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Old 04-07-2011, 11:09 PM   #1
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Post Giving advice to someone just diagnosed...

Hello all,
I just received an e-mail from a friend who knew I had pCA and surgery asking for advice. As most of you will understand it is important to give advice as unbiased as possible so that they can make their own informed decision. At the time I had no information accept that he had been diagnosed. I know this can be improved on so help me do so.

Below is what I wrote to them, but I would like to have you as a group help me edit this. I think, with all of your help, we can give others a good foundation to start from if work together on this when we are given little or no detail. Please add edits in green for now and later we can a final version edit.

Here it is:

”To give your friend any helpful comments on how to make go about making a decision on which route to go, I would need some more information.
Results on your

1) PSA test
2) DRE
3) Biopsy Gleason score

You also need to write out all your information for yourself anyway so this would be a good time to start it. You must have all this information to make the best informed decision you can on treatment. I cannot over emphasize this.

First would be your family history:

1) Did your grandfather, father, or your fathers have pCA (prostate cancer)?

2) Did your mother’s grandfather or father have pCA?

Second is your general health:

1) Think about how physically healthy you now are and what if anything you can do to improve that between now and the time you have surgery ( if that is the treatment option you pick.

2) Diet start right now eating low fat and lean meats in smaller portions (high cholesterol feeds cancer), more vegetables, fruits, and pomegranate juice. (the juice has been shown to slow ca growth)

3) Statin drugs are good if you’re on them, also shown recently to help slow growth.

4) Do you have urinary tract problems now like enlarged prostate, slow flow, trouble completely emptying your bladder, ect…

Third what now do you know from the doctor or doctors and if you don’t know these find out. (**this is important for you to know)

1) Your PSA number?
2) Was the DRE positive or negative?

a. If positive what were the details .How it felt to the doctor size and were, one side both sides?

3) Do you have BPH (Benign prostatic hypertrophy)? It means and enlarged prostate.

4) Biopsy report information:

a. Number of cores taken per side.
b. Out of those cores how many were positive pCA?
c. What were the percentages of the positive samples.
d. What is the Gleason score?
e. Was there any visual areas of suspect during the ultrasound used for taking the samples?
5) Have you had a Bone scan? The results?

6) Any other test and there results?

Fourth: Suggestions and questions:

1) First show this whole thing I written to your Urologist and any other doctors you see. Listen to their comments and make notes. Why? Because, for the most of us finding out we have pCA is enough of an emotional burden that we will not recall half of what is being said. Bring the wife in to take the notes also will help and the two of you will remember more of the conversations.

2) Ask them their treatment specialty because they will be bias toward that as your best option. They may be right… but then again maybe not.
3) Check all doctor reputations you see.

4) Was your biopsy read by a pathologist who is a specialist in prostate cancers? If not, have it done by one for a second opinion. I suggest hand carrying it yourself to him. Things can get lost and in the mailing/shipping systems and if does what do you do then?

5) Get at least another PSA ( I got three before surgery)

6) If you decide to have a RRP ( Radical Robotic Prostectomy) check up aggressively on the surgeon. How many has he done? My information worked out to 300 to 400 minimum operations, the more the better. Better results, easier recovery, and faster back to a normal life seem to go with more procedures done.

7) Keep in mind that everyone you read about or talk to will have their own opinion and theirs may not necessarily be the best option for you.

8) I suggest you go to this website and join there are some fairly smart lay people that can help you sort out this whole thing. Just don’t forget they are just people like you and me and may be bias toward what they did as far as treatment.
http://www.healthboards.com/boards/forumdisplay.php?f=28

There are other sites, go look at them too and read on as much as you can on the web but don’t let it overwhelm you with too much info. Again keep in mind not all of it is from reliable sources. I suggest going to:

http://www.cancer.gov/cancertopics/types/prostate for reading and education.

http://www.ncbi.nlm.nih.gov hardcore reading.”




Thank's all for your help in this.

Steve, post surgery all nerves saved, 31 days and two pads per day…

 
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Old 04-07-2011, 11:17 PM   #2
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Re: Giving advice to someone just diagnosed...

Hi Steve-
No need to reinvent the wheel. Why not refer him to the Prostate Cancer Treatment Decision Tool, which is the first sticky in this forum?
- Allen

 
Old 04-08-2011, 06:26 AM   #3
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Re: Giving advice to someone just diagnosed...

Great advice, Steve. First thing that I tell people is learn all that you can and then make the best decision (one that they are comfortable with) and then once the decision is made .... don't look back. Everyone is different and not every treatment is right for everyone. It's a personal decision that should only be made after reviewing all the facts and feeling comfortable with THEIR choice.

 
Old 04-10-2011, 12:40 AM   #4
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Kirkwood HB UserKirkwood HB User
Smile Re: Giving advice to someone just diagnosed...

Quote:
Originally Posted by Kirkwood View Post
Hello all,
I just received an e-mail from a friend who knew I had pCA and surgery asking for advice. As most of you will understand it is important to give advice as unbiased as possible so that they can make their own informed decision. At the time I had no information accept that he had been diagnosed. I know this can be improved on so help me do so.

Below is what I wrote to them......

8) I suggest you go to this website and join there are some fairly smart lay people that can help you sort out this whole thing. Just don’t forget they are just people like you and me and may be bias toward what they did as far as treatment.
http://www.healthboards.com/boards/forumdisplay.php?f=28

There are other sites, go look at them too and read on as much as you can on the web but don’t let it overwhelm you with too much info. Again keep in mind not all of it is from reliable sources. I suggest going to:

http://www.cancer.gov/cancertopics/types/prostate for reading and education.

http://www.ncbi.nlm.nih.gov hardcore reading.”




Thank's all for your help in this.

Steve, post surgery all nerves saved, 31 days and two pads per day…
Ok... here is his information in a nut shell:

69 years old, and to his knowledge, no one in his family on either parent’s side has prostate cancer.

“Fairly healthy” except for high blood pressure (takes Diavan), high cholesterol (Lipitor) and takes one 81mg aspirin/day. He’s had two knee replacements (10 years ago), and in 2005 or 2006, he had a stint put in his heart (90% blockage in main artery, which is the reason he takes aspirin).

1st PSA test result was 16.9, Nov. 2010, via primary care physician. Results were read by Lab Corp (who every doctor appears to use around here).
Antibiotics were given in the “hopes” he simply had an infection (which only lowered PSA to 16.1).

2nd PSA test result was 16.1, Jan. 2011, via primary care physician.

3rd PSA test result was 18.5, Feb. 2011, via Urologist, . Results were read by Lab Corp again.

DRE – prostate “felt normal” (by both doctors), but neither doctor used the term “positive” or “negative”. Dr. did say he's prostate was a bit small and it was not enlarged (PCP basically said the same thing).

Biopsy Gleason Scores were 6, 6 and 7:

12 total samples were taken & 3 came back positive for cancer. One sample had less than 5% cancer in it; one had a little less than 10% cancer in it; one had approximately 10% cancer in it.

Cancer was found in the right medial apex (0.8cm), Gleason Score 3 + 4 = 7, involving one of one examined core biopsy, comprising less than 5% of total tissue volume.

Cancer was found in the left lateral base (1.6cm), Gleason Score 3 + 3 = 6, involving one of one examined core biopsy, comprising approx. 10% of total tissue volume.

Cancer was found in the left lateral apex (1.7cm), Gleason Score 3 + 6 = 6, involving one of two examined core biopsy, comprising less than 10% of total tissue volume.


He's doctor basically told him that his options were surgery (via DaVinci) or radiation, and said “he would do well with either choice as both would be effective, but it’s a decision he (the patnt) will have to make”. I asked him “what if we take the wait and see approach”. Dr.basically said it wasn’t an option because of the rising PSA. The Dr.DID throw out the “possibility” of hormone therapy." Does throw out mean He feels it's not an option or is??"

His PSA tests and his prostate biopsy were all sent to the same Lab (again, it’s the one all doctors use around here from what we’ve gathered so far). I’d read that it was important to have a pathologist who is a specialist in prostate cancer read those results, but I have no way of knowing “who” read all the tests."

"I just fired off that question to the doctor's“Patient Navigator” to see if she could find out “who” read the biopsy results. In the meantime, I called Lab Corp and all they could tell me was “our pathologist” performs biopsy results, but they couldn’t tell me that person was a “specialist” in any particular field…just that they were “qualified”!"

"Anyway, I’ll see what Uro says and take it from there. Whether we can actually go pick up the tissue samples is beyond me or if it’s too late now."

Steve

Last edited by Kirkwood; 04-10-2011 at 09:34 AM.

 
Old 04-10-2011, 05:14 AM   #5
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Re: Giving advice to someone just diagnosed...

Hi Steve,

I'm responding to your post #4. I'm glad your friend is doing a lot to protect his health. He's already had some major challenges!

In my layman's view, he would likely not do well under active surveillance as the cancer is too aggressive (PSA, Gleason, etc.). Surgery would probably be a risky choice due to his age - borderline at 69 for anyone, but especially due to his serious cardiovascular issue that appears to be under control now; surgery is often rough and/or dangerous for such patients. That leaves radiation, likely with hormonal therapy, or some kind of hormonal therapy alone, all backed up with lifestyle tactics, some of which you have already suggested. A mild form of hormonal blockade, perhaps just finasteride or Avodart, but more likely bicalutamide plus either of those drugs, might be enough to give good control but with minimal side effects. At age 69 with substantial cardiovascular concerns, cancer control could well be the superior strategy to a cure attempt. On the other hand, radiation might also be a good choice.

Here are a couple of key points about diet: "low fat" is not favored by any of the experts I follow; rather, a diet low in saturated fat appears best. There are beneficial healthy fats, such as found in olive oil, nuts, and many other foods. Another key point is that its important to cut out all red meat and pork. Not only do they have a substantial amount of saturated fat, but they also have a lot of aracidonic acid, which fuels the cancer.

I hope he goes beyond the orientation level where you learn about the basic facts and options. I hope he becomes empowered by reading some of the books whose aim is to empower patients. If he reads just one, I hope it is "Invasion of the Prostate Snatchers" by Ralph Blum and Mark Scholz, MD.

Take care,

Jim

 
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