After 6 weeks of worry I found out I have PIN

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

cmaher55
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 1/10/2009 2:19 PM (GMT -6)   
Age 47, no problems, went for routine physical check up to primary Doctor. No history of Pca in males in my family.  
November 2008 primary care Doctor DRE found "firm on one side", PSA was 3.9.
December 2, 2008 Urologist says watch and wait or Biopsy? I chose Biopsy.
December 29, 2008 Biopsy performed (Christmas was not fun...!) Dr. said I have a 33 cubic cm prostate but it should be around 20 cubic cm.  TRUS found no dark spots. Found out Jan. 9, 2009 I have PIN.
 
Folks, I was really worried these last 6 to 8 weeks but I guess I got not great news but good news yesterday.  Doctor said no prostate cancer but that I do have PIN.  He said not a big deal if your 77 but at 47 I'll have to be watched.  So I'll get a PSA every 6 months and visit the Urologist for a checkup.  After having my first prostate biopsy I can say I am not a big fan of that procedure but it looks like I may have to get more down the road.  I guess the "silver lining" is that if I do get Pca they will catch it really early.  The Dr. said as much as 50% of PIN can turn into Pca later.  I also read that by age 50 about 50% of males have some kind of PIN.  I guess I'd like to say to others reading here there is hope when you are diagnosed with an abnormal DRE and a slightly high PSA that it can be things other than Pca.  Hang in there all of you.  Regards, Chris

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/10/2009 2:34 PM (GMT -6)   
Hey Chris, there is PIN and High grade PIN. Get the actual copy of your records, don't fully trust anybody, trust but verify. Who did the pathology? Maybe demand your pathology get reviewed by experts like Bostwick, Oppenheimer or Epstein even if (your uro-doc) is offended by your request, who cares. He will tell you his pathologist is great...yada...yada...and might even be so. Trust but verify. I have heard stories on patients that would make you change your mindset. Pathology is an art and only a hand full of artists in the USA may exist, pay for the stupid additional fee to actually know what you are looking at. The uro-doc has nice intentions, he is dumb compared to the experts on pathology.
 
Not trying to scare you, just the facts. You probably have nothing to worry about at this time, so don't over worry either. If it is not High grade PIN, just PIN that is alittle more comfortable to know. Yes they can change at some juncture and it could be years and years.

www.prostate-help.org (find pathology and read it now, please for your own sake)


"Youth is wasted on the young"-W.C. Fields
 
"I wouldn't join a club that would have me as a member"-Groucho Marx

Post Edited (zufus) : 1/10/2009 12:39:14 PM (GMT-7)


cmaher55
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 1/10/2009 3:12 PM (GMT -6)   
Hey zufus, I am not worried about my Dr. or the Pathologist.  I go to a very good place where people travel from all over the area to go to.  I work in the medical field (I make oncology drugs, rhuMabs) so I know a little bit more than the average bear.  I guess you could get your prostate poked every month until you get the results you want but in the meantime the stress will kill you before Pca ever does...!  I trust my Doctor and the Pathologists findings and I'll deal with it in 6 months when I go back.  Time to get on with living life and not to worry yourself to death about a walnut sized gland that could kill you maybe in 20 years if you do nothing.  So down the road PIN can turn to Pca but not always.....  If someone like me has PIN then they are being watched closely and if they find anything down the road they have caught it early and treatment is available.  Prostate cancer now kills almost no one these days and that is a direct quote from a Doctor I know.  Don't worry, relax, be watched, and be happy...!  Chris

divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 1/10/2009 5:35 PM (GMT -6)   
Dear Cmaher55, You wrote: "'Prostate cancer now kills almost no one these days and that is a direct quote from a Doctor I know. '" Where does this doctor have his head......Maybe his prostate? Di
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Forging ahead to health!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/10/2009 5:45 PM (GMT -6)   
Chris, welcome to our clan, glad at this point you don't have PC. A doctor really aid PC kills almost no one these days? What about the 25,000 and higher that die every year because of it? Who is trying to fool who?
From what was advise above, I agree, there is a lot of difference between PIN and High Grade Pin. The HG PIN is more like to cross the line. At my first biopsy in 8/7, no PC, but areas of HG PIN. By my 3rd biopsy, in 9/8, was dx. with Gleason 7 PC. So in my case, it changed over fast. I think you are right for keeping a close eye on it, and doing extra PSA tests and biopsy if needed sounds like a good plan. Please stay in touch here, great bunch of people.

David in SC
Age 56, 56 at DX
PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4
3rd Biopsy 9-2008 Positive 7 of 7 cores positive, ranging from 40 - 90%, G 4+3 & 3+4
Open RP surgery  November 14, 2008 at St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon, Non-nerve sparing, 4 days in hospital, staples removed 11/24/8, Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08.  After 7 hours, complete stoppage again, emergency room put in Catheter #3 early evening of day 45, still 12/29/08. 1/5/9 - Cath #3 out, dr. did cycloscope, saw potential blockage, put in Catheter #4, 1/9/9 - pre-op, 1/13/9 - corrective operation scheduled at St. Francis
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes.
First PSA Post Surgery  Scheduled now for 2/9/9
 
 


cmaher55
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 1/10/2009 6:08 PM (GMT -6)   
Di, I'm just going by what I have heard and read so far. A doctor friend in Canada told me that yesterday.  I have also read that 1 in 35 who get Pca will actually die of it.  I think that most of us who have gravitated here have more advanced situations to deal with or are just the kind of people who have to know what is going on.  My thoughts and prayers go out to you and I hope your husbands recovery from hip surgery goes well.  My wife actually has to have hip surgery in two weeks.  We're both 47, she has a bad hip and I have PIN.  We're both gonna take care of ourselves and keep going for our kids and each other...!   Regards, Chris

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 1/10/2009 10:46 PM (GMT -6)   
Welcome to the site Chris even though you do not have PCa please feel free to hang around. Keep living my friend and keep a close eye on that prostate.

peace to you
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .06
Testosterone keeps rising, the current number is 156, up from 57 in May
cancer in 4 of 6 cores
92%
80%
37%
28%
 


skapod
Regular Member


Date Joined Nov 2008
Total Posts : 35
   Posted 1/10/2009 10:50 PM (GMT -6)   
Question...what is PIN?  My husband has Pca  but we've never heard of PIN.

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 1/10/2009 10:56 PM (GMT -6)   
here is the best description I could find.
http://www.phoenix5.org/Infolink/PIN.html

Hope that helps
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .06
Testosterone keeps rising, the current number is 156, up from 57 in May
cancer in 4 of 6 cores
92%
80%
37%
28%
 


cmaher55
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 1/10/2009 11:03 PM (GMT -6)   
Hey skapod, PIN is a condition where you have atypical cells in your prostate but technically not cancer.  The cells are in place but not like the typical cells.  It is generally understood to be a pre cancerous condition.  At age 50, 50% of men have PIN.  If you have PIN the doctors need to watch you closely every 6 months I think.  The good thing is I guess if you have PIN is that you are being watched and they can catch anything early if if happens.  Not all PIN goes to Pca from what I understand, up to 50% possibly the doctor told me.  I'd rather not have it but it makes me aware that I need to get a PSA every 6 months and maybe a biopsy every year to keep an eye on things. I think a lot of men go through life with PIN and don't even know it unless it progresses later in life.  Regards, Chris

divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 1/11/2009 8:25 AM (GMT -6)   
From what I understand there is very slow growing and then faster growing and then very agressive growing. Several strains of different speeds..The doubling time is what determines whether it is slow or agressive..But it can start slow and then become agressive, but it rarely begins agressive and turns slow again. Am I right? For example, Im looking at Selmer's PSA It has taken almost seven years to go 1 point... So that is very slow.....While, Pete's was .5 after radiation, stayed that way for about 4 years, and then began a fast rise to 8. in four months....So that is why we tried the salvage surgery..The doctor said to get it out and debulk the tumor.....Even though he has lots of side effects, it did take the PSA back to .02.....however, now it is beginning a rise again,.. .52 last May and .6 in December.....but it is still a very slow rise, and could even be a lab issue.... What do you think?

By the way, if you didnt see the post about his hip surgery on Friday....It turned out great.....a six to eight week recovery with a walker, but he will be able to walk again! This all happening to a guy who used to go to South America to fish! It has been very sobering, and like Swim says...You have to stand back and give Mother Nature her way sometimes... Di
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Forging ahead to health!


smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 1/11/2009 8:27 PM (GMT -6)   

Chris,

Welcome.

I had my first biopsy in 1998 (only results I know is negative) and the second in 2000 with PIN.  I had no thought of what it meant as the results said no PCa. Well in 2004 my Uro stated he would order a biopsy if he did know I had had one in 2000 so no Biopsy.  then in Jan 2008 bispsy showed positive with Gleason Score of 10. MD Anderson stated the PCa had probably been there all the time and just not found.

Example: stick a knitting needle into a loaf of raisen bread and you dont pull our a raisen then it aint raisen bread. That is what a biopsy is like.

Stay on top of your situation and do close monitoring. You are you own best advocate

Richard

 


Biospy 1/10/08 Gleason 10, Stage T1C 8 of 12 samples positive all Less Than 5%
Bone Scan, CTs and MRI Negative early 2008
March 2008 MD Anderson - No Surgery or Proton
Feb & Mar PET (Possilbe Lymph Nodnte Involvme & Prostacint Scan Negative
March 2008 U of Florida Proton Therapty Lupron & Casodek May 08 for 2 years
Completed 25 IMRT and 17 PBRT U of Florida Proton Therapy Institute 7/24/08
Latest CT June 08) showed no trace of tumor in lymph node area
7/24/2008 PSA .21, free PSA .08, Percent free PSA 38.1, testosterone 14.6
8/1/2008 2nd Lupon Shot
10/27/2008 PSA <.1
12/9/2008 3rd Lupon Shot
12/11/08 MRI Suspicious for Metastic disease L5 & S1
Bone Scan 12/19/08 Indicates No Bone Mets
Our Journey is on WWW.GLEASONSCORE10.COM

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, July 16, 2018 9:51 AM (GMT -6)
There are a total of 2,981,977 posts in 326,950 threads.
View Active Threads


Who's Online
This forum has 161802 registered members. Please welcome our newest member, Guadalahonky.
421 Guest(s), 9 Registered Member(s) are currently online.  Details
DBwithUC, Lendi, island time, jl6, cppoly, borborygmi, Dogmom03, straydog, iPoop