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Old 02-10-2009, 09:57 AM   #1
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Richard Richard HB User
Just diagnosed with Prostate Cancer

Hello, I just found out the news. I have had three biopsy's and on the third one it came back positive. I have a Gleason of 3+3. I am now just starting to read and make decisions. I go for a bone scan next Wednesday. I guess after that I get the consultation as to what is suggested. I have been reading a bit and am as much in the dark now as I was at the begining. I guess there is removal with robotic surgery, radiation beads and Proton theropy. I am 60 years old and in good health. I am not so worried about anything except I don't want to be in a diaper for the rest of my life. this being my biggest concern. If anyone can tell me any of their experiences after any of the above options I would greatly appreciate it. I have been reading this forum as of today but plan on visiting regularily. Thanks
Oh ya. I am also worried as to how quickly I need to make decisions.

 
Old 02-10-2009, 11:10 AM   #2
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shs50 HB User
Re: Just diagnosed with Prostate Cancer

Hi Richard:
Sorry you have to deal with prostate cancer at your relatively young age or at any age for that matter. Unfortunately you have lots of company including the rich and famous.
Fortunately most of us survive it in good shape and go on with our lives.
To answer your questions without giving TMI (Too much Information) at this early stage, here are the things you should be aware of:
1. You most probably have very low risk, early stage, microscopic disease with a low Gleason Grade of 3+3=6. Requiring 3 biopsies to detect it indicates that it it is very early and hasn't invaded outside the prostate capsule.
2. You probably have the best chance of a complete cure with surgery if performed by a highly experienced expert either in the robotic, laparoscopic or open procedure.
3.Any of the three basic choices of treatment;surgery;brachytherapy (radioactive seeds) or external beam either IMRT or Proton Beam carry some risk of side effects. No treatment is comletely free of some risk of urinary or erectile side effects although the risk of advancing cancer far outweighs the risk of any potential side effects which can be dealt with effectively and minimized or avoided by selecting the best specialist to perform either the surgery or radiation in a top center of excellance. Your age is very much in your favor as far as the risk and recovery incidence of E.D. either from surgery or radiation and any urinary problems are usually short lived. I had surgery at 69 and never experienced one day of incontinence and never wore diapers or pads. E.D. can occur with surgery or radiation although with surgery its onset is immediate and with radiation there is usually a delay.
4.With early stage,Gleason 6 prostate cancer you have the luxury of time to investigate treatment options and consult with the best surgeons and radiologists specialising in prostate cancer and scheduling treatment at a mutually convenient date. Most of us were treated several months after diagnosis. I wouldn't suggest letting it go over a year, however.
5.There are some on this board as well as prominent prostate surgeons who will counsel you to consider the option of "Active Surveillance" or "Watchful Waiting" as it used to be called. There is a growing body of evidence that this is a reasonable course of action for very low risk cases. With careful monitoring and periodic biopsies of a low risk case such as yours it is usually safe to postpone treatment for a few years and with careful monitoring to know when treatment becomes necessary and will still be effective. My own view is that at your young age of 60 and being in excellant health, you will eventually need to deal with the prostate cancer which isn't a benign disease nor is it in long term remission. It will continue to progress, albeit slowly, and even with active surveillance ,its possible that it will advance sufficiently to require more extensive treatment than if eliminated earlier.My brother-in-law tried active surveillance and with his physician did all the right things to manage the process and yet missed his window of opportunity for an uncomplicated, curative, bi-lateral nerve sparing surgery. During the 3 year period and between biopsies it spread outside the capsule and touched his rectom ,necessitating loss of both nerves and some rectal excision. His surgeon said this could have been avoided if he hadn't waited so long.I thus remain skeptical of Active Surveillance since one can't be sure when the window will close.
&. An excellant book you might consider as a reference , is "Dr. Scardino's Prostate Book". Dr. Peter Scardino is the chief of surgery at Memorial Sloan-Kettering Cancer Center in NY and one of the worlds most prominent prostate surgeons along with Patrick Walsh of Johns Hopkins fame who also published an excellant book on the subject.
Good Luck, Bob

Last edited by shs50; 02-11-2009 at 02:35 PM.

 
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Old 02-10-2009, 05:04 PM   #3
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daff HB User
Re: Just diagnosed with Prostate Cancer

Quote:
Originally Posted by Richard Richard View Post
.... I guess there is removal with robotic surgery, radiation beads and Proton therapy. I am 60 years old and in good health. I am not so worried about anything except I don't want to be in a diaper for the rest of my life. this being my biggest concern....
You've gotten a good start with Bob's response. I was 64, PSA of 4, and a Gleason 3+4. As many of us hear from our urologists, surgery is usually recommended (because that's what they do). I started down the path of robotic surgery but did a lot of reading and speaking with past and present proton patients-- and eventually chose proton beam therapy (in Jacksonville, Florida). You have one of the best centers for proton treatment (of the five in the U.S.) within a very short distance from where you live-- in Loma Linda. So I'd say, investigate the various alternatives, but learn to be empowered in that this is ultimately your decision. Read a lot, investigate, and you'll figure out what suits you best-- as there are many avenues.

Proton beam radiation is one of the most advanced forms of radiation with a very targeted beam that does not have a great impact on neighboring tissue in your body. It releases its energy within the prostate and treats it, and a small safety margin, and then dissipates. You mentioned incontinence as a possible risk-- it is basically not a concern with proton-- maybe a fraction of 1% would be impacted. So one of the books on your list should be Robert Marckini's "you can beat prostate cancer"-- it tells the story of Loma Linda very well. But again, you should check out all the choices- you just have a tremendous advantage in that you live so close to Loma Linda that it will at least be easy to check it out and get a consultation there.

As Bob said, unless there's an overriding reason given by your doctor, you have at least a few months to check things out. There's a long waiting list at Loma Linda, so if that becomes something of interest, at least you could get on their calendar.

There's a lot of information on this board, and I'd encourage you to look through past posts. I've done a lot of posting on proton beam therapy, but also on other related topics. You can also do keyword searches when trying to check things out. Try not to get overwhelmed by the information though.

Good luck as you begin down this road, which most often has a very positive ending!

 
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Old 02-11-2009, 03:29 PM   #4
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Re: Just diagnosed with Prostate Cancer

Quote:
Originally Posted by Richard Richard View Post
Hello, I just found out the news. I have had three biopsy's and on the third one it came back positive. I have a Gleason of 3+3. I am now just starting to read and make decisions. I go for a bone scan next Wednesday. ... I have been reading a bit and am as much in the dark now as I was at the begining. ... If anyone can tell me any of their experiences after any of the above options I would greatly appreciate it. ... I am also worried as to how quickly I need to make decisions.
Hi Richard,

Welcome to our club! (Sorry we had to welcome you. )

Both shs50 and daff have provided important information and leads, and here are some additional thoughts. I don't know a way around the all-too-real TMI problem that shs50 mentioned, except abdicating the decision-making role and letting the doctor call the shots, which is just not a good idea! As the others indicated, from the few details in your post, it looks like you have time to aim carefully before you pull the trigger. That's usually the case with prostate cancer.

Can you tell us some more details about your case in addition to your Gleason Score, previous negative biopsies, age and good general health? Often we aren't aware of what's important at the beginning, but here are some other pieces of the puzzle that you should know. (By the way, like almost all of us on this board, I am not a doctor and have had no enrolled medical education.)

1. What "stage" is the cancer, and
2. Did the doctor add any comments about the results of the Digital Rectal Exam?
3. What is your current PSA and the date of the test?
4. What was the value of the previous two PSAs and their dates?
5. How many biopsy cores were positive?
6. For each positive core, what was the percent of the core that was positive, and what was the length of the cancer in each core in mm?
7. Did the biopsy report note any "tertiary" Gleason Grade 4 or Gleason Grade 5 cancer? (Usually the Gleason Score is reported with just the first two most prominent grades, but an increasing number of doctors is noting the appearance of any cancer with a grade higher than 3, especially if it is grade 5.)
8. What were the locations of the positive cores?
9. Did the biopsy report not any special comments, such as the absence (or presence of perineural invasion)?

If you don't have all of this information, which is very likely, you are entitled to it and can get it (if it exists) by contacting your doctors. You should get a copy of your biopsy reports, and copies of your previous three recent PSA reports would also be useful. (That way you can tell what PSA tests were used, whether they were all the same, and the reference ranges for normal PSAs for those tests.)

The foregoing data is like the name, rank and serial number for a soldier. It can be a huge help in decision making, and is essential to sound choice of certain options.

For instance, active surveillance (AS)may be a worthy option for you, but well-done AS screening to see if it would be wise in your case uses all of the information above, and sometimes more, certainly including results from any scans. (Usually bone and CT scans are virtually worthless in low risk cases, though they are frequently done.)

I'm one of those on the board who thinks highly of well done active surveillance, as shs50 mentioned. However, doing AS well is key to assuring the patient isn't sandbagged by a stealthy aggressive cancer, as apparently happended to shs50's brother-in-law . (Note that there apparently was a three year gap between biopsies for his brother-in-law; my strong impression is that the major AS programs like just a year between biopsies at the outset to get a firm line on the cancer's aggressiveness. I fully agree with shs50 that unsound AS can be harmful to the patient, but that's true of any therapy with faulty execution.) While it is true that many low-risk cancers still will keep growing, as shs50 mentioned, in one major AS series of patients (Klotz, Toronto), 20% had a PSA doubling time of 100 years or greater. Such patients typically have an extremely low risk under an AS approach, "other things being equal." One leading medical oncologist, Dr. Charles "Snuffy" Myers, has said that the seriousness of prostate cancer ranges from cases as serious as dandruff to cases as serious as pancreatic cancer. I think that was a rhetorical comparison, but the points he was making were that there's a great span of seriousness for prostate cancer and also that it's important to correctly gauge the seriousness of our own cases.

If you are interested in AS, check the previous thread entitled "Active surveillance - a sound option for truly low risk men," started 1/5/2008. Personally, I like the concept of Active Surveillance with intent to defer therapy until and if diligent monitoring sounds an early alarm of unacceptably aggressive disease. That approach can be complemented with a vigorous program of nutrition/diet/supplements, aerobic and strength exercise, and stress reduction, for all of which there is strong but not yet persuasive evidence for effectiveness in helping combat prostate cancer. Mild drugs such as finasteride and Avodart also appear to be useful.

There is another option rarely mentioned for low risk men, intermittent or hopefully one cycle of primary hormonal blockade therapy, as it is usually thought of for high risk men and men with advanced cancer, such as me. However, since you are in Riverside, California, you are within a day trip of several of the leading experts in the world in that therapy, particularly medical oncologists including Dr. Robert Leibowitz, and the practice of Drs. Mark Scholz and Dr. Lam, all located near the coast in the LA area. There are many other highly talented physicians treating prostate cancer in the LA area. As daff said, you are fortunate!

Dr. Scholz's former partner, now semi-retired, is Dr. Stephen B. Strum. Take a look at the book he wrote with Donna Pogliano: "A Primer on Prostate Cancer - The Empowered Patient's Guide." To me it is the cornerstone book for all of us.

I wish you well in coping with all of this. It's really tough at the beginning, but it gets better.

Take care,

Jim

 
Old 02-12-2009, 09:58 AM   #5
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jj1963 HB User
Re: Just diagnosed with Prostate Cancer

Richard -
Congratulations, you found probably one of the most resourceful and supportive Message Boards out there. All of us 'club members' have experiences to share along the way. I have found great benefit in following it since my surgery in Mar 07. Keep us posted and ask any question you want. Somebody had a similar experience no doubt.
__________________
laparoscopic RP at UCSF, Mar 29, 07. T2c, 3+3, neg margins, neg lymph nodes, catheter out Apr 10, 07.

 
Old 02-14-2009, 07:23 PM   #6
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Flygeeser HB User
Re: Just diagnosed with Prostate Cancer

Hi Richard:

The prior replies provide you some excellent information.

I was where you are about 7 months ago. I just posted a thread on this board titled "One man's story" which lays out my experiences. You might want to check it out.

 
Old 02-14-2009, 08:50 PM   #7
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dale2035 HB User
Re: Just diagnosed with Prostate Cancer

Quote:
Originally Posted by Richard Richard View Post
Hello, I just found out the news. I have had three biopsy's and on the third one it came back positive. I have a Gleason of 3+3. I am now just starting to read and make decisions. I go for a bone scan next Wednesday. I guess after that I get the consultation as to what is suggested. I have been reading a bit and am as much in the dark now as I was at the begining. I guess there is removal with robotic surgery, radiation beads and Proton theropy. I am 60 years old and in good health. I am not so worried about anything except I don't want to be in a diaper for the rest of my life. this being my biggest concern. If anyone can tell me any of their experiences after any of the above options I would greatly appreciate it. I have been reading this forum as of today but plan on visiting regularily. Thanks
Oh ya. I am also worried as to how quickly I need to make decisions.
Hi, Richard Richard,
I think laymen and professionals tell us that we have no need to rush into making decisions about treatment. I suppose the rate of an increase in the PSA would have caused me to feel some pressure to get on with the treatment, but I did not have that. A Gleason score of below 7 can give the patient a bit more calm in taking his time. A 7 (especially a 4 + 3) would suggest a little more urgency. That was my score and professionals, including one who did a colonoscopy in preparation for treatment, said the cancer had been around for years and I had no need to rush. The pathologist did not report a third prevalent pattern (if I had a tertiary pattern scored 4 or 5, I would have been considered to have a more aggressive cancer).
I did a bunch of reading...like you are doing. I received some recommendations from doctors I trusted. The surgeon who did the biopsy recommended surgery (DaVinci robot). A radiation oncologist and my GP recommended this surgeon, if I decided on surgery. My research led me to prefer open surgery, despite the risks of big Is (incontinence, impotence and infection). The surgeon being able to detect some spread of cancer outside the capsule by touch made open surgery preferred over robotic (feeling for cancer with a robot is like doing braile with chopsticks, per Dr. Walsh the expert who did surgery for Senator Kerry and wrote the highly regarded book). My GP (urologist) recommended the Irvine Cancer Center. Dr. Tokita at the Center tailored a plan (hormone, brachytherapy and external radiation) for me that really impressed me and my wife (who is very insightful, but did not advice me since I had done extensively research). I could certainly see why my trusted GP had such confidence in Dr. Tokita. That treatment (Hormones) would have started immediately...and the seed therapy would have been in a couple weeks and would be done in his center in a few hours. I felt the follow up and follow through would have been so thorough, competent and effective. Dr. Tokita is the only doctor I encountered that made me feel that I could ask him as many questions as I wanted and he would patiently answer them all.
After doing considerable research, I went with treatment located in your backyard. As you know, Loma Linda is a famous treatment center. It was the pioneer for proton therapy in a hospital setting in 1990. Some cancer patients come from nearby Riverside, Moreno Valley, Hemet, Palm Springs, Lancaster, Corona and Irvine. However, many were from the Midwest, the East coast, the Northwest, Canada and a couple men from Germany. I felt I was lucky being an hour away and could commute. I faxed my information with my application. The start date initially was about ten weeks, but was moved up. Treatment starte in a couple weeks. If I did not live close enough to commute for proton therapy, I would made the move for the 45 session treatment. The treatment is very precise. As you know the proton therapy has the advantage of doing less damage to healthy tissue than other radiation...peaking at the target and not damaging on the other side. Survival was more important to me than avoiding side effects. That is why I selected proton therapy, but the lack of any side effects was not unwelcome. My wife says I had a little fatigue, but I think I used that excuse to postpone some chores. Consulting with Irvine Cancer Center and Loma Linda University Medical Center resulted in my being 100% confident that either treatment would work out just fine. Your being otherwise healthy (me, too) AND younger with a lower Gleason, will make it likely you will be choosing between multiple options that will give you an even more positive prognosis. Your doctors are going to tell you that you have time to line up a plurality of good choices.
Dale2035

 
Old 02-24-2009, 11:29 AM   #8
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Re: Just diagnosed with Prostate Cancer

Richard, you are exactly where I was in Sept. o8. But I believed I did not need to rush into anything. I was scared and concerned but did not want to make a quick decision I might regret later. So I did lots of research, and one of most helpful things was to talk with men who had various treatments and see what their experiences had been as far as actual treatment went and side effects which are the major issues. So I read several books by Peter Walsh, Peter Sardino, Bob Markini and others. I visited many public websites, message boards, etc. and researched every treatment available from watchful waiting, surgery, HIFU, Cyberknife, seeds, IMRT, proton therapy, etc. Some of the most helpful information came from other men. My original doctor wanted to do Da Vinci, a second opinion clinic I went to said either surgery or seeds would be fine. They did both of those procedures. But the more I researched and the more I talked to men the more I keep returning to Proton as a viable option. I did more research, and went for a consult at UFPTI in Jacksonville and made a decision to go that route. I start treatment in about a week. I was originally diagnosed in Sept. 08 so it has taken me 7 months to make my decision. I spent literally hundreds and hundreds of hours researching, reading, and talking with men before I made my decision. What led me to proton ultimately was it just made sense from a treatment standpoint as protons really hit the cancer and not surrounding tissues as much so there are less side effect issues. Track record based on clinical studies I poured through and tried to understand seem to indicate it is on par with the Gold Standard. And discussions with men who had this treatment. It was the only treatment option I investigated where the men who had it really liked the outcome and results and lack of major side effect issues.

So you have plenty of time. Do your homework and whatever treatment option you choose you will likely be comfortable with it.

Good luck and let me know if you have any questions. Mel

 
Old 02-25-2009, 07:41 AM   #9
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Richard Richard HB User
Re: Just diagnosed with Prostate Cancer

Thank you very much for your very well done reply. I have obtained all my records and have an appointment on Friday with Loma Linda Cancer Hospital as well as with my doctor to discuss the results of the bone scan and all the other tests. You have eased my mind a bunch. Thanks again.

 
Old 02-25-2009, 07:44 AM   #10
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Re: Just diagnosed with Prostate Cancer

Thank you. There is a long waiting list for Proton theropy. I have checked and I have also had gastric bypass and they are not sure if they can target the tumor with the staples in my stomache.

 
Old 02-25-2009, 07:53 AM   #11
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Re: Just diagnosed with Prostate Cancer

Thank you. I am only 15 mins from Loma Linda and I think if I am told I have time I will consult with the Proton prople.

 
Old 02-25-2009, 03:55 PM   #12
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dale2035 HB User
Re: Just diagnosed with Prostate Cancer

Quote:
Originally Posted by Richard Richard View Post
Thank you. I am only 15 mins from Loma Linda and I think if I am told I have time I will consult with the Proton prople.
Hi, Richard Richard,
When I was getting proton therapy at Loma Linda, I met men from all over the State and the country...and a few men from out of the country (Canada, 2 from Germany). Several from Riverside, Moreno Valley, Corona, Hemet and other nearby towns felt fortunate to be so close to an important resource. I had heard about the long waiting list and was initially given a start date that was not as soon as I preferred. The 10 week wait was not going to deter me from what I decided was the best course for me. However, contacting them and faxing my information, I got a start date in a couple weeks. I see you have received extensive information on many aspects of the options. I am merely speaking to the one factor of the idea of a possible wait. When the Irvine Cancer Center (it seemed to be a great resource) was going to start right away, I could feel the benefit of getting on with the treatment. I was happy I waited a couple weeks to start the proton treatment. I bet the start date will not be a factor if you decide on an alternative to proton therapy.
Good luck with whatever course you select.
Dale

 
Old 08-31-2011, 04:48 PM   #13
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Whinton HB User
Re: Just diagnosed with Prostate Cancer

Hi. All
The wife and i were eating out so i picked up a paper and handed it to my
wife. So after a few min. she says read this hon. So i am reading and i said
out lowed hell this is the same stuff mom made her stew with. Mom said
it was a cure all. O YA RIGHT i thought God Bless Her anyway the paper was talking about this country has the least men with prostate cancer in the world, next to nil. So the study went on that these men ate alot of spicy food
with a lot of this stuff in it. The climate there is perfect to grow it.
But being a small country the demand for this would out do the supply.
Hell we left the resturant went to the store to buy some. Nothing it has a
very short shelf life so they dont carrie it.
So i went for the next best thing in a bottle.Would you believe it
a woman took all but three and i nabbed them.
The name is Yucatan, Habanero Pepper
excuse my spelling. Check it out I take it every day

 
Old 09-03-2011, 12:51 PM   #14
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Whinton HB User
Re: Just diagnosed with Prostate Cancer

HI Dale Did not post this unless i did by accident. Sorry
WHinton Take Care

 
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