Health Diaries > The Prostate Cancer Blog

September 28, 2008

My Uncle Has Prostate Cancer

Grant sent us this personal story about his uncle's recent diagnosis of prostate cancer.

My family just found out that my uncle has prostate cancer (age 78). That's probably not grandiose news in this blog, but in our family no one goes to the doctor and you just tough it out, and you certainly don't tell other family members about it.

A brief background. My mom and dad are the first in our lineage to come to America (1952), and only ones. All my relatives live in Norway. No major health concerns, though now that my folks and their siblings are all in their 70-80's all kinds of stuff is popping up. My dad had two heart-attacks last year. Only went to the doctor for his second, didn't even know about the first. Thought he had heartburn, though he's never had heartburn. Six months later, number two almost took him down, but to EVERYone's surprise he's doing pretty damn good (still smokes a pack a month and drinks nightly). My mom, 76, just had a hysterectomy cause she was so stressed last year about my dad that she started spotting. After removal they found cancer in the uterine walls, so she's doing 5 weeks of radiation therepy just incase. Found out one uncle had some skin cancer a few years ago. Then this uncle pops up with full blown prostate cancer.

What's weird is, in March, when he was here for my dad's 80th, he looked great, felt great (for all we know), and seemed fine. Now 6 months later, he looks SO OLD, and looks pale and worn out. Norway's not back-water hillbilly when it comes to medicine, but apparently they say he's pretty much beyond treatment. It's progressed into his bones. His blood values are too low to do radiation or chemo.

What I'm trying to find out is, about how much real time does he have left. I received some pics via email from a visit my uncles all had that I'm printing to take to my folks, so I know they'll see his condition (a smile doesn't hide much). When my folks talk to them on the phone, no one says anything about the big, white, elephant in the room. I believe it's better to have eyes open than getting that surprising phone call.

Anyone care to throw out some estimates? I'll temper the news for my mom, but I really think its more fair. In a nutshell: Rapid degradation, moved into the bones, values too low to treat.

p.s. I think I'll start going for an annual soon. I'm 39 and have been dreading the '40' annual, but I'll take a finger over a tumor any day.

February 8, 2007

The Robot Option

I’m 62 and in fairly good physical condition. My father died from prostate cancer, so I have tried to be extra vigilant regarding it. When the biopsy showed I had it, we considered many possible treatments.

I have just gone through the robot-assisted procedure to remove the prostate. The path reports came back today, and all is well—margins are clear, as are the lymph nodes. The path report showed the cancer to have been in both lobes and to have been a Gleason 7.

Today the catheter came out, and I now can resume most activities. I should be fully recovered within three weeks. In case any of you have to make the kind of decisions we've just made, I pass on what we've learned.

1. I’m telling others that when they get their PSA tests to be sure to ask not only what the level is, but also what the rate of increase is. Many urologists, including the one I used to use, are not nearly aggressive enough in ordering biopsies. If the PSA increase is more than 20% year-to-year, they should recheck soon and consider a biopsy. When I moved to Charlotte, NC, I went to see Manish Damani, a wonderful person and urologist. He took one look at the year-to-year PSA comparisons from 5 months previously and immediately ordered a biopsy without rechecking the PSA. My increase had been only to 3.8, but it was from 2.4—much too high a % increase. The biopsy showed a Gleason 6 cancer (but the final path report showed it was actually Gleason 7). My original urologist not only failed to order a biopsy, but never mentioned to me that doing so would be a reasonable course of action. It’s true that even Damani told me I had only about a 15% chance of having cancer when he ordered the biopsy, but 15% is far too high a risk not to take the biopsy. Biopsies are quick and relatively painless. I’d lost 5 months in moving to a cure because the first urologist had failed to tell me what the risks were. For all I know, if I had not seen Damani, I might still be waiting for someone to tell me I have cancer.

2. I went with the robot over the open surgery because the biopsy suggested a Gleason level 6 in two locations concentrated near the center of the prostate. If I had know that my Gleason level was 7, I might have considered the open surgery more strongly. As it turned out, the cancer was not near the margins, so I’m not concerned that the open procedure would have been better in any way.

3. I went with the robot over the seed treatment because I worried about possible recurrence of the cancer or side effects from the radiation 20 years from now. When the prostate is removed and follow-up PSA’s are zero, you don’t have to worry that some of the cancer was missed or that there was any damage to the surrounding tissue that might not show up for a couple of decades.

4. I rejected other possible treatments--HIFU, proton, external-beam radiation by itself, cryo, etc.—because data are too limited regarding long-term effects and/or too negative regarding possible side effects and recurrence.

5. The robotic procedure was nearly painless, during and after the operation. I took a total of 3 Tylenols for pain in the days following the operation.

6. With the robotic procedure, the catheter was in for just over 5 days. Using the catheter is the most uncomfortable consequence of surgery, and I’m delighted it is over this quickly. Hint: schedule surgery for Wednesday or later in the week, so the catheter can come out as early as possible. I went in on a Tuesday and the doctor’s office was not open either Saturday or Sunday to remove the catheter, so I had to wait until Monday. I think it would have come out on Monday had I gone in on Wednesday or maybe even Thursday.

7. With the robotic procedure, I was up and walking before the anesthesia fully wore off. I was walking around the hospital an hour after I came out of recovery. Walking is encouraged to get the bowels moving again and to get the gas out of the system (which is used to distend organs during the operation).

8. I have no stitches to take out. I have two incisions that are just under an inch long and 4 more that are less than a half-inch.

9. Warning: Be careful not to walk too much, the catheter will irritate the end of the penis. I took to walking a mile every hour and a half or two hours, starting the day after the operation. Two days of that and irritation made me slow way down. Daily showers and extra washing around the catheter area takes care of any problems.

10. Now that the catheter is out, I can resume most activities. I see no reason why I could not go to work today—I started writing this within an hour of the removal of the catheter. If it weren’t so cold, I could golf tomorrow. Volleyball is still 3 weeks away, but that is much faster than with open surgery. And there seems to be no loss of strength, as one might expect with radiation. I’ll have to wait a few weeks before retoning the abs, but that is all. I expect a short period with a little bit of incontinence, hopefully very short and very little. I’ve just peed in the toilet for the first time in six days! We’ll have to see how soon sex is possible, but the data show much quicker recovery for that than with the open procedure.

11. Warning: Take baggy gym shorts, pajamas, and/or sweat pants with you to the hospital (and hotel if staying out of town). Your regular pants and underpants won’t fit well over the catheter and bag, and they can irritate the penis by rubbing too tightly. Dress as you might to play basketball, and you get the waistband up high enough to avoid the incisions and the penis will rub only slightly against soft and silky material.

12. Don’t worry about the return of normal bowel movements. I was a little concerned about first getting a bowel movement and then getting a normal one. The first came on schedule after the 2nd half of the bottle of magnesium citrate; the latter came the day after I started the stool softener. Hint: take some Vaseline or hemorrhoid cream with you—once those movements start up, you’ll be happy you have it.

13. I was happy I got tape from the hospital and had scissors with me. I had to tape the larger catheter bag to my leg each night and remove it each morning. I left one layer of tape for the 5 days, with the tube for the bag taped above it in the evenings and then cut off in the mornings. I left the cut tape wrapped around the tube so it didn’t get sticky. I found it impractical to use only one bag.

14. Don’t worry about removal of the catheter. The staff had to take x-rays and the doctor to approval removal, but the actual removal is done by a nurse in just a couple of minutes--and it is nearly painless.

15. MOST IMPORTANT: CHOOSE THE BEST SURGEON YOU CAN REASONABLY GET TO. If you can get to Nashville, TN, I strongly recommend Ram Dasari. I chose Dasari because (a) virtually all he does is robotic prostate operations, (b) he had done more than 850 before me, (c) he works with virtually the same team every day, (d) I was getting him—not a student of his—for the whole operation, and (e) he had trained Damani in robotics and was recommended by him (Damani has done over 100 robotic operations at the time of this writing, but that is still early in the learning curve—and he really prefers the open operation). Dasari had been at Henry Ford, the top teaching hospital for the robotic prostate operation, for a year-long fellowship four years ago. I didn’t go to a teaching hospital because I didn’t want to take the chance of getting someone similar to the Dasari of four years earlier for at least some of the operation. Why take that chance when I could get someone at Dasari’s current stage of development for the whole operation? All the statistics show that there is a tremendous learning curve with this operation: those with more experience get better margins and quicker recoveries of both continence and potency. Dasari has an excellent team. For example, I had no sore throat from the anesthesia even though delivering it is very complex: the operation lasts nearly 4 hours, you are hanging upside down, and the anesthesiologist has to both keep you under and help you breathe (lungs don’t expand and contract well in that position.) The nurses knew all the precautions to take and could answer any questions I had. To get Dasari, I had to wait over 2 months and then spend 9 days in an extended-stay hotel in Nashville—but I think it was well worth it. I think the world of Damani as both a person and a surgeon, but he is not really a robotic specialist. He has over 100 robotic operations under his belt and never a positive margin. Things almost certainly would have gone nearly as well with him, and I could have stayed at home and had the operation nearly a month earlier. But this operation is a matter of life and death, continence and incontinence, potency and impotency. Both doctors said I could afford the wait—and I could afford the time and expense of coming to Nashville. If continence or potency come back just a little earlier, if the operation was slightly more pain-free or the anesthesiologist a little more experienced with the operation, if the odds on getting no positive margins were ever-so-slightly better, the extra time and expense were well spent.

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