Medical Forum / Diseases and Disorders / Prostate Cancer / October 2005
Easier After Five Years
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Steve Kramer - 25 Oct 2005 01:57 GMT It's time for my annual diatribe on catching prostate cancer. As usual, y'all that have been through this with me can click on the next message.
DIAGNOSIS
I have to go back to 1999, because it was then that I did not get the PSA test that might have saved my life. My PSA during 1998 must have been 'okay' because the results were never brought to my attention. During 1999, I'm sure I would have been diagnosed had I gotten my PSA, but instead I had a bout of diverticulitis and put off my PSA for a couple of months, then a few months... next thing I know, I'm having my blood extracted October 17, 2000. You know where you were when Kennedy was shot? When the shuttle went down? When miniskirts went out of style? Well, I was sitting in my office, staring out the door, when the nurse on the other end said, "the doctor wants to talk to you." My PSA was 16 and I was sure my dad's disease was going to kill me by the time I reached 50.
My GP refers me to Peter Shank. I thought it was a joke, but that's just what they call Reed L. Shank, III. Dr. Shank is the best urology surgeon in the City, or so Cincinnati Magazine says, so I was in good hands... 20% of which was up my butt within a week. He told me he felt something funny, but it didn't sound like "ha ha" funny. He also told me there was a 33% chance I had cancer. He wanted me to have a biopsy. On November 1, 2000, my cancer is confirmed. I was introduced to words like "Gleason," "Stage," and "Radical Prostatectomy." Little did I know these would dominate my life for awhile.
SURGERY
I "opted" for surgery. I did not really have an option. Dr. Shank said I was 46 and that is awful young for this disease (note: at least 30 on this NG were younger upon their dx) and surgery is the only choice.
During the first week of December, I took my bride of 25 years on a cruise for our anniversary. During the cruise, I kept up a regimen that I had recently started; walking 17-minute miles for two miles. Arrived back in town on our anniversary, December 13. On December 15, 2005, I walked out of my house for the last time as a whole man (unless you want to count those teeth I lost in '71).
When I woke up, I did not open my eyes, but my doc was telling me in recovery that my cancer was one of the most aggressive he's seen, but he thinks he got it all. My post-op biopsy said different. While I had clean margins, my seminal vesicles where involved.
A bit of information here; I was still in the hospital to get my biopsy results. The epidural that I still praise long and loudly has one possible side effect and that is putting to sleep the ileum. The ileum is a valve between the large and small intestines. My ileum is a lazy piece of crap and slept for seven days! So, December 22, 2000, it woke up, I pooped, and I was out of there December 23.
RECOVERY
Home by Christmas Eve. I cannot tell you how important that Christmas Eve was to me.
I slept well each night and took two naps daily. By the third day, I was pacing the house, even going to the basement looking for something to do that didn't require an 8-pound (3.6-kilo) lift. Within a week, I was down to one nap a day.
On January 2, 2001 I lost the catheter. CELEBRATION!!! I was in diapers, but that was a lot better than that tube and bag! I slept dry at night and generally went through one diaper a day. After 5 weeks and 6 days, on February 25th, I graduated to pads.
Not coincidentally, the next day, I went back to work. Two weeks later, I was working without restrictions.
Several months later, I realized I was throwing away dry pads, so I stopped using them.
SEX
After a few months, my doc gave me Viagra. It didn't work. We then tried caverject. Hypodermic needling my penis was not what I would call fun, but it did give me a useable erection. Unfortunately, I now had a short penis. Pump! The pump worked really well, but the rings didn't and after a few times trying, my wife lost interest. Suddenly, May 12, 2002, I had an erection all on my own. That was a nice night.
RELAPSE
It is not really a relapse, but a failure. The surgery didn't get everything and by May 2002, my PSA was rising. At first, "undetectable" became 0.1. Then 0.27. When it hit 0.37, my doc says I gotta get radiation. I can still remember where I was. His office, Room 6, sitting there, staring at the bed with the stirrups at the end.
So, it's off to the oncologist. The onc sets me up with 35 rounds of external beam radiation treatment. He x-rays me to find out where my prostate bed is and surrounding organs are. He marks my skin with ink markings for something to aim at. On Monday the next week, I am told to drop my pants and get on a table. For 20 minutes this machine is moves around me and is pointed at the ink marks. I get up, get dressed, and go back to work. This goes on five days a week for seven weeks. On July 3, 2002, my radiation is complete and I hope I am cured.
During radiation I continued my walking. I was now up to 3-5 miles, 3-5 days of the week. I also drank gallons of water daily and went to bed one hour earlier every night. Because of this regimen, I believe, my side effects were minor and none lasted more than a week after the radiation stopped.
NOT AGAIN!
My PSA was going down, just like it's supposed to (0.34, 0.22, 0.15). Then it started back up (0.21, 0.32), so I went on Lupron during July 2003. I suffered hot flashes in the beginning, but no longer. I can have sex, I just don't care to.
LIFE CONTINUES
So, last week I had my blood drawn. I waited until I got around to it. I had the results sent to my doctor. I just wasn't all that excited about it. My doc showed them to me. My PSA is going up again. But, it gets easier after five years. This time, I won't remember where I was at the time I found out. It will meld into all the other days of my life.
Why? Because, I now know that life didn't end in 2000, nor 2002, nor 2003 or now. Since my cancer Dx, my uncle and father-in-law have died. Several in my family were dx'ed with cancers; my son with testicular, his wife with cervical dysphasia (which will likely be cancer some day) my brother-in-law with lymphoma, my cousin with colon, my sister's father-in-law with lung (funeral was today), and my sister-in-law's sister with breast (won't make to Christmas). My sister-in-law is in a nursing home with radiation damage to her brain. My mother-in-law has been in and out of the hospital with lympho-something that causes her legs to swell grotesquely. My mother has had four operations on her broken femur then hip. My daughter probably has MS "or something worse."
But, on the positive side, in those same five years, I transferred to me dream job and have high hopes of retiring from there. My wife retired and we live in a 2300 square foot condominium that is nested in the woods. My son and both daughters married, bought houses and produced for me three grandchildren. Both the Reds and Bengals are winning half their games.
Life is still good and I expect ten more years of it, minimum.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05 PSA .07 .05 .06 .05 .08 non Illegitimi carborundum
Dick Smith - 25 Oct 2005 16:14 GMT Steve, You message will save the life of others. Why do I say that? Because my father had PCa just like yours did. After reading your messages, I realized to try and beat this damn thing I have to get my PSA tested early and every year, and I'm going to make damn sure I'll do everything I can so this freakin beast doesn't get me, like it did my father. So I started last year at the age of 37 and will continue every year.
Steve Kramer - 25 Oct 2005 23:05 GMT Thanks Dick. It means more than you know.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05 PSA .07 .05 .06 .05 .08 non Illegitimi carborundum
> Steve, > You message will save the life of others. Why do I say that? Because my [quoted text clipped - 4 lines] > father. So I started last year at the age of 37 and will continue every > year. Dick Smith - 26 Oct 2005 23:43 GMT Steve, Some how my message to you was deleted...
:-( (I should get my own newsreader instead of relying on Google.)
Anyway, I've scheduled my next PSA test next month on my 38th birthday. I remember you telling me that I'm, way ahead of the game...Funny as my GP suggested I don't need to be tested until 50, eventhough it runs in the family!
Let's hope the .08 was just a fluke
BTW, Steve, how old was your father when he was Dx with Pca?
USC Gamecock - 27 Oct 2005 01:12 GMT Dick -- I notice that we're the same age. I was diagnosed June 22, 2005 at the age of 37 (turned 38 a little over a month later). Had RRP at Johns Hopkins on Aug 12. My Dad was 55 when diagnosed, his brothers 66 and 75 when diagnosed. I'm participating in a study with Walsh/Partin at Hopkins on the potential genetic causes of PCa. My hope and prayer is that we figure this out before my 8 year old son faces what his Poppa, Daddy, and Great Uncles have faced.
Keep me posted on what you find out. Did I miss anything? Have you been diagnosed, or just concerned. Feel free to shout at me since we're both "young"!
Dick Smith - 27 Oct 2005 18:26 GMT No, I'm not Dx. Just concerned. I know my dad wouldn't want me to end up in his fate, so getting tested early and being aggressive with it, makes since. Last year was my first year to get tested. It was .8 I'm assuming this will result in a higher probability of getting PCa within the next ten years.
My main interest is to watch the trend. I guess for now, this is all we have to go with as there is no test available yet to detect which type of cancers are more aggressive.
My next decision will be is, what to do when it gets to 2.5. I imagine I'll get a fPSA and a biopsy done.
Steve Jordan - 27 Oct 2005 18:47 GMT > No, I'm not Dx. Just concerned. I know my dad wouldn't want me to end > up in his fate, so getting tested early and being aggressive with it, [quoted text clipped - 8 lines] > My next decision will be is, what to do when it gets to 2.5. I imagine > I'll get a fPSA and a biopsy done. Dick is being prudent. Would that other men would do likewise.
I recommend looking into certain other tests:
uPM3 urine test, which I'm told is 81% accurate in detection of PCa, compared to 43% for the PSA test.
Normal PSA calculation. GV (gland volume in cc) x 0.066=amount of PSA related to benign prostate cells. See Strum & Pogliano, _A Primer on Prostate Cancer_ Second Edition (2005) page F-4. Information can also be found on the website of the Prostate Cancer Research Institute at http://prostate-cancer.org/index.html Any PSA in excess of the calculated norm should be considered to be PCa-related until proven otherwise.
Regards,
Steve J
"What are the facts? Again and again and again -- what are the facts? Shun wishful thinking, ignore divine revelation, forget 'what the stars foretell,' avoid opinion, care not what the neighbors think, never mind the unguessable 'verdict of history' -- what are the facts, and to how many decimal places? You pilot always into an unknown future; facts are your single clue. Get the facts!" --Lazarus Long
Dick Smith - 27 Oct 2005 19:58 GMT >>Normal PSA calculation. GV (gland volume in cc) x 0.066=amount of PSA related to benign prostate cells. Steve, interesting. Never seen this before. The problem is, I don't know the size. I guess I would have to have an ultrasound to find out.
Steve Jordan - 27 Oct 2005 20:11 GMT Quoting me:
>>>Normal PSA calculation. GV (gland volume in cc) x 0.066=amount of PSA related to benign prostate cells.
> Steve, interesting. Never seen this before. The problem is, I don't > know the size. I guess I would have to have an ultrasound to find out. Well, I'm not so sure that it would be necessary at this point with the relatively low PSA to go to the trouble. Nor am I so sure that it would indeed be "over-egging the pudding."
The GV calculation is from the Strum & Pogliano book and is also covered on the PCRI website. I think that use of those two sources would prove to be enlightening and would give Dick the kind of knowledge base the rest of us wish we had had when the war began.
Regards,
Steve J
Dick Smith - 27 Oct 2005 20:16 GMT I assume the units are in mL? ...So based on my calculations, if I'm Pca free, my prostate is roughly 12mL.
>>Well, I'm not so sure that it would be necessary at this point with the relatively low PSA to go to the trouble. Nor am I so sure that it would indeed be "over-egging the pudding."
Agree.
Steve Jordan - 27 Oct 2005 21:14 GMT On October 27, Dick Smith wrote replied to me:
> I assume the units are in mL? ...So based on my calculations, if I'm > Pca free, my prostate is roughly 12mL. No, sir. The unit of measurement is cubic centimeters. The only way to obtain an accurate volume figure is to do an ultrasound exam, as Dick has mentioned.
I do see what Dick is doing with the manipulation of the formula GVx0.066=normal PSA. I'm certainly no mathematician, but I doubt that his calculation (PSA /0.066=GV?) results in a useful figure. Can't say why, just instinct telling me that the result is unreliable. Maybe 'cuz there's only one PSA figure, not an average over time.
Regards,
Steve J
Peter Headland - 27 Oct 2005 21:37 GMT >> I assume the units are in mL
> No, sir. The unit of measurement is cubic centimeters. Proof, if proof were needed that Americans really do not know anything about the metric system (in which 1mL = 1cc).
 Signature Peter Headland
Steve Jordan - 27 Oct 2005 22:17 GMT >>>I assume the units are in mL > >>No, sir. The unit of measurement is cubic centimeters. > > Proof, if proof were needed that Americans really do not know anything > about the metric system (in which 1mL = 1cc). Correct. *But* the units used in the literature I've seen are ccs.
Regards,
Steve J
Steve Kramer - 27 Oct 2005 21:26 GMT Dick,
You're likely to be .08 for a long while. But, if next year your are .16 and the year after your are .24 you need not wait until you get to 2.5 to get a biopsy.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05 PSA .07 .05 .06 .05 .08 non Illegitimi carborundum
> No, I'm not Dx. Just concerned. I know my dad wouldn't want me to end > up in his fate, so getting tested early and being aggressive with it, [quoted text clipped - 8 lines] > My next decision will be is, what to do when it gets to 2.5. I imagine > I'll get a fPSA and a biopsy done. Dick Smith - 28 Oct 2005 03:05 GMT Hi Steve, Last year I was .8, not .08
Wish it was .08, but from my understanding anything around .5-.8 is Ok (I assume).
Steve Kramer - 29 Oct 2005 02:31 GMT Sorry. But 0.8 is still good and you are still looking at progression, not a one-time score.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05 PSA .07 .05 .06 .05 .08 non Illegitimi carborundum
> Hi Steve, > Last year I was .8, not .08 > > Wish it was .08, but from my understanding anything around .5-.8 is Ok > (I assume). Steve Kramer - 27 Oct 2005 02:31 GMT > BTW, > Steve, how old was your father when he was Dx with Pca? He had pain during sex at the age of 40, but the doc thought he was too young to consider PCa. That was 1972. By 1974 he was diagnosed (Age 42) with a "spot on his pelvis." They only had surgery adn colbalt radiation back then. Oh, and estrogen. He died during 1982 (Age 50).
judamd@aol.com - 25 Oct 2005 16:20 GMT Thanks for reposting your diatribe. I had not seen it during the last couple of years I've been here. Looks like you've been through the grinder yet you still have a positive outlook. Good for you.
I was especially moved by what's happened to all your relatives - most a lot worse off than almost all of us in this newsgroup. I can't help but think of a lovely young lady friend of mine - now about 40 - who was diagnosed with brain cancer in 1998. Since then she's been in and out of radiation treatments whenever a new tumor shows up. Also, every time she gets radiated, a small part of her healthy brain gets zapped too which causes her to lose some function. Is this what happened to your sister-in-law? Whenever I think of my friend I also think how lucky I am.
Anyway, looks like you are hanging in there and putting up the tough fight. And thanks also for all your posts here making this newsgroup valuable to so many of us. Dave Perry
Steve Kramer - 25 Oct 2005 23:09 GMT > I can't help > but think of a lovely young lady friend of mine - now about 40 - who [quoted text clipped - 3 lines] > too which causes her to lose some function. Is this what happened to > your sister-in-law? Yes. Many years ago she was a thriving textile designer designing for London Fog, that little Polo thingy on Ralph Lauren, etc. She lived in a nice apartment with a view of the UN. Then she was dx'd with a benign, but growing, tumor at the base of her skull. It was cut out and radiated. And she was fine.
Years later, she started losing short term memory. She'd go to meetings and forget what she was asked to design. Eventually, she'd take a tape recorder with her and after that just lost customers.
Heavily in debt and after an auto accident where she clearly didn't recognize what was going on, she came home. Several years later, she is in a nursing home, hopelessly in debt and doesn't realize her radiation damage is continued and fatal.
David S. - 25 Oct 2005 17:30 GMT Steve: I wish I had some words that would help, or that there was something I could do that would help, but I don't. I will just echo what some of the others have said about the ultra sensitive tests and that maybe the increase in the PSA is really not a trend but just a result of something in machine calibration or a variation in a batch of chemicals used in the testing. As I have said to some of the others here with more than their share of life's burdens, you have shown a great deal of inner strength in the manner in which you have faced the challenges presented and maintained a healthy positive attitude. God bless you and good luck. Thank you. David S.
Steve U - 25 Oct 2005 22:43 GMT Steve Kramer, I'm not usually moved by diatribes. Yours is an exception. Thanks for posting it, and good luck. Steve U
I. P. Freely - 26 Oct 2005 03:31 GMT > I'm not usually moved by diatribes. Yours is an exception. Ditto, in both content and presentation. Statistics say I'll be following your footsteps as the years reel by, so I could easily insert myself into your story. Maybe that's why it rang true.
Leaves me glad about many of the decisions I've made the last 40 years, especially lately. Thanks.
I.P.
JerryW - 26 Oct 2005 00:24 GMT Steve,
Thanks for reposting your "diatribe." And, thanks for all the support you've provided me and many, many others in this newsgroup. I can only hope you will persevere in your long fight with the "Illegitimus," and that you will prevail.
 Signature JerryW jweindel at flash dot net
2/11/04 PSA 2.6, Suspicious DRE (age 62) 2/23/04 Biopsy: Gleason 3+4=7, T2a, left lobe 5/18/04 RRP, Path: Gleason 4+3=7, T2c, both lobes 7/13/04 PSA <0.1 10/12/04 PSA <0.1 1/18/05 PSA <0.1 4/26/05 PSA <0.1 10/13/05 PSA <0.1
> It's time for my annual diatribe on catching prostate cancer. As usual, > y'all that have been through this with me can click on the next message. etc.....
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