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Just diagnosed at 55

bhinton
Posts: 2
Joined: May 2012

I just got diagnosed last week. My PSA was 4.2 before being referred to my local urologist. He indicated that based on a DRE my prostate felt perfectly smooth and normal, although it was pretty large for a person my age. During the biopsy, in doing the sonagram he still thought everything looked good. However, the result of the biopsy was 5 positives out of a 12 sample. The pathologist scored it a gleason 6 (3+3) which my urologist thought was good. He felt reasonably confident that it had not moved outside the capsule. A cat scan did not reveal any red flags.

I am very active and, besides this, healthy. I am a marathoner and triathlete. I was hoping that Active Surveillance was and option for me, but I think I am not a candidate because of my probable remaining expected longevity and number of positive samples.

My real question is.. I am from Texas but began researching the best urology care and urologists in the US. It seems like John Hopkins under Dr. Walsh is considered the best. I understand that Dr. Walsh no longer does surgery, but his protege is Dr. Edward Schaeffer there. My only concern is that he has only been practicing for 11 years and is almost as active as a cancer researcher as as a surgeon. He does have tremendous accolades and reputation. He does both robotic and open surgery, which appears to be the most reasonable option for me.

Does anyone have experience with John Hopkins Urology Center and with Dr. Shaeffer specifically?

hopeful and opt...
Posts: 1293
Joined: Apr 2009

that you have need to join this forum, Those who post here are supportive and knowledgeable, and will provide good information for you.

Some questions please,

What is the involvement of the cores that are positive, that is what percent of each of these cores are positive?

What is the size of your prostate?

It is very very important for you to have a second opinion on your pathology so that you are not over or under treated.. there are are about 10 that are world clazs pathologists to choose from.

There are various diagnostic tests available that you need to explore.

There are various treatments available for you so you need to become knowledgeable about these treatments and side effects. There is no rush, however you need to keep active. there are choices other than surgery...not saying that surgery is not for you but do your research.

I recommend that you attend one or more local support group(s).

You need to research research and research. There are books available as well as the internet and literature from organizations.

I believe that there is an active surveillance program at john hopkins under dr. Carter. You might want to speak with them or another institution to see if you are eligible for this treatment choice. ( I am in an active surveillance program....there is a guy who was admitted at 35, so age is not the big deal, however five cores out of 12 as you have is a concern....you probably want a endorectal mri to see where in the prostate the cancer is , and to see if there is extra capsular extention.....click my name for more informnation.

good luck

bhinton
Posts: 2
Joined: May 2012

Thank you so much for your reply. I don't have alot of answers yet. I know my prostate was large 42. I need to get my biopsy chart from my urologist. I don't remember the percentages. I was a bit shell shocked at the time. I looked at your profile and the information was very helpful. How do I find out the names of the pathologists you were referring to?

I am planning to get at least one more opinion, but at this point I'm probably going to put myself in the hands of John Hopkins.

rch
Posts: 78
Joined: Nov 2011

Sorry to hear about the diagnosis. As suggested above, please get a second opinion from Hopkins or Sloan. Gleason grading can be very subjective. I had to get FOUR different opinions including Hopkins which actually missed cancer in one core!!If the GS and # of positve cores are confirmed,IMHO you should consider treatment of some sort with your life expectancy is > 15 yrs. PrCA is a multifocal disease and perhaps present in > 5 foci. However, there is no rush. Do your research, attend support groups and get several opinions. At the end of the day, YOU have to make the decision. We wish you well. Our prayers are with you.

hopeful and opt...
Posts: 1293
Joined: Apr 2009

go through shock and grief and all the negative feeling for the first two or three months after diagnosis. It is important to be upbeat and be with upbeat people; for example you might want to attend religious services, but only if the clergy person is upbeat, etc, etc.

It is important to have a copy of all your records available, as you decide to interview doctors in various specialties, and to talk intelligently about this.

As far as expert pathologist, another one is jon oppenheimer, tennesee 1888-868-7522. The best way that I found to handle this is to call your doctor and ask him to expidite this. Hae the slides packed and sent to the specialist and receive them back for stgorage after the second opinion.

There is something called psa density which is psa/prostate size....the smaller the number the better, so for say active surveillance you want it to be 0.15 or less. The biopsy report should have the size of the prostate in grams; additionally there will the cancer involvement of each core on this report.

By the way exercise or sex before the psa raises the number; i mention this since you are a long distance runner.

There is a major first class cancer hospital, a center of excellence in Texas, ( I forget the name right now but it's very well known) which you can explore. I am in CA. and I know a guy who made a trip to this hospital.

Since you have a less aggressive gleason score of 6 you have time to make a "best " decision. Don't panic. Don't jump to any treatment without due diligence.

I believe that it is a good thing that you want the "best" There is a difference between a doc who graduated at the top of the class and at th bottom.

Keep on posting here. There are very bright knowledgeable people here who are helpful.

ps : as mentioned by others , it isMD Anderson

hopeful and opt...
Posts: 1293
Joined: Apr 2009

.

hopeful and opt...
Posts: 1293
Joined: Apr 2009

disregard

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Adding my welcome and as others have expressed sorry you have had to join us on this corner of the web.

As you know the goods news is that a Gleason 6 gives you many options for treatment.
Follow the advice given and get second opinions.

You might want to research other options besides surgery. Some of those are Proton, or Cyberknife procedure.

I was age 54 when diagnosed Gleason 7. I had the davinci surgery for my first line of attack and doing well so far 3 years post diagnosis.

Lewvino

starr15
Posts: 31
Joined: Oct 2011

Have you thought about MD Anderson in Houston?

fcarpen
Posts: 4
Joined: Jun 2012

I was diagnosed in March at age 54. I too am very active and participate in long-distance cycling events and run regularly. I am also from Texas.

During my annual physical, my doctor noticed that my PSA had jumped from 2.4 to 3.6. She sent me to a local urologist who performed the biopsy. It came back with 8 out of 10 positives and a gleason score of 6(3+3).

Like you, I began doing research on my options for surgery. MD Anderson was high on my list as was IU Medical Center in Indianapolis because of relatives living in the area. However during a follow-up visit with my regular doctor, she convinced me that the local urologist she had sent me to was as good as anyone out there. I trust her completely and I decided to go ahead with RALP surgery here in town. I valued the prospect of recovering in the comfort of my own home and being able to go back to work quickly after surgery. I did talk to the urologist regarding his experience on the Davinci machine. He has performed more than 200 procedures on the Da Vinci and more than 300 open procedures. My research has indicated that a surgeon requires 100 to 200 procedures on the DaVinci to be completely through the learning curve. While I know there are other surgeons available with many more procedures on the DaVinci, I was comfortable with the local surgeon and went into the hospital with no doubts about my decision.

My surgery was April 30th. The pathology report came back that the cancer was completely encased inside the prostate and the surgical margins were negative. I had blood drawn yesterday which will hopefully show that my PSA levels are down. The doctor said he would like to see it at .08 or lower. I am confident that will be the case.

I have done extremely well following the surgery. I have not needed to wear any type of diapers or pads since the catheter was removed. I also had my first erection the night the catheter was removed. While it was painful, the pain has now gone away as I continue to heal from the surgery. I feel extremely blessed to be doing so well!

My advice. Talk to the doctors. Ask them about your options. Talk to friends and co-workers. When I brought up my situation with friends in our local cycling club, I found five other men who had dealt with prostate cancer and were doing fine. Their support was invaluable in my decision-making process. Do research but at the same time be aware of where the data is coming from. I found that many doctors were rated very capable on their own web sites. While that may be true, just be aware that the information could be biased in their favor. There are many excellent surgeons around the country who quietly take care of their patients. They don't show up on websites, but are well known in the local medical community. Bottom line, you need to be comfortable with any decision you ultimately make. When they roll you into surgery, you don't want to be wondering if you made the right decision.

Finally good luck. My prayers and thoughts are with you as you go through this process. Keep us posted.

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