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September 17, 2008
The Scimitar Falls; I’m Walking On
I am in Memorial Sloan Kettering Hospital, recovering from a radical prostatectomy that was performed on Tuesday. I have been assured by my physician that my prostate cancer has been completely eliminated and that I should be able to get on with my life without adverse consequences. As you may recall, I wrote a blog post in September, 2007 describing my first interaction with this disease. Here are the further and hopefully final chapters of the story.
Chapter One—In January and again in February, my PSA test showed a significant increase from December. Given that this jump occurred in a very short period of time, my NY based urologist discounted the result and prescribed an antibiotic to combat what he diagnosed as a urinary tract infection. I had a PSA test decline, so the urologist told me not to worry but that if I insisted, he would perform a second needle biopsy. As described in my earlier post, this procedure is equivalent to random walk investing, taking 10 core samples from all areas of the prostate.
Chapter Two—Not satisfied with this recommendation given my family history of prostate cancer, I pursued an MRI guided biopsy. First you undergo an MRI, which requires you to lie still for 45 minutes for best result. After analysis of the pictures, I had a saturation biopsy of 21 core samples, with particular emphasis on those areas of suspicion. This is the approach being advocated by our client, AdMeTech, which wants a “Man-o-gram” as standard diagnostic instead of blind biopsy, based on the success of mammograms in detecting breast cancer.
Chapter Three—In mid July, I received the dreaded call from the radiologist, confirming that I had low grade, early stage prostate cancer. Two of the core samples were Gleeson 6 (slow growth), one was 15% and the other 5% cancerous, but the cancer was contained within the prostate. So the scimitar had fallen on the patient; now the question was what to do about it. It took me a few days to process the diagnosis as I am an excessively healthy guy. I work out six days a week, never smoked, rarely if ever drink and eat only nutritious food. I have only missed about five days of work in thirty years at Edelman. So Superman has holes in his cape! I informed my wife and we decided to go on a journey together to select the best course of treatment.
Chapter Four—There are three basic options for a patient with my data set. First is “watchful waiting,” where you monitor the progress of the disease and take action when it becomes more pervasive. For me, this was never a serious consideration; this is a better choice for a man in his late 70s or beyond, not for me at 54. Second is the course of radiation, either with direct beam or with radioactive seeds, to attack the cancer in the prostate. This can be supplemented by hormone therapy for full body treatment. The third option is surgical removal of the prostate, either through the traditional open platform approach akin to a Caesarian section delivery of a child or the new robotic approach that is less invasive and offers a shorter healing process. I visited three specialists, each a passionate advocate for his treatment modality, with statistical support for claims of high rates of successful removal of cancer and corresponding low rates of side effects, notably incontinence, impotence and rectal bleeding. As a non-science person, I found myself increasingly perplexed and worried, confounded by the conflicting viewpoints.
Chapter Five—I began to talk to men who had been through the same process of selecting a treatment while simultaneously coping with feelings of self-doubt. As with the physicians, each former patient was enthusiastic about the path he had chosen, but was honest about the side effects, most which disappear over time. I also spoke to experts from the Milken Institute, the FDA and the National Cancer Institute. I found a plethora of material online, but most of it was confusing and partisan. The way forward began to become clear; surgery to remove the prostate, leaving radiation as a further treatment option. One expert had the best line, “The only good place for this prostate is in formaldehyde.”
Chapter Six—I told my three teenage daughters that I had prostate cancer and that I was going to have surgery to remove it. These were the most trying moments for me; to tell my kids that I had an illness but that I was acting decisively to fix the problem before it became a more serious one. Luckily I had planned a two week vacation in Long Island and spent all of it with them, going swimming in the ocean, jumping on the trampoline, playing tennis, riding my bike and generally acting like a teenager. I began to inform my close friends, including my basketball buddies from our 50 plus team, the Delusionals. The reaction was strong support for both me and my wife. My parents were vacationing in Long Island and I met them for lunch to tell them about my problem. My dad, now 13 years after his own prostate surgery, said simply that he was sad that I had to run the same course but that I was a tough guy and would get through it just fine. I had similar discussions with my brother and sister, who are visiting me today at the hospital.
Chapter Seven— After selecting a date for surgery, I started the process of informing my most senior colleagues at Edelman, opting for in-person discussions when possible. I described the entire journey, from discovery of disease to the selection of treatment, noting that I would be out of work for two weeks and on a diminished travel schedule through the fall. I promised all of them that I would be back with the same energy and attitude of the Pirate King. Then came the interminable waiting for the big day of surgery; I tried to remain as active as possible, exercising like a man possessed (I have to lay off for 3-6 weeks, the longest period without a good sweat in my life), going to the US Open tennis, Fashion Week in New York and on a college visit with my middle child.
What have I learned in the course of the past three months? First, you have to be your own patient advocate. If it walks like a duck, sounds like a duck and looks like a duck, you may have a disease, even though your doctor tells you not to worry. Second, there is often a better way to diagnose your condition; you have to be insistent in order to persuade the medical establishment to allow you to take those further steps. In my case it was the MRI guided biopsy and later the PCA 3 test. Third, use your network of friends to find those who have had the disease and can give you further context for your decision on treatment. Fourth, and most important, find a doctor who can guide you through the maze. In my case, I had the charismatic and passionate Dr. Faina Shtern, our client at AdMeTech, who opened doors for me then sorted through often conflicting medical advice. In the end, medicine is an art, not a science; it is like business, where you evaluate all of the data, then decide on a course.
I tell this story in the hopes that it helps others who are confronted with this or other diseases. I’m eager to get back to work because I have a lot to do. I want to thank all the physicians who have helped me on this journey, to express my appreciation to my friends for their constant concern, to depend on my colleagues to hold down the fort, and to tell my family that I love them more than they will ever know. See you back in the blogosphere in two weeks!
Posted by Edelman at September 17, 2008 4:00 PM
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Comments
Richard -
Sorry to hear about your state, though glad you've gotten through the surgery itself. Your story and message are inspiring (and just a bit frightening).
Keep up the fight & have a speedy recovery.
Posted by: NB at September 17, 2008 5:06 PM
Richard...after three bouts with cancer (lung/kidney/non-Hodgkin's lymphoma)I believe that your insights capture the essence of the process of diagnosis and recovery. And, your willingness to face squarely and discuss the challenges, uncertainty and tedium of the process will be truly helpful to those who may face the same journey in the future. Best wishes for a full and speedy recovery!
Posted by: James W. Montanari at September 17, 2008 5:08 PM
Please know that we're all here to support you and your family, and we hope to see you visiting our offices well and strong some time soon!
Posted by: Winnie Orilla at September 17, 2008 5:59 PM
Richard: First, best wishes for a speedy and full recovery. As to the first and second of your four points, you are absolutely right. No one is going to be an advocate of one's health but themselves. My wife and I went through a similar process, but had to go through five different doctors to correctly have her condition diagnosed, which turned out to be life threatening, but fortunately was resolved. I'm glad that your early proactive actions helped you too.
Posted by: Steve Shannon at September 17, 2008 6:04 PM
Best wishes to you Richard for a speedy and full recovery! TJ
Posted by: TJ Snyder at September 17, 2008 7:35 PM
Richard,
As they say in the old country, you can't keep a good man down! Thank you for your candour and indefatigable spirit and for blogging from the recovery room to demystify the prostate cancer process and give hope to the other men and their families out there. As one of the world's foremost public strategists you clearly have the skills to be a great patient advocate but what can we do to help the rest of the population who are paralysed by conflicting studies and remedies? Is there a type of " Patient Advocate " who can help broker the process? GP's used to do this but now they just pass you from one specialist to another and God help you if you illness falls between two specialist areas.
Get well soon, we need you at this turbulent time in the global financial markets,
Ted
Posted by: ted smyth at September 17, 2008 8:10 PM
I follow your blog closely and have been through a similarly frustrating series of medical diagnoses for my husband. I am so glad you persisted and were your own best advocate. My very best wishes for a safe surgical procedure and your speedy recovery; I'll be looking forward to your return!
Posted by: Shonali Burke, ABC at September 17, 2008 8:33 PM
I have dealt with a form of Lymphoma for years, a never give up or quit asking questions - is necessary ! Dealing with it assists you in living with it, cancer is a nasty disease and you must make decisions as you did ! If you didn't worry you are not really alive ! If you don't collect data on cures you will not survive ! We await your return !
Posted by: marshal sandler at September 17, 2008 8:37 PM
Thank you Richard for sharing your story. Your experience will be a great inspiration for others going through similar experiences. Very best wishes for a speedy recovery. - Jay Bernhardt, CDC
Posted by: Jay Bernhardt at September 17, 2008 8:44 PM
Richard:
All the best to you and your family on your journey. I am heartened by your progress and courage.
While not the same, I came through surgery a couple of months ago for skin cancer on my cheek, temple and shoulder. Also, we lost my oldest brother (67) in July to colon cancer, which could have been avoided with a colonoscopy a couple of years ago. I had mine last January. Brother Bob was an exec with Lockheed, a successful entrepenuer and engineer. It was a very sad loss.
More recently, I feel like I just got a new lease on life with cataract surgery. My right eye was done on Monday and the left is next Thursday. The marvels of medical science have made it possible to see again in 20-20 clarity including life's rich colors and hues. I think I had lost sight of how wonderful nature appears.
Despite our desire for eternal youth, we are aging against our wills.
This note is again to convey my family's best wishes to you and yours and to a speedy recovery.
Hopefully, our paths will connect again soon.
Best regards,
Gerry
P.S. Please give my best to your Folks
Posted by: Gerry Corbett at September 17, 2008 10:48 PM
Richard, thank you for this. All my best wishes to you and the family.
Posted by: Susan E at September 17, 2008 11:40 PM
Sending thoughts for a rapid recovery your way.
Posted by: Cathy Brooks at September 17, 2008 11:46 PM
You're being more than "your own patient advocate". Thank you for sharing this for greater awareness, and hope you feel better.
Posted by: Stanislas at September 18, 2008 1:00 AM
Richard, thanks for sharing this in this very personal way. I hope and pray you will be better soon. For me personally it's helpful and encouraging to read about your way of dealing with it - for my family history with this disease brings me to let my PSA be controlled more often than normal.
All the best and see you soon.
Posted by: Wolfgang Luenenbuerger-Reidenbach at September 18, 2008 3:34 AM
Richard,
First of all I want to wish you a speedy recovery and that any side-effects disappear as fast as possible.
Many people want to keep their medical experiences either private or within a close circle of family & friends, but sharing your story openly is clearly giving something to the community- not just to the guys who face something similar, but to their families and friends who can better understand how difficult it is with often conflicting advice from experts.
Thank you for taking the time and for helping others with practical advice from a patient's perspective. I'm amazed that you were able to write such a thoughtful and truly helpful post from your hospital bed. Testament perhaps to your rapid recovery!
Posted by: Keith Childs at September 18, 2008 5:06 AM
Thanks for sharing your story. My dad went through the same thing a couple years ago, and I remember how hard it was for him to tell me (had to do it by phone as I live many states away). We had another scare a few weeks ago, but it doesn't look like it's coming back.
Good luck with your recovery and getting back to work and life!
Posted by: Jenny at September 18, 2008 7:54 AM
Hi glad to hear you are ok and I think it is great that you are talking about this.
Posted by: betsy at September 18, 2008 10:22 AM
Richard,
Good luck with your recovery. You have already shown the resolve to beat it.
It was courageous of you to share your story. It is a service to men our age, especially ones who are "forever young."
The next good sweat awaits you anxiously.
All the best.
Posted by: Bill Heyman at September 18, 2008 10:28 AM
Stay strong Richard; recover well, Gerry.
Posted by: Gerry McCusker at September 19, 2008 12:43 AM
Our thoughts and prayers are with you. Best of wishes for a speedy recovery.
Gary
Posted by: Gary Dunlap at September 19, 2008 11:46 AM
Richard - Get Well Soon!
I'm a survivor and I know you will be too. Question your doctors incessantly. The cure is as much in your mind as it is in their medicine and surgeries.
Here's a great book written by a long time oncologist about the miracles he's witnessed.
Posted by: Craig Klein at September 19, 2008 2:27 PM
Wishing you a speedy comeback to normalcy..take care...
Posted by: Mahesh CR at September 21, 2008 12:11 PM
I'm so sorry to hear about your illness Richard. It's been many years since we last spoke in Chicago.
Best wishes for a quick and complete recovery.
Posted by: Debora Allen at September 21, 2008 6:05 PM
Richard,
So happy to hear you have cancer under control - it's fantastic for you to share your story. A real inspiration!
Stay well - all my best from Sydney!
Walter
Posted by: Walter Jennings at September 21, 2008 11:00 PM
Dear Richard,
I don't think we've ever met but I've admired you from afar for many years. I will keep you in my thoughts and prayers. Thank you for your courage and generosity in sharing this very personal experience. I'm sure it will be valuable information for others who, unfortunately, may face a similar situation. I totally agree with your advice about having to be a strong advocate for your own medical care, having supported my late husband who (to the surprise of his doctors) lived with a malignant brain tumor for 17 years. Questioning what our doctors tell us; taking notes of every conversation with doctors (preferably by an engaged family member or friend); not accepting what doctors say at face value; getting a second (third, etc.) opinion if warranted; and considering/seeking complementary treatments, I believe, are part of how we must assertively deal with our own medical care. My best wishes for your full and speedy recovery.
Warm regards, Patrice Tanaka
Posted by: Patrice Tanaka at September 22, 2008 10:34 PM
Richard, thank you for your courage in sharing your story. If more men were willing to discuss their health issues and worries, our fathers, husbands and brothers would live longer, healthier lives with the benefit of greater awareness and shared knowledge. Wishing you a speedy recovery.
Posted by: Robyn Sefiani at September 23, 2008 6:15 AM
Richard,
Sorry to read about your illness. I wish you a speedy recovery. Your testimonial will inspire many people, this is a brave and useful act.
Posted by: Robert de Quelen at September 26, 2008 10:45 AM
I learned about your prostate cancer from Nancy Turett, who has been involved with the American Cancer Society. I have been pretty much the same journed as you a year ago September. I chose robotic surgery. As the CEO of the American Cancer Society, I certainly felt that I had information at my fingertips, which is avaliable to anyone. While it was tough to navigate know I would utimatly have to make a decision. I was very confident with my choice. Overall I fell very good. Dealing with the side effects is not easy but it really does get better as so many people told me who had been through this experience. I have also participated in Man to Man groups (prostate cancer support group), which has been helpful and reassuring. I wish you the best of luck.
Posted by: Don Distasio at September 27, 2008 12:42 PM
Richard
We pray that the New Year brings you a quick and complete recovery. Love to you and the whole Edelman family. David, Beryl & Jonathan Davis
Posted by: David Davis at September 29, 2008 9:12 AM
Richard, you're a courageous and eloquent man. I pray that the New Year will bring you quick and total recovery, restored vigor and your usual enthusiasm for life.
Posted by: Paulette Barrett at September 29, 2008 2:23 PM
Richard you are amazing - an inspiration to all of us by the way you participate in life. Best wishes and prayers. Fran.
Posted by: Fran at September 29, 2008 11:49 PM
Richard, as always, you translate with insight and clarity a difficult situation. And by turning outward to others, you take a potentially devastating health scenario, and find the opportunity and learnings for yourself and others.
3 bouts of cancer in the '80's ironically prepared me for dealing with the long term consequences of living with HIV. Seizing control of all that you can is empowering and about the only way to prevail.
Humor is the other potent tool in your arsenal. I'm sure you've had to tap into it. For me, it was especially effective when handling the 3 classic lines from well-meaning friends who didn't have a clue what to say in times of crisis, "These things happen for a reason", The Lord never gives you mroe than you can handle", and my personal favorite, "I know everything will be fine"!
You and your family are in my prayers for a strong and full recovery and continuing good health.
Barry
Posted by: Barry Collodi at October 7, 2008 7:24 AM
Richard -
Given your seemingly endless energy, drive and overall fitness, it's hard to imagine you sitting down for a break, let alone prostate surgery.
After being in a coma for 3 weeks back in 2003, the whole world took on a different meaning for me. I'm sure it will for you as well -- in a very positive way.
Heal well and heal fast. You have lots more years to live.
Bennett Kleinberg
Posted by: Bennett Kleinberg at October 7, 2008 2:00 PM
I am so pleased you are recovering so quickly and I think your account has been so heartening and important for people to read. I hope you got my messages and the info. you requested. Hope all continues. We have quite a mess here and who knows what will happen.
Posted by: betsy gotbaum at October 21, 2008 12:28 PM