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I need some advice as after being diagnosed with a gleason 6 (1 out of 14 cores with 15% cancer in that core)with a PSA of 2.7, DRE negative in 11/2011, I chose active surveillance even being just 55 years old. Here is my concern, 1 Urologist says I need another biospy every 6 months for 2 years, the other says just 1 time a year for 2 years. Given my status at diagnosis, I am inclined to go with the 1 time a year vs. every 6 months, as it is less trauma to the gland & does not occur to me that it adds that much risk to the situation. Any comments welcome!
I too am 55 years old & on AS. In my four years of doing research while monitoring the disease, I have never heard of having a biopsy every 6 months without there being some justification for it, like a rising PSA. In fact, after my fourth TRUS biopsy, it took me about 6 months to stop having blood in my semen, and my Urologist agreed with me that I shouldn't have a fifth one a year later. Instead, he just wants me to have a PSA every four months for now. He said that if the PSA indicates a need, then we can talk about another biopsy. Note: For the time being, we did not set a timetable for another TRUS biopsy if my PSA remains unchanged. However, at the end of this month, I will be traveling across country where I will have another biopsy as part of a CDU scan because of a perineural invasion finding on biopsy slides sent out for a second opinion.
So, if I may offer you some advice. MAKE SURE that you send your biopsy slides out for a second opinion. I didn't think that I needed to because the Gleason score of all four biopsies was a 6, but Jon Nowlin from this site advised me to do it anyway. I got the results back from Bostwick Laboratories, which agreed with the initial finding that I was a Gleason 6, while at the same time finding that the % of cancer in the cores was less than that reported on my last biopsy. However, as stated above, they also found perineural invasion in my left base. That is BAD news, made worse by the fact that I have 4 cancerous cores out of 12. I have researched it and have found very little positive information to hang my hat on. So, I have actually sent my slides to Johns Hopkins for a third opinion since Lahey Clinic said that they checked for perineural invasion and did not find any evidence of it, and I made the CDU appointment. I will be posting on this eventually, but right now all there is to say is that it is looks like my AS journey will be coming to an end if Johns Hopkins agrees that there is perineural invasion and the CDU scan shows evidence of extraprostatic extension (meaning the cancer is close to escaping the gland, if it has not already done so).
The lesson here is to learn from my mistake. If there is extraprostatic extension, that is something that I could have learned about a whole year ago if I had sent my slides out then. As it is, because I could have had the cancer near the outside of my gland a year ago, I may have given it all this time to work its way out. That is going to be a hard thing to live with if I let that happen due to my oversight.
Don't forget the golden rule of prostate cancer "There Are No Rules".
TomF: I beieve that in your case six monthly biopsy procedures are an overkill. Most AS protocols refer to an annual biopsy, but some of the studies and pracitioners are moving away from that recognising that in the evnt of PSA stability, DRE unchanged, no symptoms, the disease is indeed an indolent one and less frequent biopsy is appropriate. The protocol I used for myself precluded any biopsy procedures after my second because of their lack of accuracy. Instead on the advice of a somewhat maverick European urologist I used PSA, symptoms and three yearly bone scans as my protocol. Not saying I was right, but it'll be sixteen years in August.....
Alan, I now from you previous posts and mails that you are what might be termed a 'worrier' if we were to categorise people. And as such you tend to take the worst case scenario instead of the best - or even to clearly understand that there is a range of outcomes rather than one definitive one.
Here you have a difference of opipnion about whether there might be perineural invasion or not. You choose to believe that there must be and assume the worst - that it is very likely that the disease has spread, that your options are now limited, that your life expectancy may be reduced.....
You may be right on all counts.....and yet.....there are many studies that indicate that evidence of perineural invasion does not impact on ultimate outcomes.
Is the glass half full or half empty?
All the best from a professional optimist (based on my life experiences where nothing is ever as bad as I imagined it might have been)
Hi Terry,
I hear ya on the no rules & everyone's tolerance level is different for the AS route. But, I am definitely going to go with the Urologist who is OK with a yearly biospy. On the subject of PSA tests, I am not convinced there is a good reason to have them done in between the biospy intervals given what I now know about the questionable of accuracy of results as a cancer marker. What do you think?
I'm with you Tom - and my oncologist would agree too, I think.
Good luck to you. We are all different, we have diferent ways of looking at risk and assuming risk. There is no "right" way, just what we are each comfortable with.
Your results are very similar to mine and I wished to respond as I have been doing AS since October of 2010. I am turning 65 in three weeks and the comment from my urologist when diagnosed was, "You're young enough and with your numbers you could choose to take your time in making a decision." When I decided to do AS, he said that I would need a follow-up biopsy on the one-year anniversary of my diagnosis but do a PSA and DRE every three months to make sure nothing was going astray too fast. I will be making a decision shortly on a more permanent treatment and feel that, to date, this was a prudent course to follow with my urologist. My son-in-law is a urologist as well and said most patients will stay with AS no longer than two years and then pursue surgery or other form of treatment.
