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Candidate for active surveillance

AZFox17
Posts: 2
Joined: Mar 2012

My first entry after being a reader for recent weeks. I have muchly benefitted from those who have shared thier knowledge/experiences.
Biopsy on 1/23/12 showed 1 of 12 cores was cancerous with only 2% involvement and a Gleason score of 6. Initial grading by OURLab and confirmed by pathologist at Mayo Scottsdale. PSA density from most recent test is 0.24 (8.5/35). PSA velocity has a 9-month doubling time.
Second opinion from the Mayo urologist was for active surveillance; he, a surgeon, would not recommend surgery or BT due to a blood clotting tendency which has me on warfarin. IMRT was his treatment of choice. I have a history of high PSA, and had a biopsy in 2006 after getting a result above 4.0. That biopsy showed only 1 of 12 cores with high grade PIN. Repeat PSAs since were in 3.5 to 4.4 range until 4/11 PSA was 6.9, retested in 5/11 at 7.2, and at 8.5 in 7/11 after taking a 3-week treatment on cipro to rule out prostatitis. An initial biopsy scheduled date of 9/11 had to be postponed due to a hospitalization for pulmonary embolisms, a repeat of a 3/93 experience.
Post-biopsy next PSA is later this month. Other treatment options are Cyberknife in Phoenix and PB at Loma Linda in CA. My primary care physician recommends PB.
Other medical conditions are mild aortic valve regurgitation and mild COPD. At this point I am leaning towards active surveillance at least until a repeat biopsy next January, though I am troubled by my PSA density and velocity values.
Anyone have something to offer regarding my concerns.

hopeful and opt...
Posts: 1282
Joined: Apr 2009

free PSA tests along with your PSA

The PSA doubling time is very troublesome, however the critical test is the biopsy.

Have you had a PCA3 test?

Have you had an MRI endoreectal with a spectroscopy? Resulting from your other medical conditions, do you have any hardware, that precludes you from this test?

Do you have an idea of your life expectency?

Swingshiftworker
Posts: 620
Joined: Mar 2010

Since you apparently have an early stage PCa, you have time to make a decision BUT, since your PSA doubling time is now only 9 months, you probably shouldn't wait TOO long to make a treatment decision.

Even if you don't want to receive treatment now, I'd suggest you at least decide WHICH treatment you want to receive -- CK or PB -- now and line up the insurance or money to make sure you can pay for it and then make a decision on WHEN(not whether) to treat or not based on the quarterly PSA tests in the next 6 months.

If your PSA level continues to accelerate, you'll be ready to go ahead w/the treatment but, if it levels off, you can continue to postpone treatment and monitor your PSA with AS until there is a significant change in the future.

The risk, of course, is that the PSA tests are NOT giving you an accurate picture of the have reported higher levels of cancer in their prostate following surgery than was indicated by their biopsy and PSA scores.

Most men have trouble dealing with the uncertainly of Active Surveillance (AS) and seek some form of treatment almost immediately following diagnosis -- either surgery or radiation -- as a result but, if you can deal with the "stress" of "not knowing", there's no reason at this point that AS won't work for you.

Good luck!

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

Welcome to our forum. I will just comment on PB at Loma Linda. My father had the treatments and is doing fine at 13 years post treatment. I actually have a daughter that is attending Medical School at Loma Linda university so am very familiar with them and they are highly regarded in the MEdical community.

The main disadvantage to Proton is the length of treatments which will run 7-8 weeks as oposed to Cyberknife which I believe is 5 treatments. You would need to consider the cost of staying at apartments / hotels in the Loma Linda area which of course adds to your cost of treatment.

I had originally thought that I would go the Proton route but my insurance denied coverage so I then settle upon the Davinci Robotic Procedure.

Best wishes and glad your cancer was found early on.

lewvino

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Welcome AZFox. From what you wrote I think you may be over-estimating your PSADT. There are a number of nomograms used to calculate this value so be sure you're using the one that is before surgery.

With all respect to your GP, my experience is that they are far from being experts on PCa and although they mean well they are not up to date on all of the studies. I love my GP too but frankly I think I know more about prostate cancer than he does at this point. In face, he is always asking me questions about my treatment (CyberKnife) compared to others. He initially recommended surgery to me and now tells me that he is glad I did not follow his advice.

You don't mention your age and from that you can draw statistical conclusions about your life span, particularly with your other conditions which, in my lay opinion, pose more of a threat to your longevity than the prostate cancer.

I consulted with Loma Linda and was very impressed with their overall approach. At the time (2010) it eventually became my second choice behind CyberKnife. Since then my continuing research and studies lead me to believe that Proton Therapy is less effective than CK and at least at leat as effective as IMRT or other forms of radiation but about triple the cost. It is a good group though you need to figure living expenses for nearly three months away from home while undergoing treatment.

I think your intuition toward AS is a very good choice given the information you've posted. The PSA numbers going up and down make me wonder if there is somthing else going on that is causing an elevated PSA. As you may know, many things can cause PSA to go up including some of the medications you are taking for your other conditions.

K

rch
Posts: 78
Joined: Nov 2011

AZFox
You have omitted a very important piece of information on your post-that's your age.Age and life expectancy are important determinants in the Tx decision making.What really caught my eyes on your post were your recurrent PEs for which I presume you are on Warfarin for life. I very strongly advise you to get a consultation from a Medical Oncologist who could evaluate your case more thoroughly and advise on appropriate treatment options for you. People on Warfarin do get surgery , but the risks of DVT and PE perioperatively are higher. As to radiation, it seems to be a preferred option although potential proctitis with chronic rectal bleeding on Warfarin could be an issue.So,once again I advise you to see a 'Medical Oncologist'and discuss various options including possile AS based on your life expectancy.

AZFox17
Posts: 2
Joined: Mar 2012

My current age is 67. With respect to my mild COPD, statistics show a 50% survival at ten years after diagnosis. With respect to the mild aortic valve regurgitation, the survival rate is 80-95% after ten years which can be extended with valve replacement.

I don't have a recent free PSA, nor a PCA3 test, nor a MRI endorectal test. The PSA doubling time was calculated using a Sloan Kettering nonogram.

I will discuss the above additional tests and consultations at my next urologist visit in early April after next PSA reading. Thanks for all your responses.

hopeful and opt...
Posts: 1282
Joined: Apr 2009

the psa numbers are influenced by other factors, so don't ride a bike, have sex, or do strenuous exercise for a few days before the test....it can elevate the numbers....(additionally a hard stool can raise the number..........good idea to ask them to find out if you have any uriniary infection.

The free psa is done at the same time as the psa so have them order that.

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