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Not what I was expecting at 46

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Posted 11/9/2011 9:29 PM (GMT 0)

Hi everyone, I am new to the forum and figured i would share my story and start to connect with the PC fraternity. I guess I should start by giving you the basics. I am 46, just recently married to a lovely lady (more on that later) I have two great healthy kids 17 and 13 and before this.......I have always been as healthy as a horse. So my PC story began back in June of this year. My primary caught my elevated PSA (4.6) in a rountine blood test. I had starting going for a annual physical a few years back and I am glad I started the practice. If not, I am not even sure I would fully understand what PC was let alone be where I am today. She referred me to a local urologist (My first visit to one BTW) which lead to my second elevated PSA test (4.8), (DRE was fine) a 12 core Biopsy and ultimately my diagnosis of PC. Not something I was expecting at 46! Cancer was found in 2 of the 12 cores (both lobes) and my Gleason came back as 7 (3+4) As I write this, I am 6 days post Davinci RP and due to head back for cath removal and post op pathology tomorrow. I am trying not to feel too anxious about what the report has to say but that is easier said then done. I feel I have done a good job educatiing myself on the desease, and know that overall that I should feel pretty positive about tomorrow's appt. With that said, I could use some advise on what questions to ask my Dr. I know determining if it has spread to the seminal vessicles and the pelvic lymph's are key and that post op Gleason can increase based on the ability to thoroughly examine the Prostate, etc. Is there anything else I should be asking? I do better if i write it down vs.winging it.

Thanks in advance guys!

Phil

Posted 11/9/2011 10:07 PM (GMT 0)
Welcome to HW! Shame you need to be here, but we are here just the same. Questions and vents allowed :-)

Two important things -

1) get a copy of the path report (lots of it won't make sense until later). Also ask for a copy of the surgical report as well. Mine was of little value, but just in case -

2) get a clear idea of what you should / should not be doing during your healing time.

I took a small recorder with me to all appointments - it was later amazing how much I either heard badly or wasn't hearing at all during all of these sessions. All the notes in the world didn't seem to help.

It is also a good time to talk about penile rehab. Some uros start early, others don't, but even if he isn't ready for you to be on ED meds, if he plans to start them, go ahead and get the prescription and start filling it now, as most insurance has a pretty brutal limit on how many pills they pay for each month. Best to get started on that discussion.

I leaked so badly I wasn't in much of a conversational mood, and my uro was away, so my removal was uneventful. I got my report a week later than most.

Posted 11/9/2011 10:27 PM (GMT 0)
I can't add anything to what 142 said...He summed it up very well..Best of luck to you...
Posted 11/9/2011 11:11 PM (GMT 0)
Thanks gents, I will post the outcome tomorrow.
Posted 11/9/2011 11:49 PM (GMT 0)
Yes, sorry about the circumstances but glad that you are joining us and sharing your experience.

Best wishes for a speedy recovery from surgery.
Posted 11/9/2011 11:57 PM (GMT 0)
Phil,

Pleased to meet you, you got some good advice already. Good luck, as you continue to recover, and please keep us well posted of your journey.

David in sC
Posted 11/10/2011 12:24 AM (GMT 0)
Phil, when I had that first visit, one question I asked was for the uro to give me as honest an appraisal as he could based on what he had seen during the surgery.  I wanted to know if he thought a recurrence was anywhere in the foreseeable future.

His answer, as I recall it, was that a recurrence can never be ruled out, but that he thought it would be unlikely anytime soon.  That's not a perfect answer, but it did give me some peace of mind. 

He did mention perineural invasion but seemed to say that it's so common that it's hard to consider it predictive of anything, but if your path report show PNI, you might want to talk about and see what your uro has to say.  After I left, I wished I had asked a few questions about that to put my mind at ease.

I hope your visit is as upbeat as mine was.  My wife was in the room, and there were high 5's all around.  It felt so great to be rid of the catheter, so I put on a pad and my wife and I headed out for lunch at the nearest Olive Garden.

142's answers were on the mark.  Best of luck to you, welcome aboard here, and please let  us know how the meeting goes.

Posted 11/10/2011 8:23 AM (GMT 0)
Welcome. And sorry you are here. (I'm also a guy with "big" kids: 22 and 24, and who was diagnosed in his 40s)
You've had good advice. For further tips I guess I'll wait till you report back on what the actual report said. I hope it is good news. And don't be worried if things feel very strange wet and leaky in the first few hours/days after the cath comes out (The actual removal of the cath should not be a bother)
And remember to take things steadily at this stage. Small scars on the outside conceal the fact that there is a lot that needs to heal on the inside.

Alf
Posted 11/10/2011 5:41 PM (GMT 0)
Well just back from my Dr. appt and post op pathology report. I am eager to get everyones option on the results.

Unfortunetely my Dr. was called away so the Phy Asst. reviewed with me with a promise of a phone call from the Dr later today. So.......

No involvement of the Left or Right lymph nodes.

Unremarkable seminal vesicles, uninvolved by tumor

Gleason score remained a 7 (3+4)

7.3% of prostate tissue involved by tumor

All margins looked good except for one. "Tumor involves the distal urethral margin"

Pathologic tumor stage pT2, pN0

In the notes section it states:

1.) "Margins involved by invasive carcinomo: Unifocal and Apical"

2.) "Perineural Invasion: Absent"

3.) "Additional Pathologic findings: High Grade prostatic intraepithelial neoplasia (PIN)" I dont know what this is, can someone share?

I know margin involvement isnt good but to quote the PA, "Its not a home run but it is close" 

Any feed back is appreciated gents!

 

Posted 11/10/2011 7:17 PM (GMT 0)
Sounds okay from where I'm sitting.

Right well the next stage is to do nothing toll you get the first PSA test in a while. That means nothing except tackle the control of your bladder if the cath is out. Do kegels, but don't over do them. Exercise, but little and often. And enjoy the company of your "lovely lady", and I hope she's okay too - I take it you've noticed all the wonderful wives who join in here at HW. Wonderful wives are a godsend!!!

PIN is sort of what cells can be like before they get cancerous, it's usually more relvant in guys who haven't been diagnosed.

I also see the uro's PA a lot, but he has been guiding me throguh this from even before I saw the uro, so he knows more about me than the uro does. Talking to the guy who knows you and to whom you can say stuff is what I find matters, especially when you need to feel comfortable discussing wetting your self or erections or sexual details etc

Check with the doc how big the bad margin is. Is it one area an inch widfwe or one area a millimtere wide, could make a big difference.

Alf
Posted 11/10/2011 7:23 PM (GMT 0)
HGPIN = benign prostatic tissue lined with atypical but non-cancerous cells that have some characteristics in common with cancerous cells; typically thought of as pre-cancerous lesions. (In an effort to be general and non-technical, that leaves out some of the detail, but maybe gives you what you were looking for). My guess is your doc tells you not to worry about the HGPIN. I would ask the doc, when you speak with him, about the extent of the positive margin, and whether he anticipates a need for any further treatment. (He won't know for sure, but you can get his impressions). Best wishes, Medved (not a doctor).
Posted 11/10/2011 7:58 PM (GMT 0)
Welcome to the fraternity. PCa was not what I expected at 61 and I doubt any of us in here expected it until that dreaded diagnosis. I also am a G7 3 +4 and I had 60% tumor involvement in my prostate but it was 100% organ confined with all negative margins and everything else.  I think the key question will be to find out the amount of positive margin you had. Your next step should be a wait and see where your PSA is and if it rises in the future, but I am not a doctor and far from an expert. In th mean time just get healed and  make every day better than the day before.

Also now at your young age is the time to begin working on an aggressive ED rehab treatment.  Discuss if haven't already what your URO will do for any ED problems. There is a series of videos from a DR Mulhall with Sloan Kettering cancer clinic about aggressive ED treatment post surgery for PC . His protocol is relatively new and many URO's like mine are following it now for treatment of ED and blood flow in the penis as early as 3 weeks after surgery. Here is the link to these videos:

http://www.mskcc.org/mskcc/html/94910.cfm

Good luck and and take it easy for another couple of weeks as you heal.

Terry The Water Guy

Posted 11/10/2011 9:11 PM (GMT 0)
Don't be surprised, in a couple of months, you start hearing talk about adjunct radiation treatment "just to clean up any tiny amount of cancer that got left behind..." Some urologists move in that direction quickly and some will wait until a PSA test forces the issue..But there are many men who have posted on this forum that even though they had a small positive margin after surgery, years have passed as they have enjoyed membership in the "zero club"--undetectable PSA scores...Then there are cases like mine where the post-surgery PSA is persistent and salvage treatment starts as soon as the patient is ready for it...Every case is different...For now, focus on recovering from the surgery.
Posted 11/10/2011 9:33 PM (GMT 0)
Thanks everyone for the feedback. this has been helpful. I have heard of the adjunct radiation treatment as well in these cases. My Uro wants the 3 month PSA first and then look at options if needed (fingers crossed it wont be)
Posted 11/10/2011 9:51 PM (GMT 0)
Sounds like good advise..Put all this away for 3 months and enjoy the Holidays...You can't do anything about it so don't worry about it..Work on getting 100% recovered from the surgery...
Posted 11/11/2011 2:12 AM (GMT 0)
Looks like we should start a "diagnosed before 50 group!" Getting to be too many people joining the group so young. Every day is different and you will go through different emotions, each emotion is valid. You have found a great group of guys to turn to for support.
Posted 11/11/2011 1:47 PM (GMT 0)
Susan - interesting idea for a younger guys' group. Someone collected some stats about some ages form dx at HW and the average age at diagnosis here looked much lower than the US average. (I think the average age for PCa diagnosis in the US is something like 72/67 while an unscientific poll suggested that the average at for it at HW is lower, and might be something like 54, but that may have more to do with who goes looking for info on the web!)

see
www.healingwell.com/community/default.aspx?f=35&m=2185655
Alf
Posted 11/11/2011 2:01 PM (GMT 0)
Alf-
That is really eye opening, isn't it. I know it seems like every time I pull up the forum there is someone new under the age of 50 talking about how they just got diagnosed, I don't think the US stats can possibly be correct. Maybe we just get a small sample here, but then think about how many more young guys are being dx every day that we don't have access too. Scary!!

Sorry, didn't mean to hijack the thread!
Posted 11/11/2011 2:35 PM (GMT 0)
Susan

I am sure no one minds - you do bring up a excellent point.

Bud
Posted 11/11/2011 5:46 PM (GMT 0)
Welcome to the group. I have nothing to add that hasn't been discussed. Relax and enjoy the Holidays. Good luck and keep us informed!
Posted 11/11/2011 9:16 PM (GMT 0)
Susan, I noticed the great number of 40-49 year-olds here a while back and mentioned to Ron how lucky we were to have all those extra years of lively sex!  Also, we are talking about our Grandchildren and many of the guys have youngsters at home.  Some of their issues may indeed be different.

Good luck, Phil!  This is a great support group.

Latest on Ron: He now is taking high blood pressure pills, and needs some blood work done for his liver.

Hello to all!

Aimzee

Posted 12/1/2011 7:31 PM (GMT 0)

Hello everyone,

I wanted to share my progress after my RALP. It will be 1 month this Saturday since the procedure and I am very happy to say that all is going well. I only experienced a little incontinence the first day or so after the catheter removal and still the occasional leak if I cough or sneeze. I have been keep up with the kegels so hopefully that will stop as well. The Dr. put me on 5mg Cialis (daily) the day the catheter came out and almost immediately it started to work. My wife and I are both very happy! blush Terry, I reviewed the link you provided on ED and it appears that the treatment suggested by Dr. Mulhall is even more aggressive. Any opinions on talking to my Uro about upping the dosage or should we just leave well enough alone? If I heard him correctly, He did mention that +/-4 months post op is the critical low point for nerve recovery? My one month follow-up is tomorrow. I will post anything significant. As always, thanks for listening and I hope this message finds you all doing well.

Phil  

Posted 12/1/2011 9:27 PM (GMT 0)

Susan R said...
Looks like we should start a "diagnosed before 50 group!" Getting to be too many people joining the group so young.

 

 

You got that right !!!!

 

Posted 12/1/2011 9:57 PM (GMT 0)
Phil - about the Cialis. I am also on the daily 5mg program. My uro/surgeon allows that I can take a 10mg or 20mg, but if so, don't take the 5mg for that day or the next. The 20mg should be less times a week (3 at max, he advises), obviously. Same said for Levitra and Viagra - trying one of those, I was told to skip the 5mg Cialis for a couple of days after.

And with Trimix, no doubling up. No C/L/V on the same day as a Trimix shot.

All of those warnings to keep you from having to head out to the ER for a willie-reduction after 4 hours.

Mulhall would have you on larger doses more often, but I would check that with your uro first. He'll be the one they call from the ER, so best have no surprises.

Posted 12/1/2011 10:44 PM (GMT 0)
Phil,

In additional to all the other great advice, all I can add is that you still need to be wary of periods of depression.

Between my diagnosis and the surgery I expected it, and understood it for what it was. By they time I hit my 3 month checkup I was feeling great, zero PSA and I had more energy than I've had in years. I thought I was through with the depression but since then I've gone through a couple of periods when I just I slipped into a funk for a few weeks for no obvious reason (although I assume it's ED related). From what I've read it's not uncommon among cancer survivors.

 

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