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

November 13, 2008

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 researchprostate-cancer-cover-3d 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.

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Prostate Cancer, Disability and Vietnam Veterans…

November 10, 2008

While this entry may be short the benefit may be great. As many who read my blogs know, I am writing a book on Prostate Cancer (from a layman’s perspective). As part of that process I am interviewing men from all around the world – talking with them about their experiences – both physically and emotionally.prostate-cancer-cover-3d

Today in that process, while talking with a man who completed his treatment two months ago, I was introduced to something that I had not heard before. Now let me state at the outset…I am not a doctor and do not always have the time to verify everything that I am told. This, however, seemed important enough to disclose – knowing that those who would be affected by the data – either can confirm that it is correct or know it to be true.

In the interview, the following was said:

“Are you aware that anybody who was in Vietnam will be granted 100% disability for six months on this deal?” He was discussing prostate cancer and the related treatments.

“No really,” was my response.

“Make sure you pass that one. Anyone who was in Vietnam – I don’t care if you were there for a day – you will get $2,500 and some odd dollars a month for six months and then they will re-evaluate it after that.”

“Is that because of any connection with ‘Agent Orange’?”

“Yes.”

While there are many men I am talking to who are younger, the vast majority of men who are being diagnosed today with Prostate Cancer are of the Vietnam era age and potentially could receive this benefit – assuming it is accurate.

YOUR HELP NEEDED: For those who may read this, please confirm what I was told today is true. Not that I doubt my source, I just feel that it is best to have verification. If you are a Vietnam era vet and have been diagnosed with Prostate Cancer – what has been your experience?

http://linkinghub.elsevier.com/retrieve/pii/S0022534705660855

http://www.sciencedaily.com/releases/2008/08/080805092016.htm

http://health.usnews.com/articles/health/healthday/2008/08/06/study-links-agent-orange-to-prostate-cancer-in.html

http://www.vva.org/prostate.html

http://www.vba.va.gov/bln/21/benefits/herbicide/aono1.htm

http://www.prostatecancerfoundation.org/site/c.itIWK2OSG/b.4415327/k.C579/Study_Links_Agent_Orange_to_Prostate_Cancer_in_Vietnam_Vets.htm

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

November 10, 2008

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 wouldistock_000002146611small 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.

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What We Eat, How Long We Live and Prostate Cancer – Is There A Link?

November 9, 2008

Well…I’m not sure how to approach this. I have mixed feelings cause my comments will be directed 100% at me. Hopefully as you read them you’ll understand where I’m coming from and perhaps, YES PERHAPS, you’ll do what I have chosen to do – TAKE ACTION.

You see…I am a prostate cancer survivor. I’m just a regular guy like anyone else – right now, happy to be alive. I’m one of the lucky ones – I seem to be cancer free (and hope it stays that way).

When I was first diagnosed I did what just about every man I’ve talked do did (or had his partner do), I went to the internet and researched, bought all the books I could find and tried to figure out what to do. I didn’t want to have cancer and I did want a quality of life (assuming that life was an option).

One thing I quickly read was the direct correlation between diet and prostate cancer. It seems that most Americans don’t eat real well. In other words we eat a lot of what we shouldn’t or a lot of what contributes to cancer growth. Big juicy steaks along with high fat diets don’t help when it comes to fighting or “preventing” cancer. Now, let me say…I am not sure that anyone suggests that diet along can prevent prostate cancer, but prostate cancer is lower in populations who have substantially different eating habits that do we Americans.

So to the point…

Some of my regular readers know that I am writing a book on Prostate Cancer and have been doing caseprostate-cancer-cover-3d research to support the book. Thus far less than 5% of the men surveyed – when asked the following question responded – YES. Here’s the question: Once you were diagnosed with Prostate Cancer did you change your diet? The follow up question is: After your treatment for Prostate Cancer did you change your diet?

Most men responded that they did not change their diet at all. In fact, recently one man stated, “Well, after I found out I had cancer it was too late. I figured then I may as well eat the damn steak, the damage was already done.”

Other men reported (and they were a minority – and frankly I would be included in this bunch) that they did change their diet before surgery (or treatment) but once they either had the prostate removed or felt they were cancer free – they (we) went back to our old eating habits. “After all,” as one man reported, “I don’t have a prostate to worry about now.”

I have to admit that writing a book and doing the related research is interesting. When doing that you find that you generally read what others have written in order to do a thoughtful and thorough job. In doing so I was reading by Sheldon Marks, M.D. entitled: Prostate and Cancer – A Family Guide to Diagnosis, Treatment and Survival. In his book the following is written that got my attention. Read it and see what you think.

I had thought David M., a successful businessman in his early 60’s with a fairly aggressive prostate cancer, understood the importance of diet and nutrition. Following a successful prostatectomy, he returned for his follow-up visit. I learned that he continued to eat a high-fat diet. He felt that as long as he took a few supplements, he was fine. He didn’t understand that supplements along weren’t going to make a difference – until the cancer returned. Following additional treatments and a change in his diet, David is doing well, with no evidence of cancer recurrence.

As I read that entry from Dr. Marks book – the words that hit me were: “until the cancer returned.” Now three and one-half years cancer free – perhaps it would be in my best interest to change my diet. I would rather be cancer free and eat right than eat poorly and hear those words said to me.

So what to eat…istock_000000408678small

Basically a Southern Mediterranean diet – per Dr. Marks: garlic, tomatoes, red wine, fresh fruits, fresh vegetables, low in beef and dairy products. Likewise, fish, minimal meat, plenty of soy and green tea work as well – a Asian diet. Here’s a list of Prostate friendly foods: Herbs, Soy, Tomatoes, Red Grapes, Peas, Citrius, Raspberries, Strawberries, Blueberries, Apples, Watermelon, Rosemary, Fish, Aged garlic, Green tea, Spinach, Broccoli, Cauliflower, Carrots.

Which would you rather hear – (1) Wow…you’re looking good, must be eating healthy; or (2) I’m sorry, but your cancer has returned? Don’t know about you, but my eating habits have changed!

Some Links for you:

http://urology.jhu.edu/newsletter/prostate_cancer512.php

http://www.healthcastle.com/prostate_cancer_diet.shtml

http://www.malecare.com/prostate-cancer-diet_47.htm

http://www.malecare.com/milken’s_prostate_cancer_guide.htm

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

November 7, 2008

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. istock_000005003506small

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?

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The Poster Says It All – Prostate Cancer Awareness!

November 7, 2008

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.

prostate-ribbon_new

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!


Male Erections and Ejactulation Following Prostate Cancer Treatment – What’s the Real Deal?

November 6, 2008

chuck-web-photoI must admit it is a bit unusual when taking on the task of writing a book about a subject that – through personal experience – and now research – I have become a subject matter expert. I have to be honest and say up front, I never really wanted this knowledge – for that matter I didn’t want to find out that I was diagnosed with Prostate Cancer at age 47. But, everything happens for a reason…and I guess that mine role is to be open about the experiences and provide a reality check for men and their families.

Now…some three years later as a Prostate Cancer survivor, I am conducting interviews with men from all around the world about their experience with prostate cancer. My goal…to produce a book and perhaps CD or audio recordings that will explain the realities about Prostate Cancer – what options are available and what you can really expect when it comes to treatment and side effects.

Let me caution – I am not a doctor, not involved in the medical community and don’t represent any drug company that may be trying to persuade you or someone you love to seek a certain option. I am a professional speaker who, just by chance, found out he had prostate cancer.

So, the purpose of this blog is to provide up to date information to men and their partners about Prostate Cancer and the emotional issues that you may face. You may not want to hear what is written, but I promise that it will be practical, useful and accurate. That said…let’s talk about prostate cancer, erections and sex.

Before I began tonights blog I was on the phone with Richard S. – he gave me permission to use his name – although I can’t begin to imagine how many Richard S’s there are in the world. Sorry, I digressed! Anyway, Richard was diagnosed less than a year ago with Prostate Cancer and in May had his treatment of choice – HIFU (High Intensity Focused Ultrasound) a treatment I considered.

Like most of the men I’ve interviewed for this book (I am still conducting interviews if you would like to share your experience contact me), if nerve sparing techniques were used and the prostate cancer was localized, the ability to gain an erection was reasonable. The problem is very few will define for you want an “erection” is after surgery. Now I can hear some folks now saying – “What’s he talking about, I know what an erection is?”

FACT: Not that my research is complete, but thus far no one I’ve talked to has told me that the erection they achieved following treatment was as satisfying of substantial as before their treatment. I ask this question: “On a scale of 1 to 10 with 10 being an erection like you had when you were 17 years old, what number would you assign as erection strength before treatment?” Most men answer between 8 and 10. Then I ask the same question, but this time assign the number after treatment. The answer from Prostate Cancer survivors who have had nerve sparing treatments varies between 3 and 7. Rarely do I find any one who will suggest that they are able to achieve an erection like before.

REALITY CHECK: It is true, an erection can be achieved, but more than likely it will take more stimulation to achieve and maintain or it will take medication or pumps to enhance the erection effort. One does not have to have a #10 erection in order to achieve an orgasm or to achieve penetration during sexual intercourse. However, it is practical to say that while an erection may be possible, do not expect things to be the same – based on my research they generally are not.

SIDE NOTE: As most will tell you the ability to achieve an erection is as much psychological as it is physical. As a Prostate Cancer survivor, if you are stressed about sexual performance, you will find that stress, anxiety, and other emotional strains will hamper your ability to perform and hence challenge your healing. For that reason, I elected to use Hypnotherapy and it worked. If you have questions about that, feel free to contact me – I’ll be happy to share the details.

EJACULATION: Gentlemen – after surgical or, in some cases HIFU, treatment you will not have a ejaculation – you have an orgasm, butA latex condom with reservoir nothing generally comes out. Richard S. shared with me that no one told him nor did he find out this fact on the internet. I suppose I was luck as my Doctor prepared me for that fact. He said that orgasm was likely but that it would be a “dry orgasm.” I asked him what that meant…to which he replied nothing would come out. It would feel the same, but there would be no semen released.

Guys…prepare for this. Some men have reported that it was not an issue for them. Other men have shared that they have yet to get over the lack of an ejaculation. I understand that. Now I am quite confident that some will be less than happy with my next comment, but I have made a commitment to be frank and candid in the entries I write. For all our lives since we reached the age of sexual maturity, we have had a ejaculation when orgasm was achieved. Whether that orgasm was released internally (through sexual intercourse) or externally, it was released. Some have said that the release or ejaculation was like “marking one’s territory.” It is quite natural. The inability to continue to “mark the territory” is disconcerting to many and something to prepare for.

In other words guy – you won’t need one of these (unless you are using it for other purposes).

CAUTION: I have reported in other blog entries that some men experience the release of urine during sex. This may occur before or during orgasm. It seems, from my research, to be limited in scope – most men are not reporting this issue. But there are some of us, myself included, that have experienced this – and I am told from the Doctors that it is not that unusual. Interestingly enough, most women that I have interviewed were not put off by that – the issue with urine release was more a problem for the man. If this is a problem, one practical thing is to avoid heavy drinking immediately before sex and certainly empty one’s bladder before sex is practical.

As always…these entries are intended to stimulate discussion. Please feel free to comment as your comments will certainly help others.

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