Re: Meet Bud

[Guest guest]

Bud,

Just woundering why he said that surgery was not for you? If it's because of your weight, the Dr. that did me said he had done several men over 300 pounds with out any problems. Maybe it's because of your diverticulitis.

Good luck,

Rick

To: ProstateCancerSupport Sent: Sun, April 18, 2010 5:06:33 PMSubject: Meet Bud

I previously posted this message under the subject, "New Member." ThenI lost my post among all the others with the same title. Thus, Ideleted that message and I am re-posting.I am 62. Had trouble with weight control all my life. I got up to 397 before deciding that I had to take control. I ruined my colon on theAtkins diet nearly bleeding to death from diverticulitis 4-years ago,and I am still borderline anemic. Then, I joined weight watchers andbegan aerobics. I now weigh 284. I am on oral meds for diabetes,allergic to sulfa, erythromycin, and penicillin. Blood pressure isgenerally 130 over 80, with resting pulse of 64.Had a general blood workup in January. The PSA total was 4.8. But, the free PSA of 10% triggered a trip to the urologist. The prostate was only4centimeters. He took ten specimens for biopsy three weeks ago. I got a call a few days later from the receptionist that it was

malignant. Shemade an appointment in two weeks. I then waited patiently on pins & needles while the doc went on vacation.The day of my appointment, I called to confirm and was told that I wasn't on the calendar. It was an office error. I wanted to go screamingdown the streets. However they worked me in that day. Doc said thatfour of ten specimens showed cancer with 4 + 5 on the left side and 3 +3 on the right. Gleason score of 9.Doc says that we need to move quickly, and that surgery is not recommended in my case. I had a pelvis x-ray and full body ct scan onFriday (April 16) and will learn the results tomorrow. I plan to optfor chemo and radiation, though I plan to ask about the High IntensityFocused Ultrasound clinical trial study at Memorial Sloan Kettering inNew York.Comments?

[Guest guest]

(snip)

> Had a general blood workup in January. The PSA total was 4.8. But, the

> free PSA of 10% triggered a trip to the urologist. The prostate was only

> 4

> centimeters. He took ten specimens for biopsy three weeks ago. I got a

> call a few days later from the receptionist that it was malignant. She

> made an appointment in two weeks. I then waited patiently on pins &

> needles while the doc went on vacation.

That's awful.

If such a thing ever happens again (hope not) DEMAND to talk with

the medic, not the dropout running the reception desk. It's your

life.

> The day of my appointment, I called to confirm and was told that I

> wasn't on the calendar. It was an office error. I wanted to go screaming

> down the streets. However they worked me in that day. Doc said that

> four of ten specimens showed cancer with 4 + 5 on the left side and 3 +

> 3 on the right. Gleason score of 9.

Nine on the left, and a lot of it; 6 on the right. How much?

This is a good point at which to recommend always -- always! --

getting copies of all lab results. It could save your life. It

could catch errors (did so twice for me). It's not necessary to

understand them immediately; that will come.

> Doc says that we need to move quickly, and that surgery is not

> recommended in my case.

Is this doc a urologist? Bear in mind that uros are surgeons

first, last and always. If surgery is ruled out, then the next

(and IMO only) choice is a true cancer specialist, an oncologist;

preferably one who is well-educated in treatment of PCa.

Geographically, where are you located? Perhaps we could suggest

someone to consult.

> I had a pelvis x-ray and full body ct scan on

> Friday (April 16) and will learn the results tomorrow. I plan to opt

> for chemo and radiation, though I plan to ask about the High Intensity

> Focused Ultrasound clinical trial study at Memorial Sloan Kettering in

> New York.

Upon what is that plan based? Reason I ask is that one should not

be rushed into a treatment choice.

What do you mean by " chemo? " Androgen deprivation therapy?

Taxotere? Mitoxantrone? Ketokonazole? Other?

What sort of radiation? Please bear in mind that radiation

therapy and HIFU are local treatments. Anything outside the

treatment portal will not be affected, so the time and money is

wasted. In short, before deciding learn your status. Having done

that, you can select a treatment strategy that is the optimum for

YOUR case.

There are several tests that will help to build a portrait of

your particular case. We are all different, which is why

anecdotes from other patients are interesting but otherwise

worthless as treatment guidance.

It is not likely to kill you next week, or even next month,

although I think it would be unwise to delay *effective*

treatment for six months or a year.

Here then is my useless anecdote: I began this cliffhanger almost

seven years ago with a Gleason 4+5=9 in five of six cores on one

side and a missed 4+4=8 on the other that was found when a second

biopsy was done due to the failure of cryotherapy (which was an

inappropriate treatment, another story). The only straight story

I got from the uro was that I had a " high-risk " cancer.

Next and last, my essay for the new folks:

Welcome to the club no one wants to join.

I have some suggestions that will help to make well-informed

decisions.

Anecdotes contributed by other patients can be interesting, but

should never, ever, be relied upon as authority for one's own

decisions. In other words, what helps me might harm you and vice

versa.

" Find people who are more interested in helping you to learn than

teaching you what *they* think you need to know. "

-- Young, PCa Mentor

Phoenix 5

There is a lot to do.

(1) If applicable, I recommend having the biopsy specimens

examined by

a pathology lab that specializes in prostate cancer (PCa). Everything

that is done from here on depends upon the accuracy of the Gleason

scoring. Here is a list of such labs:

Bostwick Laboratories [800] 214-6628

Dianon Laboratories [800] 328-2666 (select 5 for client services)

Jon Epstein (s Hopkins) [410] 955-5043 or [410] 955-2162

Jon Oppenheimer (Tennessee) [800] 881-0470

Lucia (303)724-3470

This is a " second opinion " and should be covered by

insurance/Medicare. The cost, last I heard, was about $500. More

if further tests, which might be prudent, are ordered.

The chosen lab can give instructions on shipment arrangements.

In civilized jurisdictions, those specimens are the property of the

patient and not the medic, not the lab. Sometimes it is necessary to

educate them on that point.

(2) The authoritative website of the Prostate Cancer Research

Institute (PCRI) at http://www.prostate-cancer.org/pcricms/

is an excellent beginning.

See also http://www.prostate-cancer.org/pcricms/node/126 if newly

diagnosed.

Some access to medics who specialize in treatment (tx) of PCa are

listed via

this portal: http://www.prostate-cancer.org/pcricms/node/38

If a particular medic is not suitable due to distance (but there

are men who travel thousands of miles for treatment) or

otherwise, there is no harm and much possible gain in simply

asking for a referral.

There are also men whose primary medic is some distance away, but

who receive their routine treatment (tx) near home.

(3) I heartily recommend this comprehensive text on PCa: _A

Primer on Prostate Cancer_ 2nd ed., subtitled " The Empowered

Patient's Guide " by medical oncologist and PCa specialist

B. Strum, MD and PCa warrior

Donna Pogliano. It is available from the PCRI website and the

like, as

well as Amazon (30+ five-star reviews), & Noble, and

bookstores. A lifesaver, as I very well know.

(4) Personal contact with other patients can be very helpful. Local

chapters of the international support group Us Too can be found via

their website at http://www.ustoo.com/chapter_nearyou.asp

Regards,

Steve J

" Empowerment: taking responsibility for and authority over one's own

outcomes based on education and knowledge of the consequences and

contingencies involved in one's own decisions. This focus

provides the

uplifting energy that can sustain in the face of crisis. "

--Donna Pogliano, co-author of _A Primer on Prostate Cancer_,

subtitled

" The Empowered Patient's Guide. "