Posted 8/1/2015 4:17 PM (GMT 0)
I've been keeping a small journal of my experience with PCa. Decided to copy and paste here as I feel it fits with the thread and my experience with Dr. Patel
Hi Everyone! I'm a 56 white male living in FL. A annual check-up/blood test in Jan 2015 showed elevated PSA. GP recommend a Urologist. Uro did another PSA to confirm not an error. It came back high as well.
Biopsy Mid-March 2015
12 Cores / 12 cores positive
Left Lateral - PA in 1 of 1 core, Gleason 3+3, 65% of tissue, Max dimension is 8.0MM, PI or LVI not present
Left Lateral Mid - PA in 1 of 2 (?) Cores, Gleason 3+3, 25% of tissue,Max dimension 5.0mm, PI or LVI not present
Left Lateral Apex - PA in 1of2 (?) cores, Gleason 3+3. 10% of tissue, Max dim - 3.0MM, PI or LVI not present
Left Base- PA in 1 of MULTIPLE core biop, Gleason 3+3, 65%, Max dim - 7.0MM, PI or LVI not present
Left Mid - PA in 1 of 1, Gleason 3+4, 35%, Max dim - 7.0MM, PI/LVI not present
Left APEX - PA in 1 of 2, Gleason 3+3, 25%. Max dim 4.0, PI/LVI not present
Right Lateral Base - PA in 1of1, Gleason 3+4. 5%of tissue, Max Dim-4.0MM, PI or LVI not present
Right Lateral Mid- PA in 1 of 2 cores, Gleason3+3, 20%, Max dim - 5.0MM, PI or LVI not present
Right Lateral Apex - PA in 1of1, Gleason 3+4, 20%, max dime - 5.0, PI/Lvi Not present
Right Base - PA in 1 of 1, Gleason 3+3, 25%, Max dim - 6.0mm, PI/LVI not present
Right Mid - PA in 1 of 1, Gleason 4+3, 35%, Max dim - 5.0, PI/LVI not present
Right Apex - PA in 1 of 2, Gleason 3+4, 25%, Max dim - 5.0, PI/LVI not present
PSA Jan 2015 - 6.0
PSA Feb 2015 - 6.1
DRE - Negative
Prostate Size - 32g
Bone scan/CT scan (Pelvic/Adominal) Negative
Urologist recommended Dr. Vipul Patel for Robotic Surgery. Consult arranged
A lot of research went into choosing a path for a cure. I chose RALP for me for many reasons. Fortunately, one of the best surgeons is only an hour away from me so I chose Dr. Patel and Celebration Hospital.
I was fairly comfortable with this form of dealing with my prostate cancer until I watched a couple of RALP surgeries on You Tube and Dr. Patel's site. Then I started getting a bit nervous.
My Uro ordered a bone scan and pelvic CT to check for signs of the cancer spreading. The results showed negative for the spread and...a major hernia in my right pelvic area. It was suggested to me to get this taken care of at the same time of the RALP. (something I'm still debating was the correct choice for me). I had no idea I had this hernia. I had a funny feeling in that area but thought it was due to residual effects of a vasectomy I had about 10 years ago.
Tuesday July 9, 2015
My oldest daughter went with me to the hospital. I met the day with a high level of anticipation and nervousness. I arrived at the hospital at 10 AM for a 12 PM surgery.
Celebration Hospital (Florida Hospital Orlando-Celebration) is a neat hospital. It is built very much like a resort. They happen to be a client of mine and I was told that it was built in the spirit of Disney.
There is a lobby for check very much like a resort hotel. A staff member of Dr. Patel came down and checked me in. It took about 30 min to get me back into pre-op.
During pre-op, various docs and nurses stopped by. Each time, the same questions over and over. Dr. Patel's assisting surgeons came by and thoroughly discussed everything and reviewed all of my charts. The drug doc introduced himself and discussed his piece. The hernia surgeons came in and marked the hernia area with a magic marker and discussed their piece. The pre op nurses were great.
Finally, about 40 mins behind schedule, the "drug doc" came in and gave me the magic shots that said "lights out". I woke up 4 hours later in recovery. My two daughters were there and I remember them laughing a lot. Later, they told me I was saying some funny stuff! Hilarious stuff! Glad there are no recordings that I know of. Looking back on it, I don't remember much about recovery.
When I got to the private room after recovery, I couldn't get comfortable. My bottom hurt so bad from the gas build up (I think) that I was really uncomfortable. A big shot of Diluadid fixed that for the time being, however, it took two more doses of two Percosets to finally get me through the gas in my bottom and I could rest comfortably.
In between the diluadid and percocets, they got me up to walk. My knees were so wobbly that I couldn't stand. My daughter and my nurse tried to assist me, however, I nearly collapsed twice. The nurse kind of acted like this wasn't normal. Later I would find out that she didn't know I had the hernia repaired and was on the table for a little over 4 hours (normal time for Dr. Patel is 2 to 2.5 hrs) I had a lot more of the anesthesia than most of the other patients.
And there lies one of my issues with getting the hernia fixed at the same time of the RALP. Most of the other patients I saw and spoke with were walking around really well and did not experience the same level of pain as me. I think this is a big factor in how my recovery is going. The hernia procedure is not a big thing. I think I should have waited 6 months and go the RALP over with and then come back. The extra time on the table is making my recovery a bit more difficult. Hard to find comfort and painful. August 1 update...now that I'm healing I am glad I did the RALP and the hernia repair at the same time.
The nurses at Celebration are excellent. They took great care of me, addressed my pain needs as needed, I thought for sure there would be no way I would be going home by noon but I did.
All of my walking in the hospital ended up being with a walker. My legs were so heavy and knees so wobbly that I didn't trust walking on my own.
I did not speak to Dr. Patel, however, my daughter did. He called her on her cell phone immediately after the surgery. He told her I did great. That he could not see any signs of spreading and that my prostate came out very easy. He said my surgery was a little tougher than normal due to my prostate being deep (I will get clarification on this at 6 week follow up meeting with him) and that I had a lot of fat in the pelvic area. I'm not a fat guy so this surprised me. I guess that's where I store it. I'm looking forward to meeting him on Tuesday to go over the results...and get this catheter out.
Thursday July 11, 2015
Now that I'm home and on day 2 after the surgery, I can feel a bit of improvement each day. I've eaten about one meal since Tuesday. Today (Saturday) the family brought home some subs and I slowly ate half of a half. Big mistake!
The gas....wow! That stuff can hurt! I have terrible pains in my shoulders and a lot of pressure in my abdomen. Walking helps and since I am now stable and can walk freely, I am doing a lot of it. I have a script for Lortab, which I used the first day home but, have switch to the pain meds the Dr. gave me. They are much weaker and do the trick. I think its Tramadol.
Last night, I slept extremely well. When I consulted with Dr. Patel, I told him I was going to have a sleep study done for OSA. He said to be sure and get that done as it will help my recovery if I indeed had it. I ended up with severe OSA and last night posted the best scores on my machine ever.
I'm kind of dreading the removal of the catheter. Is it really painful or not? Some say yes, others say no.
I know some of you here have had surgery with Dr. Patel. I'd love to hear your comments regarding the experience. I do have some criticisms of his staff from the time of consultation until the surgery. I was giving some conflicting info and had to change schedulers. Other than that, everything else was top notch.
07/12/2015
Yesterday was a good and bad day. I woke up and felt great, looked much better and was up walking a lot. I started to feel like eating a bit. Later in the day, the gas pain kicked in....and oh my god! 4 hrs of some of the worst cramps I've ever had? Couldn't imagine the intensity could be that strong. Finally, the fart I prayed desperately for happened and I started getting relief. Even got two small bowel movements out of it.
Waking up this morning I feel a bit nauseous and a bit feverish. One good gas pass and feel like going back to bed. Hope things keep flowing there. That's been the worst part so far. I thought my incisions we're going to blow open. Lol
07/13/2014
Yesterday...
Was mostly ended uneventful. Spend the day alone as I sent the fam out for my grandsons birthday. He lives 2 hrs. away or I would have joined.
I noticed I got a little soreness from the catheter but not bad. I was hesitant to eat a lot due to the gas pains from yesterday. I ate a couple of hard boiled eggs and a banana over the course of about 2 hours. I got a nice BM and that gave me confidence to eat more. Experienced no gas and another BM.
The thing I noticed about yesterday is that while I drank a lot of h2o I didn't seem to be passing much fluids to the bag as compared to what I was drinking. I only emptied the bag twice and each time it was less than half full.
For some reason I was wired and couldn't get to sleep. I took a sleeping pill to get me there. I slept well and got up about 8 this morning. I was disappointed as my bag was not very full and.... It seemed to contain much more blood than other recent bags. I went ahead and changed it and was still a little sleepy so I walked around about 15 min and laid back down. I fell asleep and woke up at 10. Got up to walk and noticed my bag was really heavy. It was like 3/4 full and very yellow. I was really surprised and happy as my body seemed to be back in elimination mode. I feel very hungry and look forward to eating.
When I got home from the hospital I got on the scale and weighted 10 lbs more than going in. Today I am 8 lbs lighter. I hope I get to that "lost 10 lbs from the surgery" level I have seen others talk about.
Finally... The boys downstairs look like a ball bat was taken to them. Black and blue and huge. Like full of water. Little budd looks fine but wants that tube out asap. That happens tomorrow as well as the pathology report. Can't wait!
07/14/2015
Well today was eventful with good and bad results.
Went to get the catheter out at 9:30 after a very restless night. I was wired again and couldn't fall asleep. The last time I saw the clock was 245 and had to get up at 6:30 as the Docs office is about an hour and a half away.
Doc ordered a crystogram so I had to go to the hospital across the street first. The imaging center was behind so it took like 1.5 hours to get through the crystogram. I was not happy as I was 30 min late for the Docs appt. The imaging center called and told them it was their fault.
So, I'm sitting in Dr. Patels office being very excited (catheter) and anxious (pathology report)...though a little nervous and scared in there as well. A long time goes by and when I see 5 other people go back from the waiting room that came in after me, I lost it a little bit. Up to this point, Dr Patel's staff has been top shelf. But this snotty nurse comes out and says they are short handed today. Wrong answer! It's now 1:30 pm and I've been sitting on my arse ( which is difficult because of the hernia repair on top of the prostate surgery) or walking since around 8 am. They told me I'd be out of there by 11 am when they scheduled the appt.
By this point, I was getting mentally worn out. I was thinking all kinds of bad thoughts. How could they be this insensitive? How could they just go to lunch and leave me sitting there? Dr Patels assembly line approach to RALP is BS....I'm probably getting back really bad news, etc...etc...
Finally, a different nurse called me back and was talking to me. She said just bad timing eh? Because she was nice, I didn't bite her head off but she could tell I wasn't amused. So she asked if anyone explained what was going on and I said no...I've just been sitting here wondering. She apologized profusely and explained that Dr. Patel was in a difficult surgery and they were waiting on him to comment on my cystogram.
Well, finally...that made sense. I asked if someone could go ahead and cover my pathology report to kill some time while we waited for Dr. Patel's instructions.
So Mark, one of his practice administrators, came I and we discussed the report. I was so sure I was headed for more disappointment that as I got positive answers for each question I asked I welled up with more and more joy to where I finally couldn't contain it and started crying.
Just as soon as we finished covering the pathology report they came in and gave me the bad news of the day. The bladder was leaking and the cath needed to be in another week. Bummer, but at that point, it was a small price to pay for the news I just received.
So back home and the day ended kind of rough. I seemed to have a lot of dark ruby pee color when I was producing mostly yellow before. I've had a lot of new aches and pains in the bladder area and no bowel movements. Had a low grade fever all evening and slept on and off since about 5 pm today. I don't think it was just the cystogram. I think I way over extended myself being out from roughly 8am to 4 pm (including drive time), sitting on uncomfortable seats or walking too much.
Hope tomorrow shows some improvement. I'd sure love to see the boys below the belt to show some improvement. They seem to be still getting worse, not better. Big as a grapefruit and almost black
Pathology results:
AJCC Stage - pT2c
Gleason Score - 4+3 = 7
Involved 20% of entire gland
Negative margins - nearest right and left posterior which are less than 1mm from tumor
7 of 7 lymph nodes - negative
Perinueral invasion - Identified
Seminal vesicles invasion -Not identified
Angiolymphatic invasion - not identified
Extra prostatic extension -not identified
Weight 47 g
July 21, 2015
The past week has been mostly uneventful. Still having difficulty sitting down. A lot of soreness. Back to Dr Patel's to get the cath out. Cystogram first. This time, I was taken back from the waiting room promptly. While waiting for the results of the cystogram, John, the other PA came in to chat. I had a ton of questions that I didn't ask the previous week. He was very patient and took his time giving well explained answers. Finally, more bad news. Bladder sutures still leaking. Cath in for another week.
July 28, 2015
Lots of healing going on the past week. No more red in the urine and I've dropped about 10lbs pre surgery weight. I am feeling a bit more energy coming back. Feeling very confident the cath is coming out today. Got the cystogram first. The X-ray tech shook his head....still leaking. Now I'm really bummed! Over to Patel's office and John comes in the room. I said I guess I'll be back next week. He said no, we are taking the cath out today. He said you still have a small leak but almost stopped.
Dr Patel has a terrific nurse that helped develop his continence program. Roger removed my cath (which was only mildly uncomfortable) and then spent about 45 minutes prepping me for the next stage of getting well. Filled out the script for the vacuum pump, got samples of Viagra, full marching orders on kegels , orders for ct scan and psa test and appointment for follow up with dr. Patel.
Driving home happy and yet feeling strange. It takes a bit of getting used to wearing a Depends and feeling like I'm flooding out yet everything is dry.
August 1, 2015
The first two days without the cath, (07/28 and 07/29) I was using 7-8 pads per day. The second night, I woke up and just peed in the toilet like normal. I noticed the pad was extremely dry. This would happen a couple times more that night. I ended up with the same pad in for about 9 hrs.
Over the next 2 days, while there was still a lot of leaking, I started feeling like going to the bathroom and produced a decent stream each time. Down to about 4 pads a day.
Starting kegels today. Same pad for 12 hours. Hopefully, this progress keeps going.