There is an article in today’s New York Times in which the author describes his thought processes as he went about first choosing a treatment and then a doctor after he was diagnosed with PC.  Trouble is the guy is a newbie who doesn’t know anything but thinks he does .  But didn’t we all?? I think this article is important to read because I see so many SMART men (and women) making the exact same (bad) choices. Here are some excerpts from the article, along with my comments.

In Prostate Cancer, Pick a Number, Any Number

By Burt Solomon, August 25, 2008

“I was counseled to pooh-pooh the higher-than-desirable Gleason score of 6, derived by adding the aggressiveness in every spot of cancer, because there was so little cancer in each.”

Get the facts straight. A Gleason score is NOT “derived by adding the aggressiveness in every spot of cancer“. Fair warning of what’s to come.

“I was only dimly aware of the evidence that most prostate cancers never become dangerous, even if left alone. But because nobody can tell which ones will and which ones won’t, the information was useless to me.”

Don’t make decisions when you’re “dimly aware”. And the information we have, although not precise, is not quite useless. You should have checked out all treatments before making a decision, including active surveillance.

“I quickly decided to have surgery to remove the prostate, but I had to choose between the two types”.

You should never decide “quickly” to have surgery. Buy now, pay later.

“I cared most about my plumbing returning to normal. But this was when the numbers really began to confuse things.”

Big mistake! Your first priority should be getting rid of the cancer. The plumbing comes in a distant second.

“One option was to go to Johns Hopkins in Baltimore, my hometown, where the older-style, slash-and-scoop surgery was devised. But the doctors there, my urologist said, cherry-picked their patients — no fatties need apply — to minimize the complications in getting the plumbing up and running again.”

Yes, they devised “slash and scoop” but also nerve-sparing surgery. And why talk trash about an excellent hospital because of what one doctor said?   Presumably sugeons who “cherry-pick” patients, i.e., choose the ones with potentially the most favorable outcomes in order to skew their results, do so to lower their rate of positive margins (a sign that they likely got the cancer out), rather than to ”get the plumbing up and running again” ASAP.

“The other choice, called robotics, was newer and cooler. But the procedure has statistical distortions of its own. Some robotics surgeons have been known to exaggerate the speed of recovery by removing the catheter too early.”

Surgeons yanking catheters prematurely? I never heard of that. My husband had his cath in for three weeks!

“So both sides were skewing the numbers to market themselves.”

A bit pretentious for a newbie.“

A college classmate, a physician with a low opinion of his profession, advised me to forget the numbers, to visit both surgeons, look them in the eye and decide which one I liked. Huh? Why should I care? I wasn’t drinking a beer with the guy. Partly, my friend said, a likable surgeon would respond if something went wrong; an arrogant one might not admit a mistake. And partly, well, my friend really couldn’t articulate it, but he felt certain.”

Look what happened to our country because we elected a president we wanted to have a beer with. Hiring a not-so-good doctor based on personality is the easiest trap to fall into! Empathy can be faked, but not competence. And remember, personality and character are not the same thing.

“Likable” and “surgeon” don’t ordinarily cohabit a sentence,

:-((  (What about Dr. Miles, Dr. Eastham, et al.)

but when my wife and I met with the robotics surgeon, we loved him. Patient, personable and the furthest thing from arrogant, he told us how his technique had improved from his first 200 operations to his second 200. (I was No. 431.) Only twice, he said, in Nos. 4 and 17, had the robotics failed and he had proceeded to the more intrusive surgery. His percentage of complications, he added, was as low as at Hopkins. I canceled my appointment in Baltimore.”

“We loved him”.

Remember, love is blind, so when you go see the doctor, check your hormones at a the door. Do you want a good doctor or the Dale Carnegie of the medical profession? By all means, if you find a doctor you click with, keep him/her in mind but don’t blow off the rest of your appointments (like we did).  And it’s always a good idea to consult with at least a few surgeons.

Also, you can’t believe everything a person says just because he has an M.D. after his name. Ask for proof. And in terms of experience, 430 is a lot but there are surgeons around who’ve done thousands.

“The surgery wasn’t bad at all, and my recovery was startlingly swift. Eight days afterward, I returned to have the catheter removed — none too early — and to learn if the cancer had spread. When I asked the surgeon if the pathology report was “positive” — meaning good news — he winced.

“The news was good: The cancer had not spread beyond the prostate. But 35 percent of my prostate had turned out to be cancerous, considerably more than a dusting. I had dodged a bullet; the numbers had lied again.”

Too soon to celebrate. Hasn’t even had his first PSA test!

From MarketWatch.com, Aug. 25, 2008.

A Proclamation From the President 

“National Prostate Cancer Awareness Month is an opportunity to underscore our
commitment to fighting prostate cancer and to raise awareness about this
highly treatable disease.

“Prostate cancer is the second most common type of cancer found in men, and
one in six men will develop it during their lifetime. The cause of prostate
cancer remains unknown, but early detection can lead to better treatment and
increase the chances of survival. It is important for men to talk to their
physicians about risk factors, prevention, and preventive screenings.

“My Administration remains committed to helping America’s dedicated medical
professionals learn more about the cause of prostate cancer and develop new
and better ways to combat it. Since 2005, the Cancer Genome Atlas has
studied the genetic sources of all types of cancer. By supporting medical
research, conducting clinical trials, and developing new surgical techniques
to help patients recover quickly, the National Institutes of Health, the
National Cancer Institute, and the Centers for Disease Control and
Prevention are helping lead the fight against prostate cancer.

“During National Prostate Cancer Awareness Month, we remember those who lost
the battle against prostate cancer, and we pray for their families and
friends. We also remember those living with prostate cancer, celebrate the
lives of survivors, and thank all the medical professionals who aid in these
victories. By continuing our fight against this disease, we will make our
Nation a healthier and more hopeful place.

“NOW, THEREFORE, I, GEORGE W. BUSH, President of the United States of
America, by virtue of the authority vested in me by the Constitution and
laws of the United States, do hereby proclaim September 2008 as National
Prostate Cancer Awareness Month. I call upon government officials,
businesses, communities, health care professionals, educators, and the
people of the United States to reaffirm our Nation’s strong and ongoing
commitment to the fight against prostate cancer.

“IN WITNESS WHEREOF, I have hereunto set my hand this twenty-fifth day of
August, in the year of our Lord two thousand eight, and of the Independence
of the United States of America the two hundred and thirty-third.”

GEORGE W. BUSH

This is an article from today’s U.K. Telegraph, by Ben Farmer. 

 ”A 61-year-old grandmother, Rosie Swale Pope, who set out to run around the world to raise awareness of prostate cancer after it claimed the life of her husband has completed her epic five-year journey.

“Mrs. Swale Pope’s husband Clive died of prostate cancer in 2002, prompting her to take up the challenge.

“Rosie Swale Pope returned to a rapturous reception from her home town as she made the final steps on her gruelling 20,000 mile trip.   She hobbled into Tenby in west Wales on crutches after being diagnosed with stress fractures.  However the injury was a minor setback compared to some of the trials Mrs. Swale Pope has overcome since she left the town in October 2003 at the start of her trek around the Northern Hemisphere.

“Braving freezing temperatures in the wastes of Siberia and Alaska, she has also been hit by a bus, suffered pneumonia and frostbite and had a breast cancer scare.  She was confronted by an axeman in Siberia and knocked unconscious as she tried to cross a river.

“Saluting the crowd with a crutch and clasping a glass of champagne, she told the hundreds who had turned out to see her:

‘I can’t believe you’ve all turned out for me. I’m just overwhelmed.’

“Earlier this week, Mrs. Swale Pope’s fractures had left her in hospital, but doctors had allowed her to continue if she walked ‘very gently’.  She said:

‘I’m really pleased I fractured my hip because it’s made it far more exciting, and I got here just fine.  I thank the head consultant of Withybush Hospital for letting me go. I looked in his eyes and said ‘I’ve got to do it’.

“She went on:

‘It’s a journey that came out of sorrow and pain and heartache, but it’s a journey that has turned to joy.’

“While running around the world Mrs Swale Pope pulled her equipment in a small trailer and either camped at night or stayed with people she met.  Among the hundreds who welcomed her home were some who had met her as she travelled across the world.  After leaving the UK in 2003, she trekked across Europe before spending more than a year walking the length of Russia and Siberia.  She then battled on through the wilds of Alaska and Canada before completing the journey through the US and Iceland.

“Bob Collins, a district attorney from Nome, Alaska, who helped rescue Mrs Swale Pope when she got stranded in a blizzard in November 2005 was among those to see her cross the finishing line.  He said:

‘It was minus 65F and she was stuck. Many adventurous types in less severe circumstances would have given up at that point.  I know local people who have attempted the route she took, but never on foot. They’ve told me 99.9 per cent of people who attempt this who get stuck call it quits.’

“More than 30 years ago Ms. Swale Pope achieved fame when she sailed around the world, crossing the Atlantic alone in a 17 ft. plywood yacht.  Since then she has also ridden more than 3,000 miles through Chile and has run across the Sahara desert, Iceland, Nepal, Kosovo and Cuba.  However before setting out on her latest odyssey, she predicted it would be her most difficult challenge yet.

“Welcoming her home, her son James, 37, said: “I’m really happy.

‘It’s a huge relief that she has successfully made it. I was worried something might go wrong.  If the stress fractures had happened up in Scotland, it would have been very difficult for her to complete the journey.  I’m a very proud son today.’

Recently, I responded to a complaint from a PC patient who felt that many of his friends had abandoned him after he was diagnosed with cancer.   (Read the last two postings.)  But there are also patients who push others away, and in my opinion, add to the stigma of cancer in the process.

Here is a story about this that’s really hit close to home.

My sister told me two weeks ago that her husband, Jack, has a life-threatening illness, but she wouldn’t say more than that. Said he had sworn her to secrecy. Apparently my brother-in-law (”BIL”) has been sick for a few months and they only just told the kids. I know it’s cancer because sis said that  BIL is “in remission”.

I explained to my sister that I’ve been researching cancer for two years so maybe I could help her in some way. She replied, “No, it’s not necessary”. Very fatalistic.  Then I tried to comfort sis by telling her not to let the c-word get to her, that it no longer intimidates me (a bit exaggerated).  It can be tamed.  No reaction. Finally, I asked if I could send Jack a card.  She said, “No, I’ve already said too much”.  My brother was allowed to visit last Sunday and he called me immediately to say that Jack couldn’t talk at all — only “grunt”.   And my mother was told there’s something wrong with his neck. So you try to put 2 and 2 together.  Throat cancer, maybe?  It’s like a game of “20 Questions”.

This is the case of a *patient* stigmatizing the cancer and himself by not allowing anybody in.

I must say that I’ve been somewhat close with my sister but relationships in the family have frayed because we are all stressed out to the max because of caring for my elderly mother in the last four years. My sister used to be a very normal, serene person, but as I told husb recently, now she only snaps and barks.

Every since I heard the news about my BIL  I’ve been walking around with a sickly, leaden feeling. I feel sorry for him and sis he is young and they have five wonderful kids. But all told, I feel under the circumstances my sister should have told me *all the details* or *kept her mouth shut*.  Husb agrees.

My BIL is a cold fish and a very reserved person, but this somehow feels like a dis,  it’s as if he’s implying he has no use for his wife’s family, so why tell them at all.  And can you imagine what a burden it is for my sister to keep such a secret?  That’s unfair. Finally there’s the fact that my own husb has had two cancers plus a recurrence, and of course my sister knows this. So does she think she’s making me feel good by talking about cancer in hushed and ominous tones when I have tried so hard (and succeeded to some extent) to move past that? Incidentally, my sister has tried to help but has been very cancer-phobic throughout (my) husb’s illness.

Being ignorant, I can only hope for the best.

For me the silver lining in my husband’s illness and also in my father’s year-long hospitalization for a stroke was discovering the kindness of strangers — now that’s something I can write a book about. We tried to keep a 24-hour vigil by by Dad’s bedside because the care at the hospital was so bad. Needless to say this was exhausting.  But people we didn’t know brought us hot, home-cooked meals and even arranged for us to nap in a vacant room.  When one of us couldn’t stay the night, a charitable org would send volunteers. These were people who worked all day but nevertheless would offer to spend the night with a sick patient.

When my Dad died I was there alone and –sorry this is a bit morbid– I wouldn’t let them the orderlies take him away. He wasn’t going anywhere without me! The attendants told me to get out of the way. I started to cry. A stranger who was standing nearby watching all this came over to me and asked if he could help in some way, get me something to eat, maybe, or a ride home. That was very nice.

When dear husb got PC I asked for and got a lot of good information about doctors, health insurance and other important issues from various charitable orgs that specialize in these things.

Finally, when husb was operated on, a religious org gave us the use of a beautiful hotel suite 5 minutes from the hospital so that I wouldn’t have to make the 2.2. mile trip from home by public transportation (the traffic is horrible). That was a godsend! Husb’s op was on a Saturday,  and so the entire surgical unit was closed. The lights were even out in the waiting room. So my friend and I went and had lunch on our little patio while the surgery was being done. I ended up staying in the hotel for 3 days because they kept DH in the hospital a little longer.  I really needed that vacation.

Too bad it took a couple of serious illnesses to make me realize how good people can really be. 

A man, Jerry P., wrote in one of the PC forums how, after he’d been diagnosed with prostate cancer, some of his friends suddenly vanished.  This is a common complaint.  So I wrote Jerry a letter I want to share with you.  And it would nice to hear of your experiences. 

Sometimes friends and acquaintances do make themselves scarce after a cancer diagnosis. But I’ve also heard of many cases in which women who were dating men who developed PC stayed by the man’s side the whole time. And some relationships, whether friendships or marriages, have been enhanced by cancer.

In some cases it’s the *patient* who pushes people away — and adds to the stigma the disease.  I am experiencing this now with my sister and brother-in-law.   Details to follow.

We are fortunate in that that we did not experience rejection from friends and acquaintances after my husband’s PC diagnosis became known, although some people, like my family, were obviously very ill at ease discussing cancer.  As soon as I would mention it, my sister would say, “Oh, I have to go, the kettle is boiling…”

In my letter to Jerry I tried to focus on the positive, even transformative events in my life that were brought about by illness in the family.  First on the list would be the kindness of strangers, which made me appreciate the goodness and potential of  all people.  Forgot about what Freud said — that all we live for is sex and aggression.  Now scientists have discoverwd that we are “wired” for altruism.  In any case, when you are feeling low, try to think back and make a list of people you didn’t know too well who reached out to you.  That always cheers me up.

Finally, you have to be charitable in interpreting other people’s behavior.  And to not be the pot calling the kettle black, reflect closely on your own.

Here’s the letter I wrote to Jerry. It was quite long so I decided to break it up into three topics: 1) “Friends Who Flee”, 2) “When It’s the Patient Who Pushes People Away”, and 3) “The Kindness of Strangers”.

———————————————————————————————————-

Dear Jerry, 

This is such a complicated topic. Unfortunately, there is no etiquette guide on how to treat people with cancer (seriously, someone should write one), and lot of folks just don’t know how to react. I hear complaints from men, for example, about their adult children not showing enough interest. I mean what should the kids ask, “How’s your continence, Dad?”

Can you remember a time when you yourself were cancer-phobic? I can. But a couple of years ago I accompanied a friend who had colon cancer to chemo treatments, and I had no problem with it at all. But I must tell you that this woman continued to look healthy and robust to the very end. She was plump and had a lush head of hair. I didn’t understand why she hadn’t suffered the usual effects of chemo, but I couldn’t exactly ask. I must tell you though, that had she looked much more ill, it might have been harder to take and I might have fled, too.  Also, my friend told me the docs gave her marijuana pills for nausea, and sometimes she seemed more giddy than downbeat.

One last thing.  We should all try to be charitable when interpreting other’s behavior.  Sometimes we think we understand their motives but we really don’t.  For example: my friend Curtis, a PC “veteran” who helped me most when I needed emotional support, corresponds with a lot of brothers who are ill. Once he told me that sometimes, when a guy takes a turn for the worse, people distance themselves and stop writing. I know this because it happened to a friend of mine. But Curtis explained that the people who withdraw in “dire” circumstances are not evil, they are simply trying to protect themselves from the pain of a loss. I know what that feels like and have sometimes wished I hadn’t let myself get so close to somebody I met in a PC forum.

We all need to cut each other a lot of slack.

I initially posted my previous message about depression and PC treatment on a site I have been frequenting which brings together people from diverse backgrounds.  You might be interested to read the responses I got, which came from a broad spectrum of the PC community: patients and their partners, a surgeon, psychiatrist, psychologist, a number of patient advocates and (indirectly) a nurse and sex therapist who works with PC patients.

http://prostatecancerinfolink.ning.com/profiles/blog/show?id=2034917%3ABlogPost%3A22823&page=3

After carefully reviewing the feedback that my post generated, I came up with a list of suggestions on ways that doctors can improve the lives of their PC patients.  I’m going to share it with you, even though it’s impromptu and unedited. 

How to Improve Life for Prostate Cancer Patients and their Partners

* The primary treater, e.g., surgeon, should refer the patient for “penile rehab” with a *highly competent ED specialist* at 2 months after RP. MSK automatically schedules men for a follow-up with their resident “sexpert”, Dr. Mulhall, at six weeks. There is some evidence that penile rehab might actually have a prophylactic effect for long-term ED. More important perhaps, ED therapy, usually with injections, can allow a man to have an erection again and feel better about himself, and the couple to resume sexual relations. Giving the patient a script for Viagra that you just keep renewing can be very costly to the patient, since if it doesn’t work in the beginning it probably won’t work for many months, if at all. Don’t throw out the pt’s money.

* Be honest with patients. Don’t promise them the moon and quote statistics that have no basis in reality. You are just setting your pts up for a fall. Be up-front about ALL potential side effects of treatment and their likelihood of occurring. Advise the patient of all interventions that can help. The risk is that the patient may walk out of the room, but it’s their life and their choice. As someone pointed out, ethically the patient should be told of *all* treatment options, even via written materials, and left to decide. Ultimately, patients prefer doctors who are honest with them and hate the ones who leave them most unprepared for adverse events, i.e., “blindsided”. For instance, my husb’s surgeon said that he was a textbook case for recovery and estimated his chances of getting ED at about 10% with nerve sparing. Afterwords, he told us both nerves had been spared when in fact only one had. We were not expecting ED so it came at us like a meteorite. It took us a very long time to even recognize that there was a problem.

* Provide the patient with a list of support groups in the area and online as well as other sources of help (e.g., telephone helplines, cancer organizations). One man wrote in a PC forum the other day that he was about to kill himself when he discovered the online PC community. That’s what saved him.

* Monitor the pt’s psychological state at follow-up visits, particularly in the case of younger patients. If you suspect depression, recommend that they seek help from a mental health prof’l. Many men have been helped with psychotropic medications, psychotherapy, group support, relationship counseling and encouragement of “spiritual” pursuits.

* Provide high-quality, candid written materials to pts on how PC treatment might affect them, in particular their sexuality and relationships with partners. Provide resources for treatment.

* Encourage patients to engage in religious or spiritual pursuits or other activities that give meaning and pleasure to their lives. A good social life is the best buffer against depression, so encourage patients to maintain close ties with family and friends. My husband, e.g., has spent much more time with his family since his PC diagnosis and it has been a boon to both.

* We should do more research on the problems of PC patients and partners. Find out which interventions have the most promise and try to implement them.

* Enlist the help of a variety of medical professionals including nurses, social workers and GPs, as is done in places like the UK. Follow their model of a “holistic”, team approach.

* Be especially sensitive to the needs and vulnerabilities of younger patients.

* For patients who have undergone ADT, be up-front about side effects and encourage relationship counseling. One study showed that as many as 50% of couples who’ve undergone this treatment are basically living together only because they don’t want to bother with divorce.

* Take a genuine interest in the patient before, during and AFTER treatment. Don’t cut ‘n run. Surgery, e.g., is a PROCESS, and the doctor needs to do proper follow-up and be available to the patient.

* Rule out physical causes of depression that can result from the cancer or treatment.

* Global changes have to be made to our healthcare system to allow doctors to spend more time with patients. We should try to turn out more GPs — they’re the first line of defense against illness. Revise our insurance system so that people who change or lose coverage don’t have to bounce from one GP to another. Best thing for your health is a GP who knows and cares about you.

* Help newly diagnosed patients navigate the maze of PC treatments by establishing a multi-disciplanary model for treatment. Patients should meet first with an oncologist, then consult with prof’ls in various fields, e.g., surgery, radiation, etc. They should be given accurate, specific information and then left to make up their own minds. NCCN practice guidelines are a good model. If the doctor can’t spend that much time with the pt, they can provide written info for the pt to review.

* If a pt experiences a loss of libido after treatment, help them understand the cause and recommend possible treatments.

* Mention online PC support forums like prostate pointers.org’s excellent PC and Intimacy list (PCAI), which now has a “wiki”, a sort of reference library for readers. Also for ladies, there is prostate-help.org’s “Ladies Only” forum.

* Explain to partners of men with PC how they can help. They are often clueless. Phoenix5.org has some good articles for companions, one of which is “10 Pointers for Women”. http://phoenix5.org/companions/10Pointers.html. This article, written by a man, describes the physiological,emotional and sexual changes that often follow PC treatment and advises women how to be most helpful and supportive.

* Be nice to your patients. Care for them and they will care for you.

One more thing: Replace the textbook, “Torquemada on Treatming Prostate Cancer” with something a little more modern. : - ))

All serious illnesses cause emotional distress. But prostate cancer patients may be even more vulnerable. This is because treatments for PC often cause erectile dysfunction (in at least 50% of men who’ve had RP, for example), which is highly correlated with depression. Also, some men who’ve undergone treatment have been left with distressing side effects like penile shrinkage or Peyronie’s disease (curvature of the penis). Finally, ED *can and does* cause serious damage to patients’ relationships.

Incontinence, another common side effect of PC treatment, is no fun either.

A number of studies have shown an association between PC diagnosis/treatment with depression and risk of suicide, although I have to stress that MOST men who’ve been treated for PC go on to do fine.. They do not suffer from clinical depression.   But if you look at certain online PC listervs that deal with emotions and intimacy, you will find that the “misery index” is stratospheric among SOME patients who’ve been treated for PC and/or their partners. They are not the majority, but I think their numbers are significant. I realize that these forums are biased, but anecdotal evidence does means something.

So it’s striking to me that the upcoming “Duke Prostate Cancer Symposium“, which features a “Patient Day”, lists two speakers who will discuss patient “quality of life” most directly — and both are urologists/oncologists. There is not a single psychiatrist, expert in sexual medicine or relationship counselor on the panel. I believe these are the people who can help most with improving the long-term quality of life of men who’ve had PC treatment. They should be an integral part of the PC treatment team. If this isn’t possible, the doctor who treats the cancer should give the patient information about ALL potential side effects and appropriate referrals for follow-up.

I will mention that the Duke Symposium will include a talk by a urologist/oncologist about the sexual complications of PC treatment. I’m sure most of it will be about plumbing. But the doctor does mention a study which is looking at sildenafil (Viagra) as a potential treatment for men with ED and depression. But another urologist/oncologist, whose topic is quality of life among men who’ve been treated for PC, has written almost exclusively about the problems of men who are poor or uninsured. Her focus is economic.

I think the primary doctors who treat PC don’t want to discuss consequences like depression, impotence or ruined relationships either because they’re in denial or they just don’t want to say out loud that these things exist. The problem is that the rest of the world knows and is apparently bothered by it. People from various backgrounds and disciplines oppose PSA testing because they believe that the treatments for PC cause more harm than good, Unfortunately, many lives are lost because of this opposition to screening.

One solution to silence the critics would be to do no harm in the first place, i.e., avoid aggressive treatments when there are reasonable alternatives like active surveillance. But so far this is not happening. Another possibility would be to *mitigate* the harm by providing men who’ve had PC treatment with proper support and follow-up. That’s what I’m talkiing about.

It’s very frustrating to me to see that so little progress has been made on this important issue and that so few advocates seem interested.

I want to introduce you to Bill Manning, an invaluable member of the PC community and an inspiration to a lot of people.  And I would like to encourage you to do everything in your power to support his upcoming campaign to raise money for charity, specifically The Lance Armstrong Foundation.

Bill has been competing in triathlons for years, and despite being treated with chemotherapy, continues to participate in athletic events to raise money for cancer research and support.  

I first “met” Bill when I made some inquiries in a PC forum about my husband’s upcoming radiation therapy and the possibility of switching to a new hospital.   I was very nervous.  What I remember about Bill’s response was that it was so very encouraging.  That’s the type of guy Bill is.  “Thinking positive” is an understatement! 

Please take a moment to learn some more about  this remarkable man.  You can read his story and about his 3-year struggle with PC on Bill’s website:  http://sites.google.com/site/dollarb58/.

I will let Bill  explain in his own words what he is trying to accomplish with his charity campaign.  I urge you to open your hearts *and your pocketbooks* — the Lance Armstrong is an excellent organization.  And if you happen to be in the neighborhood, stand up and cheer for Bill — he’s one of our own:
 
“As an age group tri-athlete for 24 years I have come to rely on my training to help balance me in life.  I have continued my participation in triathlons since being diagnosed and this has helped me with my cancer, healing mind, body and spirit.
 
“I want to give something back to the cancer community.  The Lance Armstrong Foundation (“LAF”) embodies the same ideals that I have strived for in my own life.  They work to help give people a sense of empowerment.  Among the many things they do is to help people realize that there is life after cancer and to “LiveStrong”.  I know from personal experience how important it is to feel empowered and to take back your life.
 
“I am launching a five event program to raise money for LAF.  I will we be contributing funds as well as participating in the events.    
 
“The events include 3 triathlons (including the 2010 Lake Placid Ironman) a 3,000 mile cross country bike ride and a 28.5 mile swim around Manhattan.  Take a look at my website for details about each event.   http://sites.google.com/site/dollarb58/.
 
“Like with cancer, this journey is a process that we take one step at time.  The first step in this journey is The Mighty Hamptons Triathlon to be held on September 14, 2008.  (See my website to donate http://sites.google.com/site/dollarb58/.)  During this first event I will still be on hormone treatment for my cancer.  This makes the event a bit more challenging.  My plan is to be off treatments for the next four events.  The events get increasingly longer and hopefully my cancer will cooperate with my plans. 
 
“Please join me in supporting LAF.  I will be matching the first $2,500 of contributions personally on September 13, 2008.  

Please Donate today.  You can either go to my website http://sites.google.com/site/dollarb58/  or you can also skip the website and donate here http://www.livestrong.org/grassroots2008/dollarb58.
 

Everybody has wondered at some point where in the world there cancer came from.  Sir Paul Nurse, a Nobel Prize winner and head of the prestigious Rockefeller University, opines that the vast majority of cancers are random events.  The only behaviors that are known to correlate with cancer are smoking and exposure to sunlight.

But there are definitely cancers that are genetic in origin.  (Actually, all cancers involve mutated genes, but I am talking about inheriting defective genes from a family member.)  I always thought genetics played a big part in my husband’s illnesses.  So I found it interesting to read in the New York Times (5/25/08 by Jane Brody), what the risk factors are for hereditary cancer:

“Megan Harlan, senior genetic counselor at Sloan-Kettering, said these were red flags that suggest a cancer might be hereditary:

* Diagnosis of cancer at a significantly younger age than it ordinarily occurs.
* Occurrence of the same cancer in more than one generation of a family.
* Occurrence of two or more cancers in the same patient or blood relatives

“Dear husb fits this profile to a T and has even more genetic baggage to add!  A New Zealand study found that men whose mothers had breast cancer have a four-fold risk of developing PC.  Well, DH’s Dad had PC and his mother had BC — at a very young age, which sometimes signals a more lethal type (perhaps related to the deadly BRCA gene).   And husb did get the PC at a relatively young age, 53.  Finally, he’d had a previous cancer, a melanoma.

So how does this make me feel?  Validated, for one.  My diagnosis of “hereditary cancer” seems to be accurate.  There’s actually some comfort in knowing that your illness was not inevitable but probable.  In other words, it’s not your fault.

Here are a few more facts about hereditary cancer from the NY Times article:

“An estimated 5 to 10 percent of cancers are strongly hereditary, and 20 to 30 percent are more weakly hereditary, said Dr. Kenneth Offit, chief of clinical genetics at Memorial Sloan-Kettering Cancer Center in New York.”

“. . .  BRCA1 and BRCA2 mutations are strongly linked to breast and ovarian cancer in women and somewhat less strongly to breast and prostate cancer in men.”