Category: Personal Experiences

Personal Experiences – A Media Professional’s Journey

Larry is a successful professional, working in, and writing for, the media business for 45 years. He is married, with one child, who has just recently graduated from college. At 65, he remains active and working, including the regular trip to the golf course. Here is his story:

I had a routine physical at age 53 in 2003. I had been so used to getting normal results on everything to that point, that getting a phone call from my doctor on a Saturday evening around 9 PM was strange indeed. I remember there was a big fight on the TV I was watching, and I had earlier had a wonderful meal and was sipping a glass of wine and thoroughly enjoying myself when the phone rang. It turned out to be the new doctor who had examined me earlier in the week. I was with an HMO at the time, and he went on to say that he was just at the hospital doing rounds and had a few extra moments and by the way, I had elevated PSA. “Okay,” I said, thinking not much of it and asked, “What does that mean?”

“Oh, you might have a little cancer in there,” he replied.

That’s not the news you want to hear by phone out of the blue on a Saturday night, or anytime. So much for bedside manner.

I went in for a biopsy on a Tuesday and the nurse told me on the way out that if there was a positive finding, that they would call me no later than Friday. So I’m sitting next to the phone late afternoon on Friday with my wife by my side. I hadn’t heard anything and had even called earlier in the day. I was told the same thing. That if there was a positive finding they would call. If not, I was in the clear. I recall watching the clock as the hands crept toward 6 PM. I reasoned that if they did not call by then, I could go celebrate. At 5:59 PM the phone rang and I got the news that I was now a member of a club I did not want to join. I thought it odd, the way this HMO chose to inform their patients that they had cancer. My wife and I had a good cry together. The only cry I have allowed myself in my journey thus far.

So days later I find myself sitting across the desk from a very gung-ho urologist I had been referred to at the HMO’s main office. He was head of the department and had performed the biopsy on me earlier that week and I was there to discuss the results. He looked me square in the eye and with a look of certainty said, “You have a significant cancer, but I can cure you!”

At the time I knew little of PSA and Gleason score and all the rest and thought for sure that I indeed had a significant cancer. I was mentally preparing to get my affairs in order. With a PSA of 5.3 and a Gleason 3+4 = 7, and with my relatively young age, I was told that surgery was the best option. He referred me to Walsh’s book and scheduled me promptly for surgery in 30 days. He also recommended that I begin taking Kegel exercise classes, which I dutifully did. I got pretty good at squeezing and releasing. I was getting mentally prepared for an operation and I was also doing a lot of mental gymnastics. I was determined to meet this adversity head on and defeat it.

In the interim, a good friend of mine suggested I go see our mutual friend who was a pastor in the area and had officiated my wife’s and my wedding ceremony. I had lunch with him and he attempted to talk me down from the tree. He was very kind and caring and also suggested I get in touch with the Fullerton Prostate Forum, to whom he had referred many other men with prostate cancer in the past.

That suggestion turned out to be a very important one in my prostate cancer journey. I went to a newly diagnosed class and was quickly taken under the wings of more than one of the group’s leaders. I found the group to be extremely informative, comforting and exceptionally educational. With their guidance I quickly threw myself into a dedicated examination PCa in general and of various treatment choices I had in front of me. It wasn’t long until I canceled my surgery and decided to take a little more time educating myself. I learned that my tumor or tumors had most likely been growing for years so there was no immediate need to rush into a treatment.

After a few weeks of reexamining my options, I zeroed in on radiation as a front line therapy. The folks at the HMO were still convinced I had a pretty serious case and since I was no longer interested in surgery, they recommended brachytherapy with an external boost. I went in for some pre-seeding tests and met with a physicist who planned the placement of the seeds. They were going to place a rather large number of seeds and since I did not yet know anything about brachytherapy I went along with it. (In retrospect, I discovered, the number of seeds they planned to insert were far more than the number I ultimately received when I selected brachytherapy years later. This could have resulted in grave complications for me.)

I recall going round and round with them about the external boost part, however. Through the Forum, I had learned that IMRT was then the state of the art for external beam radiation. Yet they only had one IMRT machine in Hollywood that they reserved for cancers other than prostate. I was told PCa wasn’t serious enough for their high-tech machine, and I’d get their conventional 3-D conformal external protocol they use for all of their prostate cancer patients. But I thought they told me I had a “significant cancer?” I wasn’t pleased, but nonetheless, I set a date for seed implantation to be followed by external.

I continued to read everything I could find on PCa and went to nearly every meeting at the Forum. Our monthly meetings are on the last Thursday evening of the month. My brachytherapy surgery was set for 5 AM on a Friday. I was not going to go to the regular Thursday meeting as I knew the speaker was to be Bob Liebowitz who was going to give a talk about hormonal drugs for the treatment of PCa, and since I had made my decision and had an early morning ahead, I wasn’t going to attend. But during the day on that Thursday I got a frantic call from a friend who had just gotten the news that he had prostate cancer. I quickly told him I’d be by later and would personally take him to the Forum so he could start his learning process.

That evening I listened to Bob Liebowitz’s talk, who touted the use of Triple Hormonal Blockade (Lupron, Casodex and Proscar for a minimum of 12 months and up to 18) for early stage, localized prostate cancer. He offered that although not curative, many of his patients had managed their disease for many years with this therapy alone. This appealed to me as I was certain that advancement in clinical treatments for PCa would be quickly achieved. I was intrigued by the possibility of newer and better treatments being available just around the corner. Besides that, in his talk Dr. Bob went through a litany of stories from some of his patients who suffered some pretty severe side effects from various radiation therapies gone bad. I left that meeting rethinking my decision to have seeds the following morning. By the time I got home I had developed such a case of the flu that surgery the next morning would not be possible. I’m certain they were not happy with me after my late night phone call to cancel, but I looked upon it as divine intervention.

So I became one of the first individuals to ever receive Triple Hormonal Blockade for early-stage localized prostate cancer within the particular HMO I was enrolled in. When they turned me down the first time, I returned with major studies printed out that indicated that my choice of treatment was medically sound. They eventually relented and I received my first dose of Lupron, Casodex and Proscar in June of 2003. My PSA quickly dropped to undetectable and at first, the side effects were tolerable. (My friend who I took to the meeting that night became a patient of Bob Liebowitz’s and to this day has good management of his disease, tolerates the side effects of the drugs well, and is happy with his decision.)

After 12 months of treatment, I maintained with daily Proscar only during the next five years. I also refined my diet, finding the writings of Snuffy Meyers and Mark Moyad most informative. I had always eaten well, a holdover from my bean sprout days in the 60’s where I was a vegetarian for more than 15 years. When I groused one time in my group that I had maintained good eating habits and yet I still got PCa, one of the wise, older men said, “You should be happy. If you’d have eaten poorly all those years, you might have gotten a worse case than the garden variety case you have.” I was reminded to be grateful. I decided to redouble my efforts to live healthily and if I were ever going to succumb to this disease, I was going to be the healthiest guy to have ever died from prostate cancer.

In my study I was particularly attracted to just about anything Stephen Strum had to say on PCa. I read virtually everything he’d published, including his articles at PCRI, his blog correspondence, and his book, A Primer on Prostate Cancer. I’ve listened to him speak many times and have developed a great personal rapport with him over the years and hold him in high regard.

I managed to leave the HMO, and thanks to an insurance executive in our group, I learned how to actually get medical coverage as one with a pre-existing condition. What a concept! I switched doctors and began seeing Mark Scholz in Marina del Rey, Ca., as my quarterback. Mark is simply fantastic, and like Stephen Strum, has a very progressive perspective with respect to PCa and his people skills are off the chart. I firmly believe the rapport/trust factor between patient and doctor is vitally important in choosing a treating physician. I must have seen 15 different doctors before deciding upon Mark Scholz. I was also attracted to Mark because prostate cancer is all he does and had been involved for some 20 plus years at that time. I did not want someone who only did PCa part time, along with other cancers.

Early in those first five years I quickly got a hold of my original biopsy slides from the HMO. Getting possession of them is another story and suffice it to say I was made to feel I was robbing a bank when I presented myself and after being refused them, promptly said they were mine, I paid for them, and if I didn’t get them, I would be filing complaints all the way up to the California Medical Board. After they relented, I then sent them to David Bostwick back East and he actually downgraded my Gleason to a 3+3=6, which was some small comfort. This idea of a newbie having his original biopsy slides reviewed by an expert comes from Stephen Strum and is something we strongly suggest at the Forum. Knowing for sure one’s Gleason score along with as many other bio-markers that are relevant as well has having good imaging information gives one much more information than the average prostate cancer patient has in order to be able to make an informed decision on treatment. Information is power, so an enlightened patient can better chart a treatment course armed with as much information on his particular case as possible. We are definitely in an era where we can and should rely on more data points than PSA, Gleason score and black and white ultrasound imaging.

I also began an ongoing relationship with Duke Bahn, who I feel is an imaging master. I had a series of Color Doppler ultrasounds with him that gave me a baseline and later confirmed that my cancer was not growing, but had shrunk with the use to the hormonal drugs. One thing this imaging (in the hands of an expert) did was to confirm that my main tumor on the left side of my gland was dangerously close to the nerve bundle on that side, and if I had gotten surgery, there was a chance the margin there would not have been clear post surgery. I was learning among other things that with PCa it’s location, location, location, and that most urologists at the time were not doing any more imaging than black and white pattern biopsies. I also realized that after becoming my own “M.D.,” or Medical Detective, as Stephen Strum suggests, that had I gone along with the radiation program first outlined for me by my HMO, it would most likely have been overkill and I very well may be peeing into diapers today, as my prostate was on the small side and the tumor size not that significant after all.

I had found out about a program at UCSF that had received a grant for a long term study using endorectal MRI with spectroscopy. I availed myself of that and had a total of three studies over the years which all confirmed Duke Bahn’s findings.

Importantly, during those first years on my journey, I became a director in the Fullerton Prostate Forum, which has now become The Prostate Forum of Orange County. I never missed a talk and went to each year’s national PCa conference sponsored by PCRI. (The Fullerton Prostate Forum was the first to hold a national conference in the early 90’s, and we are proud of that!)

It was most rewarding to have had the opportunity to work with and counsel newly diagnosed patients over the years. I would strongly recommend to anyone newly diagnosed to seek a support group and spend some time talking with others who have gone on the journey before you. Their experiences and insights are invaluable.

So one great benefit of being involved with a support group is being able to see what others have done and to learn that each man’s case is unique. Quite a few guys in our group chose to treat with Triple Hormonal Therapy. Many are still on it. And many tolerate the side effects quite well. But I was growing weary of them. For me there was a great loss of libido, loss of energy, memory loss and difficulty sleeping. And these symptoms for me were the result of only having been on the regimen for 12 months. Luckily my PSA was holding, then began creeping upward slowly. As year five post therapy approached it was time to either re-treat or move into another local treatment.

Israel Barken had spoken to our group many times and I had the opportunity to get to know him. I love his out-of-the-box thinking and decided to try only using only Casodex and Proscar for my next round of hormonal treatment. I reasoned with Mark Scholz that I would continue to monitor PSA every three months and continue the color Doppler ultrasounds. If there was any rise in PSA or tumor growth, I would opt for either adding Lupron again or go to radiation. So I did 12 months of this dual drug protocol and my PSA dropped nicely and held for another two and a half years post treatment. The side effects were certainly more tolerable for me than with the triple blockade.

This held for another couple of years and when it was time to re-treat, with the same agreement in terms of imaging and monitoring, I experimented with low dose Casodex and Proscar. For me, the low dose Casodex (4x per week for 12 months) was almost as effective as the normal dose and again, side effects were minimal. But when PSA started to rise after around year two, I told Mark that I was getting weary of the hormonal protocol and was coming to the decision that there wasn’t a silver bullet, a no-side-effect cure out there I had been waiting for. I had high hopes for photodynamic therapy, for example, but that promising therapy, along with other miracle cures I had become aware of had faded away as quickly as they had appeared.

When I asked him his advice as to my next step, without hesitation he suggested brachytherapy. He wrote Peter Grimm’s name and number down, and since I had met Peter’s associate, John Blasko, who’s now retired and who had spoken before our group, I quickly decided that I would adhere to the principle I had learned and counseled at the Forum. When it comes to a life threatening disease, one does well to seek out the expertise of the artists; those doctors who stand head and shoulders above the rest. If it meant a couple of trips to Seattle, then so be it. Besides, if this advice came from Mark, it had to be spot on.

So off I went to Seattle in November of 2011 for a consultation with Peter Grimm. The trip was easy from Southern California and I was impressed with the clinic and the staff. Peter took a lot of time with me going over my case from soup to nuts. The simpatico was definitely there; I found Peter Grimm to be a very thorough and compassionate doctor. The data he showed me (from the Prostate Cancer Treatment Research Foundation) looked good and was in line with what I had managed to learn of brachytherapy through the Forum. Peter discussed a treatment plan and also advised treating the area on the escape side of my left nerve bundle with seeds that would cover just outside the gland in case the tumor had begun probing outside of the capsule. That sounded like the right approach to me. Peter also said he probably would not place more than 20 seeds as he thought that amount would do the job and not lead to complications. This was far fewer than the HMO docs were set to place years earlier before I decided to pull the plug on them.

I quickly decided that I after nearly nine years and dozens of doctors I had found who it was that would treat me locally. Importantly, I figured who better to do my procedure than one of the experts who pioneered the thing, has done thousands of cases and teaches other doctors? From reading the literature and from counselling other men, I’d found out that outcomes in prostate cancer therapy are in direct relation to the competency of the treating physician. As I’ve mentioned, I wanted to put myself in the hands of one of the country’s (if not the world’s) experts. (It was my life and my future I was dealing with here.)

I returned to Seattle by myself on a Tuesday afternoon, December 13, 2011. I had booked a room close to the outpatient clinic where I was scheduled for my brachytherapy early the next day. I had also prearranged a nurse to meet me there after my procedure and accompany me back to my hotel.

Peter met me as I was being prepped and introduced me to a female medical student and asked if I minded if she observed. I said fine, as long as there’d be no laughing and joking during the procedure, and we all shared a light moment together. (I always try to muster as much humor in these kind of situations as possible). I went under a few minutes later and it seemed like just minutes later I awoke with several folks around me asking me to pee. Groggy from the anesthesia, and not yet certain where I was, I asked if they were sure. I said, “You mean you want me to just let it rip right here?” They all nodded, so I let ‘er go. Right into a catheter. I did so, and a slight pain from the catheter was really the only thing I was feeling. I think they all clapped. (When you pee after getting seeds, I found out later, it means you are good to go…excuse my bad pun.)

I made my way back to my hotel by cab, and the nice nurse sat with me for a while until I managed to convince her I was not about to expire. I sent her on her way and rested the remainder of the day. By evening, I was ready for a nice meal.

The next day I returned to Peter’s office with no pain or discomfort whatsoever. Peter sent me out for some imaging and when that came back in good order, he told me I was free to go home. By 3:00 in the afternoon I was on a flight back to Orange County.

I did not experience any side effects from my brachytherapy other than some urgency to urinate. To be fair, I had been experiencing some of that since the early days post diagnosis. And to this day, I do have to be concerned about knowing where bathrooms are. When I’m out I often have to visit the men’s room out of general principle just to make sure I’m not caught in a situation where I have to hold it longer than I would want to. In our group we have a standing joke that life for a prostate cancer patient is what happens in between going to the bathroom.

Before my brachytherapy I was experiencing loss of libido, as I’ve mentioned. Although I have natural, nocturnal erections, for any sexual activity I use either oral medication or lately I’ve added injectable medicine. Neither are like how things used to be, but workable. I’ve accepted the trade-off. Same for some shrinkage I’ve experienced; probably from a combination of both therapies. And I admit I could have been better at regularly taking the oral medications throughout my journey to help prevent this. Use it or lose it.

My PSAs went down to around 1.00 shortly after my procedure and have bottomed out to where they are now at .005, 36 months post treatment. Thankfully, prostate cancer is no longer a great concern for me. I’m enjoying this time post treatment respectful of the disease, but not letting it be a dominate factor in my life.

And as I’ve heard from many others who have walked this path, having had prostate cancer has offered many rewards I frankly never expected. I’ve met some great men in the process, some of whom remain friends. I’ve gotten a wonderful return when I meet a newbie and help him along on his journey. The old adage of turning a lemon into lemonade sure applies here for me.

And as for the pastor who helped me greatly at the beginning of my journey. Well, he called me a few years back to inform me that he had also become a member of the club. I was so grateful that I got an immediate opportunity to return the favor. I sent him all the info I thought he’d benefit from, referred him to the literature as well as to some treating physicians. He selected a doctor and a treatment plan and today is doing quite well in his retirement.

For me the journey has been a blessing, filled with more ups than downs. The people I’ve met reassure me that there are many good people out there, ready to help, who represent the best of our humanity. My sincere good wishes to all who are facing a fight with cancer of any variety. I am hopeful we’ll find a way to manage, if not cure this disease in our lifetime.

Personal Experiences- Aggressive Prostate Cancer

In December 2011, at 56 years old, I was managing a software organization for a large computer company. With new systems on the line, we were working long hours, seven days a week. On Christmas holiday, I went in to see my Doctor for my yearly checkup and discovered that my blood Pressure, cholesterol and PSA were all elevated. My PSA was twelve vs a normal reading the year before. I had been having some physical discomfort, and urgency issues when I drank coffee or alcohol. The urgency issues, I attributed to the diuretic I was taking to help control my blood pressure. My family Doctor and I discussed that prostate cancer or that some sort of infection might elevate my PSA, but given that prostate cancer typically is a slow moving cancer, we agreed on a course of antibiotics. I found it much easier to believe I had an infection, which could easily be cured.

I returned home in April 2012, after spending a month traveling on business, to complete our system release. I immediately scheduled time with my Doctor. Blood tests showed my PSA continued to rise, but not as I had read about on the internet and other research. My PSA reading was now sixteen rising by almost four points in as many months. My Doctor suggested I take the first available urologist appointment, which I did.

During the month of May, I continued to work, while preoccupied with the idea that I may have cancer. When I met with my urologist, he performed a digital rectal exam, DRE, massaging the prostate and taking blood samples. The DRE confirmed that I most likely had prostate cancer, and my blood work all but confirmed this, as my PSA reading was again above sixteen. Rather than perform the biopsy next, my Urologist suggested an MRI to capture images before the prostate was traumatized by the biopsy. By sequencing the MRI first, we would have more data, faster.

By mid-June, I had completed my MRI and biopsy. The diagnosis was very clear, CANCER. PSA was now 20+, Gleason Score of 8, Stage T3C. Not just cancer, but a very aggressive cancer. I felt as if I was hit by a sledge hammer. But there was no time to relax, this was moving fast, so I needed to as well.

June 1st MRI in Bellevue
June 7th Biopsy in Kirkland (12 Samples)
June 18th Bone Scan in Bellevue
June 20th Brachytherapist, in Seattle to discuss the seed option
June 21st Oncologist, in Redmond to discuss IMRT options
June 26th Surgeon, in Seattle to discuss surgery options
June 27th Surgeon, in LA to discuss surgery options
June 28th Began Treatment
July 2nd Called into work …… stopped work

On June 20th, I met with Dr. Peter Grimm, a Radiation Oncologist in Seattle. During our meeting Dr. Grimm produced a document outlining the work of the Prostate Cancer Results Study Group, PCRSG. Because of the advanced stage of my cancer, Dr. Grimm skipped over the low and intermediate risk groups, and began our meeting with the treatment options for high risk patients. The data clearly showed by combining several treatments, my risk of re-occurrence could greatly be reduced, and the data projected these rates for up to 15 years. Later that same week, the surgeon in LA confirmed the recommendations of the study group. Given that he was identified as one of the top surgeons in the US, this carried a lot of weight.

When I returned to Seattle, I began my treatment straight away. My treatment plan combined three different treatments, greatly raising my chances for a cure. When my treatment began, my last PSA reading was above forty. One and one half years after completing my treatment, my cancer remains in remission, with PSA readings less than point zero four, (<.04). While my side effects from the treatment(s) may be more severe than most, I continue to work toward recovery. I did what I could in the way of research, to see if there were more steps I could take beyond the treatment(s), prescribed by my Doctors. After reading many books about cancer, lifestyle and diet, I decided to make some changes. “The China Study”, by T. Colin Campbell, convinced me to adopt a mostly plant based or vegan diet . During my treatment, I signed up for hot yoga, going when I could, and am now regaining the strength to jog and go to the driving range.

I understand that my case is not normal for prostate cancer, as most cases are slow moving, providing much more time to choose the right treatment. The treatment results comparison developed by the PCRSG helped to develop the roadmap I needed to make the right treatment choice. I realize there is no way I could have replicated the research done by this team of doctors. I would like to express my thanks to the Prostate Cancer Treatment Research Foundation, for working on behalf of patients, like me, to make this information available.

Dean
Bellevue, WA

PS. I need to take the time to acknowledge my wonderful wife Wendy. Wendy accompanied me, and in most cases drove me to every appointment, carrying her little green notebook, recording doctors comment, test results, next steps, medications and every bit of detail. Without her love, support, and that notebook, there is no way I could recall this story.

Personal Experiences- Busy Executive Faces an Important Decision

Introduction

Seattle resident Fred, at age 55, had a full and active life in the Spring of 2012. Fifteen years into a career with a small Seattle software company, he had risen to President, and held an equity stake in the company. The company provides Business Intelligence tools to manufacturers and distributors across North America. These software tools help provide critical information to management so they can make informed decisions. Little did he know that he was about to be faced with one of the biggest decisions of his life.

Diagnosis

Fred’s doctor had been monitoring his PSA level, which had been rising slowly over the course of several years. When the test revealed an unusually high reading of 4.1 the doctor decided it was time for a closer look. On a Tuesday afternoon in April 2012, a Seattle urologist performed a routine, 12-core prostate biopsy.

The life-changing call came the next day: “Fred, the biopsy shows you have prostate cancer. It is present in all 12 of the samples, some as much as 100%, and there is no indication that it is contained to the prostate. Let’s meet on Friday to discuss your options. Bring your family.”

Search

Having a career that specializes in helping people make decisions, the next step was obvious; get the information necessary to consider the treatment options, and choose the best one for his particular diagnosis. Fred began a thorough, deliberate process of reviewing the available treatment options, with an emphasis on side-effects. Over the course of the next few months he would spend hundreds of hours researching and reading, and see over a dozen doctors. Most of these conversations focused on the process and the potential side-effects of the recommended treatment option. The result was a dizzying multi-dimensional array of things to consider. Which was preferable, a higher chance of incontinence, or a higher chance of impotence? Or some combination of the two? Would you prefer surgery, where the impact is instantaneous and the recovery is gradual, or radiation, where the impact is delayed and the results may not be known for some time?

One pattern began to emerge as the process moved forward; medical providers recommend the treatment that they offer. Surgeons recommend surgery. Radiation oncologists recommend radiation. It became apparent that the medical community had assets, equipment and facilities that they needed to keep busy, and they were all motivated to bring in new patients.

An appointment with the family physician, helped bring it all into focus. After hearing all of the confusion and anxiety, he asked “Well, what is the most important thing?”. After Fred launched into a description of the treatment options and side effects the doctor interrupted and simply said “Don’t forget, Fred, the most important thing is this: you want to live”. Suddenly it was clear what had been missing. Efficacy, in terms of cancer control trumped every other consideration. And yet, Fred had found virtually no information about the relative recurrence and survival rates for each of the treatments.

The research results from the Prostate Cancer Treatment Research Foundation provided just the information he had been missing.

The Prostate Cancer Treatment Research Foundation was formed to help prostate cancer patients by improving treatment through education and research. Interestingly, there has never been a randomized study of prostate cancer treatment outcomes, and patients find it difficult to get reliable, unbiased information about treatment results. The Foundation supports The Prostate Cancer Results Study Group (PCRSG) in its efforts to evaluate the comparative effectiveness of prostate cancer treatments using current modern literature results as a basis. The ongoing task of the group is to find comparable studies and present these studies and outcomes in an easily-understandable form to all interested groups. The Foundation goal is simple: get the best information to every patient with prostate cancer.

Decision

After a thorough review of the treatment options, and the research results, Fred chose a duo-therapy; radioactive seed implant (brachytherapy) combined with a 5-week regimen of external beam radiation (EBRT).

Outcome

Fred finished treatment in October of 2012. Prior to treatment, his PSA level was 4.1 and rising. When tested in November, it was 0.27, and has been falling steadily since then. His symptoms and side-effects have been manageable, and he is getting back to a normal routine.

Fred says, “My cancer diagnosis was a life-changing event. I have a new appreciation for this wonderful life, for the people around me, and for the simple pleasures that are everywhere, if we just take a moment to appreciate them. A prostate-cancer diagnosis is not a death sentence. Good physicians, and access to the right information can lead to a good outcome. I’m very grateful for the on-going work of the Prostate Cancer Treatment Research Foundation”.