Tuesday, August 11, 2009
Well, I've done it now. I just got off the phone with nurse Amy Lynes at Group Health in Seattle and told her to go ahead and order my first Lupron shot.
My urologist gave me the word on June 25 that I have prostate cancer. It didn't come as a big surprise. After a biopsy in May, he thought he might be on to something, so he ordered a second biopsy. Bingo! Cancer in 2 of the 13 cores. Since then I've seen another urologist and three radiation oncologists, attended a support group meeting, read so many cancer research abstracts that I got to believing I understood them, phoned a lot of other guys to hear about their prostate cancer, talked it over time and again with Jonelle, sent out a plea for advice on a Cancer Society discussion board, and read the enlightening stories on this YANA site.
In other words, I did my best to take some responsibility for choosing my own treatment. I didn't want to just blindly take the advice I was hearing: that I treat the cancer with hormone therapy and external beam radiation (two Lupron shots a month apart, then 40 sessions of radiation, then one more Lupron shot.) But after all my hemming and hawing, that's what I've chosen.
I really didn't want to get the Lupron, with its hot flashes and fatigue and impotence and god knows what-all. And the good doctors admit that it's still inconclusive whether Lupron with beam radiation can help extend the life of a guy with middling-level cancer such as mine. (Everyone's waiting for the analyses of the completed RTOG 94-08 study that's trying to answer that very question.) If I had a Gleason 8 or more, I wouldn't have hesitated on the Lupron. But it's proven that Lupron reduces PSA, kills some cancer cells, makes cancer cells more vulnerable to radiation, and shrinks the prostate -- all good things. It's probably worth a try.
The predictive nomograms seem to think there's about a 50-50 chance that my cancer has breached the wall of the prostate. I decided against surgery because it might not get all the cancer, and because of the difficulty of recovery at age 70 and the chances of incontinence. I decided against brachytherapy (radiation seeds) partly because of its higher rate of urinary problems -- also because external beam radiation can reach farther outside the prostate than the seed radiation.
Up to this point I feel like I've had some control over the whole process. I'm afraid that things will be changing now, with the treatment itself somehow being in charge. I'll be an active patient, but a lot of whatever happens will simply be out of my hands. I'm quite positive about my situation, however -- often apprehensive, but just as often full of curiosity about how it will all go.
Thursday, August 13, 2009
Got my first Lupron shot today -- 7.5 mg injected rather nicely into my left buttock, the fluid flowing cool into the muscle. It's a kind of test run, enough Lupron for a month. If it does all the good and bad things it's supposed to, I'll get a 30 mg shot good for four months, then another 30 mg as a final instalment.
Group Health Cooperative had me sign the usual consent form for the Lupron. Possible side effects: "fatigue, nausea, hot flashes, impotence, loss of interest in sexual activity, increased urinary symptoms, reduced muscle strength, change in weight, depression." The drug tricks the body into stopping its production of testosterone, the stuff that makes a man a man. In Dana Jennings' New York Times articles about his prostate cancer, the piece about Lupron is titled "My Brief Life as a Woman" . Thank God the stuff doesn't change your voice: Jonelle says she first fell in love with my broadcast-style baritone.
My new PSA reading shows 8.4, an increase of 0.6 in the four months since my previous test. My PSA velocity has always been rather slow -- from 3.9 in 2003 to 8.4 today. The Lupron should drop my PSA way down before I start the radiation series in late October.
Saturday, September 19, 2009: I'm living in an odd period of rest and comfort -- sort of the calm before the storm. I've put aside all the heated research and questioning that I carried out in the weeks after my cancer diagnosis. I haven't seen a doctor regarding the cancer in well over a month. I've started the Lupron hormone therapy but the effects so far are as mild as I could hope. And I won't begin my eight weeks of radiation until mid-October.
The pace will really accelerate as of next Tuesday, when I go to urologist Jerome Zink for the placement of gold marker beads in my prostate -- sort of like a biopsy (you know what those are like!) except this time there will only be three or four pokes of the needle, which will leave the markers in place. Then I walk over to the next building for a CT scan to be sure the beads are placed the way the radiation oncologist wants them, as calibration targets for the radiation beam. I'll have a two-week wait to let the bruised prostate heal from the marker placement, then a full planning session and finally the daily sessions on the radiation table.
My radiation oncologist Paul Herstein plans to hit me with 78 to 80 Gy spread out over 40 sessions. In reading about this subject, I'm encouraged to see that Group Health uses an up-to-date system of 4D IG-IMRT (otherwise known as 4D image guided-intensity modulated radiation therapy) that aims the beam very precisely. Of course I'm hoping to avoid the urinary and rectal pain that often comes (at least temporarily) with the radiation.
I've been lucky to this point with the Lupron. Of the dozen documented potential side effects, I'm only experiencing two, and these seem almost universal: hot flashes and impotence. The first hot flash came about a week after the first Lupron shot. My face felt warm, mildly flushed and somewhat prickly, but it was a modest sensation and quickly passed. Now I have these a few times a day, often strong enough that I need to remove a shirt to cool off. But they're still little more than an annoyance. And it looks like regular sex is a thing of the past at least until I get off the Lupron and its effects wear off, sometime in the middle of next year. Of course by then, the radiation will also be toying with my main erogenous zone, so we'll just have to wait and see.
As for the third most common side effect, fatigue, I've experienced none. My friend Bill and I bashed through the steep forest and cliffs behind my house for five hours last Wednesday, searching for a route up toward Deer Creek Plateau, and I banged happily away with my ice axe (dirt axe) just like in the days when I climbed real mountains. (I live in the Cascade mountains about an hour's drive east of Seattle.)
I had my PSA checked September 9, and thanks to the Lupron it had dropped from 8.4 on August 3 down to 5.6. A week later I had my second Lupron shot (this time 30 mg). The drug is also wiping out some of the cancer cells and shrinking the prostate. My body is getting all set for the main event aimed at killing the little bastard that thinks it can mess up my life.
Saturday, October 3, 2009 Having prostate cancer continues to be almost an academic experience, nothing that really affects my life. I have cancer -- the doctors tell me so -- but I don't feel much different even through the first month and a half of Lupron. Hot flashes are annoying when I have to keep removing my long-sleeved shirt to cool off. But that's about it. Impotence is saddening, but there may be better days ahead. Still no fatigue whatsoever.
The worst problem is one I've had for years, getting up 3 or 4 times each night to pee. Even though Dr. Herstein now has me up to 1.2 mg (3 pills) of tamsulosin (Flomax) every night, I still feel my way through the dark, stepping over the dog, 3 times a night to the loo.
Dr. Herstein wasn't happy with the reduction in PSA to 5.6. He'd like it at 2 or less by the time radiation starts October 19. So a couple of weeks ago he added bicalutamide (Casodex) to my hormone therapy (one pill a day; blocks androgen receptors to further reduce effects of testosterone).
I had the gold marker beads implanted September 14, and it went quite easily -- except that a CT scan showed that one of the three markers was a little off from where they wanted it. So . . . . back to the urologist to have a fourth one put in.
I'm reading a few books on diet, nutrition and food recipes for preventing cancer recurrence. I started on these thanks to my gastroenterologist, V. Andrew Samson at the Everett Clinic. I saw him for a colonoscopy and figured that while I was there, I might as well ask if he had any advice for a guy with prostate cancer. He grabbed a piece of note paper and quickly wrote a short numbered list:
1. green tea
2. tofu/soy milk
3. steamed tomatoes
That prompted me to ask if he had any opinion about Dr. Andrew Weil, an American national figure in holistic medicine. Dr. Samson replied, in measured tones, "He is my guru." So I got a copy of Weil's CD "Breathing: The Master Key to Self Healing." Also books recommended by Samson: "Dr. Katz's Guide to Prostate Health" and the "Eat to Beat Prostate Cancer Cookbook" by David Ricketts.
Interesting stuff. I now sit in an easy chair each morning and follow Weil's deep breathing routine -- feels good. This also helps calm me down at night and sleep. Jonelle and I are working on incorporating more foods in my diet that provide cancer-fighting substances -- antioxidants, isoflavones, lycopene. Most often recommended are green tea, soy products (tofu, edamame, tempeh, soy milk), tomatoes, cruciferous veggies (broccoli, cauliflower, brussels sprouts), dark green leafy stuff (spinach, kale, chard), and red juices (grape, cranberry, pomegranate, blueberry, wine). I'm actually finding it all quite interesting, and good eating too. And in order to incorporate some of this new stuff, I'm finding it fairly easy to cut back on things that I usually over-indulge in: cookies, ice cream, booze, coffee, mayo, butter, meat.
Infinite thanks to Jonelle for helping me with this new diet. Supportive to the max!
Thursday, December 31, 2009
Happy New Year! Among the many things I can be happy about is the fact my radiation treatments and hormone therapy have gone well, and side effects have not been bad. I completed my 41 days of radiation December 15, two days after my 71st birthday. The radiation sessions went smoothly. They gave a focus to each day, and they helped me feel that I was really doing something to get rid of this cancer.
Five days a week, I got up at 5:30, went through a long routine of shower, stretching, breathing exercises, feeding the cat and dog, and having a good breakfast, then allowed a couple of hours for the drive in to Seattle with plenty of time for breaks along the way. At Group Health, it was half an hour on the radiation table under the care of Daphne, Carol, Tanya, Erica or Shelly. Then a mocha from the cafeteria for the drive home.
By the time I began radiation on October 19, my PSA had dropped to 2.5 -- not as good as Dr. Herstein would have liked, but still good enough.
Carol and Tanya get me on my back on the treatment table and unceremoniously yank down my scrubs (keeping a towel discreetly over our little friend). The daily routine begins: first a couple of x-rays to image the three gold markers in my prostate so that I'm aligned perfectly with the incoming radiation. Then the radiation itself, given in 67 three-second bursts from a bulbous machine that rotates through seven different positions around my body.
I learn a bit about the gadget that is saving my life. It's an Elekta SL 20 linear accelerator, made by a company based in Sweden. It will deliver about 1.8 Gy of radiation each day for 25 days to my prostate and nearby lymph nodes and tissues. Then it will concentrate on the prostate for the last 16 days, zapping it daily with 2 Gy. Eventual total should be about 79 Gy.
The Swedish designers must have a sense of humor. Staring down at me each day from the Elekta housing is a 9-inch-diameter smiley face -- created by a round access plate with screws and slots artfully positioned. I pass the time by counting the radiation bursts, but I keep dozing off.
Still blessedly few side effects. Mild hot flashes, continued impotence, no fatigue. Dr. Herstein advises me to revert to a low-fiber diet -- white bread, canned fruit, eggs and milk, etc. -- to help avoid diarrhea. Ironic advice, coming just as I was getting to love my healthy new diet of raw fruits and veggies and whole-grain foods.
Daphne and Tanya in costume for Halloween: Daphne as Mother Goose, Tanya in red and black leather. "Do you have a motorcycle?" I ask Tanya. "No, but my husband does." "Do you ride?" "The motorcycle, or my husband?" I visit the adjoining treatment room, where another technician shows me the Varian linear accelerator. "We treat a lot of breast cancer here," she says. "We call this the boob machine. We call yours the butt machine."
"I am very pleased with how it is going," Dr. Herstein tells me. I have a good nap on the treatment table.
Carol's 40th birthday is coming up. "It's all downhill from here," she says. If only she knew...
Mild diarrhea has set in. Not the classic runny kind, but a soft and frequent stool. Not really troublesome. Having a hard time staying awake on the morning drive to Seattle. Today I pulled off three times: two quick naps and two potty breaks. During the days at home, I can't seem to shake a depression and lethargy.
I try to alter the daily requirement that I state my birth date, by offering it in German: "Mein geburtztag ist dreizehn Dezember, neunzehnhundert acht und dreisig." Erica and Tanya still prefer it in English.
I try it in Spanish: "Mi cumpleaņos es trece de diciembre, diez y nueve cientos treinta y ocho." That's OK with Erica.
Tanya, who is Russian, teaches me to say "Pree-vee-et" ("hello"). The treatments are obviously going well.
We start the "boost" stage of the radiation, where it's aimed solely at the prostate. The distribution pattern of the radiation pulses is changed, and the total daily bursts are increased to 70.
My weekly weigh-in shows I'm up to 182 pounds, a gain of 7 pounds in recent weeks. Yes, I'm foraging freely in my low-fiber diet, including ice cream. The diarrhea is still almost negligible. Lethargy/depression comes and goes, but is manageable. I'm developing a pot-belly. So is Erica (but then, she's pregnant).
Jonelle and I have my "exit interview" with Dr. Herstein and nurse Amy Lynes. Smiles and positive vibes all around. I'll get my final Lupron shot January 8. We'll check my PSA the first week in April, and periodically after that to watch for any signs of recurrence.
My last treatment. Mellow as always. I'm handed a graduation certificate, signed by all my angels in radiation oncology. I'll miss them.
It's now the eve of 2010, and I couldn't be more optimistic about the new year. My energy level is down and I've been spending a lot of time in an easy chair, reading and napping. But I expect the tiredness and other side effects to slip away in the coming months. I'm looking forward to the best summer ever.
[In response to a reminder Don said:]
Thank you so much for the reminder to update my writeup. I will definitely do this -- because you are right: we all want to know about the long term success of our treatments. I'm away from home for the next month or so, but will update the report when I return. Thank you again for the wonderful YANA website -- it has been such a help and support for me. And by the way, I seem to be doing OK, feeling good, but with some mild concern about slightly rising PSA.
Hard to believe it has been two and a half years since I completed radiation therapy. All seems well. Periodic PSA tests are the principal means of monitoring success. I have the usual nervousness after each blood draw, as I wait for results of the test. My urologist Dr. Zink says we don't have to start worrying until I have three consecutive increases in PSA, or until I experience a full 2-point increase in PSA from my after-radiation baseline (which I believe is 0.51). Neither of these things has happened.
Here's a history of my PSA readings:
June 2009, at time of cancer diagnosis: 7.8
August 2009: 8.4
September 2009 (after first Lupron shot): 5.6
October 2009 (after second Lupron shot and adding Casodex): 2.5
Mid-October to Mid-December 2009: Radiation treatments
March 2010: 0.21
September 2010, after going off Lupron and Casodex): 0.51
January 2011: 0.50
May 2011: 0.41
November 2011: 0.73 (ouch, of course this increase scared me)
January 2012: 0.67
Next scheduled PSA test: July 2012
So you can see that my PSA readings are not as low as one would hope, but that at least they aren't rising markedly.
As far as other issues arising from the cancer, I consider myself fortunate. I have no bowel or urinary difficulties. My energy levels rise and fall, but on the whole I'm strong and active and continue with the hiking, climbing, land clearing, chainsawing, construction and other physical work I've always done.
I definitely can't perform sexually as well or as often as in earlier years, but that was the case before the radiation treatments, simply due to my age. The death of the prostate of course means an end to semen production, which takes a bit getting used to. Orgasms are still readily achieved, though erections are much more difficult to maintain (but erectile drugs such as viagra continue to be effective).
I got off hormone therapy two years ago and of course hope I never have to return to it. I'm continuing to pay reasonable attention to my diet, though not nearly as much as earlier. I now drink soymilk exclusively and find that a diet high in fruits and vegetables and low in meat is tasty and fairly easy to maintain (tho I fall off the wagon quite often). I switched to green tea for a year but never made peace with it; I'm a coffee drinker once again.
That's where things stand at the moment. I rarely have to think anymore of my experience with cancer. I occasionally recall some incident during my months of dealing with the cancer, and I'll mention it to Jonelle or to a friend. But this is just a look back in history, not a current concern. As far as I can tell, I'm pretty much back to the good state I was in before the cancer, and life goes on.
Hello again. Just a brief updater, since it has been a year since I last checked in here.
All is well, it would appear. Just about any health problem I'm now experiencing can easily be chalked up to my age: less energy than I'm accustomed to; occasional joint discomfort/pain (feet, knees, hands, shoulders), usually associated with arthritis. All in all, I'm a healthy 74-year-old.
The only official connection I now have with my prostate cancer is a periodic PSA test, about every 4 months or so. Here are my readings since my last report:
July 3, 2012: 0.43
Oct. 30, 2012: 0.59
May 6, 2013: 0.53
Here's to better health for all of us.
My most recent PSA test results:
August 2013 0.61
March 2014 0.55
I'm still very fortunate in the outcome of my radiation treatments in 2009. My PSA readings have continued to hover somewhat above or below 0.50 for the past four years. My only apparent side effect from the radiation is lesser sexual performance, but viagra is still helpful. I may have some very minor bowel and fatigue problems from the radiation, though I'm not even sure on that. Otherwise I'm just carrying on fine with no more than the expected joint pains and other such annoyances of any 75-year-old man.
My PSA readings are staying at a consistent level. Here are the readings since my last update:
September 2014 0.51
March 2015 0.60
August 2015 0.57
Six years after my radiation treatments, I think I'm doing well. No bowel or urinary problems. Erection difficulty is worse now, probably from a combination of the radiation and just old age. I've been feeling unusually fatigued lately, but I doubt that it's from the radiation, which was given so long ago.
My best wishes to all YANA readers, hoping that their outcomes will be as successful as mine seems to be.
Hard to believe it has been 7 years ago since my radiation treatments for prostate cancer.
At age 78 I'm in quite good health, and in fact have again taken up the kind of strenuous mountain hiking I did in years past.
My PSA readings remain consistently low, as they have been ever since the treatments. My latest reading in 0.52.
My sexual ability has declined slowly over the years, though has always improved with Viagra. But also since the treatments, I have gotten older (surprise!) and I've also begun taking an antidepressant and an anti-anxiety drug (for conditions unrelated to my cancer treatments), and these factors have cut sharply into sexual activity.
My greetings to all who are dealing with prostate cancer and my wish that your outcome can be at least as good as mine.
Don's e-mail address is: firstname.lastname@example.org