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Old 03-09-2011, 01:40 PM   #1
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Age 50 just DX with Prostate Cancer

I was just diagnosed with prostate cancer. Looking for information on treatments. My PSA is 18, Biopsy showed 4 of 12 cores positive with a gleason score of 4+3=7 with perineural invasion present.

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Old 03-09-2011, 08:51 PM   #2
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Re: Age 50 just DX with Prostate Cancer

hulk1989,

I had Proton Therapy at Loma Linda and I am confident of a cure without side effects such as impotence and incontinence. I suggest you Google "protons" or search for proton centers as it seems to me that you will have to undergo some kind of radiation therapy to cure your cancer. My doctor told me that it is curable but you have to be aggressive and to get to a center of excellence which I did. At your age I wouldn't want to be doing any watchful waiting. Please don't delay.

Bob

 
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Old 03-10-2011, 06:39 AM   #3
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Re: Age 50 just DX with Prostate Cancer

Harpman
Thank you for the response to my post. I have been to 2 different Urologists and they have both suggested surgery which concerns me conidering the possible side effects involved. As for the proton beam therapy how many treatments did it require for your treatment? Is it a daily thing? When searching for proton treatment centers the closest one to my area is in Oklahoma City, have you heard anything about this center? The main ones that seem to come up on message boards are Loma Linda, Johns Hopkins, and the center in Florida.

 
Old 03-10-2011, 11:35 AM   #4
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Re: Age 50 just DX with Prostate Cancer

hulk1989
I had a radical prostatectomy in 2001 which failed and I had Proton Therapy at Loma Linda in Dec09/Jan10 which consisted of 40 proton treatments Mon-Fri. Since you still have a prostate you would receive 45 proton treatments and you need a week to be fitted for your immobilization device and have the physics and treatment plan created. That's ten weeks in total. ProCure in Oklahoma City is a new and I'm sure it is a fine facility. Google "Bob Marckini", click on the first link, and you can find a lot of information and a list of proton centers plus testimonials.

 
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Old 03-25-2011, 08:39 AM   #5
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Re: Age 50 just DX with Prostate Cancer

Hulk1989
At age 54 I had prostate cancer. I had surgery. I am now cancer free. Unfortunatly my problems are incontinence and impotentance. I cannot say I recommend surgery over radiation, surgery did cure the cancer.
Your psa is high and your gleason is aggessive. Do not hesitate to get treatment.
Good luck

 
Old 03-25-2011, 11:10 AM   #6
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Re: Age 50 just DX with Prostate Cancer

Hi hulk,

I'd like to extend my own welcome to the Board, though I'm sorry you had the need to join us!

I'll respond to your first and third posts with some thoughts in green.


Quote:
Originally Posted by hulk1989 View Post
I was just diagnosed with prostate cancer. Looking for information on treatments. My PSA is 18, Biopsy showed 4 of 12 cores positive with a gleason score of 4+3=7 with perineural invasion present.
I'll give you the unfavorable news first. You have probably already realized that your case is aggressive, as mentioned also by harpman. Prostate cancer cases are conventionally divided into three risk groups, low-, intermediate-, and high risk, depending on your PSA, Gleason score and stage. You have not indicated your stage, but both the PSA level and Gleason score would indicate higher risk. There are other factors that can also be considered; 4 of 12 cores positive, 33% of the total cores, is just below the higher risk threshold. I'm thinking your PSA probably rose by more than 2.0 in the past year, which would be an independent predictor of higher risk.

Now here's the good news. Prostate cancer screening, case evaluation, decision making, treatment and treatment support have all improved greatly in the past several decades, with major improvement each decade. Moreover, research has demonstrated that even high-risk prostate cancer patients enjoy a 95% survival at the ten year mark, and that statistic was from a number of years ago; survival is almost certainly higher today.

I'm in that group, and I share some similar case characteristics with you: baseline PSA in December 1999 113.6; stage 3 with suspected seminal vesicle invasion; Gleason 4+3=7, determined by an expert pathologist; all cores positive, most 100% cancer; and perineural invasion. Yet I'm doing very well in my twelfth year as a survivor. In fact, I'm now on vacation from the heavy-duty drugs in my triple androgen deprivation therapy (hormonal therapy) approach, and my quality of life is just as good as it was before I was diagnosed, except that I'm feeling some of the effects of age.

In your third post you wrote:


Quote:
Harpman
Thank you for the response to my post. I have been to 2 different Urologists and they have both suggested surgery which concerns me conidering the possible side effects involved. As for the proton beam therapy how many treatments did it require for your treatment? Is it a daily thing? When searching for proton treatment centers the closest one to my area is in Oklahoma City, have you heard anything about this center? The main ones that seem to come up on message boards are Loma Linda, Johns Hopkins, and the center in Florida.
In view of your case characteristics, I'm disappointed but not shocked that two urologists suggested surgery. I'm a now savvy layman with no enrolled medical education under my belt, but it does not take a genius to figure out that surgery for you would be a long shot for success with a strong probability of those side effects you are concerned about. There is a key table that is almost universally used to gauge the likelihood that surgery will cure prostate cancer. It's known as the Partin Table. You can find it published numerous places, but the one I use is from the original 2002 edition of a book you should get: "A Primer on Prostate Cancer -- The Empowered Patient's Guide", by Dr. Stephen B. Strum, MD, and Donna Pogliano, wife of a PC survivor. (The 2005 revised edition is quite similar but has a few more items covered.)

The Partin Table looks at just three factors: your PSA (18 for you); your stage (I'm going to assume it's T2a; if it's stage 3, they would have been irresponsible to recommend surgery - run for the door and don't wait to pick up your hat); and your Gleason (4+3=7 for you). Here's what the Partin Table (2001 version, but not that far from the more up-to-date version) says for a case like yours:

Chance that the cancer is confined within the thin rind of the prostate, which is known as the capsule: 14% for stage T2a (27% for stage T1c, 9% for stage T2b, and 7% for stage T2c. That's not good.

Chance that the cancer has already gone not only into the thin rind surrounding the prostate but has actually penetrated beyond it: 55% for stage T2a (51% for T1c, 50% for T2b, and 43% for T2c). That means there's a better than even chance that the cancer has probably escaped the range where it can be cured by surgery.

Chance that the cancer is already in the seminal vesicles: ranges from 11% to 13% for the various stages. In other words, it's likely the cancer has not yet gotten that far.

Chance that the cancer is already in the lymph nodes: 18% for stage T2a (10% for T1c, 27% for T2b, and 38% for T2c). You would like the odds to be better, but that is not too bad.

Prostate cancer is quite curable by radiation even when it is beyond the prostate and thus beyond the reach of a reliable cure with surgery. Surgeons often think with obsolete radiation statistics (back when an inadequately low dose of radiation was given), and, to be blunt, are not aware that patients like you have a better shot at a cure with radiation.

Harpman is a strong fan of proton therapy, but please look at some recent threads on the board about proton therapy which paint a picture that is not so bright. It has worked for many men, but it works better with lower risk cases (as do all therapies), and, while it justly has a pretty good side effect profile, proton therapy is NOT free of side effects for many men. Research has thoroughly established that.

In my own opinion, neither cryosurgery nor HIFU would be suitable for a case like yours. I'm thinking that radioactive seeds ("brachytherapy"), or a combination of seeds and some kind of external beam therapy would probably give you your best shot. That external beam therapy would probably be IMRT or CyberKnife SBRT. The radiation doctor would most likely want you on hormonal therapy for a period to sensitize the cells to the radiation and also help kill cancer.

There are lifestyle tactics that can be very helpful, as well as mild medications. If you are not on a statin drug, now would be the time to very seriously consider starting a statin; there have been two threads this week about statins and cholesterol as related to prostate cancer.

A lot of lower-risk prostate cancer patients can get away with relying blindly on their doctors and not empowering themselves. I'm convinced that's not the case for us higher-risk patients. Two other books that are outstanding for empowerment (and optimism) are: "Beating Prostate Cancer: Hormonal Therapy & Diet," Dr. Charles "Snuffy" Myers, MD, and "Invasion of the Prostate Snatchers," by Ralph Blum and Mark Scholz, MD. A small investment in the three books will likely pay you huge dividends. There are some fine free resources as well. For instance, the Prostate Cancer Research Institute, PCRI, a non-profit organization, publishes many helpful articles.

One thing the books (and PCRI) stress is the critical importance of an accurate Gleason score. Frequently Gleasons are inadequately analyzed by general medical oncologists. If the original was not done by a pathologist who specializes in prostate cancer, you need to get a second opinion.

I hope this helps.

Good luck and take care,

Jim

 
Old 03-25-2011, 02:32 PM   #7
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Re: Age 50 just DX with Prostate Cancer

Hi Jim

I appreciate your response I have been checking differnet threads on this board for the last 6 weeks and have read many of your posts of which I have found to be quite insightful and full of good information.

You are correct in the assumption that I am stage 2A and I have also had a second opinion on the biopsy slides that came back with the same results. In addition I am already taking a statin have been for about 6 months.

You had mentioned in your post about brachytherapy, I thought I read somewhere that form of treatment is not advised with a PSA over 10. I could be mistaken though as I have been trying to find out as much as I possibly can recently and as one poster said on one of the threads that sometimes I feel like I am trying to drink from a firehose with all of the information I have found.

I am happy to hear that you have been able to keep this beast at bay with your treatment plan for the past 12 years and hope that you have continued success as you are such an asset to others in researching this disease.

Thanks again
Hulk

 
Old 03-25-2011, 03:35 PM   #8
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Re: Age 50 just DX with Prostate Cancer

Hi Hulk,

Thanks for your kind words, and I wanted to respond to one point, the one about a PSA >10. You wrote in part:


Quote:
Originally Posted by hulk1989 View Post
Hi Jim

...You had mentioned in your post about brachytherapy, I thought I read somewhere that form of treatment is not advised with a PSA over 10. ...
That's probably a valid point, in the strict sense of using seeds alone. A good book for seeds and seeds plus external beam is "Surviving Prostate Cancer Without Surgery - The New Gold Standard Treatment That Can Save Your Life and Lifestyle," by Michael Dattoli, MD, Jennifer Cash, ARNP, MS, OCN, and Don Kaltenbach, a well known PC survivor. Dr. Dattoli discusses the eligibility issues for brachytherapy starting on page 74, and he comments that patients with locally advanced disease "may be treated either with external radiation or with a combination of seed implants and external radiation (preferably IMRT). These patients include those with one or more of the following risk factors: stage equal to or greater than T2b, a Gleason score greater than or equal to 7, a PSA greater than 10, an elevated PAP, or radiographic evidence of extracapsular extension (as indicated by color-flow Doppler ultrasound or endorectal EMRI)."

Good luck to you as you work your way through this.

Take care,

Jim

 
Old 03-25-2011, 03:55 PM   #9
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Re: Age 50 just DX with Prostate Cancer

hulk1989
At age fifty I suggest that you seek a cure quickly. Since Jim suggested a book I will suggest that you read Bob Marckini's book "You Can Beat Prostate Cancer".
Bob

Last edited by moderator2; 04-11-2011 at 02:06 PM.

 
Old 03-25-2011, 04:59 PM   #10
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Smile Re: Age 50 just DX with Prostate Cancer

Harpman
I have read Bob Marckini's book and found it to be very informative and I am still considering my options, also I have gotten a few names from Mr Marckini of previous PBT patients from the Jacksonville facility that I am going to contact to see what thier experiences have been.

Thanks
Hulk

 
Old 04-11-2011, 11:29 AM   #11
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Re: Age 50 just DX with Prostate Cancer

I have just recently received the news that my insurance company will not cover me for proton beam therapy as I had hoped. They determiined that it is not medically necessary for prostate cancer and that there is no significant advantage to PBT over IMRT. So I guess it is back to the drawing board for my treatment options.

Hulk

 
Old 04-11-2011, 01:07 PM   #12
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Re: Age 50 just DX with Prostate Cancer

hulk1989
It is common for insurance companies to try and blow you off initially.
Bob

Last edited by moderator2; 04-11-2011 at 02:05 PM.

 
Old 05-11-2011, 07:36 AM   #13
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Re: Age 50 just DX with Prostate Cancer

A quick update to my situation I have appealed to my insurance company twice for the proton beam therapy and was denied both times so I am now going to do Brachytherapy and IMRT begining in June.

 
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Old 05-11-2011, 10:25 PM   #14
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Re: Age 50 just DX with Prostate Cancer

Hulk1989
Were you able to contact any of the Proton support groups which have a database of claims for Proton therapy that were paid by insurance companies? As I understand it if they have paid for Proton in the past they must cover you. If you have the energy and desire to go around with the insurance company some more you could contact one of the longest operating Proton treatment centers and get a referral to a support group which could help you with your appeal and determine if your insurance company is arbitrarily refusing your claim.
Best of luck,
Bob

 
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