From Diagnosis to Treatment to Recovery

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Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 4785
   Posted 1/13/2015 7:34 PM (GMT -6)   
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)


Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 4785
   Posted 1/13/2015 7:48 PM (GMT -6)   
Diagnosis

November 5th, i had a 12 core ultra sound guided biopsy. It was not painful, same as last one, just nerve wracking. like little pin pricks. Doc was good, he asked me if i wanted a heads up each time before he pulled the trigger on his AK-47that was stuck up my ass. I said no. After he was done, i asked him if he saw anything abnormal on the Ultra Sound, to which he replied "no, not really". To which i replied "no? or not really? " To which he replied no. I knew he was lying, trying to spare me, knowing how nervous i was to begin with. So i just asked him " so from all I've read, i think my odds of the biopsy being positive is 55-60%. He responded" that's about right. UGH.

November 10th, a day that will live in infamy. At least for me. My cell rings at 11:55, i was getting ready to go meet with a client. Its the doctor. I could sense the unease in his voice, and i remember thinking, i might as well make this easy for him. So i said "i have cancer, right?", he said yes. Even after i said that, until the moment he said yes, i didn't really believe it. I asked about the # of cores and gleason, he said 3 positive, 2 G6, one G8. UGH number two. I assumed it was 4+$, but when i called back later the nurse told me it was 3+5. Unusual.
After he told me the gleason, his very next sentence was "if you want i can set you up with an appointment with Dr Jon Haas who runs our Cyberknife program. To which i responded that i want to explore all of my options, and basically hung up. I would have felt better if he said "why don't you make an appointment to come in, bring your wife, and we can discuss your options" But that's not what i got.

I do not know how i did it, but i got up, told my partner, and grabbed my briefcase and walked out the door t meet my client. I tried to make like all was ok, and started to discuss business, but i just couldn't. I stopped, and told them about the call i had gotten 15 minutes earlier. They are clients of mine for 15 years. They said lets not talk business, but after i told them, i somehow felt better, and insisted that we discuss what we meant to discuss. But they were more concerned with me, than their portfolio.

After the lunch, i just went straight home and told me wife. I was in a total fog for about 2-3 weeks after that, but managed to start the process....

TO BE CONTINUED.....

Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 4785
   Posted 1/13/2015 8:07 PM (GMT -6)   
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.
Rising PSA from 2008 through April 2013
PSA 2008 - 2012 .7 TO 2.2
Dec 2012 - Biopsy, 14 core, nO PCA, one core HGPIN
4/13 PSA 2.8, FPsa 11, PCA3 13, 10/13 PSA2.7 fPSA 15
4/14 PSA 3.1 fPsa 16, 10/14 PSA 4.3 fPSA 12 PCA3 26
11/14 BX 3/12 cores + G610%, G6 20%, 3+5=8, 70%
2nd opinion Johns Hopkins, all G6 10%, 20% 80%
3rd opinion MSKCC all G6 10%, 15%, 70%

RALP scheduled January 6th 2014

Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 4785
   Posted 1/13/2015 8:19 PM (GMT -6)   
DUE DILLIGENCE PART 2
I met next with Dr Gewanter, who is the Chief of Radiation Oncology for the Long Island Complex (2 facilities). Great guy. He was very straight with me. He told me that my odds of cure, are 95% whether i chose radiation or surgery. He explained that LDR Brachy would be his choice, because while HDR has had very good results, he felt he wanted more history before recommending it. I'm not sure that's the right thing, but i relied on him and accepted his opinion He told me that he does not do Brachy but would refer me to one of the ROs at MSKCC in Manhattan if i chose to move forward. It would be Dr Zelefsky, (the Dr Tewari of radiation) if i wanted him. He explained all of the upside and downside of both Brachy and surgery, and stated that its a personal preference. He suggested i schedule a follow up after the MRI was done.

I got the MRI done and went straight to Dr Tewaris office for the results. He told me there was no evidence of cancer breaking outside the prostate capsule, and no lesions showed up that we were not aware of. Good news. I told him about my appointment with Dr Gewanter and asked if he thought i should keep the follow up appointment, considering i had pretty much decided on surgery if there was no ECE. He suggested i keep the appointment as a courtesy, and to "complete the protocol"
I then had the Disks sent to Dr Gewanter and met with him again. He re-iterated that he looked at the MRI pictures himself and it indicated i would do well with either option. So i shook his hand, told him if i needed salvage radiation after surgery i would without question contact him, and then said that i hope i never see him again.

I also by the way, did meet with Dr Jon Haas at Winthrop, who runs the Cyberknife program. Very nice man, also discussed the ups and downs of all treatments, told me he didn't like seeds, so he doesn't do them, that it was old school. I felt like i was being sold. I discounted that option.

So i am on the road to surgery because
1. i want it out
2. i want to know the final pathology - 30-40% of the time, gleason score is upgraded in final pathology
3. i wanted the (hopefully ) immediate drop in PSA after surgery , as opposed to the sometimes slow gradual drop in PSA that comes with Brachytherapy.

There is a common theme in all these above reasons - i am a neurotic, i cannot deal with uncertainty. Others are different. I wish i was. But i believe the psychological makeup of a person is as important as the facts in making this decision

TO BE CONTINUED.....
Rising PSA from 2008 through April 2013
PSA 2008 - 2012 .7 TO 2.2
Dec 2012 - Biopsy, 14 core, nO PCA, one core HGPIN
4/13 PSA 2.8, FPsa 11, PCA3 13, 10/13 PSA2.7 fPSA 15
4/14 PSA 3.1 fPsa 16, 10/14 PSA 4.3 fPSA 12 PCA3 26
11/14 BX 3/12 cores + G610%, G6 20%, 3+5=8, 70%
2nd opinion Johns Hopkins, all G6 10%, 20% 80%
3rd opinion MSKCC all G6 10%, 15%, 70%

RALP scheduled January 6th 2014

Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 4785
   Posted 1/13/2015 8:31 PM (GMT -6)   
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.....
Rising PSA from 2008 through April 2013
PSA 2008 - 2012 .7 TO 2.2
Dec 2012 - Biopsy, 14 core, nO PCA, one core HGPIN
4/13 PSA 2.8, FPsa 11, PCA3 13, 10/13 PSA2.7 fPSA 15
4/14 PSA 3.1 fPsa 16, 10/14 PSA 4.3 fPSA 12 PCA3 26
11/14 BX 3/12 cores + G610%, G6 20%, 3+5=8, 70%
2nd opinion Johns Hopkins, all G6 10%, 20% 80%
3rd opinion MSKCC all G6 10%, 15%, 70%

RALP scheduled January 6th 2014

Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 4785
   Posted 1/13/2015 8:43 PM (GMT -6)   
ROAD TO RECOVERY....

Surgery was on a Tuesday afternoon, I was released from the hospital at 9PM Wednesday night, after they felt comfortable removing the drain (not a comfortable experience for me, but I'm glad it was for them).
I brought a doughnut to sit on in the car and it was a good thing.
I was told that it would be very tough getting in and out of bed for the first week, so I had rented a recliner, the kind that not only lays you down, and sits you up, but helps you stand up as well. I slept in it the first night and I think the second, but it wasn't very comfortable. So iwent up to the bedroom and started sleeping in my own bed. Day 3 and 4, I think, I needed my wife to help me get in and out of bed. By day 4 I was able to do it by myself, with great effort. As I write this, I am on day 8, and it is effortless.

The gas pains were brutal for about 6 days, then subsided. Very important to walk as much as possible to get rid of the gas (that they pump into you during surgery to open the work area). So I forced myself to walk 10, then 15 then 20 minutes at a time, a few times a day. I also took Gasx, which was recommended by a member here, and I believe that helped.

The second day I woke up and my catheter bag was bright red, I freaked out. Contacted the Drs office, nurse told me its normal and will continue for 2-3 weeks.

Also the second day home, Drs associate (anotherDr) called me to check up and see how I was doing . I told him i was a mess, and served him up a list. HE said all normal and to be expected, just be patient. I also told him that i was scheduled to come in and get the catheter removed the following Thursday, but i knew that Dr Tewari was not going to be in, and although they were going to give me the pathology results, would it be possible to ask Dr Tewari to call me when the results come in. He responded..."don't worry, we do our homework, and if there is anything in the pathology of concern, we will let you know" Not sure what that meant.

Anyway, starting around day 4, i began to notice big improvments, and today i am on Day 8 (one week from surgery date) and basically have no pain. My urine is even yellow, unless i am moving around. Only problem is i have to move slow, and having to carry the catheter bag around in a pail with me, is
annoying.

In two days i get the catheter out, and , i hope, get a good path report, and i hope i will be able to start moving forward from this and live life again. I will continue to update as things progress, as best i can.

I hope this is helpful If it helps one person get his arms around their situation, it was worth it.
Rising PSA from 2008 through April 2013
PSA 2008 - 2012 .7 TO 2.2
Dec 2012 - Biopsy, 14 core, nO PCA, one core HGPIN
4/13 PSA 2.8, FPsa 11, PCA3 13, 10/13 PSA2.7 fPSA 15
4/14 PSA 3.1 fPsa 16, 10/14 PSA 4.3 fPSA 12 PCA3 26
11/14 BX 3/12 cores + G610%, G6 20%, 3+5=8, 70%
2nd opinion Johns Hopkins, all G6 10%, 20% 80%
3rd opinion MSKCC all G6 10%, 15%, 70%

RALP scheduled January 6th 2014

island time
Veteran Member


Date Joined Dec 2014
Total Posts : 1229
   Posted 1/14/2015 4:18 AM (GMT -6)   
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
56 yo @dx
11/01/11 PSA 3.1
03/20/13 PSA 4.0
10/22/13 PSA 4.1
09/17/14 PSA 4.3
10/27/14 PSA 5.0
DRE "Slightly Enlarged" otherwise normal
11/26/14 Biopsy. 2 cores G6, 2 cores atypical.
Dr Epstien 2nd opinion...2 cores G6 <5%, 1 core G6 <20%, 1 core HGPIN T1c
Oncotype testing...Freedom from non-organ confined disease 94%, Freedom from high grade disease 93%, Favorable path 87%. Exploring options

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2279
   Posted 1/14/2015 6:11 AM (GMT -6)   
That was a lot to write, but one never knows who you may help in their decision process.

Your process is a great example of the power of this little community we have here. Imagine your experience, but without talking to anyone here. Much harder, I would think. The doctors just can't be with you the way these guys can.

The forum is a richer place for you being here, my good man.

Jerry
IGRT by IMRT, 44 done 8/28/13: 50.4 Gy pelvic nodes, 79.2 Gy prostate
ADT2 3 yrs: Lupron/Casodex 5/1/13

Age 57: 55@Dx 4/16/13-
Bx 6/12 pos G9=5+4 (80%, 60%), 4+5 (2 at 100%, 80%, 10%), PNI+
3T MRI: Bilateral EPE, NVB+, SV-, LN-, cT3a

Date PSA fPSA
11/17/14 <0.1
10/6/14 <0.1
5/16/14 <0.1
2/6/14 <0.01, T<10
11/13 <0.1
8/13 <0.1 (ADT2, post-RT)
6/13 9.7
3/13 5.2 12% PCA3=31
9/12 4.1 15%

A Yooper
Veteran Member


Date Joined Jul 2012
Total Posts : 2139
   Posted 1/14/2015 7:14 AM (GMT -6)   
MODS - this thread, with Prato's post, should be consider a "Sticky" don't you think?

MAN - way to go PRAT!!!!!!!!!!!!!!!!!!!!!!!!!! Nice job. . . . . . . . .
57 yrs old, excellent health - DX'd PCa July '12
PSA 5.8
Biopsy 6/27/12
9 of 12 Gleason: 3+3 and 3+4
Negative DRE’s / NO / MO / T1C / Gland size 40gm / Vol. 22gm
Volume Study 8/14/12
Casodex 50mg daily 5 wks prior 2 wks post BT
LDR BT 9/21/12 – no issues, No SE's
3 mo PSA 12/12 0.48!
6 mo PSA 3/13 0.21!
9 mo PSA 6/13 0.30!
1 yr PSA 9/13 0.30!
18 mo PSA 3/14 0.30!
2 yr PSA 9/18/14 0.13!

gedman
Veteran Member


Date Joined Jan 2013
Total Posts : 1102
   Posted 1/14/2015 7:46 AM (GMT -6)   
Great summary.

You should put a link to this thread in your signature, so future readers can find out more about you. Similar to what I did below with my links.

-Gedman
Diagnosed and treated in 2013 at 41 years old.
DX 1/28/13 (PSA 9; BX G3+4, 5 of 12 cores). RALP 4/3/13 w/ Dr. Tewari.
Nerves spared, T2c, N0, G4+3, tumor 10%, organ confined, -margins, -EPE, -SVI, +PNI.
Full continence. PSA undetectable. ED managed with Viagra. (Previously used bimix.)
about me: Intro / Plan / Surgery Recap / Pathology Report / PSA History

I recommend these links:
- NCCN Prostate Cancer online book (PDF download version)
- Questions to ask a Robotic PCa surgeon and/or a Brachytherapy radiation seeds specialist
- Dr. John Mulhall's excellent book and YouTube videos (I, II, III) on ED due to PCa treatment
- What you should know about Peyronie's Disease

Patrick M
Regular Member


Date Joined Nov 2013
Total Posts : 413
   Posted 1/14/2015 8:41 AM (GMT -6)   
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.
Age 48,
PSA 14.7 06/24/2013
PSA 14.6 08/20/2013

Biopsy 10/1/2013 - 2 out of 12 cores positive
Gleason 3+3

RALP on 11/11/2013.
Catheter out on 11/18/2013

Still a little leaky 01/01/2015

PSA <0.1 12/29/2014
PSA <0.1 07/07/2014
PSA <0.1 01/13/2014


Current very happy member of the 0 Club

(Not a Medical Professional)

Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 4785
   Posted 1/14/2015 8:50 AM (GMT -6)   
Thanks for the positive comments, glad you guys think this is exactly what I hoped it would be. And yes, I can't emphasize enough, how this place has helped. I honestly don't know how I would have done this on my own. I feel for those who do not find this place. I would never have gone for 2nd opinion on my slides, and would have, at the least, thought I was walking around with GLeason 8 for the last two months. And that might have affected my treatment choice. (I probably shouldn't say that, for all I inow my path report tomorrow might show GLeason 8 :-(. )

Today is 9 days, including surgery date. I'm trying to figure out how, after my catheter is out, I can get my lovely wife to continue making and serving me breakfast, without her telling me to go F myself, lol. I think tomorrow will be my last breakfast in bed.

Woke up this morning, washed up and walked 20 minutes. That's become part of my routine. I Imagine it will be easier to sustain it after the catheter comes out tomorrow. I tried to embrace the catheter, even named it Tifanny. But the truth is I hate it. So tomorrow is a big day.

Gonna log on to my office, do some work, call a few clients, and then hopefully s**t, shower shave and shampoo. Then take a. Walk outside.

My mind will be pretty occupied thinking about the path report that I hopefully get tomorrow, but I can't control it so, whatever.
Rising PSA from 2008 through April 2013
PSA 2008 - 2012 .7 TO 2.2
Dec 2012 - Biopsy, 14 core, nO PCA, one core HGPIN
4/13 PSA 2.8, FPsa 11, PCA3 13, 10/13 PSA2.7 fPSA 15
4/14 PSA 3.1 fPsa 16, 10/14 PSA 4.3 fPSA 12 PCA3 26
11/14 BX 3/12 cores + G610%, G6 20%, 3+5=8, 70%
2nd opinion Johns Hopkins, all G6 10%, 20% 80%
3rd opinion MSKCC all G6 10%, 15%, 70%

RALP scheduled January 6th 2014
My Story:

Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 4785
   Posted 1/14/2015 9:05 AM (GMT -6)   
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)


Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 4785
   Posted 1/14/2015 9:22 AM (GMT -6)   
ATT Mods: I'm trying to put a link to this thread in my signature block. It shows the change with the words My Story, but the link doesn't show. The link is in my signature block if I go into edit profile. I even deleted my profile on the edit profile page, then copied and pasted it back in. Nothing works. Any suggestions?
Rising PSA from 2008 through April 2013
PSA 2008 - 2012 .7 TO 2.2
Dec 2012 - Biopsy, 14 core, nO PCA, one core HGPIN
4/13 PSA 2.8, FPsa 11, PCA3 13, 10/13 PSA2.7 fPSA 15
4/14 PSA 3.1 fPsa 16, 10/14 PSA 4.3 fPSA 12 PCA3 26
11/14 BX 3/12 cores + G610%, G6 20%, 3+5=8, 70%
2nd opinion Johns Hopkins, all G6 10%, 20% 80%
3rd opinion MSKCC all G6 10%, 15%, 70%

RALP scheduled January 6th 2014
My Story:

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7180
   Posted 1/14/2015 10:20 AM (GMT -6)   
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

ARangel14
Regular Member


Date Joined Aug 2014
Total Posts : 291
   Posted 1/14/2015 11:05 PM (GMT -6)   
Did this thread replace the other thread we've all been posting on that had went to 9 pages? I've been trying to find that thread. Good luck on cath removal and thanks for posting this for all the newbies that come and have questions. They will find the information very helpful. ~Miki~ (Edit: found the New Normal thread and it got locked so I found it lol)
My name is Miki my husband Bob- age 53 @ DX
Initial PSA 8/14 was 4.1
Biopsy 9-11-14
Initial Results: 9/25/2014 -- 6 of 12 cores positive 3+3=6 (5%) 3+3=6 (5%) 3+3=6(3%) 3+3=6 (10%) 3+3=6 (40%) 3+4=7 (40%)
PNI Left middle and Left lateral apex
DaVinci RP performed 12-03-2014
Surgical path downgraded to Gleason 6
Stage T2c one positive margin 30% tumor of prostate
1-8-2015 PSA 0.00

Post Edited (ARangel14) : 1/14/2015 10:10:02 PM (GMT-7)


Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 4785
   Posted 1/16/2015 11:48 AM (GMT -6)   
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)


SophieW
Regular Member


Date Joined Oct 2014
Total Posts : 215
   Posted 1/16/2015 1:17 PM (GMT -6)   
Yay! so happy to hear the path results! and it sounds like you are on road to continence.
Sophie
husband 53 yrs at dx 9/25/2014
psa 14.7
G9: 11 of 14 positive, 7 G9, 1 G8, 3 G7
bone scan clear
cancer is outside capsule
RALP NN sparing 11/4/2014
cancer spread to bladder, 1 inch removed
pathology T3a G9 40% both lobes
prostate 47 grams
SV negative, LN negative
microscopic adenocarcinoma anterior bladder neck
other margins clean
11/10/14 catheter out
12/22/14 PSA .19

Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 4785
   Posted 1/16/2015 3:50 PM (GMT -6)   
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?
Rising PSA from 2008 through April 2013
PSA 2008 - 2012 .7 TO 2.2
Dec 2012 - Biopsy, 14 core, nO PCA, one core HGPIN
4/13 PSA 2.8, FPsa 11, PCA3 13, 10/13 PSA2.7 fPSA 15
4/14 PSA 3.1 fPsa 16, 10/14 PSA 4.3 fPSA 12 PCA3 26
11/14 BX 3/12 cores + G610%, G6 20%, 3+5=8, 70%
2nd opinion Johns Hopkins, all G6 10%, 20% 80%
3rd opinion MSKCC all G6 10%, 15%, 70%
RALP scheduled January 6th 2014
My story, at tinyurl.com/qgyu3xq

Patrick M
Regular Member


Date Joined Nov 2013
Total Posts : 413
   Posted 1/16/2015 3:54 PM (GMT -6)   
I think you are doing really well, I had a jagged recovery, some days dry and then some days leaking like a sieve. But, so far it sounds like you on track to be dry. Just be patient with the process
Age 48,
PSA 14.7 06/24/2013
PSA 14.6 08/20/2013

Biopsy 10/1/2013 - 2 out of 12 cores positive
Gleason 3+3

RALP on 11/11/2013.
Catheter out on 11/18/2013

Still a little leaky 01/01/2015

PSA <0.1 12/29/2014
PSA <0.1 07/07/2014
PSA <0.1 01/13/2014


Current very happy member of the 0 Club

(Not a Medical Professional)

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7180
   Posted 1/16/2015 3:56 PM (GMT -6)   
All good -- heading towards 100% continence for sure, methinks.

Mel

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2279
   Posted 1/16/2015 4:06 PM (GMT -6)   
Pratoman, with all you've done and been through here, it sure would be good to finally meet you someday! Have you considered our next GFMPH fall gathering in Rochester? It will be the last weekend in September. You'd finally meet a great many of the folks with whom you've been kibitzing lately. They're great!

Jerry
IGRT by IMRT, 44 done 8/28/13: 50.4 Gy pelvic nodes, 79.2 Gy prostate
ADT2 3 yrs: Lupron/Casodex 5/1/13

Age 57: 55@Dx 4/16/13-
Bx 6/12 pos G9=5+4 (80%, 60%), 4+5 (2 at 100%, 80%, 10%), PNI+
3T MRI: Bilateral EPE, NVB+, SV-, LN-, cT3a

Date PSA fPSA
11/17/14 <0.1
10/6/14 <0.1
5/16/14 <0.1
2/6/14 <0.01, T<10
11/13 <0.1
8/13 <0.1 (ADT2, post-RT)
6/13 9.7
3/13 5.2 12% PCA3=31
9/12 4.1 15%

PeterDisAbelard.
Forum Moderator


Date Joined Jul 2012
Total Posts : 5616
   Posted 1/16/2015 4:24 PM (GMT -6)   
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.
61
Slow PSA rise 2007-2012: 1.4=>8
4 bxs 2010-2012:
1)neg
2)neg,
3)positive 1 of 14 GS6(3+3) 3-4%, 2nd opinion GS7(3+4)
4)neg.
Mild Pre-op ED
DaVinci RRP 6/14/12. left nerve spared
Path: pT3a pN0 R1 GS9(4+5) Pos margins on rt
24 mo ADT3 7/12 - 7/14
Adjuvant IMRT 66.6 Gy 10/17/12 - 12/13/12
Incontinent, Trimix, VED, (AUS Planned)
Forum Moderator - Not a Medical Professional

Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 4785
   Posted 1/16/2015 4:52 PM (GMT -6)   
Thanks for these comments on the continence. Its encouraging. I have to admit, its only day 2 and every time I feel a squirt or leak, I get frustrated, which is stupid. But natural. I have to wait 2 more days to start the Kegels, I cant wait.

Yesterday, on the way home from the Dr, my wife asked me, "so now that you have all these new internet friends, are we going to meet any of them?" LOL. That's when I told her about GFMPH
after carrying on here for months like a 2 year old, I'm almost embarrassed to meet you guys. But the operative word is "almost", after going through treatment for this disease, I think it takes a lot for most of us to be embarrassed about anything.

Good chance I will make the Rochester thingy. I was actually thinking of making the Baton Rouge thingy, but don't feel comfortable committing yet until I am a little more past surgery, maybe after my first PSA, in mid February. I need a vacation, was thinking of a beach, but maybe I do a few days in New Orleans grab a good Brennans Steak, then drive on up. We'll see, but if not I will make the Rochester one. It would be great to meet you guys.
Rising PSA from 2008 through April 2013
PSA 2008 - 2012 .7 TO 2.2
Dec 2012 - Biopsy, 14 core, nO PCA, one core HGPIN
4/13 PSA 2.8, FPsa 11, PCA3 13, 10/13 PSA2.7 fPSA 15
4/14 PSA 3.1 fPsa 16, 10/14 PSA 4.3 fPSA 12 PCA3 26
11/14 BX 3/12 cores + G610%, G6 20%, 3+5=8, 70%
2nd opinion Johns Hopkins, all G6 10%, 20% 80%
3rd opinion MSKCC all G6 10%, 15%, 70%
RALP scheduled January 6th 2014
My story, at tinyurl.com/qgyu3xq

InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 7750
   Posted 1/16/2015 5:59 PM (GMT -6)   
when's ebook version going to be ready to download?
;)
I'll be in the shop.
Age 54, 52 at DX
PSA 4.2 10/11, 1.9 6/12, 1.2 12/12, 1.0 5/13, .6 11/13, .7 5/14, .5 10/14
GS 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post
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