From Diagnosis to Treatment to Recovery

This is my attempt to chronicle my experience, from the beginning, for the benefit of any new guys that show up here feeling lost and alone, and need to hear from others. I am far from the most knowledgeable guy here, in fact I'm probably not in the top 20%. But I've been through it and know what its like. I've gotten a ton out of this forum, and hope I can give it all back in turn. For those of you who know my story, this is the version that doesn't include lunatic rants - at least for now - the first 5 posts ;-).

My history
In 2006, or 2007, don't exactly remember, my PSA was .7, I was about 58 years old, so that was great. I had it checked every year, and it started to rise, to 1.1, 1.7, and finally 2.2, at which point my urologist recommended a biopsy. He noted in my history that my dad had PC. I am a high strung, glass half empty guy, and I immediately went into panic mode. My uro was very competent, and a good caring guy. But he was a one man office, very unusual these days, and I decided if I was going to do an invasive thing like biopsy, I was going to get it done at a major teaching hospital known for is Urology Department. So I went to Columbia Presbyterian, Dr Ben Spencer. He concurred that a biopsy was called for. He also took blood for another PSA, and did so AFTER he did a DRE. THIS IS A NO NO. I asked him about it afterwards and he said they (his group) doesn't believe it makes that big a difference. I accepted it because the Urology Group was rated #5 in the country by USNews rankings. But it still bothered me. Because I knew it was a no no based on what I learned here.

He did a 14 core biopsy, which was negative for PCa, but one core showed Hi Grade Pin, which is believed to often be a precursor to prostate cancer. He said nothing to worry about, retest in 6 months.

The DRE before PSA test bothered me. So 6months later, when one of the other docs of that group moved over to a hospital more convenient to me, I went to see him. Aaron Katz, very well known for his work in Integrative Medicine. He did a PSA and free PSA, which came back at 2.9 and 11, I believe. He also did a PCA3, the result of which was normal (don't recall the number). He wanted to do an MRI, but my insurance company denied it. I told him I'd pay for it if he thought it was important, he said no, just come back in six months, which I did. At that point he directed me to a website, Designs for Health, to purchase two supplements - Broccoprotect, and Inflammatone. 6 MONTHS later, PSA WAS 2.7 which made me feel like it was working. But 6 months after that, PSA was 3.1

At that point, I asked him..."rising psa, past biopsy showed hi grade pin, father had PC. Shouldn't we be doing another biopsy? He said no, as the rate of rise did not alarm him. I was relieved and accepted his response, planning only to return for another PSA in 6 months. Big mistake. First lesson: be your own advocate.

To be continued....

Post Edited (Pratoman) : 1/16/2015 9:24:31 PM (GMT-7)

DUE DILLIGENCE...

Urologist sent me for a bone scan and CT scan of Abdominal and pelvic area. .When i walked into the radiology area, and looked around at all the machines, and people walking around, it somehow hit me , the enormity of what was happening. I broke down and cried, my wife had to help me get control. Somehow i got through the day. and thank goodness, both tests were negative.

Next step was to send my slides to Dr Jon Epstein at Johns Hopkins. ATT: ALL NEWBIES - This is a must. Your local pathologist looks at slides of breast, colon, prostate, lung, and every other organ all day. You need an opinion from a recognized expert in prostate cell Pathology. The second opinion came back at Gleason 6 3 cores. How fantastic. I asked the surgeons i met with (below) and my urologist, about this and they all said if Epstein says its gleason 6 , then it is. I also called Dr Epstein, and he actually go ton the phone and was very emphatic with me that it was Gleason 6.

I was pretty much hell bent on surgery, but the good folks on this forum slowed me down and convinced me to explore all options.
I made an appointment with Dr David Samadi, hi profile nationally known surgeon.
Very nice man, it seemed at the outset. Was sensitive to my mental state (this meeting was only 2 days after my diagnosis). But after calming me down, he made 4 points....
1. don't do radiation, you will be at risk of cancer of the rectum, if it fails you wont be able to do surgery, and the side effects may be less in the beginning but will become worse later.
2. your Urologist (Dr Katz) is not a doctor, he sells vitamins
3. Jon Haas, (the guy that runs Cyberknife) is a nothing, and isn't even published
4. THE Hospital they both work at is a nothing hospital, known for nothing and that is why they invested in Cyberknife and heavily advertise it.

So now I'm like ***. But at that point, all i cared about was finding the best surgeon. So i booked the surgery for Dec 18th.

Two days later, i saw Dr Ash Tewari. Similar reputation to Dr Samadi, very high profile , volume surgeon, over 6000 robotics under his belt. But very different personality. He encouraged me to see a Radiation Oncologist as well. He told me not to rush to book the surgery, that i have time, I booked the surgery anyway, for January 6th, and figured in the 6 weeks till surgery if i went with him, i could have time to speak with ROs (radiation oncologists)
After i walked out of there, i thought to myself, ok, I've seen two of the best Prostate surgeons in the world in the last two days. If i think they are equally competent, and one is a professional and the other is a douchebag, why use the douchebag?

One thing about Dr Tewari, is that he insists as part of his pre surgical planning, that a 3 tesla multi parametric MRI be done. When i asked Dr Samadi's PA about that, she told me he doesn't believe in it, they think its for surgeons who don't have a plan. Excuse me ? So if i ended up going with surgery, who should do it was an easy decision.

THE SURGERY....

I was pretty nervous with anticipation, up until the last week or so, at which time, i became pretty calm for some reason, probably just thinking, its in the hantds of the Gods.

Day before surgery, I was to eat a light breakfast and then only clear liquids, nothing after midnight. Had to take some laxatives, followed by an enema before bed. What fun. I tried to convince myself that i was having a colonoscopy the next day rather than prostate surgery.

Woke up the next morning, headed to the hospital pretty calm, and relieved that the day was finally here. There was a lot of waiting. I got to the hospital at 8 AM and they didn't take me to the OR until almost noon. When Dr Tewaris assistant was interviewing me, she asked me if i had any questions. My only question was, can i still change my mind, and she said yes. But i didn't.

I won't go through the gory details. After meeting with the Anesthesiologist, they took me to the room, got me on the table, gave me an IV, and the Anesthesiologist started asking me things like what i do for a living. I remember thinking to myself, i know what hes doing, i'll be under in 10 seconds. And i was.

Woke up in the recovery room in a lot of pain, i remember screaming "my bladder, my bladder, it hurts" but my wife told me that never happened. Besides my wife, my son and daughter, and my best friend ( a surprise i could have done without, but at the time i didn't care) were all there, and that was comforting.

At about 5PM i was taken to my room. I had reserved a room at Mt Sinai Hospitals 11 West , a "concierge" wing, where you get a private room, or suite, looks like a hotel, visiting hours are 24/7, and they'll bring in a rollaway for your wife to sleep in the room. The cost ranges from $650 to $1600 a night, above the insurance and deductible. I got the $650 room. It sort of goes against the grain for me, but i didn't care about the $650, i wanted a private room, and i wanted my wife and kids with me whenever they wanted.

I was in considerable pain the next day, generally not comfortable, as i recall. They gave me some percoset that day, and after that i avoided all pain killers because i knew constipation would be an issue.

TO BE CONTINUED.....

Good luck with your path. If it's any consolation. ..you're the poster boy for "catching it early"

It's gonna be ok.

David

MODS - this thread, with Prato's post, should be consider a "Sticky" don't you think?

MAN - way to go PRAT!!!!!!!!!!!!!!!!!!!!!!!!!! Nice job. . . . . . . . .

Thank You for creating this post Pratoman. It will be very helpful for people going through this. The idea to add this as a sticky is a good one. You might want to also add what you did to prep your house for post surgery. Getting a recliner and so on.

Patrick, that's a good idea, I should have included a list in my early posts.

ATT all Newbies - if you are prepping for surgery , there are certain things you should consider obtaining prior to surgery
My list is surprisingly small

1. Doughnut (not the kind you eat, the kind you sit on)
2. Recliner - you can rent them from surgical supply stores
3. Depends - I bought Men's Real Fit, they are more like padded briefs
4. Tena, or Depends, Guards. To go inside the depends I think (I'm not up to that) or inside your briefs after you are done with depends
5. Disinfectant wipes - to clean your catheter
6. A lubricant to keep your catheter lubricated at the tip, like Ky. My hospital sent me home with a tube of lidocaine so I use it instead
7. Latex gloves (unless you are allergic to latex)
8. Gauze pads and tape to change dressing on your drain incision
9. I nice lightweight but warm blanket for when you are in the recliner
10. A 5 gallon, oval shaped pail , to carry your catheter bag around the house.
11. Sweatpants with snaps down the sides so you can snap it around the catheter. I couldn't find them anywhere so I just wore shorts around the house,

Items 6, 7 and 8 where given to me at the hospital, but some hospitals may not do that so I wouldn't take a chance, buy in advance. You want to make things as easy as possible for yourself.

I may have left some stuff out if so, anyone feel free to chime in.

One more thing regarding prep.....

Get in shape. Runs or if you can't then Walk, 3-4 miles a day every day leading up to surgery. And do exercises at least for your core. I did planks every day for 2 months before surgery, and walked /jogged 3-4 miles most days. Don't know for sure that it helped, but I think it did. Especially the planks.

Post Edited (Pratoman) : 1/14/2015 8:32:53 AM (GMT-7)

Prat:

I found a cane useful, too, after surgery, to go from sitting to standing only.

Good luck tomorrow...THE TENSION BUILDS! I so know that feeling!

Mel

POST SURGERY.....

Back to Surgeon yesterday. The catheter was removed, with only a small amount of pain, that was very brief. I was then told to drink some water, and the idea is that they need to see that I have the ability to empty my bladder on my own. So I drank a ton of water. Big mistake. It took me 4 hours to empty. But finally, I did. Lots of blood, no real pain on urination, maybe a little near the end. I didn't realize at first that I was leaking as I walked the halls, until I got up from a chair, and saw it was wet, felt the back of my sweatpants (thank God they were black and fast drying - that's a tip for you newbies). Went into the bathroom, and removed the pad to find that it weighed a ton. Luckily I brought an extra with me. After that experience, the leaking seemed to have slowed.
I fell asleep last night and woke at 3AM, 6 AM and 9 AM, each time with a painful urge to urinate. But my pad was dry!!!. Each time, I got up out of bed, kegeling as I did so, and walked to the bathroom. I was able to hold the pee, until I got there. Might have been a small squirt but nothing more.
It took a few seconds to start, and there was blood at the beginning and end, but in the middle, I peed like a racehorse. It was awesome.

I also got my pathology report yesterday, and it was all good. Despite my obsessive worry, there was no escape from the capsule, and negative margins, as well as negative everything. Gleason was upgraded to a G7 (3+4), but with everything organ confined it was not an issue, I'm told.

Post Edited (Pratoman) : 1/16/2015 2:44:40 PM (GMT-7)

So this afternoon, it wasn't too cold out, about 40 degrees, so I walked over to the local Weight Watchers for my monthly weigh in. I'm a lifetime member, and to maintain that (free) status I need to weigh in once a month. This month, I had no problem weighing in under goal, but the pounds are slowly coming back, so I thought I'd better not wait till next week.

Enough rambling, the point is, after weighing in, I kept walking, and got home with 1.75 miles under my belt. I was exhausted, as it was a lot of time walking against the wind and a fair amount of up and down hills (nyc version of hills, just not flat). Then I went onto my treadmill and walked another half mile.

After that, I checked my pad (second of the day, but most of the day I was just laying or sitting around in bed) . It wasn't really wet. Just a bit damp, and there was blood, so I was obviously leaking a little blood. Not concerned, the blood is to be expected. I did empty my bladder before I started the walk.

I'm curious to hear from other surgery guys, since this is all new to me. Am I on track for a quick trip back to continence, or is this typical of the curve?

All good -- heading towards 100% continence for sure, methinks.

Mel

Jerry,

Technically, the next GFMPH gathering is in Baton Rouge, starting two months from today. But, sadly, I won't be able to make it to that one, so my next GFMPH gathering will be Rocester in September. Having met Prato and having been to a couple of the Rocester gatherings I second the notion that Prato should try to attend. It'd be GFMPH for all involved, I'm pretty sure.

when's ebook version going to be ready to download?
;)