Prostate Cancer Web Site Study – Trust Me Just Check It Out…

As odd as it may seem, and I must admit it seems odd to me – but a young lady is working on her Ph.D. thesis which involves Prostate Cancer Web Sites and their relevance or help to those who need information.

I was introduced to her site through Dr. Richard Wassersug, himself a Prostate Cancer survivor. Dr. Wassersug and I are to meet on Friday as I feel his work with advanced prostate cancer may be beneficial to report on and include in my forthcoming book. Before our meeting, Dr. Wassersug e-mailed me and suggested that I participate in her study.

Today I elected to do so between interviews. I am interviewing men and their partners as part of my research for the book. The questionnaire was thorough and exposed me to several sites that I had not seen before. As most who read this blog know, ranking on google, is a function of a multitude of things, not the least of which is search engine optimization, keywords, etc. Therefore, some of the sites are a bit obscure but relevant nonetheless.

SUGGESTION: Help this young lady out in her research. Take the survey – I promise it doesn’t hurt (much less painful than a biopsy). I know poor joke. But then you have to laugh every once in a while.

As you evaluate the sites you may just find something new and helpful as we (I am a prostate cancer survivor) navigate these waters together.

REQUEST: I can’t help but request that if you or your partner has had an experience with prostate cancer…contact me. I would love to interview you. ESPECIALLY PARTNERS…There is a section of my book dedicated to you…so I need to hear from you. The interviews I conduct are confidential so not to worry about issues of identity. I can be reached at chuck@chuckgallagher.com or 828.244.1400.

HERE’S THE LINK TO THE SURVEY: http://porpus.org/ Enjoy the survey and if you find something that is helpful…please come back here to comment so that others can benefit.

Urologists Take Note – The Real Truth About A Prostate Biopsy!

At first I thought I was just a “wimp.” At the urging of my family doctor I went to a urologist for a prostate check. She (my family doctor) said my PSA was a bit high for my age – 4.58 PSA and I was 47 years old.

Now let me state…I didn’t even know what a PSA was until she forced the test when I was having routine blood work done. Something I hated as I had a fear of needles.

The urologist did the “bend over boy” routine finding nothing with his “DRE” – Digital Rectal Exam. Now I have to be honest, that wasn’t the most exciting exam, but all in all it didn’t cause me any great pain. But, as the urologist said, “Better to be safe than sorry. Let’s schedule you for a biopsy.”

Now let me be frank…I had no clue what to expect other than what my doctor told me. He said there would be some minor discomfort but mostly I would be annoyed by the sound of the instrument when the sample was taken. “Other than that,” he commented, “most men don’t really feel much.” I do recall asking if there was pain, and again, my urologist stated, “Most men feel very little. Nothing to be concerned with.”

I have been interviewing men from all around the English speaking world who have been diagnosed with prostate cancer. With few exceptions everyone reports the same thing. The damn biopsy hurts! When they report this, I ask a follow up question: “Did you tell you doctor this?” Their response – “Well, no, I just took it like a man.”

GUYS…WHAT A CROCK!

In Dr. Sheldon Marks book, “Prostate and Cancer” he describes the biopsy as follows:

In a biopsy of the prostate, multiple tiny sliver-like ppeces of tissue are obtained for microscopic analysis to see if cancer is present. These pieces are obtained through a long but very thin needle, specially designed to open inside the prostate, take the sample and then close.

For most men, biopsies can be done as an outpatient office procedure without anesthesia and with usually only temporary discomfort. Now we can get a good representative sampling of the entire gland with minimal trauma to the gland.

He is right…it is done outpatient most of the time. Where I beg to differ is on the pain issue. Thus far, well over 70% of the men I have talked with have reported that their urologist misled them when it came to what to expect and the pain. All but two men interviewed would, in retrospect, have desired pain medication before the biopsy. One man reported that had he known it would have hurt as bad as it did…he would never had submitted to the test. (Although the test might have saved his life).

Several men stated that they felt that ALL UROLOGISTS should have a biopsy on their prostate so that they would know exactly what their patient was going through. In that way, the urologist might be willing to volunteer provide some local anesthesia to reduce the pain and trauma.

Urologists…do you get the picture. What is reported to you is inaccurate (men don’t want to admit to their pain) and it (the biopsy) freekin…hurts – SO GIVE US SOMETHING TO TAKE THE EDGE OFF.

WHAT ABOUT AFTER THE BIOPSY? For most men normal functions – exercise, work, activity will all resume as normal either the next day or day after that. Now, when I say normal functions…that also includes sex.

I’ve scoured the Internet and seldom do I see PRACTICAL ADVICE that men need to know – so here’s some. A few days after your biopsy you may engage in sexual activity. Be prepared! When you achieve orgasm your ejaculation will be bloody. Guys I don’t mean a trace of blood, but bright red bloody. And, gentlemen, if you are unprepared for that, it can cause alarm. That alarm may be to you and/or to your partner. Nothing can change the mood of an intimate evening of sexual play than to achieve an orgasm and find that you look like you just hemorrhaged.

GUYS… The biopsy is necessary so in no way take this entry as anything other than solid information. Have it done, and more than once if necessary. My personal advice is – request pain medication.

Which Number Do You Know – Your Odometer or Your PSA? Prostate Cancer survivor Chuck Gallagher Raises New Question

In talking with a friend of mine the other day, he make an interesting observation – he said, “You can walk up to most any guy in America and ask him his odometer reading and within read he can tell you the number. But if you follow up with a question – ‘What is your PSA number’ the guy will look at you dumbfounded.”

I must admit…I was taken back by that astute observation.

So today…I decided I’d try it. After all, what did I have to lose?

I stopped by this hamburger joint today for a quick bite. (I know those who are into nutrition will chastise me for poor eating habits – I got it.) As I sat there a man with his wife and two children came into the restaurant. He looked to be in his forties…maybe pushing 50…maybe. Anyway, they sat down, looked at the menu and placed their order. By this time I was having lunch and mentally debating whether I would have the guts to conduct my experiment.

I finished. As I stood up to pay at the counter…I went for it. In a nice manner I approached this family. I directed my attention to the man and told him that I was conducting a survey – could I ask him a quick question. With a look of skepticism he responded – “O.K. – I guess.”

“Sir, do you know how many miles is on the odometer of your car – say within 2,000 miles?”

“Yea. 32,000 or there abouts. Say what’s this about,” he responded.

“One more simple question Sir, do you know what your PSA number is?”

His wife then chimed in and said, “Yea, what is your PSA number?” Somehow she was more aware than he of the importance of being checked and being checked EARLY!

He didn’t know – you could tell that by the look in his eyes. In order to help him out…I told him that I was a prostate cancer survivor and that one thing that I could do is help men become aware of the importance of regular checkups and early detection. Since one out of ever six men will develop prostate cancer sometime in their life…early detection just makes sense.

Attached is an e-mail (with identifying information removed) that a friend of mine sent me today. It illustrates the CRITICAL IMPORTANCE of early detection. Once you read the following … you’ll understand why this might save the life of the man you love!

I have been a reader of the mails and I cannot tell you what a blessing they have been to me as well as a help. I too, feel so much sorrow, pain and anger at what this cancer does to all those who whose lives get touched by it.

I am the wife of a man who has Type IV PCs. He was diagnosed last year (June), at the age of 51. Three years prior to that, he had a PSA done and it was 2.8. He was told it was well within the normal range. Feeling healthy and being busy, he skipped his physicals at 49 and 50. Then, only because he got sick with pnuemonia and a bladder infection at 51, did they do a PSA. It came back at 19.8

Long story short (if I can do that), the did a biopsy. Came back positive. Gleason 4+3, now PSA at that time up to 23.5 We were told that there was an 11% chance it had gone outside the prostate.

We read up on all the options and were going foward with HIFU in Canada. To ensure that we were not depleting our savings for something that would not work if the cancer had spread, we had the lymph nodes removed and biopsied. Well, HIFU was no longer an option as the cancer was in the lymph nodes.

My husband first went on Casodex and Lupron, then went for 25 tomotherapy treatments and finally had an HDR done last November. After two lupron shots, my husband elected to stop them (side effects were tough on him). It has always been our prayer that the tomo and HDR killed all the cancer. From what I have recorded since May of his PSA, I don’t think so.

May ‘08 – 0.05
Sept ‘08 – 0.28
Oct ‘08 – 0.51
Nov ‘08 – 0.67

He knows that going back on Lupron is going to have to happen. He just hates his life so much these days. From the lymph node removal, he has lymphedema and it is believed by his doctors that that surgery also caused some nerve damage. He has severe right heel pain and left leg spasms as well as back and hip pain. He has tried Cymbalta and Lyrica and cannot tolerate what they do to him mentally. He lives on Oxyncontin twice a day, supplemented by Vicodin when needed. He has never been able to completely empty during urination and holds 500cc-800cc in his bladder AFTER he has gone. So…he self catherdizes 2x a day. It hurts me so much to seem him in pain. He wants some sort of quality of life back.

I just do not know what, if anything, I can do. I help with the diet and supplements but it seems so insignificant. It is just so darn hard to hear doctor’s tell us that it is there job to keep him alive for as long as possible because there is no cure for him, just palliative care.

My heart breaks when I hear stories like this. While early detection won’t work in 100% of the cases…it will work in most.

So which number do you know – your odometer or your PSA?

The Poster Says It All – Prostate Cancer Awareness!

250,000 Men will be diagnosed with Prostate Cancer this year…and next year…and the year after that!

1 in 6 Men will be diagnosed with Prostate Cancer in their lives.

28,000 Men will die this year from Prostate Cancer.

And, Men have a 35% Greater chance of dying from Prostate Cancer than Women do from Breast Cancer.

If caught early, in most cases, it is curable! Get checked.

Thanks to DAN NEWMAN who is a Prostate Cancer survivor and works hard to promote early testing and detection! Both Dan and I found we had prostate cancer when we were in our 40’s. Get tested early…it just might save your life!

Prostate Cancer and African-American Men – Let’s Open A Can of Worms!

Today I had a wonderful opportunity to visit with my best friend. In order to frame this blog entry, let me state that I am Caucasian and he is African-American. That is irrelevant except in the context of a question that I posed to him.

Reality is – African-American men have a higher probability of developing Prostate Cancer than do Caucasian men. (As a point of reference – Asian men have the lowest rate of Prostate Cancer). Since it is medically proven that African-American males are predisposed to Prostate Cancer the question was:

Why are African-American men less inclined to have routine and early checks for Prostate Cancer – such as a DRE (Digital Rectal Exam) or PSA test?

I have asked that question of two African-American men – one who had Prostate Cancer (and like myself was a survivor) and, today, my best friend.

I was surprised by their answers – which were vastly different. I am going to provide both answers without attributing authorship to either.

I suspect that once read, I may receive a ton of responses and that, frankly, is the purpose. My point here is not in any way to be racist, but rather to expose an issue and create dialogue. If we can raise awareness – especially in the African-American community – then lives will be saved and the outcome will be worth the controversy.

RESPONSE ONE: “Well, Chuck, you must put this in historical perspective. Black men were brought to this country as slaves within the past 300 years. They (black men) were treated with less respect than the land owners farm animals. Therefore, unlike their white brothers, they (Black men) were illiterate and did not receive proper medical care. They were never taught the importance of medically taking care of themselves. Therefore, my generation (both men who commented were Baby Boomers like me) has come to know the importance of having regular check ups. My father’s generation did not. Hence, when they found out it was important, it was too late. Black men are behind overall in medical care and communication of the importance of preventative maintenance and testing.”

RESPONSE TWO: “Well, Chuck, I hate to say it, but African-American men are scared. Black men, in general, are homophobic, so the thought of someone sticking a finger or anything else, for that matter, is just unacceptable. It is just note part of what the Black man’s psyche is willing to accept. The other issue is sexual performance. A Black man is more defined by his sexual performance than a white man. The idea that a prostate cancer diagnosis may leave a man impotent or even partially unable to perform is enough to cause the members of my ethnicity to avoid getting checked. Sad, but many have said to me, they would rather be able to perform and then die of prostate cancer, than have their woman leave them and live.”

QUESTION: Do either of the responses resonate as true?

I would appreciate your comments as this discussion – perhaps more than the others thus far – has the potential for raising awareness and saving lives. Not only am I interested in providing solutions, but early detection saved my life and I have an ethical and moral obligation to spread the word.