Hi,

After biopsy and diagnosis in June 2000, my Urologist suggested hormones and EBRT (External Beam Radiation Treatment) to start immediately as he considered the 4+3 = an aggressive cancer. I went to BGH in Boston and got 2nd opinion from Chief of Uro there, he said due to age, recent heart surgery and other issues, it would be best to do as my Uro proposed. He didn't consider me good candidate for surgery.

After much research and in particular reading the Dr. Lynes letter I chose Watchful Waiting and diet with exercise. Explained to my family I would prefer a shorter life without side effects and would still have options if cancer spread.

Started with diet heavy with antioxidants, and immune system boosters, low on fats and as SUGAR feeds cancer a minimum of that. I drink distilled water, green tea, V8, use small amounts of skimmed milk. In 2 months PSA dropped to 3.6 and October 4, 2001 was 1.4. It stayed below 2 until May 4, 2006 when it went to 2.64.

In Jan 06, I was switched by insurer from Lipitor to Zocor, I had a severe adverse reaction resulting in drug induced myopathy. There is NO treatment and only solution is to wait and hope it clears system with no lasting side effects. During this time you can't do ANYTHING, NO exercise at all as ANY activity creates additional CK levels that are the enzymes that destroy muscles !! I being VERY active became depressed and tended to seek comfort foods and I feel became a factor that cost me control. MY FAULT !!

It took me 20 months to get back to normal CK levels. During this time my PSA went to 3.3 and had doubled to 6.6 in May, 2008. New biopsy July 1, 2008 PSA 8.65 and on right side showed six of nine cores involved from 99 to 20% and PIN (prostatic intraepithelial neoplasia) present. Left side cores benign.

My Uro says now his turn and in last two weeks have had CAT scan(negative), bone scan( results pending) and a three month hormone shot, . Today July 22, 2008 had gold markers implanted and will have mapping session with oncologist on August 20, prior to 42 IMRT (Intensity Modulated Radiation Therapy) treatments and a final three month shot.

Currently back on diet…..to be continued we hope!!

Later:

Since last update have found bone scan to be negative ! 7/22/08 Had 3 gold fiduciary markers implanted, with no problems. Will have mapping session on 8/20/08 prior to start of 42 IMRT treatments.

I probably should have mentioned at start that I was diagnosed with bladder cancer in 1997. It started with bleeding and the urologist said there could be multiple causes. Found I had TCC (transitional cell carcinoma) with CIS (carcinoma in situ). I had one small tumor right at junction of urethra which he was most concerned about possibly migrating as well as danger of problems while removing same. He successfully removed several at various times in 1998 and '99. He said they would continue unless we undertook treatment and suggested BCG (Bacillus Calmette-Guerin) . I had BCG instilled 5 weekly sessions...due to excessive sloughing off took a week off then 2 final doses. I was fortunate that this solved problem and has been in remission since. AS bladder cancer is the most recurrent I am checked regularly.

Hi, Have just completed my 42nd radiation session and had a final 3 month Lupron shot. Oncologist says that prostate cancer is slow to grow and also slow to die. He expects little change in PSA for six months and then it could go up slightly before trending down. This process could take a year, radiation side effects should start to decline in 2 to 4 weeks and be close to normal in 3 to 4 months. Side effects from Lupron should continue for 6 months then start to decline.

While I had some rectal discomfort I avoided any loose bowels and had instead hard fragmented bms. Solved with daily Metamucil use. My biggest problem was urinary....cystitis like , a sudden need to void then having to wait for a painful flow to start. After initial start flow would shut down, then wait for recovery and continue same routine until urge had passed. This was manageable through the day and I found lessened with activity. Nights were another matter and I was up almost hourly , am hoping this will also stop.

Other than that no problems from IRMT, I ate as suggested a high protein and high calorie diet and kept active, walking daily and doing yard work, painting etc. Lupron side effects were minimal and primarily hot flashes, mostly at night. Will update in six months after my PSA is checked.

In light of recent interest in bladder cancer have decided to update again before my PSA gets checked. The end of my last Lupron shot is close at hand January 16, 2009. While side effects from my 1st shot were mostly hot flashes, I found that after the 2nd shot dizziness reared it's ugly head !! The spells were often and getting out of bed a slow process, fast movement and looking up would also trigger them. They lasted three months and seem to have ended, although it's only been three days now. Checking the web I found that it is in fact a VERY common side effect, but gets NO mention in manufacturers literature !!!

In light of newly released reports of bladder and colorectal cancers that could be caused by prostate radiation treatment have given me cause for concern. Having had bladder cancer prior to prostate I am VERY interested in how some one such as , I who have had it previously may be at greater risk ? Also worthy of note is the statin information that indicates statin drugs may in fact cause PSA readings to be lower. That got my immediate attention as my gradual PSA rise relates exactly with my cessation of taking Zocor, caused by a severe adverse reaction to statins resulting in Myopathy!! Just more food for thought.

My next appointment and PSA reading won't be until May.

Will update after that.

After six+ months wait saw Onco today for exam, DRE and result of PSA. Doc said all looked really good and PSA was < 0.1 and he would see me in six months!!!

Some hardness in right lobe, to be expected after radiation of original site. Hot flashes stopped about 2 weeks ago and just in last week have had three nights of getting up only once and one night not at all, a first in many years!!!

I wish similar results for all.

Hi,

October 8, 2009 Had my almost 6 month visit with Oncologist this week. PSA 0.12 and DRE showed no hardness or abnormalities. Poked and prodded and said all looked good to him. He knew I had a six month appointment with my Urologist next May and said he'd see me in a year. Sounds good to me!

Am currently staying very active, fishing, playing golf, doing yard work, walking. Happy with results so far!

Wish the same for all of you!

As mentioned previously I was having bowel problems after radiation. Oncologist said would settle down and now was not the time to poke around up there. That seemed to happen and all was going well until early December 2009. Movements were fragmented and frequently bleeding occurred.

In January had considerable bleeding and went to local clinic. Doctor there took blood and stool samples. Told me there was blood in stool and blood work showed no infection. Advised colonoscopy ASAP. Had same and several polyps were found and removed, some biopsied and were benign. Diagnosis came back as 'Chronic radiation induced proctitis'. GI Doc advised watching and if a continuing problem, laser surgery possible.

Since then things have calmed down and have problems perhaps every couple of weeks. No one mentioned this side effect, it occurs in up to 15% of those treated. [Some men who have had this problem report that it can be related to food and drink - especially red wine - and suggest noting any changes in diet that might be associated with changes in bowel movements.]

Next urologist visit in May...will update in June when I get my GOLD bar!!!

Best to all....THANKS again Terry for your devotion to the cause and your continuing good work !!

Hi,

Saw radiation oncologist for annual check. DRE showed no problems. Discussed my bleeding from radiation induced proctitis. Due to heart condition and placement of two stents, started taking Plavix in May. Having same symptoms a month later had cath to see if stents were still clear. Problem was found to be Atrial Fibrillation. Started taking Coumadin plus 81mg aspirin. Result of using all three thinners has been increased rectal bleeding. Now using pads daily after a couple episodes of diarrhea type bleeding.

Onc advised and primary care Doc agreed that considering my aversion to any further invasive procedures that I live with it until I stop having to take Plavix next May. Now that Coumadin is regulated I sometimes go 4 or 5 days without bleeding. Should it become more trouble both agreed best option would be Radio frequency ablation.

Thanks for your continuing good work!! Condolences to those suffering more serious issues.

My proctitis became worse, bleeding through pads and clothing and bedding more frequent. Kept records of EVERYTHING I ate and watched intake carefully for three months. Found occasional relief but couldn't identify diet as always the difference. Was about to pursue radio ablation when I saw a post on the Prostate Problems Mailing List (PPML) list re using Benefibre or a similar product.

Hesitant about making my diarrhea type bleeding worse because of taking aspirin, Plavix and coumadin daily, I started slowly. After a week or so noticed stools started forming and bleeding less, this continued for several weeks and bleeding an occasional thing. For past month have had NO bleeding at all and regular movements. Now use one and a half teaspoons a day and diet no longer a problem, I eat whatever I want, within reason due to medications involved.

Hope this helps someone who has had this problem.

Hi, Tried to update few months ago but was not successful, changes apparently making progess, thanks for all the work being done. It would be a shame to lose all the years of history. I recently read that IMRT has proven to be as effective as or even superior to many others including proton beam.

Appointment in May with URO showed no change, PSA of 0.11, Doc happy and said see you in a year! Sounded good to me !!

Appointment Oct 10, 2011 with my oncologist, PSA 0.10.He was pleased that my bleeding only an occasional thing now and and over in a day. Said after a DRE all appeared good to him.

Turning 84 next week and only up once a night now and happy with my choices, my URO often when giving initial DX uses my case as an example so patient can at least consider WW.

Best to all.

Hi, Last visit to Oncologist in October showed PSA undetectable and DRE indicated no hardness.

Proctitis much improved and bleeding virtually no problem other than some spotting perhaps once a month. Will see URO in June 2013. Best to all in the new year!!

Hi, Annual exam with oncologist showed no change PSA still less than 1. Still having occasional bleeding re radiation proctitis, very infrequent almost two months when had a one day episode two weeks ago. Best to all.

Hi, Really no change see my oncologist each fall and he continues to be pleased with results. I still have sporadic bleeding from the radiation induced proctitis. On my last visit in Oct 2014, he said if I wasn't taking coumadin (blood thinner) he felt the problem wouldn't be there. Good luck to all.

Last visit with Onco on Oct 15, 2015 he remarked that,"He couldn't say I was cured but reading still under 1 and it's been a long time!" Still know who and where I am, active and no complaints. Very occasional bleeding from Proctitis, now on Eliquis.

Wish everyone well ! Ernest Frank

[Sadly, we received word from his daughter Joyce that Ernest passed away from congestive heart failure.]