Newly Diagnosed with PC need advise

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dgabre
New Member


Date Joined Nov 2010
Total Posts : 4
   Posted 11/11/2010 3:48 PM (GMT -6)   
I am 75 years old and have been taking proscar for over 10 years and my PSA was 4.6 when I started taking it and in March 2009 it went up to 5.0 and October of 2009 it shot up to 6.4 and in September 2010 was 8.2. So my doctor ordered a biopsy and the result came yesterday and out of the 14 samples 13 of them had either 4+4 or 4+5 score and my doctor basically said I had a Gleason score of 9. A couple of days before my biopsy, my DRE was normal done by an intern so I am not confident of the result. So my doctor said it's pretty aggressive cancer so he ordered a CT Abdomen and Pelvis as well as NM Bone Scan Whole Body to see if the cancer has started spreading. When I asked him what the clinical stage of my PC he said T3c which is contradicting with my DRE that was done prior to the biopsy. So in any case I think what will be important is what they find on CT and bone scan. But here are my questions:

- Does anyone have experience on the chance of the PC spreading outside of the prostate for someone with a high Gleason score of 9 as mine and by how much ? I know there won't be a straight answer but just need to know what people's experiences are.

- If the PC spreads outside of the prostate what is the best treatment or treatments that seem to be successful?

- Is it worth for me to get a 2nd opinion on my biopsy results.. I guess if my test tomorrow shows the cancer has spread there isn't any point or is there ?

- My doctor is against surgery for anyone over 70 years.. I am pretty healthy except high blood pressure and gout I don't have any serious illness so is it wrong for me to consider surgery in case I find out the PC is contained within the prostate ?

Any other advise is also welcomed.. I am kind of overwhelmed with all the education I am doing to know all I can about PC.

Thank You
10/1/09 PSA 6.4
10/5/10 PSA 8.2
11/2/10 Biopsy Gleason Score 9

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/11/2010 4:45 PM (GMT -6)   
dg,
Welcome and sorry for the need for us.

I can answer some of these from my personal experience with prostate cancer. I am a Gleason 4+3 stage 3B (same as T3C since the staging manual was updated in 2002 ~ many doctors still use the older manual for staging) patient. I had 4 of 8 cores positive. Surgery showed that prostate cancer had indeed escaped the prostate.

With your diagnosis you will likely undergo a systemic treatment as opposed to a local treatment. Hormone therapy is a good first step. At that point it might be determined that a local therapy such as radiation might be a good next step. Your doctor is probably spot on for skipping the surgery because you had a very high percentage of cores positive and surgery will still need to be just one step of the process.

Feel free to ask any questions. Welcome again...

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3887
   Posted 11/11/2010 4:52 PM (GMT -6)   
Okay..if you are on proscar and your PSA is 8.2 then your actual PSA will be around 16..

13 out of 14 with G-9 is about as bad as it gets..No need for a second opinion on the pathology. The bone scans and such seldom show anything at this stage even if the cancer has spread. I don't know why they do it with a PSA under 50 and no symptoms (bone pain) reported..But they always do it..

You are considered a "high-risk" patient and since radiation is almost certainly a part of your future treatment, you might as well skip the surgery and its side-effects and risks.

Get yourself a copy of Dr, Walsh's book 'Surviving Prostate Cancer" and learn what you are facing.. Take a look at my history, we are in the same boat brother..
Age 68.
PSA at age 55: 3.5, DRE normal. Advice, "Keep an eye on it".
age 58: 4.5
age 61: 5.2
age 64: 7.5, DRE "Abnormal"
age 65: 8.5, " normal", biopsy, 12 core, negative...
age 66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
age 67 4.5 DRE "normal"
age 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/11/2010 5:04 PM (GMT -6)   
Just a note:
Fairwind states that your case is about as bad as it gets. This isn't true. We have had quite a few Gleason 10 guys here with all cores positive. And to the best of my knowledge all are still around to talk about it.

The book Fairwind recommends is a great read but I would also recommend Snuffy Myers book "Beating Prostate Cancer:Hormonal Therapy and Diet". Myers deals mostly with advanced cases. Another book by Stephen Strum "A primer for Prostate Cancer" will help you chart your own path.

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 11/11/2010 5:07 PM (GMT -6)   

Hi dgabre, and welcome.  I’ll start the ball rolling with some responses.  I can only offer some indirect inputs because I did not deal with the aggressive PC that a 4+4 or 4+5 Gleason score indicates, and plus (of course) I am not a doctor…but hopefully my comments will be helpful anyhow.

 

Firstly, perhaps you already know this, but keep in mind that Proscar artificially lowers one’s PSA result by about 50%.  If you were on Proscar for 10-years and in Sep-10 your PSA test result was 8.2, you should likely figure it to really be twice that high.

 

Secondly, be aware that the scans your doctor ordered can result in “false negative” results.  That is, it takes considerable amount of PC spread for it to show up on a bone scan.  While of course it varies person-to-person, I’ve read that your typical positive bone scan result will come from a man already experiencing bone pain, and with a PSA of 3-digits (>100 ng/mL).  Just be aware of “false negatives.”

 

You asked “Does anyone have experience on the chance of the PC spreading outside of the prostate for someone with a high Gleason score of 9.  Someone else posted a link with an interesting chart that sorta answers your question.  It addresses a slightly different question:  How likely is PSA recurrence after surgery based on the % of Gleason 4/5 cores.  You had 12/13, or 92%.  The likelihood is high; check this link:   http://www.jcojournal.org/content/23/13/2911/F1.expansion.html   What this means is that surgery alone wouldn’t likely cure it.

 

If PC is known or likely to have spread outside the prostate, most surgeons would tell you to seek other treatments (with the exception of a multi-modal treatment plan which includes de-bulking the prostate).  The big question on spread is whether it is “local” or “distant.”  I won’t embellish excessively about these differences at this point, but these are terms for you to begin to familiarize yourself with.

 

Having been on Proscar for 10-years, you aren’t entirely a noobie in this area.  Do you have any of the key reference books on Prostate Cancer?  I might suggest “A Primer on Prostate Cancer—The Empowered Patient’s Guide” by Dr Stephen Strum and Donna Pogliano.  It has a long section on hormone therapy, and has two graphs of success with triple blockade, including one that is specifically for men prior to surgery, prior to radiation, or both.

 
Hope this helps...

 

--------------------------------

added later as edit:  I started my post with "I’ll start the ball rolling with some responses", but by the time I finished and hit "Submit", a couple other guys provided some other excellent responses.  Add mine to your inputs... 

Post Edited (Casey59) : 11/11/2010 3:12:08 PM (GMT-7)


daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 11/11/2010 6:10 PM (GMT -6)   
dgabre,
Sorry you're here, as to the DRE, my GP did one at my last exam and said "normal" my PSA test from that exam came in at 6.5 and I was referred to a urologist who within seconds said "1.5cm tumor on the left side". Just goes to show you what experienced fingers can do I guess, I wouldn't put too much faith in the DRE done by an intern.

As to the G-9, that was my initial score after the pathologist looked at the slides, it was later downgraded to 8 with tertiary 5. As to treatment paths that is the tough choice. I decided on a RP more to reduce the tumor load rather than a shooting for a sure cure, so far it looks hopeful but nothing is sure with this disease. At your age you might want to try something less invasive, a choice for you and your doctors. A consult with an oncologist specializing in PCa might be a good investment. I do have to say that at your age I would not have done surgery.

From reading the paths of others it does seem that the chances for a normal life span are good. Yananow is a good site for checking out some of the long term high Gleason survivors stories.


www.yananow.net/Links.html

Best of luck to you and again sorry you have to be here.
Diagnosed 12-09 age 55
07-06 PSA 2.5
01-08 PSA 5.5 (PCP did not tell me of increase or schedule follow-up!!!!)
09-09 PSA 6.5 Sent for consult with Urologist
11-09 Consult, scheduled for biopsy, found out about PSA from '08 (yes I was pissed)
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5, ain't much but I'll take it.
01-10 Bone Scan, "appears negative"
03-01-10 RRP in Durango CO by Dr Sejal Quale and Dr Shandra Wilson, no naked eye evidence of spread, Vesicles and lymph nodes taken for microscopic exam.

03-16-10 Removal of cath' and pathology results of samples.
Multifocal carcinoma with areas of Gleason pattern 3, 4 and 5, Overall Gleason grade 4+4 with tertiary 5, Bilateral involving 21% of left lobe, 3% of right lobe, Invasion of left Seminal vesicle, Tumor focally present at left resection margin, 9 lymph nodes removed all negative, Tumor staging pT3b NO MX

04-23-10 PSA <0.04....... 06-07-10 PSA <0.04..... 08-03-10 <0.04
05-03-10 1 week without pads
06-28-10 ;-)

dgabre
New Member


Date Joined Nov 2010
Total Posts : 4
   Posted 11/11/2010 8:42 PM (GMT -6)   
Greatly appreciate everyones input and kind advise. Still trying to absorb all the information I come across. Will report back with results of CT scan of abdomen and pelvis as well as Bone scan.. wish me luck !

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1152
   Posted 11/12/2010 8:30 AM (GMT -6)   
Good Luck dgabre with your scans. Wish you all the best,

An
Husband's age: 52. Sydney Australia.
Family history: Mat. grandfather died of PC at 72. Mat. uncle died of PC at 60. He has hereditary PC.
PSA: Aug07 - 2.5|Feb08 - 1.7|Oct09 - 3.67 (free PSA 27%)|Feb10 - 4.03 (free PSA 31%) |Jun10 - 2.69. DRE normal.
Biopsy 28Apr10: negative for a diagnosis of PC however 3 focal ASAPs “atypical, suspicious but not diagnostic” for PC. Review of biopsy by experienced pathologist, 1/12 core: 10% 3+3 (left transitional), 1/12 core: ASAP (left apex)
Nerve sparing RP, 20Aug10 with Dr Stricker. Post-op path: 3+4 (ISUP 2005). Neg margins, seminal vesicles, extraprostatic extension. Multifocal, with involvement in the peripheral, apex, fibro-muscular and transitional zones.
Post RP PSA, Sep10 – 0.02

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7078
   Posted 11/12/2010 11:22 AM (GMT -6)   
dgabre,
 
Another Welcome - wish you didn't have a reason to visit us, but since you are here, join in.
 
I am a Gleason 4+5, and did DaVinci RP.
My DRE was only slightly abnormal, but it was enough with a first and only PSA test of 7 that they did a biopsy. I was convinced that it was expected to come back negative or very limited. It did not abide by our wishes, and came back G 4+4 in the majority of a 12 core biopsy, only 3 cores were normal.
Followup CT & bone scans did not show anything other than my multiple broken bones over the years.
So I was off to DaVinci hoping for a contained cancer.
Surgery found that the capsule had been broken in multilple places, and made it a G 4+5.
 
All that carefully considered with the surgeon and radiation oncologists, I was off to Radiation immediately. I will say that there were a number of men in the 70+ range who were on Radiation as a first-line treatment, who visited with me most days in the waiting room, and from them, I got a lot of encouragement and reports of minimal side effects (except fatigue, which was across the board). I have more than most, having been first a surgery patient, and having had colo-rectal surgery in the past.
 
I've not done HT, so can not speak to that.
 
I hope your scans come back clear - we will be here if you need our non-medical thoughts.
 
I should add - my gout cleared up for months with all the water I had to drink for the RT.
 
 

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2217
   Posted 11/12/2010 11:52 AM (GMT -6)   
welcome dg
A DRE only feels over part of one side of the prostate, thus if there are lumps and bumps caused by cancer but they are on the top bottom left right or far side of the gland the DRE will miss them. (A good doc can still work out a lot from a DRE such as if the gland feels large or hard)
I was DREed by a GP an intern and two uros and they all reckoned it felt okay. (fortunately the PSA and the biopsy told them that it wasn't)

You have had lots of advice already about what may happen next that I can't add to at this stage so I hope you find a solution that helps you.

Alf

dgabre
New Member


Date Joined Nov 2010
Total Posts : 4
   Posted 11/30/2010 1:32 PM (GMT -6)   
I got my CT scan and Bone scan results back and both are negative to my delight however knowing that CT scan is only about 50% accurate, I can't be confident that the PC is contained especially with my gleason score of 9.

My urologist discussed the treatment options and as everyone said he doesn't think surgery is advisable for my age. He specializes on Cryo Ablation but suggested the best treatment for my condition would be Radiation Therapy along with Hormone Therapy. So I saw a radiation oncologist who specializes on PC and the treatment plan he suggest was as follows:

1> Take casodex for 7 days
2> Then get Lupron injection and wait for 3 months to shrink the prostate
3> Then start cyberknife radiation treatment for 3 weeks
4> Followed by IMRT radiation for additional 3 weeks
5> Then get another Lupron injection to last for 3 months

At the end of the 3 months, he would want me to continue on the HT for a year depending on how well I responded to the side effects of HT. But at a minimum he wants me to be on HT for a total of at least 6 months from the start of treatment.

I really like my radiation oncologist in terms of taking the time explaining everything like the benefits of combining the 2 radiation treatment methods. He basically saying with such a high gleason score, there is more than a good chance to find PC on the seminal vesicles so IMRT is much better getting to those than cyberknife.

I have decided to go along with this treatment plan so if anyone would comment from their experience I would greatly appreciate it.
Age 75
10/1/09 PSA 6.4 actually 12.8 since on Proscar
10/5/10 PSA 8.2 actually 16.4 since on Proscar for 10yrs
11/2/10 Biopsy 13 out of 14 cores positive 5 cores over 90% involved 5+4 and 3 cores 50-70% involved 4+5
11/2/10 Clinical stage T2C
11/12/10 CT scan ABD/Pelvis - NEGATIVE
11/12/10 NM Bone Scan - NEGATIVE

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3887
   Posted 11/30/2010 2:01 PM (GMT -6)   
I think you are following a sound course of action..Since I am younger than you, they started me off with surgery which was unsuccessful but at least it removed 99.5% of the cancer..Now we hope the radiation and HT can deal with the rest..

But you should know, achieving a positive outcome is a much tougher fight for us G-9 guys than the G-6 guys have..The side-effects and unintended consequences of these treatments can be pretty rough..This is not going to be a "walk in the park" for either one of us and the many men very similar to us..The G-9 group is like a separate club in the club...

Have you read Walsh's book? Or any of the PC books? Lots of good information that can help you. Diet and exercise will become VERY important as time goes on..
Age 68.
PSA at age 55: 3.5, DRE normal. Advice, "Keep an eye on it".
age 58: 4.5
" 61: 5.2
" 64: 7.5, DRE "Abnormal"
" 65: 8.5, " normal", biopsy, 12 core, negative...
" 66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
" 67 4.5 DRE "normal"
" 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT, Dec

dgabre
New Member


Date Joined Nov 2010
Total Posts : 4
   Posted 11/30/2010 2:07 PM (GMT -6)   
Fairwind, yes I am still reading Dr. Walsh's book and have learned so much from it.
Age 75
10/1/09 PSA 6.4 actually 12.8 since on Proscar
10/5/10 PSA 8.2 actually 16.4 since on Proscar for 10yrs
11/2/10 Biopsy 13 out of 14 cores positive 5 cores over 90% involved 5+4 and 3 cores 50-70% involved 4+5
11/2/10 Clinical stage T2C
11/12/10 CT scan ABD/Pelvis - NEGATIVE
11/12/10 NM Bone Scan - NEGATIVE

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 11/30/2010 3:02 PM (GMT -6)   
This is a very reasonable course of action. probably a 40% to 50% chance of cure, but even if it doesn't result in a cure it will slow down the progression so you can enjoy many more years of quality life.
Johnt
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

TTaylor
Regular Member


Date Joined Nov 2010
Total Posts : 102
   Posted 11/30/2010 8:22 PM (GMT -6)   
I wish you the very best. I would suggest getting the book "Surviving Prostate Cancer" by Dr Patrick Walsh. It answers all the questions. I am 67 years old, a Gleason 8 with adipose tissue invasion and perinural invasion. I had a Robotic Prostectomy 5 weeks ago and will have Harmonal Therapy and aduvent radiation probably in late january. I opted to have the surgery because of the extent of the Gleason 8's and adipose tissue invasion. This would leave me the option to have radiation after surgery. I did not get a second opinion on my biopsy as I think this is a personal thing that only the patient can answer. You will have many friends here, and we are always glad to share our support in any way we can.
Stay well and blessed
TTaylor

proscapt
Veteran Member


Date Joined Aug 2010
Total Posts : 644
   Posted 12/1/2010 3:57 AM (GMT -6)   
Going to the sloan kettering nomogram

http://www.mskcc.org/applications/nomograms/prostate/PreTreatment.aspx

and entering your age, PSA, Gleason, and number of positive cores, it suggests that you have a 44% chance of having organ-confined disease, and therefore a 56% chance of having at least one negative aspect of pathology, either, extracapsular extension, seminal vesicle invasion, or lymph node involvement. (I entered your PSA as 16 rather than 8 because of the proscar.)

It also provides some info on the odds of progression under different treatment options.
DX at age 54 12/2009
Initial clinical profile: PSA 5.6, DRE-, high pre-op PSAV. Clinical stage T1c
Biopsy: Gleason 3+4 with PNI / 6 of 14 cores + / 10% of total length + / worst 45% +
TX: Robotic assisted RP 2/2010
Pathology: pT2cNx / Gleason 3+4 / PNI+ / SM- / SV- / EPE- / Tumor vol 7% / vol 40cc / 63 Grams
PSA - post-op 0.01

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 12/1/2010 10:07 AM (GMT -6)   
I also wish you the very best. It sounds like you have a sharp Dr with a good plan of action to attack that darn PCa.

Cajun jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED
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