most bothersome side effect is the hot flashes, but they seem to be subsiding a bit. ED, well it's a given if the HT is effective. What worries me the most is the muscle loss.
The good news is that it is working. PSA tested 7 weeks after the beginning of treatment was < .01.
That's all for now. I will update again after SRT (Salvage Radiation Therapy) is completed.
I completed salvage radiation therapy yesterday, IMRT 38 sessions 68 Gy. It went very well, other than the daily commute to Boston. Only side effects occurred very late in treatment, sun burn type redness and irritation on butt as well as a little fatigue. Now I have to wait until I complete 8 more months of HT to see if I am cured or if the PCa is in remission. Guess I won't know which, I just want the PSA to remain < .01.
I am getting my PSA, testosterone and vit D levels tested every month now. PSA is less than .01, testosterone is down to a low enough level and I am working to get my vit D level up to 70-75 nl/mg. Currently I am at 49. I am fairing well on my low fat diet, not having added any weight while on HT. I will be starting back on supplements, I stopped all anti-oxidents while having radiation treatments. Current supplements are vit D3, omega 3, curcumin, pomegranate extract, soy ivoflavones, lycopene and resveratrol.
I feel like I am now doing all I can do for a cure or remission. Only time will tell.
I am now four months past SRT (Salvage Radiation Therapy) and seven months into ADT3 treatments. The good news is that my PSA is still coming in a < 0.01.
The bad news is that I continue to feel the adverse effects of hormone treatments. Hot flashes have tapered off, but I am now gaining weight. I've put on 12 lbs over the last 3 months. I guess some of that can be blamed on the holidays, but I am having a very difficult time trying to take off the weight. Also, muscle loss is pronounced and I am getting very chubby in the middle. I am still doing well on my diet and taking my supplements. Although I do find myself craving carbs.
My goal now is to get through the next 6 months with an undetectable PSA, and go off HT in May. Then hopefully I will be cured or have a long remission.
I have successfully completed 12 months of ADT3. Started with a Trelstar shot on May 25, 2010. I had my last three month Lupron shot on April 6, 2011 and stopped Casodex today, May 27, 2011.
By success I mean that PSA went to undetectable right after HT was started and remained undetectable through my last PSA test earlier this month. Now I continue with Avodart, diet, and supplements recommended by Dr Myer; pomegranate extract, Revesterol, curcummin, and Vitamin D. Hoping for a long remission if not a cure.
Recovery from ADT3 will take up to 6 months. I need to lose the 10 lbs that I gained on HT and build back muscle mass. Exercise will be very important and I will start a daily routine which will involve weight training and a lot of biking over the summer. I will continue with monthly PSA tests and will report back in a few months, hopefully with continued good news.
Well it has been six months and it's time for an update. Things are going very well. The 12 months of ADT3 seems to be working out well. My testosterone is up to 143 and my PSA is still undetectable. Couldn't ask for a better result.
I am still on the Mediterranean diet, and taking my supplements and Avodart. However, I am still suffering from some on the effects of HT that are due to my own inaction. Rather than lose the 10 lbs that I gained on HT, I have gained another 7-8 lbs. It is due completely to my inability to control my carb intake. Also, I have not regained the lost muscle. I have not put in the gym time to build it back up. I am lucky if I get a decent amount of exercise once a week. Something to work on over the spring.
I also should mention that my continence has diminished a bit after HT. It happened slowly. I was almost 100% continent at 6 months post surgery. Now 14 months post SRT, I am at maybe 90-95%. It is not a significant issue for me. Merely an annoyance.
Things are going very well for me. I am now 22 months post SRT and 12 months after the completion of 12 months of ADT3. PSA is undetectable and I am feeling well. I still take supplements and follow a Mediterranean diet. I am slipping more than I would like on diet and have gained some weight that I cannot seem to get off. I am also now getting the exercise that I need. Well something to work on over the summer months. Best wishes to all.
I am now about 19 months beyond the completion of HT. PSA is still undetectable and I am feeling well. So well that I tend to forget about prostate cancer for weeks at a time. T is still low at 389 but moving up slowing. I am getting more exercise and continue Mediterranean diet with supplements and avodart (Dr Myers treatment program). I am currently semi-retired, working only 2 days a week and plan to fully retire at the end of this year. Best wishes to all.
The last year has passed quickly and I continue to do well. I completed one year of ADT3 over 30 months ago and my PSA continues to be undetectable. I couldn't ask for a better result given my high Gleason score and quick recurrence after surgery. My oncologist believes that if I have any remaining cancer it is not aggressive. I continue to have the side effects that I previously noted, no improvement, and my T levels have actually dropped from a high post ADT of 389.
I am well and my life has been very busy over the last year. I took on a part time job, and my wife and I downsized our home. It's amazing how difficult it is moving out of a home you lived in for 25 years and raised to children into a home a lot smaller. My treatment has gone very well and my PSA remains undetectable. I often go for days/weeks at a time without thinking about cancer. I continue with diet and supplements, PSA checks every 3 months and my oncologist visits one a year. My only long term side effects from treatments are muscle loss, getting better, and dribbling after urinating. All in all it is a minor problem and I have no real complaints. I really feel very lucky and hope that the good times continue to roll.
It's been a year since my last update. I have my PSA tested every 90 days and it continues to be undetectable. I see my medical oncologist annually now and hope to cut out the annual visits after my next appointment in November. Although going 5 years after treatment without a recurrence gives me a lot of hope that I may have beat this thing, I still read stories and know men that have had recurrences of PSA/prostate cancer well after 5 years. I may never feel totally out of the woods, but a think less and less about prostate cancer and I am moving on with my life. My wife and I fully retired last year and are doing some traveling.
My medical oncologist had me start taking metaformin in addition to avodart at my last appointment. I also still take vitamin D3, pomegranate extract, and resveratrol daily. I maintain a Mediterranean diet without eggs, most dairy and red meat. I have switched from skim milk to almond milk and find that I like it more. I am eating more cheese and way too many carbs.
Best wishes to all.
It has now been almost six years since I came off of HT in June 2011. PSA remains undetectable. I still get tested every 3 months and will continue these tests. I have a mostly Mediterranean diet with very little red meat and I drink a lot of green tea without sugar. I continue to struggle with my weight, but now regularly go to a gym. I also continue Dr Myers PSA arrest program taking Avodart and the supplements that he suggests. However, Dr Myers is retiring this year and I am currently preparing to see a new Medical Oncologist. Hopefully I will never need one, but if I have a recurrence I want to have someone to go to right away that is familiar with my case.
All in all I am very happy and enjoying retirement.
Frank's e-mail address is: fazzinafc AT gmail.com (replace "AT" with "@")