The Beginning

September 27, 2008

Thanks for stopping by to check out a few of my thoughts.  I'm starting this cause I need to vent about a bunch of things and think a great injustice is being perpetrated upon the men of this country by our "health care" system.  

On May 23, 2008 my PSA (prostate-specific antigen) test, which I'd requested since my uncle had been diagnosed with prostate cancer ten years ago, came back with a new high of 4.11.  This showed an increase from the 3.05 test level from 2006.  Now these numbers probably don't mean much to the average person since next to nothing is done to inform men of the importance of screening, the simplicity of testing (just another check mark on the same vial of blood that is typically tested at each year's physical), the values which are "normal" or the potentially devastating side effects.  The big joke about prostate cancer is that diagnosis isn't important because it grows so slowly something else will probably kill you first.  Not true when you have a history in your family.  I was diagnosed at 47.  

When I shared my case history with one of the best surgeons in the country, he let me know his staff at Memorial Sloan Kettering was "shocked" at the severity of the cancer, and pondered why my primary care physicians (PCPs) at Madison Internal Medicine in New Jersey took no action when the PSA of 3.05 was reported two years ago.  I guess they just fixated on the magic number of 4.00, but did not take into account that that level is a reference for men around 70 and the value should be significantly lower for a 45 year old man.

But I digress.....

After receiving no guidance from my PCPs on selecting a urologist with whom to follow up on  the readings of May 23, I wound up with a very reputable urologist in Denville, who digitally examined my prostate and told me there didn't seem to be any problem.  But, to be on the safe side, he was going to do a biopsy on the prostate.  Looking back, I'm amazed that this would not be done as a matter of course for someone with a PSA of 4.11 at age 47, but the deeper I descend into the labyrinth that is the American health care system, the more it appears that PCPs are nothing but gatekeepers for access to health insurance trying their best to minimize costs for those companies.

On July 11, 2008 the biopsy was done by taking 12 tissue samples from my prostate.  This is done by sticking a nice size probe up my ass and clipping off pieces of tissue from the prostate itself.  I am sure there is a sub-segment of the patient group that enjoys anal invasion, but it ain't me.  My urologist was going on vacation for the week, so I received the results on July 21st.  Ten days is a long time waiting with your head in a guillotine to hear if you have cancer or not.  It doesn't feel much better when you hear that ten of the twelve samples came back positive for cancer.  The fact that my in-network physician sent the samples to an out of network lab resulted in a $4,500 bill which I now have to fight just added more distractions.  (That's another whole tangent.)

Well, now I know I have cancer, so we next have to figure out how far it has spread.  That delay between 2006 and now is weighing heavily on me now.  After going for blood tests (CBC/Kidney) and going to St Clare's on July  25th for outpatient tests - CT of abdomen and pelvis with contrast and a whole body bone scan, I am told by the urologist that the cancer does not appear to have spread.  (When reading Guide To Surviving Prostate Cancer by Dr. Patrick Walsh from Johns Hopkins, I learn that the CT scans don't really indicate anything because of the nature of the test focused on large masses.  By the way, any man who has any questions about prostate cancer MUST get this book!)

My urologist says the decision to either go with traditional removal, laporascopic robotic removal, radioactive seed implants or radiation therapy is a personal choice that differs for all men.  When pushed, he says he would remove the prostate via laporascopic robotic surgery done by his associate.  My independent readings indicate this relatively new procedure could be a great way to go.  My readings also indicate that the severity of side effects is directly linked to the skill level and experience of the surgeon.  I am not going to simply trust the word of any single health care professional.

Oh yeah, side effects.  The major side effects associated with prostate cancer, assuming the cancer is removed, is potential loss of continence and/or loss of erection.  Also, if one opts to remove the prostate, there is one certainty.  One will never have ejaculate again!  So I am going to make sure I have the best possible people helping me decide on appropriate treatment and selection of the person to execute the treatment.

Luckily, I have friends who have access to key opinion leaders in the area of prostate oncology who identify a physician at Columbia Presbyterian - Dr Daniel Petrylak - who can review my tests and provide a second opinion.  On August 5th, I went to review my case with Dr Petrylak. After waiting to see him for five hours, he stopped in and said given my age, he would remove the prostate.  It was the most valuable five hour wait I ever endured!  I have now decided to remove the prostate, so I begin focusing on identifying the best person to do that.

After doing more research on my own supplemented by the help of some friends, I decided to attempt to set up a consultation with a gentleman who is supposed to be the best surgeon in the world for this type of operation.  Dr Peter Scardino, the Chairman of the Department of Surgery at Memorial Sloan Kettering Cancer Center (MSKCC), I am told has a wait list of three months.  However, I gather all required information and forward it to his office.   In no time I am contacted by Dr Scardino's office and given an appointment on August 27th.  Two weeks from initial contact, not three months.  The urgency of his office does raise a slight red flag in back of my mind.

Dr Scardino's office staff is extremely accommodating, polite and efficient.  I arrive at MSKCC at 7:30 in the morning for our 8:30 appointment.  By 11:00 I have completed the MRI and blood tests.  By 6 o'clock, I learn that Dr. Scardino and his team have accepted my case and recommend removing the prostate via traditional surgery.  While tests still indicate that the cancer is localized to the prostate.  The extent of cancer within the prostate indicates there is a possiblity that some of the cancer cells may have escaped the membrane of the prostate.  So feeling the cells to make sure all the cancer cells are removed is vital in ensuring removal of all the cancer cells.

When I ask how soon we can remove the prostate, I am given the choice of either waiting until September 23rd or going in on September 2 - just six days from the consultation!  My wife and I opt to wait until the 23rd so we can wrap up some things professionally and prepare ourselves and our family for this operation.

On the 23rd, I enter MSKCC at 5:45 AM, and am under anesthesia by 9:30.  The five hour operation then requires about four hours of recovery because of my habit of sleeping with my mouth open and my inability to prevent myself from using the button supplementing the pain medication.  However, when I awake, my wife is there to let me know Dr Scardino was able to remove all the cancer cells and spare the nerves controlling continence and sexual function.  This is the best of all possible outcomes.  The biggest issue now is recovery and the management of the catheter for the next ten days.

The next day I am up and walking around the hospital floor, eating solid food and doing my best to make sure I can leave the hospital on the 25th.  I am thrilled when I learn I can leave the hospital.

It is the afternoon of Sunday, September 28th as I write this.  Being home has been fantastic.  My wife and children game me breakfast in bed on Saturday.  I am weaning myself off the Percocet and walking around the house as much as possible.  

My Mets and Johan Santana sent my spirits soaring yesterday as they battled against the odds to defeat the Marlins inthe rain yesterday.  ensuring their sporting lives for another day. The Cubbies, while at times appearing to TRY to give away their game with the Brewers, held on against the Brewers leaving the Mets in a tie for the National League Wild Card.

So, with my wife and kids out shopping, my biggest challenge is bouncing between the Jets/Cardinal game and the Mets/Marlins game.

To wrap up this first installment.  I hope that anyone confronting prostate cancer reads this and takes the management of the disease or potential of having the disease into their own hands.  Don't trust in the first-line health care professionals who have so many other demands on their time and priorities. At a minimum, get Patrick Walsh's book and educate yourself enough to challenge the people who may not be putting your health first.