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 Post subject: Report or Caution
PostPosted: Sat Sep 26, 2009 10:26 am 
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A little of both, I suppose, but mostly a caution to all. It is also an explanation for why I haven't been active for a couple of months.

I am just finishing an eight week daily proton treatment for prostate cancer at MD Anderson in Houston, with excellent expectations for the outcome.

Along the way, I learned that about 1 in 6 men will have prostate cancer and the odds drop to 1 in 3 if there is prostate cancer in the immediate family. So several hundred of the men on this forum will develop it. Identified early, it can be contained. Too late, and it will kill you.

The solution is for men over 40 to have an annual PSA test, a simple blood test. A PSA over 4 used to be the point for future treatment, but many doctors have now lowered this to 3 or even 2.5. A more telling symptom is an increase in the PSA number of .75 or more in one year. Keep this record yourself. Do not depend on your doctor.

I want to be charitable about the medical profession, but in talking to many prostate cancer patients at MD Anderson (one of the foremost cancer centers in the world with patients from everywhere), two points stood out. Namely, that family doctors had a wide variation in their detecting and followup of prostate cancer, and that their treatment recommendations were very often outdated. Proton therapy was almost universally unknown or ignored by the diagnosing doctors of the patients in my treatment group, and this seems to be the general case.

Proton therapy is a relatively new way of treating several forms of cancer, including prostate, although it has been used at Loma Linda CA since 1995. At present, it is only available at six places in the U.S. but several new centers are under construction.

The principal advantage to protons is the lack of side effects. All the other treatments have the considerable possibility of bad short/long term side effects. Side effects are
almost zero with protons.

If diagnosed with prostate cancer, I urge you to do your own research on treatment methods, and not depend on your doctor's recommendation. There are many sites on the internet, and a good one regarding protons is listed below.

http://www.protonbob.com/proton-treatment-homepage.asp

My own experience is a daily 358 mile round trip to Houston for a 40 second zapping with protons. This is a little misleading because the actual time on the table is usually about 20 minutes. I feel nothing, either then or later, and so far, have experienced only very minor side effects (burning sensation when urinating cured with cranberry pills.)

One other point is the total and complete sympathetic attitude of the entire staff at the center. From the first day, you are treated as a family member of everybody there. (where else would you be given a business card by all staff from the gate guard to your doctor with their personal phone and email address, and get almost instant answers from phone calls and emails). I cannot say enough about this because it is such a departure from my previous experience with the medical community.

The physical plant of the proton center is very interesting in itself. It involves a cyclotron whipping a hydrogen proton to about 100,000 miles per second before shooting it at your prostate.

I will be happy to expand on any of this by email to anybody that wants to know more.

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 Post subject:
PostPosted: Sat Sep 26, 2009 11:19 am 
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Jess - sounds like good news at your end. Sorry you had to go through that but glad you were able to get on top of it.

Sounds like great treatment but the concept of multiple protons slamming into my prostate at 100,000 miles per second leaves me wondering; how in the world do they get a proton generator close to the vicinity of the prostate? :shock:

Never mind - we'll lose our family rating. :shock:

Good report for you Jess and that's what counts.

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PostPosted: Sat Sep 26, 2009 11:24 am 
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Good news, Jess. I so glad they're finding less painful methods to deal with cancers....particularly those in very sensitive areas of the body.

Keep in touch when you can--that drive has to be rough, but with the outcome of the treatment, I'm sure you're dealing with it just fine.

Positive thoughts and prayers from Indy.

Verna

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PostPosted: Sat Sep 26, 2009 1:54 pm 
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Glad to hear that you are so positive, and well educated, about this. My Dad had prostate cancer so I get checked often. His radiation treatment in the late 70's ultimately contributed to the problems that killed him. Seems like treatment has come a long way.

MD Anderson is a great facility. My SIL lives in Houston and does volunteer work there. She raves about the quality of care.

Keep us posted on your treatment. Inquiring minds want to know......


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PostPosted: Sat Sep 26, 2009 2:06 pm 
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Hey, Jess... sounds like you are doing well! I'm VERY happy to hear that...

Good thoughts and prayers headed your way, buddy...

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PostPosted: Sat Sep 26, 2009 4:07 pm 
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Good to hear you are OK Jess. thanks for sharing the first hand info that could save a life!

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PostPosted: Sat Sep 26, 2009 4:39 pm 
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Medical technology is advancing at an astonishing pace. Now if the Govt can stay out of it, it will get 10 time better in a shorter time.

Wayne

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 Post subject:
PostPosted: Sat Sep 26, 2009 6:11 pm 
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I'd already booked to get tested (my father had the problem) but thanks for the heads up anyway Jess.
Glad to hear its been going well... wondered where you'd got to.


Ray

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 Post subject:
PostPosted: Sat Sep 26, 2009 7:33 pm 
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Jess,
Sorry to hear you are having problems. Happy however that the outlook is good! Thanks for the info as well.

Praying for your full recovery,
ted


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 Post subject:
PostPosted: Sat Sep 26, 2009 8:38 pm 
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Thank you, Jess, for sharing this with us. I certainly hope your treatment is successful and thorough. After my bout with lung cancer I began to closely monitor my PSA test numbers, too.
May I ask how you discovered your prostate cancer? What kind of symptoms brought you to the point of seeking medical treatment?
BTW I took my friend to Loma Linda for proton treatment. His was throat cancer and the side effects were very serious so, perhaps, the location of the cancer has a lot to do with the possible symptoms. Very glad to hear yours were/are slight.
good luck,
Don


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 Post subject:
PostPosted: Sun Sep 27, 2009 7:18 am 
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Thanks everybody, for your concern. We found out a couple of years ago with my wife's neck problem, that knowing others are pulling for you helps,.... a lot, and this group is quick to offer such support. We are grateful.

Don - The short version of detecting my cancer is my heart doc thought I should try Plavix (a blood thinner), but a few days of taking it caused very heavy bleeding to show up in urinating. I had no other symptoms, except my annual PSA test kept elevating. (My primary care doc was not concerned about this, and I now think this was a bad conclusion.)

The heart doc sent me a urologist who then did a whole battery of tests including digital exam, bone scans, PSA, sonogram, some sort of bladder look thing (unpleasant), and finally, a prostate biopsy which showed 8 of 14 samples with cancer cells and a Gleason score of 7. My PSA was 7.4.

An aside: I discovered another error in this process. Before each of these tests the doctor would indicate the test might involve some "slight discomfort". I thought he was referring to my discomfort. However, he must have been indicating his own condition, because as he shoved what felt like a rhino horn into my nether regions, what I felt was pain. "Are you OK?", he would say, just before giving another twist to the rhino horn, and I would grit my teeth and squeeze out "a little discomfort." This is the result of being raised on John Wayne movies.

This urologist recommended traditional radiation (IMRT). He did not mention proton therapy as a possibility until I asked about it, and then sort of blew it off. My wife kept after me to go to MDA. "Why are we fooling around here when the foremost cancer center in the world is down there in Houston!", she kept saying. And after five minutes at MDA, we realized why it is the Big Daddy of world cancer treatment. It is a great place.

Dennis - My primary care doc, like yours, had reservations about the PSA test and need for followup, and my digital exam showed nothing (the doc can only feel one side of the prostate). He also quoted studies showing that 80% of men over age 74 with prostate cancer, would die of other causes before the cancer killed them. "Why subject yourself to treatment unpleasantness," he said, (a chilling portent of future rationing?). Maybe the study is true, but what if you are one of the remaining 20%?

I found the views of your doc and mine typical of the experience of my co-patients at MDA, and illustrates why I became a firm believer in using the PSA as a pointer for further investigation. The PSA can be elevated by other causes, but 9 times out of 10 it will be due to cancer cells. The biopsy is the next investigative tool, but even that is not totally conclusive because it is a random sampling, and can miss cancer cells. That is why it is important to get many (12 minimum, preferably more) samples on the biopsy.

I urge anybody with an elevated PSA to see a urologist and get a biopsy.

Incidentally, prostate cancer is thought of as an old man's disease, but I have two guys under 40 in my small group at MDA.

Sorry for the length. I seem to be incapable of short versions on this matter.

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 Post subject:
PostPosted: Sun Sep 27, 2009 10:33 am 
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Thanks for the advice Jess.

Hope you feel better soon .


Francois

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 Post subject:
PostPosted: Sun Sep 27, 2009 5:31 pm 
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I get my testing done every 6 months. Luckily my physician is a more open minded doctor in relation to new therapies and such, to the point that he personally does research into the various technologies available. At the same time he remains a very personable and down to earth doctor.

I whole heartedly agree with everything Jess says. Get checked at least once a year.

Jess, good to know that you are on your way and you and your wife are kept in my thoughts.

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 Post subject:
PostPosted: Sun Sep 27, 2009 9:15 pm 
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I need to have some other issues checked out anyway...

It's been a tough year. I had to get bifocals, start blood pressure medicine, cholesterol medicine and I have terrible insomnia. Not to mention joint pain, headaches and my hair has quit growing out of the top of my head and has decided to come out of my ears and nose.

I might as well go see "Dr. Hands" while I'm at it. :)

All joking aside Jess, my thoughts and prayers and with you and your family.


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PostPosted: Sun Sep 27, 2009 9:30 pm 
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Thank you, Jess, for the long version. I, for one, can very much appreciate the value of words from experience. Yours is the second alert I have had regarding prostate cancer so you can believe I will heed your advice.
I really hope the proton therapy results in 100% cure for you. Please stay in touch.
good lcuk,
don


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