September is Prostate Cancer Awareness Month and I am thinking what we can do to really shake things up — to make people really *want* to participate and help wipe out this disease once and for all. We need to shock people into AWARENESS!!!.
What a scandal it is that a doctor speaking about PC before an audience of his peers, had to start out by saying:
“I want you all to know that prostate cancer is not a trivial disease”.
“Trivial?” Tell that to the 30,000 men who die each year from PC .
Not only is PC a lethal disease, but contrary to public perception, it strikes younger men as well. Just browsing in some of the online PC forums today I noticed two new members of the “club”, one aged 41 and the other 51. This latter man is suffering from very advanced PC — his PSA is around 1150. And not long ago I had a woman write me that her husband was recently diagnosed with PC (at age 40), just when they had planned to start a family. So contrary to what people think, this couple were concerned with fertility issues, not retirement planning.
Recently the “PC screening controversy” reared its head again in the news. You must know that some cancer organizations, governmental entities and prominent doctors feel that PSA testing is a bad thing. I’m not going to get into the meat and potatoes of that argument. But I want to point out that in all these PC studies, the authors speak in generalities. For example, “Most men will die of some other cause” — likely in old age. The problem is, as one doctor wrote in her blog, “they leave out the subtleties“. In this case “the subtleties” are the men who suffer and die from PC, many of them in young or middle age.
These are the “Invisible Men“, because the medical establishment has written them off and the world doesn’t even know they EXIST.
I can tell you that, when my husband was diagnosed with PC (age 53), it was a big surprise to me that middle-aged people get this disease. And when I found out about the PC, I didn’t think it was a serious illness. After all, my husband’s urologist told us first thing, “Nobody dies of this”.
Too bad it isn’t true.
We have to face the fact that prostate cancer suffers from an image probem — it’s viewed as a “geezer’s disease” It’s true that the average man at diagnosis is 69, and people aren’t that sympathetic to diseases of the elderly. So what I am proposing is that, in order to tug at people’s heartstrings, we showcase the “youngsters” among us. Plaster their faces everywhere.
I remember when breast cancer awareness came about in a big way. The BC advocates used shock value — they put pictures of women without breasts or with mutilated breasts in widely circulated magazines. So people couldn’t look away.
What we need to do to to awaken the public to the scourge that is prostate cancer is to show the world photos of our young, handsome, athletic men in their 40’s and 50’s who are afflicted with PC. Fathers, most of them . Let them speak about the grueling treatments they have endured. Chemotherapy and chemical castration, among them.
Will anybody then say that prostate cancer is a trivial disease?
I have been thinking for a long time that what we need for PC is our own Michael J. Fox. He’s the actor who put Parkinson’s Disease on the map. Parkinson’s is an illness that affects mostly older people — just like PC — but it doesn’t *exclusively*affect the elderly. So here comes a young, attractive celebrity who makes himself a spokesman for Parkinson’s. Does it matter that Michael J. Fox doesn’t fit the description of the average patient who is diagnosed with Parkinson’s? No.
How many of you have NOT heard Michael J. Fox speaking out about his Parkinson’s?
Optimally we could get a *young*, well-known person to do for PC what Fox has done for Parkinson’s. You need to find someone who is brave enough to speak out in public. This is not an easy task, but it’s possible. I have to admit to having a “fantasy” PC spokesman in my mind — somebody who’s strikingly handsome, silver-tongued, young and African-American (because they are more susceptible). Unfortunately, this person, Barack Obama, is already taken!
Maybe what we need to do is *DIVIDE* prostate cancer into TWO diseases: one, “Juvenile PC” or “Junior PC” :-)), which strikes at and kills *young* men. The other, more benign cases, could be called just plain “Prostate Cancer”. I am serious about this. This is similar to breast cancer, where people differentiate between pre-menopausal and post-menopausal women. The younger women are a minority of BC patients, but they are the ones who get our sympathy and attention.
You mature guys, I hope you know not to take this personally. The rising tide lifts all boats.
Leah,
I am one of the older, more mature, guys (I am 56) and I am pleased that you are challenging us all to raise the tide for everyone.
I am so proud of you and the messages that you shout from the rooftops. Let’s hope that your message here is the beginning of a great nationwide movement to make the public aware of the terror that is prostate cancer. We must educate men and women and the medical world about the need for early diagnosis and we must push researchers to find a vaccine or cure. Along the way, we must improve treatments to minimize devastating side effects.
Three cheers for you, Leah. Thank you for your excellent efforts.
Jerry Perisho
My husband passed on July 14th of 2008 from recurrnt prostate cancer that was initially treated in 1998 with Radical prostatectomy he was 54 years old and was 44 when diagnosed. His Stage was T2B and all his margins were negative . It came back after seven years and it was only psa climb without any symptoms and negative bone scans. until last year the scans became positive for mets and started hormone therapy with which he responded well for 5 months nearly then psa started to climb back up again then second line hormone did not work then pain started in February of 08, started Taxotere in March 08 psa kept climbing but with less intensity and pain was better for 2 months then on June 2nd 08 the last chemo he took he reacted to the chemo complaining from pain then doc put him on morphine which caused him to throw up and have diarehea lost 20 pounds in two weeks then came the down fall where doctors were negligent in taking care of him his psa reached 600 his calcium was normal we did not what caused his demise . I am still not recovered well enough to go to the
Centers where he was treated and investigate about what went wrong. anyways Prostate cancer kill young men and because of money and the percentage of those men is not high research is far behind . There is no medicine to fight prostate cancer and their only cure as they claim is to catch it early and remove the organ by surgery. Wow didn’t we do that ten years ago ? why it came back and to the bones. We were told to have the surgery so that it will not go to your bones and we want you to live to be seventy. Wow nice ,it did not happen . They know nothing and have nothing . Old men do not die from prostate cancer because it is a different kind of cancer that strikes young men , totally. My husband went in three weeks .
Leah,
I find it strange almost, that we can both make a huge list of famous men who are living with prostate cancer and not anyone really taking it to the net and our government. Michael J. Fox was very popular with the young crowd, and maybe better looking than I. So we need that young, handsome, popular, unfortunate, prostate cancer patient ~ uh, that’s a tall order for the “old guys disease”. I’ll volunteer, but nobody ever thought of me like they did Mr. Fox. Maybe we need to make me rich and famous, first. It’s OK…I’m game. Thank you for your wonderful writings, and I’ll see you around!!! Peace!
Tony
Hi,
I just found your blog. My husband (age 38), was diagnosed with prostate cancer on July 30, 2008. He had surgery on September 5th.
What a scary place we find ourselves in – thank you for your voice.
Stephanie