Men share their stories of prostate cancer diagnosis and treatment.For men facing prostate cancer, some of the best information about treatment options and side effects doesn’t come from doctors, but from other men who have faced the disease.
The latest “Patient Voices” feature from my colleague Karen Barrow focuses on men with prostate cancer. Listen to the stories of men diagnosed with prostate cancer and their experiences making decisions about treatment and coping with side effects.
To hear more from men with prostate cancer, you may also want to check out my earlier post called “Sex After Prostate Surgery” and the more than 200 comments from readers.
Click here to listen to “Patient Voices,” and post your comments below.
Healthy living doesn't happen at the doctor's office. The road to better health is paved with the small decisions we make every day. It's about the choices we make when we buy groceries, drive our cars and hang out with our kids. Join columnist Tara Parker-Pope as she sifts through medical research and expert opinions for practical advice to help readers take control of their health and live well every day. You can reach Ms. Parker-Pope at 
The easiest and most pleasurable way to eat well is to cook. Recipes for Health offers recipes with an eye towards empowering you to cook healthy meals every day. 
From 1 to 25 of 39 Comments
“For men facing prostate cancer, some of the best information about treatment options and side effects doesn’t come from doctors, but from other men who have faced the disease.”
TPP, I thought you were coming along, but you still don’t get it. Medical care is not the same as trying a new dishwashing soap, where you consult your friends.
Anecdotal stories, even from those who have gone through prostate cancer treatment, are no substitute for clinical studies. No two cases are alike, so carefully controlled trials are necessary to establish side effect frequency, and outcomes.
This type of post is a big blow to our education of the general public. We should be encouraging patient decision-making based on scientific data, not on personal anecdote.
— jackFROM TPP — Who can better tell a man what to expect than a man who has been through it himself? Many urologists and prostate cancer specialists encourage their patients to talk to other patients. I know one who even schedules and hosts the meetings himself, so his patients can learn from each other. And as I’m sure you are aware, right now there is no best recommendation for how men should proceed. The Agency for Healthcare Research and Quality has said there is not enough data to advise men on their best options for prostate cancer treatment. SO they are really on their own, and the best they can hope for is to talk to each other, talk to their doctors, think about their own priorities and make a decision with little science to guide them.
Had a RRLP done 25 January and in the run up had contact with a “support group” e-mail list provided by my surgeon in central CT.
About two-thirds of those I contacted responded to my lengthy list of questions aminly about post-op sex and then incontinence. Many in great detail.
The responses were a big help regarding our choice of surgeon and about what to expect. I agree with earlier bloggers that physicians probably tend to the optimistic regarding function down there.
After 5 months I am reasonably continent (except when doing ophysical activity). That said, I am still more comfortable at this point with a guard (about 1 per day).
I am bound and determined to use it so as to not lose it. On Viagra therapy and using an electro-stimiulator called “Slightest Touch”. No consistant impact yet. Erections are still rare but I have had one very good one and one OK for penetration, but we find other ways to amuse ourselves. My wife is totally committed so that is great. I am lucky!
One point of interest is that I have run into a number of relatives, friends, acquaintances who know of men just diagnosed, etc.. I am generally very up front and more than willing but not one has ever called or even e-mailed.
I think there is a big time male-ness humiliation factor here for many. Me, I wanted to know everything I could before that robot cut my b@#$s off!
Dirk
Dirk
— DirkI hope people will listen to the last interview first, because “expectant management” may be the best course of action for many men. As Gilbert Welch writes in “Should I Be Tested for Cancer?”, most of the million or so “extra” cases of prostate cancer that have been discovered through PSA screening “represent nothing more than pseudodisease: disease that would never progress far enough to cause symptoms — or flat-out would never progress at all.” That’s why the number of cases keeps going up, but not the number of deaths.
Similarly, “Dr. Peter Scardino’s Prostate Book” says, “Very tiny cancers, which we refer to as indolent, might never cause any problems, especially in older men. The same is true for small, localized tumors with favorable characteristics (Gleason 6, PSA 10).
— Jeremy AtkinsI am 61 yrs old.
The objective of my prostate surgery 4+ yrs ago was to address and hopefully eliminate the spread of the cancer. I had a radical prostatectomy. (I was told because of the stage of development of the cancer this was the only option) The post surgery biopsy indicated we got it just in time as it was about to spread through the sheathing. My cancer was eliminated and has not returned so it was a complete success.
I avoided complete incontinence but I am not what I used to be. My ability to control urination is OK but when I have to go I have to go.
I am impotent but have full sensation which allows stimulation. I had absolutely no problem prior to the surgery. I am not in a “relationship” and have found this condition to be unsettling to certain women. I don’t know if it scares them but it certainly gives me pause and I do not look forward to that initial discussion of ” Oh, by the way….” I am old enough and comfortable enough in my skin so I do not feel less of a man, but do I miss it?….absolutely
To any and all facing the news of the cancer, remember what is important and let the side effects take care of themselves since there is nothing you can do about them any way.
— JohnI was diagnosed with prostate cancer last year — at the age of 46yrs. After much review of the treatment options (none of which were appealing) I decided I needed to go the route of surgery (the cancer seemed to be advancing quickly). I had my prostate removed in November, 2007 via robotic surgery. The surgery, the first I’ve ever had, was not fun and having a catheter for a week at home was awful. I have to say, however, that I recovered quickly.
I never suffered incontinence, just a bit of dribbling for the first two weeks. Since then, I’ve been fine.
Being young and sexually active, I was privately devastated by the loss of erection. However, these too have returned. Erections occur, but not like they did before. The cialis/viagra works somewhat. My doctor gave me self injectible medication that works phenomenally well — administering it is creepy. I miss the ejaculation (can I say that here?) and don’t like having to schedule sex around medication — but otherwise the sensation is as good as ever.
— JamesI really don’t feel like I’m less of a man or anything like that and I’m very grateful we caught it and the matter is resolved!
The absolute worst moment in my life was when the Dr said “Your results are in and it’s Prostate Cancer”. Luckily I had been talking to a friend that had been through the robot surgery already. His advice was to check out Proton Beam Therapy before I did anything else. He then had a fellow call me and talk to me about his experience with the Proton Therapy. That guy loaned me a book entitled “You Can Beat Prostate Cancer and you don’t need surgery to do it” written by Robert J. Marckini. I then contacted Mr Marckini and he sent me a list of 30+ people that would talk to me about this. Some of them have been through both Surgery and Proton treatment, in that order. Having talked with several of these folks I think it will be a cold day in a very hot place before any Dr will be cutting me open, robot or not. One of the things that several men said was that they came out of this surgery in the best physical condition they had been in for years and there seem to few if any side effects. I’m currently working on getting accepted at one of the places that provides this service.
— Joe SpikerJoe
I had the radical surgery four years a go at age 62. Going in, my PSA was showing a high 23. About 4 months after surgery my PSA was increasing again so I had about 4 months of daily radiation. By biggest problem at that time was the severe damage that the radiation had done just inside my rectum. Defecation was absolute misery and no traditional pain medication helped much. My GP suggested Lyrica and that drug was a big help in getting me through the year and a half of daily severe pain.
Now, 4 years later, my PSA has shot up again. It doubled, at one point, in a three week period. So my doctor had me get a PET scan which showed no metastases. I’m now on ADT (Androse Deprivation Therapy) which involves a shot every 4 months. The PSA is undetectable. Sex, however, is something I used to do. I have utterly lost interest in sex. I wonder if that is typical for patients with similar experience?
— Gerry M. PayneI am a gay man, age 61, who had a laparoscopic prostatectomy in Dec 2006, at age 60. To date, my blood tests show no recurrence of cancer. I am continent, but have had no erections since the surgery. I’ve tried Viagra, Levitra and Cialis, with no positive effect. (Very bad side effects with the Cialis.) I had surgery at the Massachusetts General Hospital, in Boston, one of the best in the world. I have attended, intermittently, a support group, both before and after the surgery. As a gay man, I find the support group has neglected the subject of sex, to a large degree. I suspect this is because most of the men attending are straight, and therefore I have felt that this particular support group is not addressing the subject of sex and sexual function, which is important to me.
Having been sexually active before the surgery, I miss having sex now. On the other hand, I am extremely grateful to be free of cancer, and to be otherwise healthy. I am mindful of my good fortune in other ways, having had a full and fortunate life despite the early deaths of my parents and several close friends who died of AIDS. As an alcoholic in recovery for 10 years, I also understand that it is necessary to make adjustments in life which sometimes entail the loss of behaviors we once enjoyed. While I hope someday to regain more sexual function, I am also aware that may not happen. So I am prepared to live, and enjoy, my life accordingly.
I don’t know if Boston is a large enough city to have a critical mass of gay men who have had prostate cancer and are willing to participate in a support group, but I would be very glad if that were the case.
My strongest wishes to all men who have this illness. My experience has been that a positive attitude is extremely helpful.
Nat Butler
— Nat ButlerRe: James’ week with a catheter, I had 7 weeks of radiation followed by brachytherapy. Despite the initial Foley catheter and some increased ‘flow’ medications, my flow did not return. Faced with a planned summer in England including closing down and selling a vacation home there, my urologist begged me several times to let him teach me how to use a self-administered catheter.
— BobFinally, I consented and am very glad I did. My MD had an informed hunch that within 4 months the flow would suddenly return - and guess what - it did. In the meantime I mention all of this because others may be facing the same prospect and I strongly encourage it. I even upped the MD one by discovering lubricated throwaway antiseptic catheters which were a lifesaver for me. Very antiseptic and easy to use. One month after the bradchytherapy we boarded a jet for the UK - regrettably I had had a beer at the airport and once we were airborne and reached altitutde, my bladder was ready to burst. I took my handy dandy kit to the rest room and voila - I thought I was going to blow the side out of the plane. When I returned to my seat my loving and incredibly patient wife said ‘Welcome to the Mile High Catheter Club’. Bottom line, so to speak - check out the catheters I’m talking about if you are faced with my scenario. I won’t mention brand names but there is one which has the corner on the market and its what I used.
Well first-what worked for me may not work for you.
So get educated. Word of warning about cancer forums-they are educational-but are also depressing. Take a walk, watch a movie etc. etc.
The story thus far-
In November 2006, visiting my father during Thanksgiving my father was diagnosed with Prostate Cancer (“Rod you better sit down I got to tell you something…”). His Urologist at the VA had felt a nodule during my father’s rectal exam. But his PSA was normal. My father and I argued (Me: “Dad do you HEAR ME!” GET IT CUT OUT!. Dad: NO! I’m not going to live like that….). Long story short he visited the Urologist who referred him to an Oncologist (So we sat down with my Father and that when I learned of the Brachytherapy treatment. My Father ultimately when for-PERMANENT seed with high dose radiation). I get a physical every year-my father lectured me about the procedure that I always had (digital rectal exam) “Yadadadada yeah Dad I always have….I know….”
I flew back home in Hawaii.
My PSA was a high 9 something or other (doing this forum post off the top of my head). Before the urologist could even say he recommended a biopsy-I asked for one.
Week later I got a biopsy (no pain-took all of 5 minute if that).
3 days after that; results 3 out of the 12 sectors taken in the biopsy had cancer tissue.
T1c. No nodule could be felt. Gleason 3+4 (as I recall).
So a Father 83 and Son 54 are facing the Big “C”
Getting the diagnosis was NOT as hard to take as I thought-my PSA had been climbing the past 2 years. I don’t eat much meat or high fat foods. Stayed in shape, swim (I live in Hawaii).
One time I even completed the Alacatraz Swim. So may be it’s my genes. My Father is black –my late mother was white (she died of Pancreatic Cancer-I held when she died).
So I don’t fit in those nice neat categories used on high risk Prostate Cancer categories everyone always presents.
I got educated on Prostate Cancer.
Thank God for the Internet.
There is so much info- after awhile you have to step back.
No strangely enough it wasn’t the diagnosis The real hell I went through was what I was going to select for TREATMENT. No longer married and with no children I didn’t have any family pressure or dynamics involved in whatever choice I made. But if you have to face family dynamics like that –remember- YOU are the one that live with whatever you choose. Not the wife and children, brothers and sisters, fathers and mothers.
In the end I went with PERMANENT seed radiation. (No difference in cure rates as compared to TEMPORARY seeding)
I did not want to be cut open and risk infection (that happened to a friend of mine), I did not want incontinence [leaking urine] when I laugh {I don’t want to wear diapers}. I wanted some form of sex life and sexual function. Oh Baby -the IRON of my situation.
Getting a diagnosis of any life threatening affliction is come- as -you –are-party.
You have the familiar with death (I held my mother when I breathed her last; I was in a vehicle accident where I didn’t get a scratch. But the person next to me had the resuscitator turned off the next day {The shrieking and wailing in the waiting room when the doctor comes to ask permission to turn off life support…}, lost a co-worker at Oklahoma City {life snatched away while sitting at his desk}. You have to take something from the high peaks and low valleys in your life. Because one day-
It’s a come as you are party.
1. Get educated on Prostate Cancer and the various treatments.
Talk to oncologists and urologists (NOTE: They are use to the question:” What would you do if you got a diagnosis…” heh -I bet they would be just as scared as all of us and maybe not as sure on the treatment they had recommended to other).
2. Get in physical shape for whatever treatment you select. Prepare like the upcoming radiation or cutting operation in an upcoming Prize fight or Olympic event. Your recovery is faster.
3. REACH OUT AND TALK TO WOMEN about cancer treatment ESPECIALLY one that had treatment (breast, ovarian etc.). Women talk health issues. They are great on decision making and putting things in perspective. Most men are pretty much hopeless (unless they have battled cancer or some life threatening affliction.). In fact I can detect the terror in men’s eyes when I tell them about my Prostate Cancer. One actually backed away a bit.
4. Do something! Cancer is not fine wine-it does not get better with age.
Watchful waiting. heh What am I waiting for? My PSA to get higher? A higher Gleason score?
5. Make a folder that holds all your paperwork , prostate treatment info receipts etc…
(Ironic I have no hard numbers in this post on my Prostate Cancer. I no longer carry the folder around after my Brachytherapy in June 2007.
6. Maybe cutting rather then the radiation (I call the ‘death ray’) is the answer because of the stage of the cancer. But weigh it all and then step back and look at the forest after looking at the trees. Take a long walk and think from time to time.
7. Urologist do recommend cutting it out a ‘durable treatment’. Some believe this but it is pedaled also to make money for the Urologist.
8. Feel sorry for yourself a liitle bit (tears are permitted) and then GET OVER IT.
I’m just one voice.
Cured? My PSA is low now a year after my treatment. Zero something or other. I still have an erection - I ejaculate. But hey I’m 54 so I have to allow for age.
After the my temporary seed Brachytherapy the Hytrin I took for awhile (to keep the irradiated prostate srunk so I could urinate did leave me with less energy. But that lack of energy went away after 5-6 months.) My Father and I always compared notes and laughed about the frequent trips to the bathroom (10 times in one night in the early stages of irradiation).
My Father-he had his PSA taken twice since his treatment April 2007 and its zero something or other. [I’m doing this post from memory]. Whole time after the diagnosis and after Brachytherapy treatment he still gambled at the casinos and golfed. He enjoyed his life. He LIVES his life.
My post isn’t about how I treated my cancer. Just my outlook.
I’m always looking over your shoulder. It’s never the same afterward a cancer diagnosis and treatment. You best get your mind around that.
And I’m as paying $4.26 a gallon gas, [taking the bus now to work], struggling with a bathroom renovation, revisiting Rome, Italy again in August after 2 years (2 week vacation, one carry-on bag, I’m not paying for any airline pillow & screw the high Euro I’m still going.)
After 54 years-It’s a come as you are party.
Excuse grammer and spelling errors.
Good luck on your journey.
— RodJack:
I hope (but doubt) that the “clinical trials” you refer to include those that compare invasive treatment with watchful waiting - and which indicate to me that, unless one is obsessed with longevity, the cure may be worse than the disease.
I was fortunate to have have had 3 false negative biopsies before I was finally diagnosed on the fourth. At the time of the first test, at age 63, I was so naive that, if I had been correctly diagnosed, I probably would have accepted the subsequent recommendations of 3 doctors for aggessive and invasive treatment. Instead, the scare motivated me to do my homework so that when I was finally diagnosed I was able to make the choice for watchful waiting. I am now 79, had one year of intermittent hormone therapy 2 years ago and feel fine with no urinary problems or other symptoms. (Sex? - don’t ask. I’m 79.) But this is just another “anecdotal story,” not to be taken seriously.
AS for “our education of the general public” - whaddya mean “our”, paleface?
— skepticThank you for publishing these articles. As someone with prostate cancer, I find it refreshing that I’m seeing and hearing a wide variety of experiences from people with completely different perspectives.
I’m a 63YO male with the libido of a 30YO and finding out that I had prostate cancer completely devastated me. After a few days of crying and feeling sorry for myself, I realized that I better start making a decision on what to actually do about it.
My Urologist gave me the usual options..watchful waiting, brachytherapy(radioactive seeds), surgery(radical prostitectomy and the last option, several forms of radiation including IMRT and Proton Radiation.
Since my PSA was over 9 and my prostate turned out to be 5 times normal size like 128gms-norm is 25gms the first 3 options were ruled out…no watchful waiting, no brachytherapy(radioactive seeds) since it would take too much radiation and because of the size of he prostate, surgery(radical prostitectomy could leave my permanently incontinent as all of that weight sitting on my bladder directly once the prostate was gone.
I asked my doctor in a quite direct manner, what he would do in my position. He hesitated briefly and said “probably Loma Linda”.
After getting the full details on the Proton Radiation therapy at Loma Linda, I decided to make an appointment immediately.
Unfortunately, I wasn’t the only one who had that bright idea and I faced a 2 months wait just to get an interview. I decided it was worth it and I chanced it.
With a Gleason of 6 and a PSA of 9.2 my doctor and I agree that waiting that long would probably be okay. However, when I found out that actually getting the treatment would take an additional month or longer the stakes got exponentially higher.
My doctor told me that I simply could not wait that long! He suggested that he schedule me for IMRT at the local hospital. I was so disappointed as I had talked with friends and other people who had been thru the treatment at Loma Linda and they raved.
Miraculously, 2 days after my doctor told me I would have to forgo Loma Linda, I got a call and the nurse at Loma Linda said they had a cancellation and would I be interested in coming in early. I jumped at the opportunity and with one weeks notice, I moved 3000 miles to Loma Linda California for the required 2.5 month period of 45 proton radiation treatments.
I took a townhouse and set up my business there. I then got treated daily,except for weekends and holidays at what I feel was one of the most amazing facilities of its kind…Loma Linda University Medical Center.
Sadly, I spent my birthday, Thanksgiving, Christmas and New Years 2008 commuting from my townhouse to the hospital for the proton radation treatments.
It was lucky I could go to LLUMC early because by the time I actually started the proton treatment, my psa was at 10.2.
It’s been about 4.5 months since I completed the treatment and my first PSA test since I finished was 1.96. That is a precipitous drop from 10.2.
I have had absolutely zero problems with either getting erections or ejaculating with the exception that post treatment I no longer can fill up a tea cup with the fluid. I have less ejaculate but compared to many other prostate patients who’ve had a radical prostectomy, I am pretty much 100% good to go.
One side effect I am experiencing right now is some rectal bleeding but this is a pretty commonplace side effect of any radiation. I’ll be going in for a colonoscopy shortly and the doctor will use a laser type procedure called Argon Plasma Coagulation to eliminate the bleeding.
I would recommend Loma Linda University Medical Center to anyone who had prostate cancer or actually any cancer at all. I can’t imagine being at a better facility where the medical teams from the doctors to the radiological techs and nurses care so much about what they are doing.
Their motto: “To Make Man Whole” is a brilliant and humanistic approach to one of the most hideous diseases on the planet.
The only downside of Loma Linda is that because of the quality and effectiveness of the treatment, getting into the program is problematic right now. There’s just too many prostate and other cancer patients and simply not enough resources to handle them. Hopefully, that will improve.
I now tell all my my male friends.. Make sure and get your PSA tests early..start at 45 if you have any history of cancer in your family. Early detection always will give you the best chance for survival. I’m hoping I got it early enough!
— David TalismanMy PSA was in the mid to high 3s for several years before my new MD found a nodule in 1/07 (age 64) when my PSA was 4.1. A biopsy revealed 9 of 13 positive cores and a 6 Gleason score (3+3). The initial urologist tried to sell me an open prostatectomy.
— Tom in CaliforniaI wanted a second opinion because the open surgery seemed, well, crude. I also wanted a high volume shop and went to a local university’s Comprehensive Cancer Center and was examined by a very experienced (250+ procedures) laprascopic surgeon; he also mentioned radiation and brachytherapy. Meanwhile I’d been researching the PCa topic full time. I was initially favorable toward the laprascopic surgery but the urinary incontinence risk of any surgery put me off more than possibly sexual disfunction. One consideration was that I was a “high risk” patient due to the high percentage of cancer despite a low (4.1) PSA. I was concerned that the PCa may have escaped the prostate capsule. In that event I’d need radiation after the surgery so I’d have the surgery risks plus radiation. My approach was to undertake the maximum treatment now so, later, there would be no looking back with the thought “if only I’d done …”.
The university’s Comprehensive Cancer Center offered me a three phase treatment: hormone therapy followed by IMRT radiation followed by a Brachy implant. The Lupron and Casodex gave me some “hot flashes” but were otherwise benign. Then I had 25 sessions of IMRT external beam radiation with a bit of whole pelvic radiation to catch the lymph nodes for 45 Gy total. Then at the end of August ‘07 I received an implant of 58 I-125 “seeds” for 108 Gy. (No, I don’t glow in the dark!)
So at 6/08 I can say there was no pain from any of these treatments, by 1/08 my urination was as it was before the PCa treatment (2x a night, no incontinance) and sex is functional but dry. My cost was $5,500 and Blue Cross’s about $35,000.
I’d choose this treatment again - for me - as I was convinced that this was the best treatment for my PCa for the reasons above and my life style priorities. Yes my prostate is still there, now hopefully with no tumors but one never knows for sure despite a 1.5 PSA. In ten years I’ll know but I’m in limbo until then. Actually, I don’t much think about PCa anymore, except for the semiannual PSA test. I’m getting on with my life and hope this helps one of you readers to frame your problem.
I have had the honour of reading about a disease that is less talked about in our society and it is very educative. keep up with the spirit.
— FrancisGleason 3+4, 50% of 12 cores with up to 95% cancer, PSA of 4.5 in Sept 2005. I got 8 opinions and did a lot research before deciding upon IMRT plus brachytherapy. The best source of objective information I found was on http://www.prostate-help.org/. Remember most physicians have a bias for the treatment that they provide.
To date, I have an immeasurable PSA but with radiation know that you’re not cured until you have a very low reading for at least 10 years.
I had some bowel issues that were helped a great deal with some treatment during a colonoscopy and then a sigmoidoscopy a few months later. I urniate a lot 12-15x a day and am on both flomax and avodart. My urologist thinks there is too much risk in surgery after radiation to resolve urinary issues that are not very troublesome.
I’ve had no problems with erections although after my treatment ejacualtion was a bit painful. However, my desire for sex has dimished which might be related to being age 60 as well.
I exercised throughout my treatment and recently dropped about 20 pounds. There seems to be some evidence that being thin and doing hard aerobic exercise favorabley affects prostate cancer mortality.
What I’ve learned is that everyone’s journey is different. You have to chart your own path, but I believe it’s wise to get input from both the scientifc studies that have been completed as well as those who have traveled down a similar path.
— John CottonDiagnosed in 2000 at age 63. Decidedly lucky in early detection (20 years since last my annual physical; since then annual = once a year). Did lots of research on treatment options and got multiple opinions. I was a good candidate for seed therapy - which was performed at the end of January 2001, three month after I was diagnosed. Six months later, 7/07, I completed a 540 mile, four day, team triathlon with my son and brother (day 1 - 220 mile bike, day 2 - ditto #1, day 3 - 50 mile run, day 4 - 50 mile canoe). The six months of ever increasing vigorous training averaging 2+ hours a day to prepare for this event (I had done shorter triathlons before the prostate incident) was my way of getting mind mind off the negatives and focused on something positive. My *message* is that recovery is as much a state of mind as it is physical. Get over the initial (and natural) shock - “Woe is me” - and focus on making your body better than it was before. There’s more to being a cancer survivor than simply surviving.
— EdI was diagnosed Fall of 1998 - PSA 70, Gleeson 9. And it had spread to the bone L1. Told no operatation and no radiation as it was “too late”. Used Lupron and fultamide and drove the PSA down to 0. Then on to intermittent hormone blockade until now. Time off blockade now down to a couple of months. Overtime the hormone trateatment takes alot out of you but I am alive. Tried HIFU in 06 which got me off the blockade for 14 months. But HIFU closed my uretha and I needed several catherizations to keep me open and it remains a problem. HIFU better for smaller cancers than my case. Observations: only one chemo drug approved during my ten years. My doc tells me it works for awhile and then it does not work just like hormone therapy. Two theraputic vaccines have been out there in clinical trials during my ten years and they still remain “under study”. Other potential products during my time have all failed. You can find ineptness in all corners. The FDA and the pharma companies all have major shortcomings that have nothing to do with the difficulty of solving a science based problem. When you search the internet you find paper after paper writen about some new bit of information about prostate cancer. The NIH pours money into what is called “investigator initiated research” The problem with this approach is that it just does not result in any progress but keeps a lot people employed. In contrast Dr Salk conducted “directed research” where he had unrestricted resources (no government money) whereby he could bring in the expertise he needed to solve the roadblocks he encounteed in developing the Polio vaccine. Also when Dr. Salk was asked who owned the Salk vaccine he replied “everyone”. The Manhatten project and the moon landing project are all examples of “directed research” projects. I am happy to be alive. I exist based on 1950’s medicine deliverd in a modern dosage form. My doc always reminds me “their is nothing out their for you”. The internet is fantastic for learning and I wish I had participated in a group earlier. I am a vitamin/antioxident junkie and I have never “shared my problem” with anyone except my wife. Please withhold my name
— Gerald BrownGB
The sharing of men’s experience of talking to other men about this condition and many of the posters’ comments are very enlightening.
FROM TPP ( # 1) “-Who can better tell a man what to expect than a man who has been through it himself? ………….. And as I’m sure you are aware, right now there is no best recommendation for how men should proceed. The Agency for Healthcare Research and Quality has said there is not enough data to advise men on their best options for prostate cancer treatment. ……….(the only thing that can offer) hope …. is (for men) to talk to each other, talk to their doctors, think about their own priorities and make a decision with little science to guide them….there is little science…”
TPP has made several points that have been raised before. There is not enough data…. and …the best hope is …..and not enough science. Not only is there little conclusive research about what to do, there is even less about how to prevent this and other cancers.
From the earliest historical records, the healer, physician or shaman was concerned with after the fact disease. But in earlier times, the offered cure beyond myth, ritual, prayer, and sacrifice was an option of correcting the situation by use of natural remedies.
We need more research into primary prevention and cure, not symptom relief. We need additional safe, less costly and more effective methods to treat disease.
— healthinfoBefore talking about my situation there are a couple of important points I want to make:
1. If you served in Vietnam and are diagnosed with prostate you may be covered by the VA’s Agent Orange program. Go to va.gov and search for Agent Orange There are other items on the list (like diabetes) that are also covered. Actually thee Agent Orange program is one that would make a very good article. If readers what comments from me send an email to oldhh@mac.com.
2. Prostate cancer is being diagnosed & treated at a younger age - having a problem in the 40’s is not uncommon these days.
My PSA was 5.5 when I was 45 and as it increased I started having biopsies. After multiple biopsies in the office we moved to the hospital where the Urologist could take 30+ “bites” at a time. I was finally diagnosed after the third hospital biopsy - less than 1% of the total volume of 32 plugs.
My decision after a month of research was to have the surgery. First I wanted the cancer out - an attitude I gained after my wife had surgery for breast cancer.
Second, I wanted to avoid radiating the lower spine area in the event that there was a spread of the cancer later in life. This cancer spreads to the spine and is treated with radiation. If it spread to an area that had already been radiated I would be up a creek.
Finally I wanted to know why it took so many biopsy bites to find the cancer. Turns out my cancer was on the apex (bottom tip) of the prostate, which is a very hard area to get a diagnosis from. I’ve since learned that only about 80% of prostate cancers are on the back wall where they can easily be diagnosed.
The path report on my cancer indicated that it had spread to the margins and that radiation was indicated, so I got a double dip, treatment wise.
Comparing surgery with radiation - my experience was that surgery was the best treatment of the two. A mid line incision was made, which is the least painful area as the nerves start at the spine, spread around the body and end at the mid line.
Pain wise I consider surgery pretty easy, but I had undergone a cervical discectomy with fusion years before. The cervical part of the surgery was a joke - I didn’t even feel the band-aid on the incision site. The removal of a small piece of bone from my hip was another matter - HURT and took a long time to heal. The prostate surgery was FAR less painful than that and was well covered with meds.
On the radiation side, gas & problems with stools was the main problem - but hemorrhoids(if you have them) are in the line of fire during treatment and they get angry! Preparation h generally takes care of that problem.
Long term the gas has been the main concern. If we still had our two beagles they would be leaving the room when I walked in. Sometimes I just keep letting gas slip out as I walk - teaching me the real meaning of the term “crop dusting”.
Bottom line (no pun intended) is that I had it, got it out and it’s history for me. Issues like bladder spasms are handled with medications and a pad (which is really nice in the winter) takes care of any leaks. I sure don’t feel sorry for myself - especially after my wife was diagnosed with acute leukemia in October of 06.
Prostate cancer can be scary for men, but in comparison with other cancers around it’s a small problem to find early and take care of.
— Ken MclaughlinPlease read and consider signing the Petition to Make Prostate Cancer a National Priority at http://www.prostatecancerpetition.org .
— Darryl Mitteldorf, LCSWRe: message #8. The national nonprofit, Malecare http://www.malecare.org , has facilitated gay men with prostate cancer support groups since 1999. We invite everyone who wants to start a group in their cities to contact us. Also, this free, online gay prostate peer support at Out With Cancer, at, http://www.outwithcancer.org .
— Darryl Mitteldorf, LCSWI’ll add my two cents’ worth, since I seem to be older (76) than the men who have written in so far.I am just completing external (IMRT)radiation and internal radiation (81 internal seeds). I also have had two hormonal implants and will have one more in July–this over a period of 7 months.
My decision as to treatment was simplified by my urologist, who will not perform prostatectomies on men over 70. So we opted for a three-pronged approach: internal and external radiation and hormonal therapy.
My urologist worked in tandem with a radiation oncologist to plan the radiation treatments (5 X a week for 5 weeks)followed by the placing of the permanent cesium seeds. Side effects were minimal, since planning with medical physicists and high-powered computers has much improved radiation treatment in the past decade.
I take Flowmax though I am trying to wean myself off it, and I have annoying hot flashes, perhaps 6 or 7 a day…a small price to pay for fairly aggressive treatment for a middling aggressive cancer (Gleason 4+3, PSA 10, cancer in 6 of 12 biopsy cores.
Sex? Well, I’m a widower so the fact that I seem pretty much to have lost both the interest and the ability is not as crucial as it otherwise might be. I suspect the hormonal treatment is mainly responsible, since its object is to lower the testosterone level.
As my urologist says, we won’t know if I have effectively been “cured” until I die of something else. But there’s satisfaction–for me at least–in knowing that I went after this disease with cutting edge medical help. It helps to be proactive–I would find “watchful waiting” very trying.
I was amazed to learn from several men in my concominium–we’re all a bit older–that they had all had prostate cancer–we could form a support group in this building alone. Those men are leading active, happy lives and so am I. A positive attitude really helps!
Keith in Pittsburgh
— Keith McDuffiePerhaps even more importantly, there are many matters that doctors do NOT address appropriately with their patients, including, in particular, the his risks for long-term impotence.
Those interested in seeing how a modern, Web 2.0 social network that includes physicians, patients, wives, etc., works so that everyone can collaborate may wish to Google “The New Prostate Cancer InfoLink Social Network”
— MikeI’m a primary care internist. These are the points I cover before doing a PSA. After this, most decline PSA, but if the patient and his wife or partner still want then we do it.
“The following points about prostate cancer screening were covered: Screening involves testing people who have no symptoms. Many men (1/3 over 50; most over 90) already have a focus of prostate cancer but 5/6 aren’t going to grow and will not cause trouble or be ’significant’, based on discrepancy between prevalence and mortality. 1/6 will be aggressive and can cause a miserable death with widespread painful bony metastasis and I have had about 5 such men over 25 years in practice. The morbidity and mortality of treating prostate cancer is considerable, with surgery (70% impotence and incontinence, 1/200 chance of death due to the operation or its complications , considerable short term discomfort, and no randomized evidence of benefit in survival), radiation which has a high incidence of incontinence and some impotence and some radiation proctitis, and watchful waiting, which involves no treatment and often causes a lot of anxiety. In addition, up to one third of men with no evidence of spread who have ‘curative’ procedures show evidence of spread within 5 years. In addition, it has been revealed (9-04) that the cutoff point of 4 for PSA was arbitrarily chosen, does not currently distinguish between benign and malignant disease (and is most commonly a marker of benign enlargement of the prostate) and is no longer considered useful by Dr Stamey at Stanford who first described the use of PSA for screening. He claimed that more were being harmed than helped by its use with regard to overdiagnosis and overtreatment of lesions that would not have caused any harm. He did argue that palpable disease was almost always significant, and digital rectal exam should be reverted to as the basis for further diagnostics. However urologists and some others continue to encourage use of psa for screening. The patient should discuss this with his wife or partner, and if prostate cancer should be diagnosed subsequently, they should consider how they would feel about not having pursued the diagnosis earlier. With studies that re ongoing now,there may be groups of men who would benefit from screening but at this point, even in men with a strong family history of prostate cancer, reliable evidence doesn’t exist supporting screening’s benefits. To repeat, patient and partner should understand that if they elect to not do screening, they may have to deal with possibility of discovery of prostate cancer later, and fact that they elected to not look for it earlier, on the reasonable basis that early diagnosis probably does not affect survival. If this is not an acceptable proposition for patient and partner, then they should elect screening.”
— Primary Care DocI’d add one more thing to my post above. Even the most aggressive screeners do not recommend psa screening for someone with 10 years or less life expectancy, yet many elderly men wind up getting psas and wind up facing the agonies described in all these posts without any solid evidence of benefit to them. Personally speaking, at the age of 63, I have never had a PSA done and wouldn’t dream of doing one. The first law of medicine is supposed to be “above all, do no harm” and it seems to me we are doing a LOT of harm in PSA screening.
— Primary Care Doc