39 year old recently diagnosed with PC

No antibiotics but before my first PSA test in May I was having stomach issues that prompted me to see my primary care doc in first place. She referred me to GI for that issue at the same time she referred me to urologist. GI did colonoscopy(after checking for bacterial infections) and diagnosed ulcerative colitis for which I have been taking prednisone and llialda. I've had a lot of people digging round in my tail hole since MAY. Been a rough summer. I'm done with prednisone now. My uro says that these conditions are not related at all (UC and high PSA). Since the stomach issues I was experiencing during my first PSA test were attributed to UC and not bacterial infection I would say that is not the reason for high PSA. And the one I just had read basically the same as the one in May.  I asked urologist about the possibility of more aggressive cancer being present and he just does not know and there is no way to know precisely with current technology. Said I could do a "saturation" biopsy to get more cores at one time but that still will not give me the definitive answer I am looking for. It may show more aggressive cancer and it may not but I still won't know 100% the needle hit its "mark". I have found that a whole lot of improvement is needed in the prostate biopsy world.

Love that list gedman. My wife and I have decided not to tell our kids (6 and 9) about my PC. If/when I opt for surgery we are going to relate it to something like appendicitis. But great list as I think nearly all apply to me as well.

I stopped reading the comments halfway through so I apologize if this is a repeat. My husband was diagnosed at 39, G6 and t1a as well. His immediate response was get it out and there was no way to talk him into anything else. Hind sight being what it is, I really wish he would've taken time to learn more, gather more info. He deals with having undetectable PSA at this point but he has real issues with erections, the fact that he has dry orgasms and ultimately just doesn't feel very manly at 41 years old. He has just this summer had several strokes which effects that as well but his sex drive sucks, he can't get an erection from visual stimulation alone at all anymore. I can go on and on......I wish he would have at least taken more time. AS gives you time, gives you the opportunity to make that surgery decision down the road. Once you make that choice it cannot be undone. Take some time, decide what works best for you, your family, your body and emotionally what you can handle. There aren't lots of 39 year olds but they are out there. Feel free to email me if you want more specifics, email is listed in profile

Best of luck
Susan

cdm39 said...
My only worry and the only reason I am not 100% sold on AS is my 2 PSA tests. My first in May was 6.7. Second one in August was 6.49. From all the stats I have seen or heard of, this is a really high PSA for such low volume non aggressive disease that my biopsy showed. Just afraid there is more there that was not found and that is what continues to lead me to wanting surgery.

Welcome cdm,

While the biopsy indicates you are a very low risk patient, biopsies are known to frequently under-sample (and often completely miss) tumors of significant size. The PSA is a red flag. If it cannot be brought down by antibiotics, I would strongly consider a second biopsy (perhaps MRI or color doppler ultrasound guided) focused on the area of the positive core before going into AS. And, as others have stated, you should also absolutely have a expert second opinion on the pathology.

I was diagnosed in March at age 40 with a wife and two kids ages 8 and 11. I was also G6 but was a bit higher risk than you as I had a palpable tumor on DRE (my first and only PSA in Jan was only 1.23 -- a bit high for my age but would not have triggered biopsy) and was positive for perineural invasion on biopsy.

I didn't really give too much serious consideration to AS because I was not comfortable with the ~30% chance of higher grade disease that was missed on biopsy or with my stage T2a and PNI+ stats and figured the sooner I have the surgery the better likelihood of a good outcome. I focused my energy on finding the absolute best surgeon (you can read the details here) and I had surgery at the end of May with good results both oncologically and in terms of side effects. I had very little pain (despite open surgery complicated by mesh hernia repair) and was back to work in three weeks. Continence has been a bit slower than some report but at three months I am now nearly dry. Potency still has a way to go but I have been having sex with the help of Cialis since 9 weeks, which is ahead of the curve (but I think fairly typical for a patient my age). Thankfully, I never had to tell my kids I had cancer.

But even though I've had a pretty good experience with surgery I'd strongly advise you not to rush into that (or any other risky and irreversible treatment) with your apparently very low risk stats. In your case AS does seem like a great initial option. Just be sure to at least get the expert opinion on the biopsy and get to the bottom of your elevated PSA...

Good luck!

My husband was 41 when he was diagnosed 2 years ago and gleason 6 was only found in 1% of 1 core.  PSA was as high as 8 but after antibiotics stayed around 3-6.  We spoke with doctors at 4 hospitals and only one recommended active surveillance.  Other doctors seemed appalled that he was given that recommendation of AS.  They all strongly recommended surgery (including radiologist and oncologist at very highly regarded hospital).  They also recommended it be done sooner than later.

After surgery pathology showed cancer more widespread in all quadrants than we would have expected from the biopsy.  He also ended up needing salvage radiation as psa did not drop to zero.  So far, so good since then.

The doctors told us that a young fit person tends to heal better and suffer less from side effects than an older person.  There were definitely side effects, but I would hate to think where we would be now if surgery was delayed.

With your similar stats, I thougth you might like the advice we were given from several highly regarded urologists.

That's a compelling story Melg. Very glad your husband opted for treatment!

I talked to several highly regard urologists as well. Since I was pretty set on surgery by then, the idea of AS was not really raised by me or any of them except that Dr. Shalhav, who is head of Urology at University of Chicago, went out of his way to tell me I would absolutely need treatment and should not let it go for a long time because it would just become more risky and less likely to be successful.

Melg- your husbands story is exactly what my gut is telling me is going on with me. If my PSA were in the 2-3 range I would feel a whole lot better about it. I just don't trust this stone age biopsy procedure, at least that's my perception of it.

Thanks again to all of you for sharing your stories. Tuesday I will meet with my doc and render my decision. Leaving for the Outer Banks in the morning and gonna do a lot of thinking and relaxing on the beach til then. Really grateful that I have found this forum. What all of you have posted has already helped me tremendously. I'll be back to discuss/ask more of what to expect from my choice.

njs said...

cdm39 said...
My doc says he has performed over 500 Da Vinci surgeries. Is this a very seasoned Doc or an average number?

For robotic surgery the learning curve has been estimated to be as high as 1600 procedures: www.bloomberg.com/news/2011-02-16/doctors-need-1-600-robot-aided-prostate-surgeries-for-skills-study-finds.html

And experience is necessary but not sufficient. Irrespective of experience, some surgeons are simply more talented. This is why you need to know the outcome metrics -- in particular positive surgical margin rates -- of each individual surgeon you consider.

njs - wanted to get back to this report. 1600 seems very high and might squeeze many folks without access to surgeons who have done so many out of the equation.

No science to my feelings but although I was looking for a guy with thousands, I was comfortable with 600+ while shopping around.

I wonder how many surgeons there are in the US with 1600+ procedures.

davidg said...
1600 seems very high and might squeeze many folks without access to surgeons who have done so many out of the equation.

No science to my feelings but although I was looking for a guy with thousands, I was comfortable with 600+ while shopping around.

I wonder how many surgeons there are in the US with 1600+ procedures.

A Yooper said...
One more thing to add to the whole discussion of "how many is enough" to be considered experienced. As one of our brothers out here has said in the past - "I've been golfing 3 days a week for the past 30 years, and I still suck at it."
Point being that while the number of procedures a practitioner has done is an important weigh-in to the decision making process, quantity does not necessarily = quality.

As I've said many times - when researching practitioners, ask them what THEIR specific results are... They all have these numbers, and if they say they don't or are not open to sharing, that to me would be a red warning flag.

Yes does 1600 sound like a lot. Learning curve is hard to define and measure and will vary from surgeon to surgeon. For some it is surely faster and for other slower and, more importantly, as in Yooper's golf metaphor, each surgeon may reach a different pinnacle beyond which he cannot substantially improve no matter how many more procedures he does.

That's why I say experience is necessary but not sufficient and I prefer to emphasize individual metrics.

For example, the positive margin rates published by Thomas Ahlering at UC Irvine for his 551th thru 800th patient are still some of the best in the literature; better than those published by other surgeons who had done several thousand.