Beginning the search for a good oncologist

It's been a month. I've had conversations with my primary care doc and his assistant. I've looked at the lab results. I've been doing some reading. Now, I'm getting back on the trail of a good oncologist who is not committed to any one treatment and can act as my medical reality checker in this journey.

My basic policy now is to avoid treatment as long as possible for these reasons:

1. Most of the current treatments have a high probability of leaving one with unacceptable and irreversible consequences - at least for me.
2. Medical science progresses and new treatments and medicines are being developed as I write this. Not hoping for miracles, but putting some trust on the advance of medicine in this field.
3. I'm seventy years old. Being subject to serious surgery or radiation treatments has their own inherent dangers. I recall the urologist in New York who said the only way he would operate on a man over seventy was if both that man's parents were also in the OR.
4. A recent study published in the AMA Journal showed that of men with high risk cases, there was only a 5% difference in mortality between the ones who underwent treatment and those who did not.
5. Something else is probably going to get me first.
6. I value the quality of my life over the quantity of it.

Follow Up Visit, Breathing Room, and Buy the Book

Had a good follow up visit with my primary health PA today. The most pressing issue is these damn allergies that are keeping my nose stopped up and my cough going. I am now armed with information and medicine, along with a routine to finally get rid of the little buggers for good.

We talked about my desires and approach to PC. My PA put my wife at ease with the information that I have on spread outside the gland. I'd tried to support this notion before, but it's good that she got the "official" word. I didn't mind hearing it again either.

Given my age and the percentage and grade of cells found by the biopsy, I have plenty of time to monitor this thing and make some considered decisions.

In this case, time is on my side. More advances in medicine and technology will be made in the next few years, all to my advantage I believe. And, while that time goes on, I might get caught by the grim reaper in entirely some other fashion.

I must repeat. Don't get rushed into anything you may regret.

Whenever the subject of prostate cancer comes up around men, and women too, the cancer word kind of takes over the conversation and perceptions of most people. As the authors of The Invasion of the Prostate Snatchers point out, for most of us, this should be considered as a condition rather than a disease with the reputation that cancer enjoys. But, I've seen this happen, the attitude and perceptions of those involved in the conversation always move toward doing something. Treatment. Cure.

I've not met many men who had PC, or have it, that were not moved toward some kind of treatment pretty early in the diagnosis stage. And, most did not fully understand the consequences of treatment.

Don't let that be you. Buy that book and learn about what we are dealing with - the condition, and the industry that has developed around it. The Invasion of the Prostate Snatchers. A most significant and important book.

The Depression Group

Yesterday I drove for an hour to attend a prostate cancer support group. Once I found the place, I couldn't find the group meeting place. Each room I was referred to was vacant. I then saw five men sitting around a table in an open area and walked over. Yes, this was the place. They had decided to move, but had not left a notice of that anywhere. Not an auspicious beginning. It soon got worse.

I had to tell my story, of course, but I didn't get all that far before the group, exclusive of the leader who seemed to be up on the topic and very open minded but had to leave to attend to business, took over. The basic story was that each of the four men there had already undergone some form of treatment, and, as far as I could tell, were not thrilled with the outcome. Some talked as if they were "cured" while others worried about remission. All complained about some undesirable side effect. Incontinence was barely mentioned but alluded to of course. The focus of discussion quickly moved to the need to make a decision on treatment and get on with it. Just the opposite of my belief.

I mentioned that one good thing about waiting on any kind of treatment is the likelihood of new and better options as medicine learns more about PC. While most of the men agreed that this was true, they didn't want to linger here. Their main focus was telling stories about their treatments, their doctors, and a little about side effects. There was much discussion along the lines of "what's your PSA? What's your gleason?" Sort of like, "what's your sign."

However, running through the conversations was the fact that all of them had been rushed into a treatment decision by their doctors. One man recommended that I go to a local doctor who was an "expert" in PC. I knew of this doctor. He is a radiation oncologist, and guess what, he favors early treatment with radiation. There was also a recommendation to see this robotic surgeon. "He's really good." There was discussion about needing both seed implants and general radiation together. Some gruesome tales of treatments of various kind. Only one of the group mentioned that he wished he had waited before jumping into treatments.

I also learned that one of the urologists I had been referred to is the guy who slammed one of the group with a 6-month effective hormone shot very soon after his diagnosis. Looking back, the patient wished he had taken the time to understand his condition and options, and the possible side effects of various treatments. He would not have acted so swiftly.

In the end, these men validated what I have been learning. Most doctors will treat PC, regardless of it's severity, as something that needs treatment rather quickly. Their recommended course is whatever their specialty happens to be, naturally. Regardless of the fact that men with high risk factors are no more likely to die within ten years than are men with low risk factors. And, the likelihood is around 5%.

In addition to all this, little discussion was made of the risks of these radical treatments, especially surgery, on older men. One of the guys suffered a severe infection resulting from a biopsy, but this didn't raise any red flags. Probably because, other than him, the rest had escaped serious consequences, or didn't talk about them.

So, rather than support, I felt depressed. I need a group of men who are more understanding of PC and modern thinking on the subject and some who are refuseniks like me who prefer to keep their quality of life and wait.

I know this sounds harsh, but the general impression I left with is that these men are afraid to die. Now, I am fearful as well, but I also know that dying is the natural end of life and the manner in which we choose to live, and to die, matters. Undergoing long and difficult treatment processes, with life-altering after effects that seriously degrade those few years left does not seem worth it to me. If I was not seventy years old, I might think otherwise.

One of the men, the least educated of the group, but probably the most perceptive, said something to the effect that it really doesn't matter. You might get killed by a car tomorrow.

Exactly.

Support Group Meeting

Tomorrow I'm driving to Pueblo, Colorado to attend my first UsTOO support group meeting. I've never been strong on groups. All of the groups and clubs I've joined in the past have been duds, except for one, which isn't so much a club as a like-minded bunch who enjoy getting together each month and talking about their favorite hobby.

I suspect this PC support group will be different. Prostate cancer isn't a hobby. It's a reminder that life is short, we are all mortal and the journey will end sooner or later. I think having PC is a good thing in that it brings the doorway into view for the first time. We all know it's out there, the door to the undiscovered country, but I think most of us don't really believe it. Too far in the future (whatever that is), too abstract and mostly something other people have to experience. Not any more.

The more I think about this, the more I am convinced that as Lincoln was supposed to have said, "It's not the years in the life, but the life in the years." I am not signing up for a short segment of life lived with awful and undignified side effects. Personal quality of life and medical ethics should intersect in a doctor's office, although it has been my experience that it most often does not. And, from the source materials I read, especially the book, The Invasion of the Prostate Snatchers, that healing intersection does not exist for the majority of health professionals dealing with men with prostate cancer.

One of the authors of The Invasion of the Prostate Snatchers, diagnosed with PC and unwilling to be pushed into surgery, was told variations on, 'you are stupid', 'you'll be dead in a year', 'we'll schedule you for next Tuesday." Although during the diagnosis meeting, I got the signs that my urologist was harried, new to the profession, pushy and totally unfamiliar with doctor-patient relationships and the caution to 'do no harm' and fired him later than I should have, reading his notes later told the same sad tale. Even though my incidence is low-grade and low risk with no evidence of the cancer spreading anywhere else, he noted that he thought I shouldn't do watchful waiting because, "of the risks". He didn't bother to elaborate on what those risks are. Probably because they are low to non-existent, given my condition and age.

A 2008 study by the Mayo Clinic published in the Journal of Urology, April 2008 shows that only 2% of men with Intermediate-Risk and only 5% of men with High-risk PC die from it within ten years. So, given my Low-risk status, and age of seventy years, what kind of risk drove my urologist to state that I should undergo surgery because of the "risks"? I think one of the reasons might be that he wants to operate. That's what he does.

Right after the diagnosis in his office, accompanied by "facts" from my tests and biopsy fired at a machine gun rate, without benefit of consulting or explaining the actual findings themselves (he kept all of the paperwork to himself) he launched into a commercial for robotic surgery, which, it turned out, he was specializing in. He didn't spare the details, although all of his details were good. He didn't talk about the dark side, possible complications of the surgery itself, the extreme difficulty of doing the surgery right even for those who were vastly experienced and capable. Which he was not. He didn't mention that one of the most imminent urologists in the country stated that the would only operate on a man over seventy if both of the patient's parents were also in the OR. Like, never happen.

I subsequently learned that in order for a surgeon to be very good at robotic PC surgery, the average level of experience needed is 240 operations. Taking into account the number of years my guy had been in practice, multiplied by the standing of the medical school he'd graduated from, I figured he was going to need another ten or fifteen years before he would be at the level I'd trust to even seriously consider him doing such a procedure on me.

One of the big reasons I want to attend the support group meeting is that I need the reality-based opinions, knowledge and experience of others who have gone down this road before. It is too often the patient, hearing the words, "you've got cancer", is so vulnerable that he is too open to bad advice given by authority figures at the time. Good thing for me that I am stubborn, cynical and a born "refusenik", to use Ralph Blum's term, or I might have put myself in the hands of a doctor who was not so much concerned about the overall health and well being of his patient, but his own career and practice. If I sound harsh, well, it is a harsh reality.

It's a minefield out there and you have to choose your path carefully. Make sure it is your path, not someone else's. After all, it's your life to live how you choose.

Another Appointment Canceled

After reading "The Invasion of the Prostate Snatchers" (thanks to my lovely wife Barbara for the book) I have become more determined to take charge of my life and my PC. As the authors point out, most specialists see things from the viewpoint of their own specialty. It is no wonder, given the years of training and expense they have put into their professions. However, their biases are not necessarily good for me. Or for most men who have a low and medium risk case of PC. Treatments are, mostly, forever. You have to live with the consequences, some of which are quite frankly awful.

Urologists want to operate. That is what they do. And, from my research, most of them are not all that good at it anyway. Look at the statistics, and do the math. Radiologists want to apply radiation. Cryology specialists want to freeze the gland. All of these are fraught with serious and unpleasant risks and consequences, or side effects. None of which I care to risk.

So, the "old, conservative" urologist that my Doc recommended is, all things considered, a urologist and would view my situation from his perspective, which is to "cure" my PC. Right now, I am not looking for a cure, but a management strategy that will allow me plenty of time to access newer and better methods, medicines and processes that will do a much better job than what is available today. Remember, in the 1990's prostate cancer treatment was in what has been called the "iron lung" stage. Things change rapidly and I want to have time to wait on those changes.

So, I canceled yet another urology appointment. I am looking for a good oncologist and a medical team that works with me and my life preferences.

In the final analysis, something is eventually going to get me, whether it is PC or something else, so I am not overly concerned with the fact of my eventual death. I am grateful that I have gotten the support and information I need to deal with this like a real human being instead of a panic stricken male ego.
One fray at a time, as my father once said.

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Finally, Good News and a Sane Perspective

Yesterday I had a good visit with my primary Doctor. After more reading and serious contemplation, I came to the conclusion that since most PC instances are the non-aggressive, slow developing ones, and mine probably fit that category, I should meet with my main doctor and discuss this. He could give me a good insight on my reasoning, especially since he would have all of the test and clinical data that my first (and, so far, only) urologist refused to share with me.

Before meeting with my Doc, I called the urologist office and canceled my upcoming appointment. I also asked for my records. If I sign a release, they will mail them, which I intend to do next week.

The visit with my Doc was good. He, having the test and clinical data available, reviewed it with me and concluded that, no I don't need to get involved with treatment at this point. His view is that I might benefit from hormone treatments, or possibly none at this point. He personally has experience with an older urologist in the area who is a noted conservative in his approach to PC. I agreed to a referral. This, of course, lifted my spirits since it validated my own opinions.

To be quite blunt about the situation, at this stage of my life I have absolutely no intention of undergoing any "treatment" that would make me sexually dysfunctional and put me in diapers.

Since my next scheduled PC related appointment is with a radiologist, even though he comes highly recommended, is getting canceled today. I see no reason to bounce between urologists and radiologists whose main focus is treatment in their fields of expertise and training.

Scratch One More

One of my best friends came by to visit a couple of days ago. I learned that he has been through this too, and started out with an urologist from the "assembly line" school. "We'll just clip that prostate..."
Not words a guy wants to hear. No sympathy, understanding or basic courtesy. My friend dropped him like a hot rock and went on to find better medical help. I intend to do the same.

In that vein, I embarked on a internet search to learn as much as possible about the radiologist that had been referred by my urologist - the one I just fired. I didn't learn much, because there is not much out there on him, but what I did learn prompted me to cancel my appointment after reading comments by one patient who was pretty pissed off. Now, although these comments may have been posted by someone not fond of this doctor for other reasons, they were pretty detailed and unsettling. This, coupled with no other actual reviews by patients, almost no information about his practice and the fact that he recently graduated from a lower ranked medical school was enough for me.

I am learning that the prostate cancer industry is really huge. The after effects are often worse than the disease, depending on the treatment, and I have read that some people feel it's a money-generating industry for some people who are not so much interested in the whole picture of health and well-being for their patients.

The search continues because the consequences are serious.

Some good news for a change.

Yesterday I learned that my bone scan came back clean. That's the good news. Interestingly, I did not learn this from the urologist that referred me, the one who did my biopsy. He is the one who refused to talk with me about it over the phone. I learned of this from the PA who works with my primary care doctor - over the phone. The hospital that did the bone scan procedure sent the materials to my urologist's office. They forwarded this information along with the rest collected by his office to my primary care doctor. The PA had the kindness and good sense to just straight out tell me. The urologist was insisting that I pay him an office visit for the same information. Now, I don't really know the reasoning behind his decision, but I have the thought that it might have something to do with charging me for an office visit.

I do know that I have already received a bill for the first office visit, which, from experience with the billing processes from other medical offices around here, falls into the super-efficient, very quick category.

I have an appointment with a radiologist, referred by the urologist's office, on Friday. My sense is that although I was told by the urologist that there is no rush in choosing a treatment method, I am being rushed into referrals and appointments dealing with treatment methods. There is a lot more to learn and understand about what's going on in my particular case before I get to the point where I choose a treatment. My wife has ordered a copy of a book entitled The Invasion of the Prostate Snatchers. Before I make any kind of decision I will read this book, and read the fine resources provided to me by my daughter and friends.

I can see where it is easy for a person in this situation to feel that something has to be done quickly, and to just not think about it too much and do what the doctor says. Problem is, some doctors have a limited repertoire of responses mostly focused on what they have trained for and practice. Understandable from their points of view, but not from mine.

Another Day of Not Much Progress

Last night I got notice from my Weather.com app that there is a winter storm warning posted for our area beginning tonight and running through Tuesday late. Thirty mile per hour winds accompanied by up to 3" of snow means treacherous travel. So, I had to reschedule my appointment with the Doctor in Pueblo to review the results of my bone scan/x-ray. Another week of waiting since he won't talk via phone. I think something needs to be done about this process; it's certainly not patient friendly.

I made another call to my primary providers here asking for a meeting with them to discuss my condition and medical case. I'm wanting some help and coordination from them to make sure I am getting good and appropriate medical referrals and care. I need another intelligent and sympathetic brain or two to help me work my way through all of the information and choices before me. I once again got the assistant's voice mail.

It is beginning to appear that the patient is isolated from doctors by a screen of administrative assistants, processes and voice mails. Why is this?

I've been supplied with more information about PC, diet, types of treatments, resources, help lines and other information by my daughter than I have by the three physicians and their assistants I have so far seen.

My next step is to work with the PCRI and local support groups for more information and resources.

This afternoon, 17:30 hrs.
After leaving three detailed messages since Thursday afternoon, I got a call from the physician's assistant. She evidently had not listened to them, or was not given their content because she asked questions and made assumptions to me that she would not have had she done background work before she called, i.e., not understanding that I had found my own endocrinologists and made my own referral appointment, saving myself about two months. She showed no real concern for me and my health issues, although she has been directly involved in them from their discovery and through some of the testing and referral processes.

I asked for a meeting with her and the doctor whose supervision she works under but she did not "see the point" in me talking with both of them. I asked her to set up a meeting or appointment with the Doctor then. She agreed and said she would call with that information.

I also did some elementary research on the Urologist who initially did the biopsy and diagnosis. I found that he is a graduate of a "uniform services" institution, which has less than satisfactory national ratings, has been in practice less than ten years and, from what I can tell, works out of at least four offices. He refused to discuss the results of my bone scan, done last Thursday at his request - results available to him on Friday - even to the small degree of "good" or "not-good", insisting that I make an appointment to see him personally and drive an hour into town.

I know from a form sent to me by an Radiologist office that a patient may elect to have detailed discussions via the phone, or even have a doctor leave detailed messages on the patient's answering system. There was no hint or discussion of this with the urologist.

I have decided to fire him, and find another who has more experience, a better doctor-patient attitude and shows some medical empathy. I discussed this with my local physician's assistant (see above). I also told her I was willing to travel within the state to get a good one. I do not know if she will research this and offer help or resources for this or not.

Focus, and Wonderful Resources

When you find out that you have prostate cancer, pretty soon, most of the petty crap that has taken up too much of your time anyway, falls away, and the mind becomes wonderfully focused on the more important parts of life.

For PC, as I have learned from my internet resources to call it, there are two main issues: the treatment, and the aftermath.

Treatment, at least for me, involves three approaches. One: surgery. Two: radiation. Three: nothing.

Aftermath involves, except for number three, unpleasant effects like sexual disfunction, bladder control and probably other unmanly things.

I've also learned that in my risk group, the odds of not surviving the first ten years after diagnosis are 1%. Or, put better, 99% in favor of still being alive.

So, before I choose and undergo a treatment with unpleasant after effects, I'll be sure that I need that treatment.

I am coming to understand that my main focus is on my quality of life. It's not just a matter of survival. None of us is going to survive life; that's why it is a journey with a beginning and an end. What matters, I believe, is the kind of life you have. Or as Tolkien wrote:

Frodo: "I wish none of this had happened."
Gandalf: "So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us."


Wonderful Resources

My beautiful and smart daughter happens to be working in a health care field. After I told her about my PC, she quickly volunteered to help me with coordination of my care and to keep me connected to resources that will be very helpful. Right away she got me linked to the Prostate Cancer Institute, a most valuable resource. I will be making personal contact with one of their people on Monday. She stepped right up and is giving me the support and love that I need to get through this.

My lovely wife, partner and friend of over thirty years is right in there with our daughter, giving me the support I need, even when I don't think I need it. I couldn't do this without her.

Our son is also a big support to me. He is strong and supportive and will be here when I need him. He's living far away but that's in distance only. We are close and I feel his love and support across the miles.

Family. Where would I be without mine?

Bone Scans

After a rather extended and clinical discussion with my doc on the first day that I received the news about having prostate cancer, I left with the basic information that my risk is, "moderate-low". There was discussion of Gleason scale numbers, which are skewed to some extent in a manner that makes them rather difficult to understand. I did find out through other references, that the diagnostic procedures, tools and algorithms are all estimates. Some are estimates based on estimates. Oh, good.

The doc, as almost an afterthought, scheduled a bone scan x-ray at St. Mary Corwin hospital in Pueblo. I did this last week. It's a relatively painless procedure. The tech/nurse was an artist with an IV. I actually did not know that the needle was in until I looked. "Working on the painless needle stick," he said. Well, I think he's got it down.

I laid out on a long table that fit within a moving apparatus shaped like a high-tech donut. Had to remove all the metal objects from my pockets, and the belt, but kept my boots and clothes on. Took thirty minutes for the scan, and I fell asleep a couple of times. Then, Barb and I had a Chinese food lunch and drove home.

Next day, the Urologist office called to schedule a follow up appointment. Well, I said, I'd rather have a phone consult since I have to drive two hours and spend gas money to sit in his office and hear the same thing he can tell me over the phone. Sorry, they can't do that. I had her talk directly to the doc, but no, he won't do that, so I have to go back in on Tuesday. They wanted to schedule the follow up out about three weeks, but I want the news sooner than later.

Since this is the time in our lives when we are routinely using phones, text messages, email and the internet for almost everything, I would like to understand the reason why office visits are necessary. Is is a liability thing? Are the lawyers and insurance companies at it again?

Getting the News and Fighting the Red Tape

April Fools Day, 2013. Of course. That's also the day I got my official "you've been laid off" phone call from IBM. I was on the train going to jury duty in Sacramento at the time. This year I was in the doctor's office in Pueblo, Colorado when he said something like, "you have cancer cells in your prostate". This was after going to him because my PSA level had increased. That was the only symptom, so I wan't really expecting bad news.

But, like Monty Python said, "no one expects the Spanish Inquisition."

I've not freaked out, but somehow I've attained a calm and kind of rational perspective on all of this. I mean, I'm seventy years old, for Christ's sake and you have to expect some problems with the body when you get into 'advanced years'. As I thought when the doc told me, the old Rabbi said, "It could always be worse." True.

I think the most disappointing part of this, at least to date, is the muddled manner in which my local health care providers are handling it. I have had to take charge of setting up my own referral appointments to specialists. The local folks don't seem to be organized sufficiently to be both effective and pro-active.

Case in point: I also need to see an endocrinologist about my over active thyroid. My local doc took me of my thyroid medication last year - bad for the liver - but failed to follow up with referrals or other medications. Now, the thyroid is worse. OK. I'm seeing his assistant now, who is much more direct and proactive. She set up the referral. But, after a couple of weeks, I had no action, so I called in to check. Well, it seems the order for the referral didn't make it into the 'system'. Could have happened, could have been an excuse for someone dropping the ball. I'll never know. So, they were to get on it and call me back with the info. A few days later, nothing. I called again. The assistant told me she was researching doctors and would send a referral to one.

I waited a couple of days, then, having not received a call from the endocrinology office, or my local providers, called in again. My local people had faxed the information a few days previously. I got the name of the endocrinologist office to which they had made the referral and called them. No, they hadn't received the faxed materials. I made more calls and got this sent again. OK, they could schedule me in three months. Not good enough, I told them. I have to get the thyroid dealt with before I can proceed with cancer treatments. Too bad, they said. We're booked up.

I turned to the internet and located an office in Denver. The doctors are all board certified and had good experience and recommendations. I call them and suddenly I began getting help. I explained my situation. The admin person got me an appointment, not in July, but in early June with the expectation that, once my medical materials were reviewed, they could likely get me in earlier than that. I shifted back into my project manager mode and made sure the Denver office received my medical information from both my local providers and the urologist office that same day. A few days later, the Denver office called and scheduled an appointment only two weeks out.

If there is a moral to this story it is to take charge of your own health care. No one is more interested in seeing that the right things happen in the right sequence and as quickly as required than you are.