need some advice

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Retire1965
Regular Member


Date Joined Jul 2010
Total Posts : 38
   Posted 8/20/2010 9:20 AM (GMT -6)   
Folks:
 
I need a little advice from the folks who have lived throught this frustrating experience that is PCA.  I am 45 years old.
 
My story:
 
1.  I had prostatitus in the fall of last year.  Getting rid of the infection was a struggle.  I spent some time in the ER getting catheters inserted and removed.
 
2.  Once the infection went away and I had no more symptoms of infection my urologist gave me a psa screen.   The result as a 12.  The infection had been cleared up about a month at that point.
 
3.   My urologist did a biopsy in November of last year and fund one core out of 12 with a gleason 6 result.  The one core was 15% cancerous.
 
3.  I then spoke to an oncologist who recommended that I wait a little while to see if my psa results continued to be inflated due to residual infection.  She was hoping the follow up psa would be close to normal (say a 3 or below) and we could do active surveillance for a while)  At the time of my meeting with her my psa was a 10.5.  The meeting was in January of this year.
 
5.In May of this year I had a follow up psa screen and the result was 15.5  I immediately met with my oncologist and a leading surgeon and decided to go forward with an RP. There had been no sign of infection for over six months and my psa remained clearly elevated with a positive biopsy.
 
6.  When I met with the oncologist she did recommend surgery and I mentioned that I agreed with her recommendation but that the decision was really made on the basis of the psa result so I asked for a follow up psa (July of this year)
 
7.  The follow up psa was a 6.5.  This result bothered me because is was a such a huge drop.
 
8.   Yesterday I got another psa and the result was a 5.0
 
My surgery is scheduled for September 20th.  Has anyone else experienced this type of wide range of results before their surgery.  My only concern is that I do not want to have surgery and find indolent cancer.  Im guessing the result discrepancies are due to different labs etc.  I just wish I knew my baseline before surgery.  If I didnt know I had cancer, I would think I had a long term infection that was fading away.
 
As long as it is significant, I am happy to go through the surgical process even with possible side effects.  I am too young to take chances'  Maybe that is an unrealistic goal.
 
Any advice is welcome, especially from men with similiar experiences.
 
Retire1965
 
 

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 8/20/2010 9:39 AM (GMT -6)   
You already KNOW you have cancer. You are 45 years old. At some point you will have to treat it. At THIS POINT, surgery is probably your best option..

However, if your insurance will cover it or you are in a position to cover it, you can travel to a treatment center that offers "Color Doppler Ultrasound" plus other high-tech and high-cost imaging services and get a much better idea just how dangerous your cancer is.

Poke around on this board as there are many discussions on this subject. Look for threads by "Lucky-Penny" and John T
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third 12 core biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..

Kongo
Regular Member


Date Joined May 2010
Total Posts : 36
   Posted 8/20/2010 1:41 PM (GMT -6)   
Retire,

My PSA dropped from 4.3 at Dx to 2.8 just before treatment after I eliminated dairy from my diet. It does give you pause. Although older than you I had a similar pathology after biopsy but wanted nothing to do with surgery. Hope you have meet with some radiologists and get their opinion besides the ones who have advised the surgical route. In any event best of luck to you as you go forward.
============================
Age:  59
Dx:  March 2010
PSA @ Dx:  4.3 (Latest PSA = 2.8 after elimination of dairy)
Gleason:  3+3=6 (confirmed by second pathologist)
Biopsy:  1 of 12 cores contained adenocarcinoma at 15% involvement and no evidence of perineural invasion
DRE: Normal
Stage:  T1c
Bone scan and chest x-rays:  Negative
Prostate Volume: 47 cc
PSA Velocity:  0.19 ng/ml/yr
PSA Density:  0.092 ng/ml/ccm
PSA Doubling Time:  > 10 Years
Treatment Decision:  CyberKnife radiation treatment in June 2010.  Side effects:  None
 
 
 

Retire1965
Regular Member


Date Joined Jul 2010
Total Posts : 38
   Posted 8/21/2010 11:01 PM (GMT -6)   
Guys,
 
Thanks very much for the advice.
 
I appreciate it very much.
 
Retire

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 8/22/2010 7:57 AM (GMT -6)   
RETIRE -
do you have a family history of breast cancer or prostate cancer in your family
- even though I am a surgery guy - seeing your biopsy being 1 of 12- gleason 6- maybe RT - radiation therapy might be an alternative option
- I would recommend you have another PSA and Free PSA done - remember - no sex, DRE, bicycles, ********** - motorcycles, etc - anything that could elevate the PSA reading for 2-3 days before.
- my biopsy included an ultrasound to pinpoint where he took the samples ( 6 of 12 -gleason 7)...
-keep researching
-all the best
BROSNON
Age: 54 -gay with spouse, Steve - live in Peteborough, Ontario, Canada
PSA: 10/06/2009 - 3.86
Biopsy: 10/16/2009- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/2009
Pathology: pT3a- gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
Post Surgery-PSA: April 8, 2010 - 0.05 -I am in the ZERO CLUB - hooorah!
Next PSA: October 8, 2010 -TBA

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 8/22/2010 11:01 AM (GMT -6)   
Retire,
The variation in psa is not due to the labs, but most likely due to the infection. A small Gleason 6 would never generate that much psa and a psa of 3 to 5 is much more likely.
It could very well be indolant cancer and the probability is over 50% that it is. It is your choice to have surgery, but it would also be a prudent choice to wait and see if your psa stabalizes in a low range. If It were rising that would be a problem, but as long as it is dropping or stable you have very little risk in waiting.
Also read "Invasion of the Prostate Snatchers" by Dr Mark Scholz to learn about indolant vs agressive PC.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1152
   Posted 8/23/2010 9:51 AM (GMT -6)   
Retire,

My husband's biopsy stats are around the same as yours. 10% of one core, gleason 3+3.
He just had a radical prostetectomy and his actual post-surgical gleason score was 3+4. Although they were small there were 7 focal areas of cancer. Biopsies frequently get upgraded, as his did.

Go to the sloan kettering nonogram and see how small your chances of actually having indolent cancer are. Although you do have time to pondor treatment options I would not wait to have your PSA score stabalise, you don't know how long that would take. The bottom line is that you are young at 45 and you know you have prostate cancer. The biopsy trumps the PSA score. The PSA score could tell you how fast your cancer is growing but when there is a combination of factors such as prostatitis and BPH and pca it is difficult to work out what exactly is happening and in my opinion not worth the time you lose.

An
Husband's age: 52. We live in Sydney Australia.
Family history:
Maternal grandfather died of prostate cancer at 72. Maternal uncle died of prostate cancer at 60. Because he is the third generation to be diagnosed he has hereditary PC.
PSA history:
Aug07 - 2.5|Feb08 - 1.7|Oct09 - 3.67 (free PSA ratio 27%)|Feb10 - 4.03 (free PSA ratio 31%) |Jun10 - 2.69
DRE normal
Biopsy 28/4/2010: results, negative for a diagnosis of PC however 3 focal ASAPs “ suspicious but not diagnostic for prostatic adenocarcinoma."
Review of biopsy by experienced pathologist, results,
1 out of 12 core diagnosed with 10% of Gleason score 3+3 cancer (left transitional)
1 out of 12 cores with ASAP (left apex), suspicious but not diagnostic of cancer

Nerve sparing RP on 20th August 2010 at St Vincent’s with Dr Stricker.
Post-op pathology
Final Gleason score: 3+4
Margin involvement: Nil
Extraprostatic extension: Nil
Multifocal, with involvement in the Peripheral, apex, fibro-muscular and transitional zones.

proscapt
Veteran Member


Date Joined Aug 2010
Total Posts : 644
   Posted 8/23/2010 10:53 AM (GMT -6)   
Have you gone for a second opinion by a leading doc at one of the top cancer treatment centers? If not, I'd encourage it.

With only one core positive, and a G6, you don't have to rush - particularly with a dropping PSA.

That said, keep a close eye on it. The younger you are, and the better your health, and the earlier you get it, the better the chance of having a bilateral nerve sparing surgery (if you go that route) , giving you a better chance of a "trifecta" recovery of cancer control, urinary control, and good erections.
DX 10/2009
Robotic assisted RP 2/2010
Pathology: pT2c / Gleeson 3+4 / margins neg. / seminal ves neg. / capsule confined /
PSA - Pre-op 5.6 / last post-op 0.01

Retire1965
Regular Member


Date Joined Jul 2010
Total Posts : 38
   Posted 8/24/2010 3:26 AM (GMT -6)   
Folks,
 
Thanks so much for the advice.  I realize everyone has different perspectives.  I was still struggling even though my RP was scheduled.
 
However, I am now committed to having the RP on 9/20 unless I get advice from my surgeon to the contrary.  The sloan kettering nonograms are enormously helpful because they provide an objective view of where I stand.  I do believe the odds are low that my cancer is indolent.  I have read of or spoken to quite a few men whose cancer grade was upgraded post surgery.
 
I have spoken to an oncologist and surgeon at a major medical center in Boston.  They recommended surgery as my psa was peaking and are not softening on the advice yet.
 
I do respect the perspective that this is probably (emphasis on probably) a small cancer but that is a gift that increases the odds of a good outcome from surgery.  I'd hate to squander the opportunity my relatively good biopsy/psa results provide.  I cant predict the future and have to make the best decision I can.
 
Finally, the dropping psa is confusing and frustrating but while it was happening I was not sick and felt great.  I have to think it was somewhat related to the pca.  Any rapid changes therefore make me more uncomfortable not less uncomfortable.
 
An38's input was particularly helpful because she provided an example of an outcome I might expect.  I am sure she is very happy they made the decision they made.
 
I also completely respect the folks who are not great fans of surgery as a treatment option. 
 
Retire1965
 
 
 
 

cooper360
Regular Member


Date Joined Jul 2010
Total Posts : 161
   Posted 8/24/2010 8:37 AM (GMT -6)   
I wasn't going to post ,buuuut I will! If you can get a color doppler by Dr Lee in MI or Dr Bahn in Ca I would! I agree with JohnT,you have time to seek out other opinions! I tend to think its lingering infection and I'd wait a bit to see if psa it stabilises! Surgery doesn't sound like fun unless absolutely necessary. Look for post by Volunteer [might be on other forum], he just went for color doppler and is awaiting results,good or bad this seems to be a prudent course to take because Dr can see better what you might be dealing with! Just my opinion,for what its worth.....

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 8/24/2010 9:28 AM (GMT -6)   
Since you already know you have cancer, spending more money on fancy ultrasounds will not resolve anything..That money might be better spent by having your biopsy slides reviewed by an expert laboratory who are better able to judge the status of low-grade cancers..
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third 12 core biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..

cooper360
Regular Member


Date Joined Jul 2010
Total Posts : 161
   Posted 8/24/2010 10:09 AM (GMT -6)   
I agree having the slides looked at is right,also CDU I'd rather spend the money ahead of time than spend it later on pee pads, & pumps etc... that maybe I didn't really need to !!!!

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 8/24/2010 6:10 PM (GMT -6)   
Based on your age, probably surgery will be recommended by many doctors. Also based on your age, you most likely will have success in dealing with incontinence and ED.

I just want to make sure you really do understand those side effects, which occur in 40 % or so of most surgeries. At age 60 ED is probably more tolerable than 45. With your low grade, and low number of cores, I would say you should at least investigate Brachy as well.

Good luck on your journey, and welcome to HW.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1152
   Posted 8/24/2010 10:45 PM (GMT -6)   
Having your biopsy slides rechecked is a very good idea. There are several laboratories including Bostwick in the US that have been recommended by people in this forum and it is definately worth it.

We did not have easy access to these laboratories but we made sure that the most experienced pathologist in Australia in the area of prostate cancer re-examined the slides.

It is really really important to understand what you are getting into with surgery including the potential for incontinance and impotance. It is very important to pick the best surgeon you can find as the experience of the surgeon will be crucial in how you come out of the surgery. He/she should have done at least 300 surgeries with the technique that he/she will use on you and must have a good reputation. Most good surgeons have very good incontinence stats (our surgeon's published stats for robotic surgery are 98% continent (not requiring pads) by the end of the first year). The ED numbers tend to be not as good but tend to be the best in patients in their 40s.
 
There is time between now and the 20th of September to get your pathology slides reviewed and to research and meet up with another surgeon, if there are any question marks about your surgeon's experience or stats. 
 
It's not really fair that at the age of 45 that you are considering such difficult things. This is not a black and white situation and the solution you go for, whatever it is, needs to feel right to you.

An
Husband's age: 52. We live in Sydney Australia.
Family history:
Maternal grandfather died of prostate cancer at 72. Maternal uncle died of prostate cancer at 60. Because he is the third generation to be diagnosed he has hereditary PC.
PSA history:
Aug07 - 2.5|Feb08 - 1.7|Oct09 - 3.67 (free PSA ratio 27%)|Feb10 - 4.03 (free PSA ratio 31%) |Jun10 - 2.69
DRE normal
Biopsy 28/4/2010: results, negative for a diagnosis of PC however 3 focal ASAPs “ suspicious but not diagnostic for prostatic adenocarcinoma."
Review of biopsy by experienced pathologist, results,
1 out of 12 core diagnosed with 10% of Gleason score 3+3 cancer (left transitional)
1 out of 12 cores with ASAP (left apex), suspicious but not diagnostic of cancer

Nerve sparing RP on 20th August 2010 at St Vincent’s with Dr Stricker.
Post-op pathology
Final Gleason score: 3+4
Margin involvement: Nil
Extraprostatic extension: Nil
Multifocal, with involvement in the Peripheral, apex, fibro-muscular and transitional zones.

Post Edited (An38) : 8/24/2010 10:56:44 PM (GMT-6)


Retire1965
Regular Member


Date Joined Jul 2010
Total Posts : 38
   Posted 8/25/2010 10:22 PM (GMT -6)   
Hi Folks:

Didnt mean to insinuate that I had not been "around the block". My urologist who diagnosed me, an oncologist at Dana Farber and the surgeon I picked are on the same page on my diagnosis and treatment plan. The surgeon I chose has done thousands of these surgury's and I have spoken to two of his prostate cancer patients post surgery. To say they raved about his surgical abilities is an understatement.

I think Gleason 6 is intermediate grade. Gleason 7 will do real damage and with my psa history, nothing says there is not some in my prostate.

I do like the idea of confirming my biopsy results once again. They were looked at by one major hospital in boston and sent to another. For the second viewing, nobody actually said they had looked at the tissue and concurred (I just assumed). I will follow up on that.

Thanks again for all the advice. Keep up the debate as it does make me think which is critical right now.

Mike

Retire1965
Regular Member


Date Joined Jul 2010
Total Posts : 38
   Posted 8/26/2010 8:36 PM (GMT -6)   
Folks:
 
I am also going to read "Invasion of the Prostate Snatchers".  Cant be closed minded in our situation.
 
By the way, there is no sign of prostate cancer in my family.
 
Retire

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1152
   Posted 8/26/2010 9:26 PM (GMT -6)   
Retire,

It's a great idea to read the book that John suggested. Being open minded is very important and unless you explore this issue from all angles it is very difficult to be comfortable with your decisions.

It seems from my research that the main result of having hereditary prostate cancer is the greater likelihood of being diagnosed at a younger age, on average about 8 years earlier than the average. 43% of the people diagnosed with prostate cancer under the age of 55 will be people with this rare genetic varient (auto sonomal dominant). It looks very much like my husband has this rare varient but you do not. Once diagnosed, the actual cancer is not more or less aggressive than anyone being diagnosed at that age with or without the varient.  A key issue for my husband though is the psychological stress of having relatives in two generations prior to him die of the disease and they most likely died because they got their cancer early in their life and it wasn't dealt with until it was too late.

An

Post Edited (An38) : 8/26/2010 8:53:12 PM (GMT-6)

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