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Axel Holm lives in Arizona Santa Cruz County, USA. He was 67 when he was diagnosed on July 23, 2009. His initial PSA was 8.4 ng/ml, his Gleason Score was 3+3=6 and from what he says, it seems likely he was staged T1c. He is undecided as to his choice of treatment. Here is his story.

It's been 48 hours since I learned I have prostate cancer. I haven't had any real terror, but a few moments when I start to worry and wonder what's going to happen.

About me: I am 67 still single, have a 30 year old adopted son who was a foster child I adopted 17 years ago who had a VERY rough childhood. He is very upset. We live in Nogales, Arizona on US-Mexican border (which is a great place, not what you hear on the news). I have properties which provide an irregular income, but we're OK. I am deeply involved in local history and history in general - that's my passion. I also love collector cars. But as I type this having read some of the experiences of others who wrestled with the decision of radiation vs. surgery, I am in a state of controlled panic. My instinct is to tell you a story about the Mexican Revolution and forget this prostate stuff, but I have the orders here for a CT scan and a Bone scan to see if the stuff has spread. Also, orders to two doctors, one for surgery using Da Vinci and another for radiation.

My urologist said, "take it out, you're a very healthy man, you can take the surgery now and you'll be done with the problem." Seemed too simple. I saw my family doctor of 13 years yesterday and I trust him very much. He wouldn't make a choice for me, told me about incontinence, and the usual sexual problems, but I was focusing on whether or not the cancer may have spread. He said probably not, but being a careful guy he wouldn't commit, and I understand that.

I don't know if this Gleason score of 6 is really bad, or so-so or what. Reading some of the stories - some of which are horrifying - I feel unsettled. I wish I could go to a bar and have a weak scotch with about 4 or 5 "Gleason sixes" and just listen. I get the impression that every case is as individual as those who have been afflicted. I thought I'd live a long time, and for the first time I'm beginning to wonder.

Not much of a story, I suspect anyone who reads this may sense some panic between the lines. I don't know what to say, except I'll keep writing and hope someone emails me. Thanks to all of you, and you are one hell of a bunch who have been through hell and seem to have come out it. You are inspirational.

 

UPDATED

October 2009

 

 

Axel mailed me in response to a reminder and says he will update us as soon as he can do so - he has a number of issues that are keeping him busy. He said in part:

So if you will kindly bear with me for another 10 days or so, I will certainly post an update. Also, I have to answer individually the remaining 12 or so emails of support out of the 30+ I received. My first thought is this....where on this planet, is there anything like Yananow where complete strangers with a common affliction band together with such warmth, strength and persistent kindness to help a total stranger anywhere in the world, who regardless of friends and loved ones or wealth and wisdom, is for a time, overcome with quiet desperation. Yananow members relieved me of my anxiety and let me get back to work which I needed to do.

Axel was as good as his word - here is his update - I find it both amusing and interesting - I hope you do.

Since my first account on YANA, much happened. I never feared prostate problems - even cancer, always expecting medical science had a cure or was about to find one any moment. But being told I had cancer last July 23rd and that the best solution was Da Vinci surgery came as a jolt. My urologist emphasized that I am healthy 67 and could easily live another 30 years, which had the opposite effect, making me suspect his almost insincere upbeat manner. I was in trouble! Trying to persuade me my best option is to remove the cancer and run the least risk, he explained alternatives. Was surgery the only solution? Was this like appendicitis? Remove the appendix - only solution. Why was I being given choices? I'm not a doctor and didn't want to decide my treatment. I felt in a controlled state of panic, and so stated in my first posting on YANA.

Then came a flood - 30 or more - of the most marvelous emails. Never in my life had I experienced such kindness and warm friendship from strangers who genuinely made my problem theirs. Many have cancer more aggressive than mine, yet these fine fellows took the time to hold my hand in cyberspace and make sure I was all right. I was surrounded by new friends, more like guardian angels, all thanks to this splendid website, YANA. I tried to answer each email, but have about a dozen to go. My apologies to the rest, I will respond. To all of you I must say thank you, and I repeat here my deep and profound gratitude for all your comforting support.

Here's what happened after the diagnosis on

July 23rd: My PSA was 8.4, and Gleason 3 + 3. I began tests and consultation, forcing appointments at the earliest available dates. Meanwhile, the physician father of a good friend in Phoenix called me for a long chat, urging me to have the Da Vinci surgery. I thanked him. Da Vinci again and somehow the Mona Lisa smile now seemed sinister, not enigmatic.
July 29th: I had a bone scan which was negative. Relief.
July 31st: I met with a radiation oncologist in Tucson who took 2 ½ hours to explain the different treatments, side effects, the meaning the terms and numbers, predictions, etc. etc. He was generous and made me very comfortable.
YANA support emails began pouring in.
August 5th: I had a CT scan, which was also negative. The cancer is confined to the prostate. More relief. I began to relax.
August 17th: I met with a Da Vinci surgeon. He looked about 14, and I asked him (1) was he really a urologist and (2) did his parents know what he is doing. He gave me books, pamphlets - tons of reading material. We reviewed Partin tables, I was about 2%. Then he carefully explained everything as though writing a "PC For Dummies" manual, which I appreciated. He's done 700 conventional prostate removals and 240 Da Vinci's. "How many fatalities?", I asked factiously. He was very thorough, professional, courteous and reminded me whatever the measures, I have a cancer.
August 19th: I went to my GP, my family doctor, and had a thorough discussion about all my numbers, test results, and the reports from the other three doctors. I said I was not the least bit anxious and wanted to wait. He affirmed, saying he saw no reason why I couldn't take time to think this through, the same thing the other doctors said.

With business problems from this wretched economy more pressing, I stopped worrying about my damned prostate and in the shower one morning told my prostate that it was an annoying little walnut just acting out because it had a type of cancer which wasn't necessarily fatal SO COOL IT!! Back to financial matters, which for a self employed guy can always be a little dicey.

Last week I became concerned that I'd hurt my prostate's feelings and wanted to assure it that I was not neglecting its' situation and understood that a cancer was there, so I had another PSA as a gesture of concern. My prostate was very relieved to know its' PSA was down to 4.38. I told it I'd never quite believed the 8.4, and that it was overreacting. "Calm down," I said, and I followed the John Hopkins rules of "Don't Do's" before a PSA test. "See?", I said, "you're just having a little walnut anxiety, so calm down." But so as not to be too glib, I assured it that I will find yet another urologist who doesn't have a Da Vinci ax to grind or a radiated seed to sow, but will consult a wise old physician like Dr. Gillespie (remember the Dr. Kildare?), who can advise with appropriate prostate jurisprudence.

Prostate cancer can, justifiably, arouse great emotion. Last Tuesday I had lunch with a good friend, a retired USAF Major General, whose father was a "founding father" of the USAF and the 2nd Chief of Staff of the Air Force, General Hoyt S. Vandenberg. Sandy's Dad was slated to be the Chairman of the Joint Chiefs in the early years of the Eisenhower administration. Ike liked and admired the very capable young fighter pilot general. But General Vandenberg's health had been declining, and he kept putting off seeing a doctor. Finally, he went to a non-USAF doctor so as not to jeopardize his career. It was then, in 1953, he received the devastating news. A few months later, in 1954 at age 55, this brilliant young general died of prostate cancer. When I mentioned to his son, now a senior, that my PC was OK, under control and I wasn't worried, his face grew stressed, as he told me with a mix of anger and grief, "that's what killed my Dad, you know. Be careful." Yes, Sandy. I appreciate your concern and the reminder. I will be careful. As I left the luncheon, I wonder how U.S. foreign policy might have changed or been influence if General Vandenberg had lived to be Chairman of the JCS.

On my way home, I remembered my maternal Canadian grandfather, John Henry Oates, a mining engineer working at about my age in a remote part of Guatemala in 1955 became ill with prostate cancer and was dead at age 71 in March of 1956. I loved my grandfather, the tough adventurer in the wild who even survived capture by Pancho Villa in 1915. His death came hard to his 14 year old grandson. Part of his legacy to me may have been genetic, but to hell with that. I remember what a wonderful grandfather he was to me and what an incredible life he managed under the most primitive and violent conditions of the early 20th century. He was a survivor, but that sometimes passive and sometimes aggressive enemy of all men, PC, finally took him too. I won't go the way of General Vandenberg or my grandfather.

To all my new YANA friends, once again, thank you for all you've done. And to you who are just getting the dreaded news. Don't panic. Calm down, get all the tests, get all the information and find out where you are, keep yourself informed with a proper regime of PSA's and consider and weigh all the options. Your YANA comrades in arms are here to help you. Take the time you can, and then like Napoleon, consult with many and decide alone.

 

UPDATED

September 2010

 

Still waiting because something has gone haywire with my PSA and waiting for results. Appears to be infection, not cancer movement, but not sure yet.

 

UPDATED

February 2011

 

 

I confess that I haven't been seriously worried about my cancer after an examination by a urologist from Tucson, Dr. "S" on Dec 22. The background is as follows: for about a year, my PSAs were in the 4.0 range; in September 11, my PSA jumped up to 51.25 because of an infection. Got rid of that. Next PSA was Oct 22, it was 6.280, then checked again on Dec 21, the reading was 10.24, the day before an examination by Dr. Dr. Marvin Schultz.

Dr. Schultz, who is in his 70s, is the son of the first urologist in Tucson, Arizona. I gave him my entire prostate cancer experience. He was very calm and showed great personal interest. He did the usual physical examination and said my prostate felt normal. He said PSAs often jump around a great deal.

Then he said, "You haven't been very aggressive about treatment for your cancer, have you?" My first thought, was oh boy, I've screwed up, time has passed and I'm trouble for not having surgery or or radiation. I responded with a nervous and faint "No."

"Good. You're doing the right thing. Your chances of dying from this thing are somewhere between 1 in 150 to 1 in 120. All I do is study and think about prostate cancer - my life's work. It's the "Big C" that scares everyone. I've had all kinds of cases. I've seen PSA's as high as 1,000. So don't panic about your PSA. I don't like radiation treatment. The likelihood that you may have problems from the radiation, including cancer elsewhere is much higher than problems from the prostate cancer. And surgery? I've seen too many problems with that too. There's a lot going on in the prostate cancer world, and these two treatments have become very popular. That doesn't mean they're good for everyone. Keep doing what you are doing. Have a bone scan once a year, continue PSAs every 90 days, and see me every 6 months. We'll keep an eye on this cancer, and if there's a need to treat it, we'll do it with hormones. For now, don't do anything more and call me anytime you get worried."

My next step is a bone scan next Monday. Bone scan results will always be a big question, but I am going to follow Dr. Schultz's advice, which seems mores sensible than the past recommendations: I started with a local urologist who did the biopsy, discovered the cancer and urged me to have surgery soon. I went to see a urologist specializing in radiation - the seeds. He said I was a good candidate for radiation. Then to a urological surgeon. He preached the virtues of having the Da Vinci surgery (During a "cancer" conversation at formal dinner party, where I stupidly said I had prostate cancer, a rather strange woman, a doctor's wife, said this surgeon was THE best and I should have the surgery; if ever there was a turn-off, apart from being an inappropriate topic at a dinner table, that was it. Surgery seemed inappropriate too.). I didn't like the doctor's seeming over confidence about surgery. But it all boiled down to my choice. I don't remember having such dramatically different alternatives about medical treatment. No one said I would drop dead by morning, so I did nothing.

My GP was also cool to the idea of radiation and surgery and said some of his other patients were having problems. So sitting on my prostate cancer didn't seem so uncomfortable. My PSAs for the next year stayed at 4.0 for about a year, and I did nothing, until the infection. Then my GP said, take CIPRO and go to a urologist. But who? Since I am very involved in Arizona history, I was contacted by the chairman of the History Committee of the Pima County Medical Association who wanted a tour of southern Arizona. I said yes, and then interviewed the doctor who was also a long time Tucson rectal surgeon. I asked him for a recommendation for a urologist, and without hesitation he recommended Dr. Schultz. What I heard from Dr. Schultz was straight talk, no salesmanship, no BS.

Like I said, Monday is the bone scan. Hopefully it will be OK. If not, I may have screwed up. I will see Dr. Schultz after the scan, and we'll talk some more. I'd like his thoughts on cryotherapy, which sounds cool. But I will always know it was my choice, and there consequences to one's choices. I don't think prostate cancer will kill me. Probably a bus, or I'll slip and hit my head. Or maybe I'll fall over backwards in a fit of laughter and break my neck. Whatever it is, I've had a damn good life, and will squeeze out as much as I can in years, maybe even decades ahead. Wishing good luck to all my fellow PC inflictees, I am,

Ever yours,

Axel Holm

Axel's e-mail address is: acfholm at gmail dot com (substitute @ for at and . for dot)