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Posted 2/17/2013 7:19 PM (GMT 0)
This forum is a great source of inspiration and knowledge! I am 48 years old and was diagnosed early this month with PC. My dad had PC when he was 54. I am not sure of the some of the terminology, so I'll use by "southern" english. My family doctor has been checking my PSA levels for the past 2 or 3 years. It started out as 2.? then 5.?, then 7.? and then 11.?. At the 7 and 11 mark, he referred me to a Urologist and he conducted an in-office biopsy (8 needles) and the result was negative. At the 11 mark, he did another in-office biopsy and the result was negative. When I went for my 3 month Diabetes check-up in December, he asked me if I wanted him to check my PSA level. I said, "might as well since your drawing blood anyway". My PSA came back at 32. The urologist recommended an in-hospital biopsy, 20 needles and I took his advice. The biopsy came back positive in 60% of the samples. He said on a scale of 5 to 10, mine was a 9. Next, he wanted a bone scan and CT scan to make sure it was contained within prostate. The scan showed the cancer was contained within the prostate, and he recommended having robotic surgery by Dr. Ogan in Atlanta. I have an appointment with Dr. Ogan on Feb. 22. Most of my answers about the surgery have already been asked and answered in other posts, but I do have a question. At what age do most men began having their PSA checked? After my family doctor had checked mine a couple of times and it was between the 2 and 7 mark, he said a lot of information he was getting indicated that doctors were checking PSA levels too much and there was a question of the accuracy of the test. If he had not been checking mine, it might have been a year before he checked it again and who knows what it might have been and what might have been the chances of it moving outside the prostate? Also, I have Colonial Cancer Insurance, does anyone have any experience with Colonial?
Posted 2/17/2013 7:51 PM (GMT 0)
Missed biopsies are maybe to common, John T had around 13 before finding the reality of PCa and where it was. Get a copy of the biopsy report, how many positive cores found, what percentages of PCa found, what actual Gleason scores were found in each, what is the histology or precise findings of how it looked?
You can have multiple Gleason scores happening within the prostate, they found 7,8,9's in mine and they usually grade you overall at the highest level found, depending upon some variables. (I ended up with an 8 overall).

Your scans are not totally definitive, and the doctor can only assume it is contained, this is base on percentages and things like partin tables, nomograms, naryan tables and such. Plenty of people have heard you have clear scans, clear post surgery, or we got it all.....and found it was not always the truth of the matter. Checkout nomograms and see what the odds are based upon your numbers and then remember these are averages and still not precise as to how your case will actual be. Lot of info to be gleaned here: www.yananow.org     www.prostatepointers.org  

Nomograms:  www.pcri.org     (or google Sloan Kettering nomograms)

Pathology educational piece by C. Maack: http://www.theprostateadvocate.com/pdf/Biopsy%20%20Importance%20of%20Expert%20Pathology%20Opinion.pdf   

Just hoping to give you a better heads up, this is not all simplistic science as you will soon find out. The more you understand the better. 

Post Edited (zufus) : 2/18/2013 7:29:33 AM (GMT-7)

Posted 2/17/2013 7:59 PM (GMT 0)
Sorry about your diagnosis and that it took so long to find out.
With early treatment you are likely to live a long time.

Men often used to get PSA test at age 40 as a baseline. There is a lot of controversy about whether doctors should test PSA and most people here believe in testing it. Most patients believe it saves some lives.

With your PSA and Gleason number, it is quite possible you might need radiation treatment in addition to surgery. In that case, some might argue for radiation treatment instead of surgery. Anyway good luck with the decision and treatment.
Posted 2/17/2013 10:13 PM (GMT 0)
Yes, I do think they recommend PSA testing starting around the age of 40. Certainly no later than the age of 50. The younger age is probably best if there is a family history of PC.

In my humble opinion, and probably with many others in this forum, anyone who says PSA tests are useless are fools. Many of us, with PC stories to tell, will relate that it was THROUGH a PSA test that their PC was detected through a subsequent biopsy that would not have taken place otherwise.

While the actual number of the PSA reading may not, by itself, be a surefire prediction of PC, it is a RISE of PSA numbers in subsequent tests that can strongly suggest the presence of PC. When there is a spike in PSA readings, it IS a surefire red flag that something (PC, infection, BPH, etc) is not right in the prostate.

So do not allow anyone to tell you that PSA tests are not valuable. Perhaps there can be too much action taken on lower (and also stable) PSA numbers, but that is due to individual physician policies -- and does not diminish the value of the test, itself.

Once again, this is just my humble, uneducated opinion. LOL

Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1.
Semi-firm erections now happening 14 months post-op & slowly getting a bit stronger.
Posted 2/18/2013 12:14 AM (GMT 0)
Dear So Ga:

Welcome to HW. Sorry you have to be here but I think you will find a lot of support and good info on this site.

With your stats, you are likely dealing with an aggressive case of prostate cancer. And, as zufus said, despite the encouraging scans, the ones you had do not necessarily mean that the cancer is contained. What that means is that a mono-therapy such as surgery or brachytherapy alone may not be enough to cure or arrest your cancer.

What I would suggest is that you seek out a medical oncologist who is experienced in dealing with prostate cancer. That way you can (hopefully) get an educated and unbiased opinion of how you should treat this.

Good luck and please keep us posted.

Jim
Posted 2/18/2013 3:02 AM (GMT 0)
Welcome to Healing Well.

I was 56 when I had my first PSA test. For all the "complete" physicals I had over the years, my GP did not believe in the test because he read a European study that indicated too many men were getting treatment and early testing only saved one guy in 1000. Well my first PSA came back at 17.8 - and the rest is history.
If the doc says you don't need a test, ask him if he know his PSA. If he says yes, kick him in the nuts.

Jeff
Posted 2/18/2013 12:09 PM (GMT 0)
South GA, sorry you have to be here and I need to send your post to my son. I too was 54 like your dad when diagnosed and keep harping on my son to get checked every year, he is 37 and has been check once right after I got diagnosed.

If you are seeing Ogan, then I assume you will be going to Emory which is where I had my surgery and actually saw Ogan first before my open surgeon Fray Marshall since because of a nodule, was not a candidate for LAP. You will be in good hands with Ogan.

I wish you well with your treatments and where are you in South GA, which is where I live.

Ron
Posted 2/18/2013 2:32 PM (GMT 0)
Here is a multitude of various nomogram links, that covers various treatment or findings too:

http://prostate-cancer.org/prostate-cancer-algorithmsnomograms/  
Posted 2/18/2013 3:15 PM (GMT 0)
Thanks for the responses. montee, I live in Cairo, Ga.
Posted 2/18/2013 3:37 PM (GMT 0)
A syrup maker!
Posted 2/18/2013 4:03 PM (GMT 0)
Welcome to our forum. The question of what age to begin PSA testing has become so controversial in the last year or two. IMO if you have a family history I think a man should begin at age 40 with no family history at age 50. But we have several members in this forum under 50 with no family history of PC who were diagnosed early enough and had they waited until they were 50 their outcomes could have been much worse. The controversy is not over the cost of PSA blood testing but the rush of younger guys to do surgery for less aggressive Gleason 6 diagnoses and that cost. Some have even argued that a G6 pathology should not even be called cancer by the medical professionals.

I had my first PSA at age 50 because of my Grandfather having PC and my Dad suffering for 40 years with BPH. My GP did my 35 year old son's first PSA last year just to have a baseline number going forward.

Posted 2/18/2013 4:31 PM (GMT 0)
Welcome SO GA! Hate you here, but glad to see somebody from home. Though I live up in the state now, I was born in Nashville. Good to know you. Plenty of help to be found here so ask away. You are close enough to Florida, (you can spit across the line), there are some facilities down there that I have heard of that are excellent as well. But Emory is a good choice as I know many that have had good experiences there. I myself used a guy close by in Augusta. Well pleased so far.
Posted 2/18/2013 6:02 PM (GMT 0)
SoGa,
Welcome. Your high Gleason score plus your high psa put you in a very high risk category. Even though your bone scans are clear the high psa is a red flag for systemic disease. At the minimum a PAP test should be done as it is the best indicator for a systemic disease. You need to determine if the disease is local or systemic before starting any treatment. Two good diagnosticians in your area would be Dr Charles Myers in Earlysville Va. and The Dattoli Center in Sarasota. Good luck
JT
Posted 2/18/2013 6:11 PM (GMT 0)
I hope that during my meeting with Dr. Ogan, I will discuss my treatment options. Once again, thanks for the info.
Posted 2/19/2013 1:41 AM (GMT 0)
SoGa:

Sorry that you're here ... I had similar stats when i was diagnosed last year. And I want to reiterate what a couple of veteran members have said. At your stage of cancer G9, PSA > 30 you're at high risk. An extremely important piece of the puzzle is getting a medical oncologist on your team that specializes in PCa. Charles Meyers is one over in Virginia. You might get his book too, while you're at it ... it opened my eyes to the multi-pronged approach i would need to face this disease. By the end you'll have a urologist, a medical oncologist, and likely a radiation oncologist in your corner. Get the best you can; I have more than one of each in order to keep them on their toes!

John T and other veterans gave me a lot of support getting up to speed on this mountain climb. I'm happy to help anyway i can ... PM me if you want.

Ray
Posted 2/19/2013 9:01 PM (GMT 0)
So Ga,

The PSA test may not be perfect but it is all we have for now. I finally got my son (age 43) to add PSA to his annual physical and have urged my son-in-law to start his base line no later than 45.

You have gotten some good advice from the guys above. Best wishes on your journey to a treatment choice.

JoeFL

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