Monthly Archives: November 2017

Prostate Cancer – Brachytherapy – part 10

It is Sunday, five days after my brachytherapy procedure. I am now going to focus on what the patient should expect rather than on the doctors and medical establishment. The short version is that my body received a major intrusion and it’s not all sweetness and light afterward. But it is bearable. However, doctors continue to screw up. See Part 11 for more of that.

The first day or two were actually pretty easy. My perineum was tender, bruised, and swollen, but I could still sit comfortably with care. It had had sixteen large puncture wounds, so that’s not surprising. I had taken the generic Flomax on days 1 and 2 so I could manage to urinate reasonably well, although you should expect to have a small stream. The prostate is swollen. The penis also hurts, right at the tip. I don’t know if this is from the trauma of the catheter or perhaps even another instrument used in the urethra during the procedure. It still hurts now, five days later, although much less. I sat around in my recliner a lot and didn’t do much. I was able to sit on my office chair at the computer, too, but didn’t have a lot of energy. I think I only had to get up once each night.

Day three, Friday, things got worse. The penile pain was greater after having lessened over the preceding two days. I had felt some odd lightheadedness a couple of times in the preceding days which I suspected was due to the Flomax, so I decided to see if I could go without it. I did not have the lightheadedness, but my stream became much smaller, leading to more frequent urination and long bouts in the bathroom. That night I had to get up twice, and 1:00 AM and 4:00 AM and I was not able to get back to sleep after the second time. So when I finally dragged myself out of bed Saturday around 5:30 I was wiped out and I really wanted to be able to pee better, so I immediately took a Flomax. After another 10 minutes in the bathroom I got up to get dressed and have breakfast. Immediately I felt a wave of nausea and dizziness. I won’t go into detail, but the next miserable half hour was spent in the bathroom. I managed to keep the Flomax down, but it was nip and tuck. It was my fault for disregarding the instructions for the Flomax. You are supposed to take it on a full stomach – 30 – 120 minutes after a full meal. It’s powerful stuff and known side effects include nausea and dizziness. It’s important to take it with food so that it enters the bloodstream slowly. I never fully recovered yesterday. Thank heaven for college football. I could veg out in my recliner and watch something, even though I’m not much of a fan. I managed to eat and kept it down, but there was no way I could drive a car, for example. I was able to pee a lot better, though. The Flomax does work in that way.

Today I’m better. I ate a big breakfast and waited an hour before taking the Flomax. My urination is nearly painless and near normal. I took a short walk today. There is some discomfort in the perineal area from walking. I’m not as tender as I was, but I still have to sit carefully. I have yet to drive my car since the procedure. It’s boring sitting around so much and not being able to exercise, either at the gym or running. I am not feeling well enough to do anything creative like working on my latest novel. I left off writing that a week ago. I pulled out a big jigsaw puzzle so I would have something to keep my mind off my body. I am in recovery mode, there is no doubt.

Edit: It is now 17 days after the procedure. The radiation is less than a third of what it was at the beginning, but the cumulative effects on my innards have taken their toll. My ability to urinate has begun to approach normalcy finally, but only as of yesterday. It is still somewhat painful, but in a different way than before; if feels like excessive pressure inside – in the prostate area – until I’m finished. I still use Flomax. More troubling have been my bowel habits. If I don’t want to visit the bathroom every hour I have to take Imodium. There was one night the first week, around day five, that I slept through the night. Since that time I have had to get up to pee two or three times every night. Last night there was a stretch of almost five hours of continuous sleep. That’s the longest since that one night I slept through. I have been able to go out for walks and to the gym over the last week. I’ve taken it easy and stayed near a bathroom, but it is possible to exercise moderately without much discomfort. In fact, it has invigorated me and let me feel almost normal. I’ve had no trouble doing ordinary household chores like washing dishes, mowing the lawn (with an electric push mower), and taking the garbage cans out to the curb, but I have avoided any heavy lifting or jarring activity. I’ve been able to concentrate more and I actually worked on my novel over the last two days. About a week after the surgery my private parts turned a spectacular purple, which later turned to black. I also had a similar bruise on my arm where the IV was. Those places are now faded and should soon be back to normal. My cat has not tried to sit on my lap, despite the cold weather. My wife has gotten that privilege – the cat on her lap, I mean, not my wife on mine.

Edit: 27 days after the brachytherapy – I went running for the first time since the surgery. I had several problems, but the prostate was not among them, nor was the Achilles. The weather was really cold this morning, which is not surprising since it’s mid-December. I’m way out of shape. Not only have I been quite sedentary for the last month, I was pretty sedentary for the two months before that due to my Achilles tear. I was cold and sucking wind after only a slow one-mile jog. Then I realized I had to get to a bathroom. I barely made it back to the parking lot rest room in time. My frequent BMs continue to be a problem of sorts although other than frequency, they are normal. I am not taking any other drugs than the Flomax. I slept through the night last night for the first time since the first week after the brachy. My urination is close to normal most of the time, at least it was as of yesterday. Now that the weather is colder, the cat is sitting on my lap. The radiation is about 13% of the original strength now. With the Cesium-131 seeds I am supposed to be safe around pregnant women and everyone else after one month. With other isotopes, it’s longer due to their longer half-life.

Continued on Part 11.

Prostate Cancer – What Doctors Do Wrong, part 9

Today’s the day. It’s 5:30 AM and I’ve had my shower and put on clean underwear as instructed by the emmi video.. Yesterday I got calls from the hospital, a very competent-sounding nurse who answered almost all my questions and one from the anesthesiologist. Both asked me a nearly identical set of questions such as what previous surgeries have I had, do I have any drug allergies, and so forth. The nurse’s list was somewhat longer. One question she asked that surprised me was whether I had been taking my Flomax. I told her no and asked if I was supposed to. She seemed surprised I hadn’t had any instructions on that and said “It’s too late now, but you can still have the surgery.” So I guess I was supposed to start using that back when the pharmacy filled it. I just double checked the instructions I received from the scheduler and there is no mention of that prescription.

I’m not allowed to have anything to eat or drink, so I’ll just sit around and watch the morning news until my son arrives. To be continued ….  I hope.

Okay, I survived. Except for the waiting and answering a zillion questions (mostly the same ones repeated), it wasn’t any worse than the biopsy. It ended up being 57 seeds, not 33. I never got an explanation as to why that number. The recovery room nurse said it was pretty standard. She gave the normal range as 30 – 60, but the product website said average was around 80. One nurse told me 17 were in the interior region, the rest on the the perimeter. Maybe when they decided not to do the EBRT they increased the number of seeds. Dr. K said he would insert the protective gel to prevent rectal damage from the radiation and I had to initial another release in the operating room. This gel shield, called a SpaceOAR, is really just a spacer. It doesn’t block the X-rays; it simply makes use of the Inverse-square Law to reduce radiation to the rectum by increasing the distance. Dr. A used the same line as after the biopsy, telling me right before the surgery that he would call my son in a half hour or so and “give him the good news.” That seems to be his shtick whether or not he is expecting good news. I won’t go into all the grisly details but the bottom line, no pun intended, is that they won’t release you until you can pass at least 100cc of urine. It took me a while, but I made it there and was sent home with my son. The nurse freaked out a bit when she used ultrasound to measure how full my bladder was, and it was almost at 500cc. She threatened to call Dr. A come and catheterize me, which seemed to be all the motivation I needed.

I can walk around without significant discomfort, although I have to plop down carefully. The biggest surprise in my post-op instructions was that I am not to have my cat or other pet on my lap for 30 days. I don’t glow in the dark, but I am somewhat radioactive. Also no pregnant women or young children within six feet for that duration. I am not to ride a bicycle or do other activities that cause vibration for that same period, so running is out. I am supposed to avoid orange juice, tomato juice, and spicy foods because they can cause bleeding. So I guess that’s it for now. I do not have that “severe pain” the scheduler mentioned, nor was any pain medication prescribed. The post-op instructions just say to avoid Ibuprofen, which I would do anyway since I’m allergic. They didn’t even say no aspirin, but I’ll stick with acetaminophen for now. I’ll update the blog when something happens worth reporting, but that may be a few weeks away.

Astrophysics for People in a Hurry by Neil deGrasse Tyson

Astrophysics for People in a HurryAstrophysics for People in a Hurry by Neil deGrasse Tyson
My rating: 3 of 5 stars

This very short, very accessible book on astrophysics, or, more accurately, astronomy with a bit of physics thrown in, is written in Tyson’s easy-going style. It is dumbed down to the point where even I can understand it. There’s relatively little scientific jargon, although one cannot escape basic terminology. The author seems to be trying to accomplish a few specific things: give readers confidence in the scientific method (and scientific establishment), an appreciation for how insignificant we humans are in the universe, and an understanding of the value of basic scientific research. Most readers will be accepting of these viewpoints and those who are unaccepting, such as some fundamentalists, probably won’t read this book. As one might expect in such a short book covering such a vast topic, it skims over a lot of complicated things and skips from topic to topic without any obvious pattern. I learned a few new factoids that I will never put to use outside a crossword puzzle, perhaps, but it’s a quick, pleasant enough read.

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Prostate Cancer – What Doctors Do Wrong, part 8

As I get close to the day of the procedure, I encounter more surprises. I received a call from my local pharmacy that my prescription was ready. I didn’t know what that was. No one had told me that I would be getting a prescription prior to the surgery. It turned out to be generic Flomax. I suppose this is good to have on hand for after the surgery, but as I mentioned earlier, I wasn’t having any urinary symptoms and hadn’t been given any instructions on this.

Then I got an email from the hospital with a link to a website. It requested me to go to this site to view their “emmi” program. This turned out to be a series of four audio/video clips. They provide a long numeric password for my privacy. I’m not sure what they were trying to protect since the videos provided nothing but the most basic information. There was nothing in them identifying me or specific to my procedure. One of them was about “my hospital stay”. It took ten minutes to say that my medical team cared about me, washed their hands, and that I should ask if I have any questions. Another one was on how to prepare my skin for the surgery. It made two important points: 1) wash your skin thoroughly before the procedure, especially the area of the body where the surgery will take place; 2) but do NOT do this for the genital area. Hello – the area of my surgery is the genital area. Do I wash it or not? The narrator for all of them is a woman who sounds exactly like she’s reading a story book to four-year-olds. It’s very demeaning. They even assure the viewer that it is very easy to use a computer to watch the videos, which the viewer can only hear if they have already begun watching the videos on the computer. The unit on anesthesia begins by telling me what surgery is. Do I really need that? Again the emphasis is all about how much everyone cares about me, yada yada. Then it lists 11 risks of anesthesia alone and point out this does not include all the risks of anesthesia, and none of the risks of the surgery part itself. It’s pretty scary, actually. I don’t know why they want the patient to view this unless the lawyers want them to force it onto the patients for liability reasons. The last one was about Advance Directives. My wife and I just had our estate plan updated and have new Advance Directives, and the hospital and our family doctor have copies, so this video is totally unnecessary for me. If they’d bothered to check or personalize it they would have known this, but obviously they didn’t. Altogether these pointless videos take almost an hour. I found them patronizing almost to the point of being insulting, although for some very young or very poorly educated patients I can see how they might be appropriate. Watching them all was harmless enough, I suppose, but irritating and I came away feeling that I was just a checkbox item they had to check according to their lawyers. They seemed worried about their skin, not mine.

A few days before the scheduled surgery I got a call from Dr. K. He began by introducing himself and saying he worked with Dr. N whom I had met. Dr. K didn’t even remember that he had examined me and measured my prostate, much less his promise that he would coordinate with Dr. A (which I already knew he had not done). The good news is that he and Dr. A had been talking and had decided that the EBRT was unnecessary. He described it as overkill. So he would be ordering seeds for the brachytherapy at a stronger level. If the brachytherapy is to be followed by EBRT, they have to reduce the initial dose from the brachytherapy to avoid an overdose of radiation. I was glad to hear this, of course, since the whole thing is over much sooner, and because there are a few side effects from the EBRT that are not present, or not as often present or in the same strength, as with brachytherapy alone. I don’t want to expose my body to any more radiation than is necessary. The reduction was also reassuring in that it signified that my biopsy results were not as serious as previously thought and that there was no evidence cancer cells had escaped the prostate to the surrounding tissue. It was very disturbing, however, to find that my treating doctor had no memory of me. What else didn’t he know? Did he see the note about the bad Cipro reaction that I had called in to his office?

See the next post in this series here:

The Fiddler on Pantico Run by Joe Mozingo

The Fiddler on Pantico Run: An African Warrior, His White Descendants, A Search for FamilyThe Fiddler on Pantico Run: An African Warrior, His White Descendants, A Search for Family by Joe Mozingo
My rating: 4 of 5 stars

This non-fiction account of the white author’s search for the African roots of his family name is partly a piece of journalistic research and partly a personal memoir. It never fully succeeds at being either, but it does contain a number of interesting historical and personal insights. He traces his genealogical roots to the area around colonial Jamestown, Virginia. There all the Mozingos appear to have originated from Edward Mozingo, an African slave brought there in 1644 and who won his freedom in a court case in 1672. Edward married a white woman and his children and their issue eventually spawned both black and white family trees.

Now, over three hundred years later, most white Mozingos think their name derived from Italian or Basque forbears. Some joined the KKK while others learned of their African roots and embraced them. The author interviewed dozens of Mozingos or relatives of the original white owner of Edward as well as academics and historians. The Mozingos he interviewed ranged from middle class whites and blacks to what some uncharitable folks might term white trash – poor, relatively uneducated, and bigoted, although also often welcoming and open, at least until the topic of their name possibly being African arose. After traveling the U.S. researching his name, the author flew to Africa to try to trace Edward’s origins further. He found Mozingo to be a common name in Cameroon and Angola. He was welcomed in both countries.

The book was fascinating for me because I recently learned that despite being very white (blond, blue eyes) I, too, have an African ancestor. Reliable family and census records establish that my paternal great great grandfather married a woman who was the granddaughter of an Alexander Fuller in North Carolina who was described in a store account of 1763-1765 as a mulatto carpenter. Like Edward, my ancestor was free, practicing a trade, running store credit and owning land. He, too, married a white woman and all his grandchildren were listed in later census records as white. Unlike Mozingo, I was never able to identify the likely black African man who first reached American soil. I know it was a man, though, because various DNA relatives of mine named Fuller carry an African haplotype (a genetic marker than can come from only one parent) on their Y chromosome. In researching my own history I learned that intermarriage was quite common back then and not frowned on or made illegal as later when racism set in hard. Many African slaves were freed after a period of indentured servitude, just as the poor Irish and English were. The author gives an eye-opening account of life in those times.

One area where he falls short, though, is that he never really establishes his direct connection to Edward. He had his DNA tested and he did not have the African haplotype on his Y chromosome that would mark him as a direct descendant along the male line. He speculates that he descended from one of Edward’s unmarried daughters who kept the Mozingo name. In fact, he speculates about a lot of things. The book is filled with his many accounts of things based on little more than his imagination “I could envision so-and-so sitting here…” “Perhaps this is where such and such might have happened” “I felt like ….” The author’s travels in Africa bear the same problems. He goes to various villages and talks to many experts, but never really establishes where Edward came from. He does paint an extraordinary picture of slavery in Africa that preceded the European and American slave trade and continued long afterward. I certainly cannot defend the horrific slavery era in the U.S., but compared to what those same slaves might have experienced in Africa, they might actually have been better off. Slave trade in Africa continued into the 1950s and might even still be occurring there today.

Another failing is in the DNA arena. He does not have the African haplotype, but there are plenty of other African genes. He never reveals whether his DNA test showed him to have any African ancestry at all. Mine did, which helped me to trace where it came from despite it being less than 1% of my DNA. Because there was one female in my line, I do not have that haplotype either, but do have a third or fourth cousin who is 70% sub-Saharan African and at least two white DNA relatives who carry that haplotype. I get the feeling the author was padding his book with speculation in part as filler and in part as wishful thinking of himself as a sort of white Roots story. He spends a lot of verbiage describing local countryside, his hotel accommodations, and the booze he is obviously quite fond of. It would be a better book without this. Even so, you can gain a very good insight into the colonial era African-American experience on both sides of the Atlantic from this book.

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Prostate Cancer – What Doctors Do Wrong, part 7

Dr. A’s scheduler, a nurse, called me the next day. She began by telling me the date I was scheduled for the procedure. So much for asking me what dates I might not be able to do it. This is the third time I was forced into what was convenient for doctors or their assistants. Fortunately the date was fine with me. I asked her about the timetable afterward, when would I have the external beam radiation therapy (EBRT)? How soon would I be able to resume normal activity after the implant procedure? Would I need care, such as someone to bring me medicines or a bedpan or whatever? She seemed totally unprepared for these questions but said she would find out these things from Dr. K’s office. She read me a set of instructions. I was to report at 6:30 AM for an 8:30 surgery. Really – two full hours? Since I would not be able to drive, that meant my son would have to get up before 6:00 to pick me up and take me, then come back many hours later. I knew better than to ask how long the surgery would take. I’ve had a few minor procedures and learned that they never know and will never tell you. The surprise for me was that it wouldn’t take place at my local hospital, Instead it would be at an affiliated hospital 10 miles south – that’s right, the one closer to where Dr. N usually practices. Go figure. She said she’d send me a message with all the instructions. She did send this the same day.

She warned me against taking aspirin or other blood thinners before the surgery, then mentioned I would be given a drug (I didn’t recognize the name) for “severe pain.” Wait! I’m going to have severe pain? Then she asked me what allergies I had. All of this I had provided to PAMF multiple times, but I repeated them and told her to add Cipro to the list. She did. Then she said she noticed I was allergic to Codeine and Vicodin. I confirmed that. Then she said oh, well then they’ll have to give you Ibuprofen. I told her I was allergic to that, too. She said that wasn’t in my allergy list they had on record. This ticked me off since it is always the first thing I list when doctors ask me. She then corrected herself and said yes, it was in there after all. She just hadn’t noticed it. This did not give me confidence she was competent since she had neither looked at my allergy list before deciding what drug I’d be taking, nor when she did look at it, noticed the most important drug I can’t have. It’s the only one that gives me life threatening reactions. She quizzed me quite some time on what my reactions were when I took those drugs as though she didn’t believe me. After I described my symptoms she became convinced I couldn’t have them. Then she asked me what doctors gave me for severe pain. I told her I didn’t normally have severe pain. I had severe pain when I had inflammatory arthritis and took heavy doses of ibuprofen at that time, but I can’t take that since I developed an allergy to it. When I had plantar fasciitis the doctor gave me a cortisone shot, which worked well, but that’s not something for general surgical pain. I had a very painful wrenched back and the doctor prescribed Naproxen, which I could tolerate, but it didn’t really help with the pain so I stopped taking it. After she heard this she acted frustrated and said she didn’t know what they could give me, then. Great – so I’m going to have severe pain and there’s no drug they can give me to relieve it. Comforting.

She called me back a few days later but said she couldn’t get the answers to those questions about the post surgery timetable. She said I needed to talk to my doctor about that. Great. I’d tried to get a timetable from Dr. N, Dr. K, and Dr. A. and got referred to this nurse for all scheduling questions and now she couldn’t answer them, although Dr. N had gone over this in very general terms. I needed to know specifically what days or weeks I would need to be in town for the EBRT. Dr. A had given me a fancy pamphlet printed up by Intuitive Surgical, the maker of the Da Vinci robotic surgery system used for the prostatectomy, giving all this kind of stuff in detail, along with a DVD worthy of Cecil B. De Mille. Brachytherapy is a rather common procedure that Dr. A performs. Why can’t they have a simple pamphlet or one-page flyer at least that provides this basic information? I’d gotten one for the biopsy. How about a standard email they can forward? You can find sites that give you a general idea about your physical condition and limitations for the first month or so, but they won’t tell you when the EBRT is likely to be. Besides, a patient should be able to get this kind of thing from his doctor, not the Internet.  Once again, another promise broken.

The instructions said I needed to have some tests, including a blood test and an EKG and they had to be done at that medical group, PAMF. They gave me a phone number to call and schedule these. I called and got a woman who was friendly and competent! Finally! She asked me when I would like to come in. I told her. She said that was fine. I about fell over dead from shock. Someone actually asked me what I wanted and agreed to it. I went there that day and they saw me promptly. The tests were done quickly and the phlebotomist was totally painless. They always like me. I have good protruding veins for them. I’m glad I finally have something good to say about PAMF.

See part 8.

Prostate Cancer – What Doctors Do Wrong, part 6

Immediately after my visit to Dr. N I called back to Dr. A’s office to arrange another appointment. I wanted to talk it over with him face to face and ask about the brachytherapy option. I had as much skepticism about the natural bias of Dr. N as I did about the natural bias of Dr. A. I wanted to give him a chance to convince me that prostatectomy was the better choice. When I called for an appointment I was told the earliest one was a month away. I told the appointment woman that I just wanted to ask a couple of questions and then inform Dr. A of my decision. I pointed out that I had originally had an appointment scheduled for that same day. She would not budge, so I went ahead and scheduled the appointment. I didn’t want to wait for a month to get the decision made so I chose to contact Dr. A using the online messaging function. PAMF has such a function, although it’s very clunky to use. I wish they just had email, but be that as it may I sent him a message telling him that I had seen Dr. N and  I was leaning toward brachytherapy but wanted his opinion on whether that was really a mistake.

That evening I got a reply saying he thought brachytherapy would be an excellent choice in my case. He said he did not know Dr. N, usually worked with Dr. K, and “wished me well.” Wished me well? What did that mean? Was he firing me as his patient? Dr. N had said he worked “with” urologists, but what did that mean? Was a urologist in the operating theater or just consulting and doing follow-up? I messaged Dr. A back and thanked him for his prompt reply and said I was canceling the appointment for a month away. I spent the next two or three days researching brachytherapy online and decided to go ahead with that option. Following Dr. N’s direction I called to his office to inform them that I wanted to go ahead. The woman there was puzzled and asked why I was calling there instead of the urologist. She told me (which Dr. N hadn’t) that the urologist schedules the surgery, not the oncologist. I explained about my messages to and from Dr. A. She said she’d talk to Dr. N about it and someone would get back to me.

I messaged Dr. A again after that and said I had decided to get the brachytherapy and should I go through his office or Dr. N’s to get the process started. His only response was “Again, I don’t know Dr. N.” So I guess I was fired as his patient. I needed a urologist and didn’t have one. Later that day Dr. N called me and said he was glad I had decided to go forward with the procedure. I told him about the puzzling exchange with Dr. A and he seemed surprised. He knew Dr. M had referred me to him , not Dr. A, but apparently he had never contacted Dr. A and had never realized that Dr. A did not know of my consultation with him. He said he understood now why that was, because Dr. A usually works with his partner, Dr. K. He told me that Dr. K would actually be doing the procedure because he works with Dr. A who is my urologist. He assured me he would coordinate everything with Dr. K and Dr. A and that I shouldn’t have to worry about that. He scheduled me to have my prostate measured so the seeds could be manufactured to order. So for the second time I had chosen a doctor and been forced to the care of another doctor. The notion of patient choice is a fiction in our medical system.

A few days later I saw Dr. K and had my prostate measured by ultrasound, a simple, painless procedure. The first question I asked him was whether he had coordinated with Dr. A. He assured me he had but he seemed confused as to why and how I came to his office. I explained to him just as I had to Dr. N that I had been referred by Dr. M, had been given both names (K and N) and did not know it made any difference, but had chosen Dr. N because I recognized his name as the treating doctor for my friend. He said that made perfect sense and now that he understood, he would let Dr. A know. I had thought Dr. N would have already done that, but at least now felt it was all straightened out. I pressed Dr. K for a schedule but he said he couldn’t tell me when it would be because the seeds are made to order and he couldn’t be sure when they would be ready. He said someone would be in touch with me once they knew. He asked me if I had any scheduling issues and I told him the main thing was that I wanted it all to be over, including the EBRT, for my daughter’s wedding, which was several months away. He assured me that it would all be over long before that. I left glad that things were finally under way.

Weeks went by without a call. I kept getting invitations for holiday events and couldn’t RSVP. I also wanted it all to be over in 2017 since I had satisfied my insurance deductible. Finally I decided to call to Dr. A’s office to press them on what was happening. The woman at the desk seemed to appreciate my dilemma and said she’d talk to Dr. A about it. I got a call from him that evening. He was totally surprised that I was still his patient and he didn’t know who my oncologist was. I told him about the assurances I had received from both Dr. N and Dr. K that they had coordinated with him. He said he had talked to Dr. K before Dr. K had seen me and neither one of them knew why I was being scheduled with Dr. K. No one had told him I was going forward with the procedure and he thought I was under the care of Dr. N, a stranger to him. He confirmed what the receptionist at Dr. N’s office had said, which is that the urologist is the one who schedules things and that now that he knows he is expected to be treating me, he will schedule it. Apparently not one of these three doctors was concerned enough about the patient to take responsibility for seeing his patient got needed treatment. Promises to me they would coordinate were broken. I don’t know which of the doctors is most to blame, but I blame all three. When they see a patient who has told them he wants to go ahead with a potentially life-saving procedure, he or she should follow up to make sure it happens. If I hadn’t pursued this I would still be waiting by the phone for the call Dr. K promised. Dr. A assured me he would have his scheduler call me the next day and I would finally get a timetable. I told him I had some dates that might conflict, like my daughter’s wedding, but he said to tell it to the scheduler. I did get a call from her the next day, but that didn’t exactly go well, either. Read part 7 to learn why.

Prostate Cancer – What Doctors Do Wrong, part 5

I searched Dr. N’s name in both Bing and Google and had trouble finding him. There was another doctor back east with the same last name. I did get a few hits to newspaper articles about the new center at our local hospital for radiation oncology and his name was in the articles, but it did not give a phone number. Somewhere on page 2 of the search results I found a rating site for doctors that mentioned his name and had an office number, but I was surprised that he didn’t have a website in his own name or with his partner, Dr. K. I called the number, which was in a different area code indicating it was near the hospital to our south, although when I finally got the name of the medical practice and found its listing, I saw that it had two locations, one near me and one 10 miles south. I told the receptionist that I was a new patient referred by my family physician and wanted to set up an appointment with Dr. N for a second opinion on my prostate cancer. She gathered the usual information. I told her I preferred to meet at the office near me if that was possible. She said if I wanted that location I would have to see Dr. K, not Dr. N. She repeatedly asked me if I wanted to meet at the northern office or did I want Dr. N.  I said I wanted Dr. N and I didn’t mind driving to the other location. She set up the appointment. I should have seen this as a problem in the making, but I didn’t.

The next day I got a call from that same office and the woman said she saw that I was closer to the other office so I would be seen there and that I would get a call from the assistant there to schedule that. This was puzzling and exasperating since I was fine with driving south and now had to change my schedule, and also because if Dr. N saw people in the nearer office, then why was I given such a hard time when I requested it. As it happened, the appointment time was the same time (in two days) that I had a follow-up appointment with Dr. A to give him my decision about what I would do. I called to cancel that appointment saying I was getting a consultation on radiation therapy. I saw Dr. N in the local office. His manner was excellent. He had my records, forwarded by my family physician. He told me right off that he had examined the biopsy results and recommended brachytherapy, that’s the implantation of radioactive “seeds” to kill the cancer in the prostate, followed by external beam radiation therapy (EBRT) to kill any cells in the surrounding tissue. He gave me details of the biopsy Dr. A did not, including the fact that my cancer had been found in three of four quadrants. Dr. A had simply said my cancer was spread throughout my prostate, which sounds more ominous to me. I had only two needles with grade 4 cells, but I don’t know if they were both in the same quadrant. I may only have the 4’s in one quadrant, at most in two.

He gave me a lot of statistics about life expectancies and side effects, basically saying that brachytherapy patients have better outcomes than prostatectomy patients. I quizzed him about bias, i.e. surgeons like to cut, radiators like to radiate, how do I know who’s right? He admitted that there could be inherent bias towards one’s own practice field, but he encouraged me to look up the statistics for myself and to go back to Dr. A and ask about brachytherapy. He answered all my questions completely, including the details of the procedure, such as the fact they make the entry between the scrotum and rectum, not rectally like the biopsy. I thought he meant the incision; it was not until the day of my surgery I learned they do it all with needles. The isotope used is Cesium 131, with a half-life of 9.7 days, which is a newer isotope for this purpose. The elements mostly used before, and still used today, are palladium and iridium, with longer half lives. In a month the Cesium would be 88% depleted (decayed), thus the radiation doesn’t last very long. The Cesium is stronger, but of shorter duration killing the cancer faster and minimizing the length of side effects, which include urinary urgency. They shield the surrounding tissues. There would be about 33 seeds and they stay in indefinitely. I got more information than that, but I’m not going to try to give a detailed medical explanation. Go to a doctor’s website or cancer society site for that. Procedures vary a great deal from patient to patient. There is also an option for some patients for fast-acting brachytherapy, where an even stronger dose is given and then removed, but this as not offered to me.

Perhaps the most important question for me was whether to treat the cancer at all. Dr. N was very helpful in this regard. He agreed with Dr. M that statistically those who do not treat early stage prostate cancer have about the same longevity statistics as those who do treat them, although those who don’t get treated have a higher rate of symptoms that must be treated soon such as difficulty urinating, and they definitely have a higher rate of death from prostate cancer. He pointed out that there are a lot of differences between patients. Many prostate cancer patients are in their 80’s or 90’s when the cancer is discovered, or even if younger, have other health problems like high blood pressure, obesity, heart problems and so forth. These people are more likely to die from something else in the next few years anyway so treating the cancer doesn’t increase their longevity very much in most cases. So their experience skews the statistics. I’m relatively young and very healthy. My father lived to be 94; his mother 93, his grandfather 91. My other grandmother lived to 88. I am NOT likely to die of something else any time soon, so removing the one major health risk factor, prostate cancer, is likely to have significant benefit for me. Absorbing this information I also had to weigh two other significant family history events. My father-in-law died of prostate cancer at just about my age. That was a big motivator in my decision to treat it. On the other hand, my grandfather had a prostate problem – enlarged prostate, not cancer, or so I was told – and went in for a “routine” prostate operation. He died from it. He had a post-surgical pulmonary embolism that clogged his lung and prevented his blood from being oxygenated. I had pointed these out to Dr. A and he had correctly said, “There’s a risk in treating it and there’s a risk in not treating it.” In the end, my grandfather’s experience did not weigh too heavily on me, since that was in 1951 in a rural Wyoming hospital where they did not have the technology of today such as better anti-coagulates, transurethral microwave thermotherapy (TUMT), and robotic surgery. More importantly, the brachytherapy is less invasive than the prostatectomy, with much less bleeding. They keep you overnight after a prostatectomy, but send you home the same day after the brachytherapy.

Dr. N minimized the side effects of brachytherapy, and especially of the EBRT. He kept comparing it with prostatectomy, not with choosing no treatment. See this article for a clinical discussion. I think he was doing the same thing Dr. A was doing in this regard, trying to steer me toward his area of practice. Both seemed to think saying these risks are low or are rare is sufficient for the patient, but I think it’s rather patronizing. Rare things happen, like my reaction to the Cipro and my grandfather dying from his prostate surgery. Still, Dr. M’s earlier statement that his other patients who have had either procedure seemed to do well in the long term gave me considerable assurance the treatment was the right choice.

I left Dr. N’s office leaning toward brachytherapy but I wanted to consult with Dr. A again to be sure I was getting the full story. Dr. N said when I was ready to “call us and let us know what you decide.” That’s when the Keystone Cops scenario started. See my next post.

Sourdough by Robin Sloan

SourdoughSourdough by Robin Sloan
My rating: 3 of 5 stars

Sourdough lacks the charm of Sloan’s first book, Mr. Penumbra’s 24-Hour Bookstore but displays much of the same imagination and cleverness of style. The plot centers around Lois Clary, a robotic arm programmer in San Francisco who discovers the joy of sourdough bread. Soon she receives her own sourdough starter and begins to bake for her coworkers. This becomes a passion and finally a calling.

Tension builds throughout as things progress in unexpected ways, but I found the author’s resolution clumsy and unsatisfying. It can be called intriguing and unoffensive, which is not to be read as damned by faint praise, nor is it to be considered high praise. It was a quick, mildly entertaining read.

View all my reviews

Prostate Cancer – What Doctors Do Wrong, part 4

The information Dr. A gave me about prostate cancer was sparse. It was also somewhat misleading. He said I had a score of seven on the biopsy, which he said was high. Not so fast. The score is based on the Gleason grading system. That system rates every cancerous cell detected on a 1 to 5 scale, 5 being the most active (dangerous) cancer. The first two, 1 and 2, are rarely found in biopsies. Dr. N (who will be introduced soon) told me that 1 and 2 look so much like healthy prostate cells, that pathologists usually can’t distinguish them. So the lowest biopsy score for an individual cancerous cell is really a 3. Dr. A did not tell me that. Furthermore, the Gleason system adds two scores, the predominant cell type and the non-predominant cell type. Thus the lowest possible score on a positive biopsy is 3+3 or 6. Not only that, a 7 can be a 3+4 or a 4+3, i.e. do the bad 4 cells predominate or the less bad 3 cells? It can’t be a 2+5 because a 2 can’t be detected. There is a significant difference between a 3+4, which is what I had, and a 4+3. A 3+4 is thus the second lowest possible Gleason score on a positive test.

For a good layman’s explanation, see this page from the American Cancer Society. Dr. Zachary Zumsteg of Cedars-Sinai, among others, has tried to divide Gleason 7 patients into subgroups labeled favorable and unfavorable. He defines favorable as a 3+4 or less with a positive result in no more than 50% of the needles. I had 5 of 12 positive so I fit this category. I had cells in grade 4 in only two of the five. He defines unfavorable as 4+3 or two intermediate NCCN risk factors (e.g. PSA test over 10) or 1 risk factor plus a positive test on more than 50% of the needles. There appears to be a group fitting between these two that presumably is of intermediate risk. Zumsteg says the unfavorable group has a seven times higher risk of recurring prostate cancer diagnosis than those with a 3+3 Gleason score and twice those in the favorable group. I would have liked to have had a clearer picture from Dr. A about these finer points. In retrospect I tend to believe that he intended to make the result seem more foreboding than it really is in order to steer me toward the treatment he favored, prostatectomy.

After my receipt of the biopsy results, I consulted Dr. M, my family doctor. I wanted his opinion on what I should do about the cancer and I also wanted a cortisone shot for my right heel. When he saw that I had just had Cipro, he warned me about the risk to my Achilles from Cipro and he refused to give me the shot because it would increase my risk even more. I would have had all 7 risk factors for tendon rupture. Once I realized the right heel pain was probably due to the Cipro, I decided to gut it out, although it hurt like a SOB. It faded after a few more days. Dr. M was visibly upset about my biopsy results. His comment was something to the effect that that’s what a family doctor gets for ordering a PSA test; a perfectly healthy patient has to lose his prostate. He said that if he hadn’t ordered the test, I wouldn’t have known I had those cells and I wouldn’t have gotten treated. He said the statistics are that I would live just as long being treated or not. When I told him Dr. A had recommended prostatectomy his exact words were: “He’s a urologist. He makes his living removing prostates.” He also said Dr. A would disagree with just about everything he said. Now I am not suggesting Dr. A recommended the prostatectomy in order to make money doing unnecessary surgery, nor, I am sure, was Dr. M. It may be a cliche, but it’s also true that surgeons like to cut. They went into that field because they believe in its efficacy and because they have confidence in their ability. I have no doubt Dr. A thought that was the best option for me. But he is biased toward his own practice. Even so, after Dr. M studied the results he informed me of the fact I had a 3+4 and that two of the needles had the Grade 4 cells. It became clear from his manner that he felt my results were more troubling than some others he’d seen. I know of a friend who had External Beam Radiation Therapy EBRT when his PSA was below 1 and his biopsy showed only level 3 in one needle, so a 3+4 is not all that minor. I asked him what most patients of his do when presented with a positive prostate biopsy. He said about 70% have the prostatectomy and 30% have radiation. He said they all seem to do fine and reassured me that I would too. He also said that if were him, he doesn’t know what he would do. He recommended I explore all options. I told him I wanted to talk to someone about the radiation option. I knew someone who had had radiation for his prostate and he had minimal side effects and seemed to be living a normal life. Dr. M gave me two names of local specialists who do prostate radiation oncology, Dr. K and Dr. N. I recognized Dr. N’s name as the physician who had treated my friend. I decided to go to him for a second opinion.

Before I leave this visit, I should mention that the statistics Dr. M gave me on those who do not get treated were overly optimistic based on the numbers I’ve seen from the National Comprehensive Cancer Network (NCCN), and other reliable sources, but not by much. The vast majority of patients like me lead a normal lifestyle and lifespan whether or not they get treated, but those getting treated do better statistically. I discuss this more in a later post.

In part 5 I’ll tell you about my visit with Dr. N.

Prostate Cancer – What Doctors Do Wrong, part 3

If you haven’t already, read parts 1 and 2 before reading this part

The day after the biopsy I felt pretty normal. I had passed one large blood clot from the surgical wound site, but other than that there was no blood in my urine or elsewhere. The only pain I had was from my torn left Achilles. The next day, however, I woke up with a sharp pain in my right heel centered on the back of the heel and extending down to the “tip,” i.e. the point where it goes from vertical to horizontal and becomes part of the sole. I thought it might be plantar fasciitis or Achilles tendinitis, both of which I’ve had before. This mystified me since I had been doing nothing strenuous due to the previous injury on my other ankle and the biopsy. This pain grew worse and worse over the next few days. By the time for my return to Dr. A for the results I really, really could hardly walk. It was excruciating. I would avoid going to the bathroom as long as possible so I would not have to walk the ten steps there. I used the guest bathroom rather than walk the extra twenty step to the master bath.

Even so, I drove myself to PAMF for the appointment. It took me forever to walk from the parking lot to the building now that I had pain in both feet/legs. I’d always been impatient waiting for those geriatric geezers who took a century to make it across the crosswalk to the front door, blocking my entering car. Now I was one. I’ll be more patient in the future. Of course Dr. A’s office had to be the absolute farthest one away from the elevators.

Dr. A saw me promptly and told me right off that I had prostate cancer. He said I had a 7 on a scale of 10. That stunned me. I not only had not expected a positive result, but 7 out of 10 sounded scary. He began to describe my options. He listed them in this order: watchful waiting, active surveillance, brachytherapy, external beam radiation, and prostatectomy. The first two are, as they sound, undertaking no active treatment, but keeping an eye on the progress of the cancer. Most prostate cancers are slow-growing. Dr. A said this was not recommended for a level 7 biopsy result. Brachytherapy is where a radiation oncologist implants radioactive seeds in the prostate to kill the cancer cells. External beam radiation is where the prostate is X-rayed from outside the body over a period of days or weeks. He offered to put me in touch with a doctor who did those radiation procedures. The prostatectomy is where the surgeon removes the entire prostate. Dr. A. would do the procedure using the Da Vinci robot system. Five small incisions (holes) are made around the pelvic region and small instruments are inserted allowing the surgeon to cut the prostate loose, separate the blood supply and nerves, then remove the entire prostate and sew together the bladder and urethra. I asked what he recommended and he said the prostatectomy. I asked nothing else and he told me little else. When it was over I mentioned to him how I had this severe pain on my right heel, the uninjured one, and asked if it could have anything to do with the prostate situation, as unlikely as it seemed to me. He said no. I said I was going to call Dr. M to get a cortisone shot, which had helped the last time and asked if that would be okay. His response was, “I would.” This turned out to be a big error on his part. I left with a flyer, a video on disc, and a knot in my gut.

Even though I had no appointment, Dr. M saw me that afternoon. He took a great deal of time, too, going over my biopsy results with me, much more than Dr. A, and much better information. I’ll tell you more about that in my next post, but let’s stick with the heel pain for now. When I asked Dr. M for the cortisone shot, he checked my medications for the biopsy and saw that I had taken Cipro. He told me that Achilles tendinitis is a known side effect of Cipro, especially in older men, and that it increases the likelihood of a tendon rupture. Not only that, but a cortisone shot would increase that risk even more. He refused to give it to me. He prescribed a topical NSAID.

You might think that it is excusable that a urologist wouldn’t know about Achilles  tendon ruptures, but you would be wrong. Any doctor who prescribes Cipro should be aware of its side effects, but a urologist especially. It probably should never have been prescribed at all in my case. Why? I have since learned that there are seven risk factors for Achilles tendon rupture or acute inflammation. They are:

  1. Male
  2. Over 65 years of age
  3. Active athletically
  4. History of tendon ruptures
  5. Blood type O
  6. Cipro
  7. Cortisone shot

I have the first five by dint of my genes and Father Time and Dr. A had just given me number 6 and recommended number 7. My existing tendon rupture in my left leg may have confused the question a bit, but I had made clear to Dr. A that it was the new, unexplained pain in my right heel that came on after the biopsy that was motivating me to ask for a cortisone shot. That was the acute pain. It should have been obvious to him it was caused by the Cipro. He knew of the first four risk factors in my case and could have asked about my blood type. Since urologists deal with older men constantly, they should at least be aware of the risk of Cipro and if not choosing another antibiotic, at least warn patients of that risk, especially when the patient makes the doctor aware of the tendon pain. The pain in my right heel went away after about another week, fading steadily as the Cipro worked its way out of my system. My left tendon is still injured and still hurts almost two months after the tear. I still can’t run. That one wasn’t caused by the Cipro, but it may have been exacerbated by it. The use of Cipro at all was probably a mistake and the recommendation to get the cortisone was certainly a major one.

I’m also unhappy about the information I got, or failed to get, from Dr. A that day about my cancer and my options. More about that in my next post.

Prostate Cancer – What Doctors Do Wrong, part 2

I saw Dr. A promptly. He was courteous and had a warm manner. He noticed my limping and I told him I’d torn my Achilles while running. He expressed sympathy. He examined my prostate digitally and said it was not enlarged and had no lumps. He did an ultrasound and said he didn’t see anything troubling. He said the fact I had no urinary problems was a good sign. Still, he said he couldn’t tell if I had cancer without a biopsy. I agreed to have one. It was set up for the next week. This surprised me since I’d been told it would take a month to see Dr. X. Why is it Dr. A has openings a week away?

He prescribed an antibiotic called Ciprofloxacin (“Cipro”) to be taken one day before and the day of the biopsy. He said the biopsy would take only ten minutes and was an office procedure done with local anaesthesia. I also would have to use an enema the morning of the biopsy. He handed me a flyer about the biopsy procedure. I had also been prescribed a Valium to take before the surgery to relax me. The flyer said that was optional and that if I didn’t take it, I would be able to drive myself home. It sounded pretty mundane.

The day of the biopsy my Achilles was still bad, although better than before. I did the prep but did not take the Valium since I did not want to bother my wife with having to drive me. She doesn’t like to drive in the afternoon. I’ve never been particularly anxious about medical stuff. I limped in and was seen immediately by Dr. A. The biopsy was not nearly as mundane as I had thought. I got the anaesthetic shot and then a topical one in gel form was rubbed on the area of the rectum adjoining the prostate. So far, not bad. Then the doctor sticks an instrument in there and begins taking samples. I could not see it from my vantage point but it sounded and felt like a staple gun, the kind carpenters use with the heavy duty staples. There’s a loud snap and an impact accompanied by a pain. Then another, for a total of 12 times. I had expected it to be painless. It wasn’t. I guess I couldn’t call it a sharp pain, but it was pretty close to that. It definitely felt like I was being seriously traumatized. I’ve had dental crowns and root canals and this was worse. The device shoots a needle into the prostate to take a sliver of cells. It pierces tissue and causes lots of bleeding. The doctor has to take samples over all the regions of the prostate. By number 12 I was ready to get the hell out of there. It was over quickly, although not as quick as I would have liked. I had assumed it would be only two or three samples.

When it was over Dr. A told me to come back in a week “to get the good news.” I drove myself home and took that Valium. I did not want to move. I spent the rest of the day crashed in my recliner. The Valium knocked me out and I was glad of it. A prostate biopsy is not something you can do on your lunch hour and then return to work, believe me.

Maybe Dr. A says the same thing to all his patients. No point in making them worried sick over what may turn out to be a negative test, right? Maybe. But in my case, it was a disservice. That statement, combined with his previous statements that my prostate was not enlarged and he saw nothing on the ultrasound, along with my general lack of symptoms and overall good health, led me to believe there was little chance of a positive test. Because of this I did not research prostate cancer and educate myself about the test readings and treatment options (or non-treatment) in the case of a positive result. I was not prepared to ask good questions when I came back for the results. I now know that about 30% of prostate biopsies are positive, so it is not all that certain mine would be negative. Perhaps Dr. A’s Pollyanna manner was a mistake, or maybe not, but he did make one mistake that I’ve described here. Read part 3 to understand what it is.

Prostate Cancer – What Doctors Do Wrong, part 1

I’m a 70-year-old man with prostate cancer. I will be undergoing a procedure called brachytherapy in a few weeks. I am writing this post, and future ones (edit: 9 so far), to document my experience, partly in the hope that it will educate patients, but especially in the hope it will help doctors do a better job dealing with patients. If you’re a doctor who thinks M.D. stands for “Me, deity,” think again. You screw up a lot. I should say at the outset, that I have no reason to believe that any of the doctors listed here are lacking in professional skill or do not have my interests at heart, as they see them. My complaints are primarily with the poor communication and seeming paternalistic attitude and just plain bad organization on the part of doctors, hospitals, and their medical groups and personnel.

For me it began with a routine annual physical. I’m remarkably healthy for a man my age – on the low/desirable range for weight, blood pressure, and cholesterol. I take no medicines – prescription or non-prescription. I’m a runner and lead an active lifestyle. I passed everything in my physical with flying colors except for the blood test. I had a high PSA score, 4.9. PSA is Prostate Specific Antigen, something produced by all prostates, but especially by cancerous cells. 4.0 is considered the top of the normal range (although I’ve seen it listed as up to 5.5 for someone in my age group), so I was only a little over that. My family doctor, Dr. M, asked me if I wanted to see a urologist, I asked him if I should and he said yes. He was concerned not just with the high reading, but also with its “velocity.” That is, I’d had a low reading of only 0.9 on my PSA in 2011. A change that great in only six years was considered significant to him. I hadn’t been with Dr. M very long (because my previous long-time family doctor left his practice), but I trusted him. He is a caring, up-to-date doctor and is an example of what doctors do right.

I’m no doctor, but I’m well-educated (law degree and lots of science in college as a math major). I was well aware that there is a controversy about PSA tests. Statistics have shown that a PSA reading alone may not be a good indication that treatment of any kind is needed. Men who do not get treated have the same longevity statistics as those who do. I had no symptoms other than the PSA reading. I suggested that maybe I should wait a couple of months and test again. He said that was too long and I should see a urologist promptly. He did not recommend a specific urologist, so I looked up local urologists online. Fortunately, I have good insurance and live in an area with a good selection of top doctors. I examined the education and experience of a number of them and chose Dr. X at Palo Alto Medical Foundation (PAMF), a preferred provider in my PPO insurance plan. The earliest appointment I could get was five weeks away. This was perhaps the first sign of trouble, the inability of the patient to see a specialist promptly.

Two days before my appointment, I tore my left Achilles tendon while running. (This sounds irrelevant, but it’s not as you will see). The morning of my appointment I got a call from PAMF telling me that Dr. X had been called in to do emergency surgery so I would be seeing Dr. A. This was irritating. On paper, Dr. A seems to be just as qualified as Dr. X both in terms of training and experience. I was not concerned about Dr. A, but I asked if I could just see Dr. X in a day or two since I had researched him and felt comfortable with my choice. The voice on the phone said no, I’d have to start over with a new appointment, which would be at least another month away. Of course, the same thing could happen the next time, and Dr. M had recommended I see a urologist promptly, so I agreed to see Dr. A.

I arrived at the clinic and limped in. My torn Achilles was really killing me. I almost needed crutches. When I checked in, the receptionist at the urology desk acted confused because I had not been referred by a PAMF family doctor. Dr. M was in a different medical group. She acted like I would have to do that, but finally just handed me all the usual forms – medical history, insurance, etc. When I gave them back she said she checked and I didn’t have insurance. This was wrong since I had just seen a specialist there (ENT for minor tinnitus) earlier that year and there had been no problem with the insurance. I showed her my insurance card again and she asked for my $20 co-pay. I handed her my credit card and she said their computer was not working so I’d have to pay cash. Really? What kind of a place was I going to? They shuffle me off from the doctor I’d chosen to another one and then can’t find my insurance and can’t even take a credit card.

So far none of this has been a major mistake, but it is very unsettling to see how patients have little choice about anything. The medical establishment, including doctors, insurance companies, and even receptionists, determine what is to happen to you. This story is continued in Part 2.


Punctuation is important

My wife heard yet another ignoramus radio announcer today make yet another ambiguous and confusing statement:

“Saipov said President Trump should get the death penalty.”

Now is that supposed to be:

“Saipov,” said President Trump, “should get the death penalty.”?

I’m OK with it either way, actually.