I hope this page will be a hope and encouragement to someone out there who is fighting cancer. I hate cancer, especially the variety that killed my best friend and the two kinds I currently have.
Now if you're squeamish or easily offended by straight talk about treatments, you should perhaps go to a site where they use nice middle-class euphemisms. Not to criticize other sites, but I'm mostly a blue-collar guy and sort of use plain language.
Back in the early 80s, I got a small red patch on my back. It was oddly shaped, like a "valentine" as my daughter called it. It kept spreading and at least two (maybe three) doctors tried treating it. It was a case of, "It's ringworm. Here, try this Lotramin. Tried it before? Well, their Lotramin isn't as good as my Lotramin!"
Finally, my wife got tired of this, about the time I got some bumps and scabby patches on my back and chest. The pink patches grow larger and sort of collapse in the middle, becoming rough and, well, scabby. With no referral or anything, I went to see Dr. B.
I said, "I have this spot on my chest and it seems to be growing!" He said, "You have cancer!"
OK, so his "bedside manner" wasn't too great. I've heard of a lot worse. He said, "Now I have to do some work today. I wasn't planning on it. Here, up on the table!" He also said, "If you're going to get cancer, this is the kind to get. We can treat it successfully." (Hold that thought!)
He took out his Polaroid (remember those, kids?) and took a picture of my back and another of my front. He selected the worst three or four, said, "OK, stick and sting!" Choink! A shot of lidocaine or xylocaine or whatever, then buzzzzz (smoke, smell of burning flesh) scrape, scrape, buzzzzz and so on, and then Band-Aids.
Then he looked over the big patch on my back that was no longer a "valentine" but sort of ugly, shaped like a snake, nearly a foot long, and prescribed an ointment of 5-fluorouracil or "5FU". My sweet, caring wife wouldn't touch the stuff but spread it on me with the back of a plastic spoon every day for six weeks. The stuff kills cells that are multiplying, so the cancer gets hit worst. People often use it for skin cancers on their faces so it's not exotic and works fairly well over large areas.
Biopsies of the spots came back basal cell and squamous cell carcinomas (the latter being referred to politely as "Bowen's Disease"). So I had the most popular cancer among white males (skin cancer), which is actually two different diseases. Too bad they don't kill each other.
That big ugly patch started healing after we stopped the 5FU. Unfortunately, the nerves regenerated or woke up or whatever, and it hurt like crazy. Dr. B. finally gave me a plastic patch (kind of like cheap storm windows) with stickum on one side, the kind they use for burns. Blessed relief! After another week or so, we used "grease" and gauze and I was fine. Pretty miserable for a while, though. (After all, it was like a big burned area. Which it was, sort of. My family doctor called it "badly ulcerated". That was the idea. Sort of like the Grand Canyon on a smaller scale.)
Now these spots cost $75.00 each to treat. He had me come back about every 3 months or so, which is when I think he had car payments or something (kidding!). That was quite a bit for the 1980s, but after hearing "cancer" I cheerfully paid it. This went on up until the early 90s, when the price was higher but we had visits down to every 4-6 months and nearly 30 cancers had been removed. The last one or two visits each year were covered by insurance since my deductible had been used up by then; otherwise it was write him a rather large check every three months.
Maybe you're wondering about "freezing" them off. Well, you don't do that with cancer. Maybe pre-cancerous lesions, keratoses and that sort of thing, but not cancer. You have to go deeper or it will go into the muscle and bone and then you have real trouble! Yes, he "froze" off a bunch of spots, and any that returned generally had to be biopsied and scraped off to a depth of maybe an eighth of an inch.
So in the course of events, we moved 2800 miles away and I found another dermatologist. This one was a lady, Dr. J., and I've decided I prefer lady doctors. She was very gentle but matter-of-fact. At first there was nothing suspicious, so for the first couple of visits she just froze some things. Then I got a spot on my leg. Up until now, it was just take off the shirt but now it was remove everything. (Women do this in front of male doctors all the time; my turn to get used to it!) She inspected my chest, back, arms, legs, neck, head, my bottom, you get the idea.
Then she went to work on this spot, a "huge" one over an inch in diameter. She was all "I'm sorry, this might hurt a bit!" with that dinky little needle, had a fan to blow away the smell. Later she did one on my arm, put me in an easy chair, had a pillow to rest my arm on, you get the idea. Treatment just as effective but not so hard to take with a woman's touch. Much nicer than "Stick and sting!" choink!
Then one day, a cancer reappeared along the side of a scar. (By this time, my back looked like a refugee from Star Wars where I was running from the laser beams and they got me multiple times. Either that or like my wife was inflicting cigarette burns.) Oh, dear! She sent me to a plastic surgeon. This gal was going to cure me if it killed me!
Now so far, I'm a healthy guy. At this point I had never been inside a hospital except to visit. They stuck this needle in the back of my hand, readied an IV drip, wheeled me on a gurney to the operating room where he worked on me for maybe 20-30 minutes. He took out a "boat patch" and carefully drew the edges together, did a great job. They wheeled me back and got me into a chair. After some time, they asked if I could stand up. "Sure!" But I almost fell on the floor. The anaesthetic left me with no sense of balance at all until it completely wore off. They took me out in a wheelchair and I remember grabbing onto the car door to flop into the passenger's seat instead of onto the pavement. Glad that's over with!
Oops! It wasn't over with! Biopsy report came back, some cancer cells on the "north" side of the incision so to speak. Back to his office, where, because I did so well during the previous surgery, he did about the same procedure with just a local anaesthetic. Found out later that his charges for "cosmetic" surgery were about 10 times (no exaggeration!) what he charged for us poor schmucks with cancer. A Mexican fellow was in there, had a big burn scar from childhood. Surgeon was not only going to do what he could cosmetically, but there was a cancer way down in there somewhere. He made the big bucks from the high-falootin' dames with facelifts and had some mercy on us poor folks. Lots of mercy, bless him! Don't recall his name but I thought he was great.
My best friend of 50 years (since second grade) was diagnosed with colon cancer. He was on chemotherapy for several years. His boss, a fine Christian fellow we both knew from high school, paid him full salary while he came in and worked whenever he was able. Finally, the economy went South really bad (just after 2000 when the dot-com bubble burst and all that) and my friend volunteered to go on disability so someone else could keep their job.
He fought the good fight, surviving for several years. But his brother and I both went in for sigmoidoscopies right away; it frightened us just a bit you might say. (Hey, it's uncomfortable but not that bad and could save your life!) In addition there's the "Hemoccult" procedure which is nasty (you get the stool samples yourself and take them in) and between the sigmoidoscopy and the Hemoccult you catch 80-90% of all cancers. Now the sigmoidoscope is the instrument that's only 4-5 feet long; the colonoscope is like floor to ceiling but that's another story.
So anyhow, my friend had surgery to cut out a piece of his colon, resulting in a colostomy which was nasty but necessary. A while later they put him all back together but the cancer had spread. He was happy he could "use the bathroom the regular way." Makes one thankful for small things!
They had him on chemotherapy for several years, which undoubtedly kept him alive. One of the drugs was my old friend 5FU. As a biologist friend remarked, "I can think of a dozen metabolic pathways that interferes with!" In particular, uracil is required for cells to multiply, and when they grab the 5FU which "looks" like uracil, it messes up the metabolism and the cell dies. Good stuff, but unfortunately there are always some cancer cells that "escape" and you can't stay on it forever because then wounds would not heal and so on.
Again, in the course of time, we moved 2200 miles, got another dermatologist. This guy was an Air Force doctor for many years. At this writing, he's still seeing me every 4-6 months and scraping off a couple each time. I joke with him that he likes to see me coming so he can make another boat payment. He's good-natured about it.
Shortly after the move, we received word that my friend was dying, less than a week to live. I didn't ask, I told my employer I would be gone for a couple of days, called my cousin to stay at their house a couple of nights, got on the first available flight out of town. That was Thursday. Friday, my friend was alert and we talked about old times, double-dating with our fiancees (to whom we were still married) and stuff like that. Saturday he was doped up with morphine. I flew out Sunday, the day he died. Cancer had spread to his liver, which is usually fatal. Don't know if he heard me, but the last thing I said before I broke down completely was, "See you on the other side!"
Life is kind of funny. Just before that, my favorite cat died. I got two (2) sympathy cards if you can believe it. When my best friend died, nothing. Not a word, not a line. Very odd. I still miss him. We have another cat, but you can't replace a friend.
A while later, I noticed a bit of blood. "Probably hemorrhoids," I thought, because I have had some trouble that way from time to time. But just to make sure, I had the whole nine yards. (OK, nine feet!) They gave me half a dose of Demarol and I was out like a light in ten seconds. At the end, the nurse kept saying, "Wake up and take a deep breath!" I would inhale and zonk out immediately. Had them worried. (Just what they need, a 911 call from their office!) Doctor who did the colonoscopy said, "See you in twenty years!". I was awake enough to remember that. Had I been alert I might have said, "Can you guarantee that?" It would not have been a good bet.
My employer had a "blood draw" about twice a year. I always ordered the PSA test since it was cheap (like 20 bucks more). Well, PSA (Prostate-Specific Antigen) was creeping up from time to time, finally got up from 4 to 6 in one year. Took the report to my doctor. He said, "Well, it's probably nothing but I'm sending you to a urologist." That was in May.
Urologist is another lady doctor, another Dr. J. (Different name, same initial.) Got in to see her in July. She had a PSA done and it was up to 7. This is un-good! So she scheduled me for a biopsy a week or so later. Now keep in mind that a high PSA in itself means cancer in only about 1/3 of the cases. But if it rises more that about 10% a year it's a red flag. Guys need an annual PSA reading for a baseline. Many doctors don't do it because of the expense and annoyance of the biopsy, to say nothing of the worry (panic?) on the part of the patient. But as I exhibit no symptoms, it probably saved my life. (Technicality: High PSA is not a symptom; it's a "sign". See Wikipedia.)
So here I was, on the table with my bare bottom hanging out in front of 3 women who were shoving ultrasound equipment up my nether regions. Ultrasound showed no abnormalities, spots, shadows, nothing at all. They poked 14 holes in me (on the inside where it doesn't show), including 2 local anaesthetics and 12 biopsies, this in the prostate, an organ the size of a small lemon. I won't say it hurt, but it was sure annoying. I passed blood out all orifices for a while, which is normal. Also worth the bother as it turned out.
The next week, I knew it was bad news when the receptionist called me and said, "Dr. J. needs to see you at 11:00 Wednesday." When they tell you when you're coming in, it can't be good. (Like the day the dean's secretary called me and said, "You have an appointment with Dr. K. at 3:30 tomorrow." I was, um, "laid off" as they say. "Fired" is such an ugly word! Nothing I did, though; it was finances and my department was disbanded.)
Dr. J. was very gentle about it. (I have heard horror stories about other doctors, which is why I prefer the ladies, especially when it involved bad news or needles.) Three out of the 12 biopsies showed cancer, so it was yet small. The "Gleason score" was 6 ("3+3"), which means it doesn't look very aggressive. This does not mean you can ignore it, just that you have time to select treatment rather than they slap you down on the operating table next day. Actually, doing nothing for six months would probably not change much; doing nothing for five years, the problem might be a lot bigger, involving the pelvis bone and other organs.
So now we have choices. Back in the '50s when I was growing up, the doctor told you what they would do, and they did it. Of course, cancer was a death sentence in those days, and the word "cancer" was not even spoken in front of the children. I had heard the word, didn't know what it meant; on the world map there was this "Tropic of Cancer" line and I wondered if people there got cancer, or you did if you crossed the line, or what. Seriously. Had no idea.
Many doctors and dentists back in the 50s had been trained in the 20s and 30s. The normal approach was to remove anything that was diseased; so, for example, my dad had all his teeth pulled before I was born due to periodontal disease. They removed appendixes, spleens, goiters you name it. Nowadays they may remove something but just as frequently they repair something (knees, intestines, bladders and so on) and even then a lot of it is "arthroscopic" which results in anywhere from 3 to 5 Band-Aids instead of "railroad track" scars. We are so thankful for modern medicine!
So, sitting in Dr. J.'s office, she goes over treatments, even uses the word "cure". This is encouraging. There are possible side effects, but here we are with a grocery list of options, not all from Dr. J., in fact, she never heard of the last two:
Now don't get me wrong, I'm really thankful that there are options, most of which are 98% cures. However, after an evening of my wife and I sitting down with Web browsers (she on the Windows machine, myself on the Linux box), we had this list of possibilities resulting in making some appointments with the guys (!) that actually do the treatments. Also called our son-in-law who practices medicine in Boston. He was helpful but doesn't have a favorite treatment as most of them result in complete eradication of the cancer like 96-98% of the time.
Oh, but people mean well. Many at church praying for me, some sending cards. Some have a favorite herbal cure their uncle's cousin used and he lived to be 90. (Now the thing about magic is that it works 90% of the time. Some of these cancers lay dormant for years and you die of something else, but you credit the herbs and potions for a "cure". And the dead ones don't talk about the failures. Give me double-blind clinical studies any day! Had a friend with a cancer on his spine who tried a "certain brand" of vitamins and supplements for a month, supposed to shrink the cancer. The cancer grew perceptibly! Fortunately it wasn't too late for a real cure by surgery, but herbal remedies often cause people to put off treatment until it really is too late. A single doctor in Italy treating people with bicarbonate is kind of shaky evidence.)
And then there is this HIKU or HIPU treatment whatever that stands for (High Intensity something, sounds like Japanese poetry) with ultrasound that actually works, but only in 50-60% of the cases and not without side effects. Advantage is no incision at all; even with radiation they have to plant markers around the cancer. But you have to go to Mexico or Costa Rica to get this Haiku I mean HIPU treatment which raises red flags all over the place! (Remember Laetrile? They killed a lot of people with it. Again, magic works in a majority of cases. You know, Haiku might actually work sometimes!)
So there I sat, having appointments with a radiation oncologist and a robotic surgeon. (No, he's not a robot; he controls the robot!) It may be psychosomatic, but my bottom was hurting as it did every time I talked about it with anyone. There are thousands of nerves in the area because it controls sexual functions which originate in the brain, which is why men can become aroused just thinking about beautiful women. At this point, it's no joke, dirty or otherwise. It hurts!
And advice from friends:
I told friends that I felt like writing each treatment on a card, taping them all to the wall and throwing a dart blindfolded. At least I was down to two cards....
At this point in time, I was controlling the pain with a half-dose of Tylenol 8-hour arthritis formula, which worked (lucky me!) I found that listening to www.sky.fm or www.klassikradio.de relaxed me and helped me take naps. (Healing requires energy, even if it's just from the biopsy! Naps help.) Lower intestines malfunctioned only slightly, but glad the computer room is next to a bathroom. Played a lot of Linux solitaire games, thought a lot while playing since the games are fairly brainless activities. Decided to update my will. Prepared lessons for fall semester, thinking that colleagues would have to take over for a while at some point. Tried to detail all lessons and even write all the quizzes. Surgery requires recovery and healing, radiation leaves you fatigued for six months to a year (Told ya that healing requires energy!). What to do, what to do?
In some ways, it makes you feel like a V.I.P. when you keep getting phone calls from doctors' offices. Just remember, it costs a lot of money to be a V.I.P. and they can afford to treat you nice. Confirm appointments, come down to sign papers, send faxes just like an executive. Usually costs more money with each call.
Talked to the radiation oncologist, got the scoop from him. I won't put in any numbers here on success rates and side effects because they keep changing, generally for the better. But anyhow, the treatments would total something like $1000.00 each for 42 of them, plus the other miscellaneous stuff. Works out to $2000.00 an hour considering you're in the door and out again in about half an hour each day. Then again, those machines are far from cheap (like $20-30 million) and somebody has to pay for them.
A few days later, went to the med. school and talked with head of urology dept. He gave the straight scoop on the surgery: out of work for a week or two minimum, catheter in place for a week. Some people out 4 - 6 weeks. Did not sound like a really good option either. Looks like only realistic option is radiation. Why?
With surgery, same sort of risks. Cure rate about the same, high 90 percents.