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.