Gleason scores -- multiples. Your experience?

Hello Tatami.  Welcome to the forum. When you had your biopsy, several samples, called cores, were taken from your prostate. Your Gleason score is commonly reported as the highest grade of any core. So since your highest grade core was 3+4=7, this is your official gleason score.

Your radiation doctor was suggesting you could do something called active surveillance. You happen to be in a gray area where doctors will disagree whether this is appropriate for you. If you could post more information about your biopsy, you will get advice and opinions from members of  this forum. We need the total number of cores taken, and % of cancer in those positive cores.

You should research "active surveillance  of prostate  cancer". The decision between active surveillance and treatment is yours alone. But I believe you would be well served if your doctors would spend the time to make sure you understand your situation so you can make the choice that is right for you. 

You do have time to decide. Continue to do research and get more opinions from doctors who can explain all of this to you. 

Good luck.

In my case, the biopsy had twelve cores taken. Eight of them were positive 3+3=6, with some having a high percent of cancer present. I actually met some guidelines for active surveillance but most doctors advised treatment because of the high tumor  load. Then I had an adverse MRI which sealed the deal for treatment.

Your 3+4=7 makes your decision harder but those biopsy details matter.

Hi T

The most important points when considering AS are Gleeson, PSA and size and location of tumour.

You don't say what your PSA is and PSA history . Gleeson looks ok, together with a tumour size of 1mm you're a good contender for AS

When I went on AS my tumour size was 3mm and over 4 years went up to 13mm which is when I started treatment.

The most important thing when on AS is to keep having the PSA tests and yearly MRI.

I assume your PSA is lowish so everything looks ok for you 

Good luck

Steve

Stampede: I do not know how to thank you enough. 

Let me add a bit more info, which I should have done the first time around. If I understood correctly, there were 24 cores taken, and 5 indicated cancer. So, when you say Your Gleason score is commonly reported as the highest grade of any core. So since your highest grade core was 3+4=7, this is your official gleason score. -- this means that that score could apply to those 5 cores, but that the other 19 might have be 3+3=6? 

As for the percent of cancer in those positive cores -- I would have never thought to ask that question, so, when I return on November 24, I will be sure to do that. I can't tell you how much I appreciate your intelligent, helpful response. When you are hit with this kind of thing, despite doing research, you just might not know what questions to ask. 

Yes, I am very familiar with "active surveillance." I think the doctor and I talked about it briefly, but the main thing that happened that day was that I was in so much shock over him telling me that I didn't need to get the brachytherapy yet, that I was having trouble processing anything else he said. 

But let me ask you this. You said: The decision between active surveillance and treatment is yours alone. -- this means that I, alone, decide whether to have the procedure done? This is what I don't understand. 

The doctor said he would not perform the brachytherapy unless I wanted it. And I said, "Of course I don't want it; why would I want it?" He said the majority of procedures are done because the patients get nervous and think they should have the procedure done. That doesn't really make sense to me, but that's what he said. I told him "If you tell me: you need to get this done, then of course I will get it done." And he said, "I'm not going to tell you that." And I can only assume (which I should never do) that this is based on the results of the MRI that he showed me. 

So, as you said, it SEEMS that I am in the "gray area where doctors will disagree whether this is appropriate". 

So, again, 5 of 24 cores indicated cancer (not sure the percentage of cancer, but will find out), 4 Gleason scores (3+3, 3x and 3+4, 1x), and if I understood correctly, the cancer is about 1 mm contained within the prostate; no spread to other organs or bones.

If anyone here has more to share with me, please do. I have researched extensively. I am living in Japan and I am reliant on English-speaking doctors. I have, in fact, now consulted with 4 doctors. One has his own hospital and does prostatectomies (and was eager for me to have that done); one is the head of the urology department at the university hospital where I had the prostate biopsy (and he is the main urologist I've seen through the years), one is his junior colleague, and one is the brachytherapy doctor. The last one is the one who said we will do PSA tests every 3 months and another MRI in a year. 

So, it seems I have time, but after spending weeks of intense research and following this community and speaking with others, I decided on the brachytherapy. So, if push comes to shove, that is the course of action I will take. 

One other thing the (last) doctor said: "This situation could go on for the next 30 years." -- which I will assume falls under "active surveillance" -- and also seems absolutely impossible and unbelievable to me. 

I'm 68. I've lived longer than my father, and I'd be thrilled if I can make it to 75 or even 80, as long as I'm in good health, which, other than being a few pounds overweight, I am. So I think this is all I can think of to share now. Again, I'm extremely grateful for your response. 

When you say "sealed the deal for treatment" -- may I ask what procedure you chose? 

Hi Grundo, this is the PSA history over a year's time. The doctor was not remotely concerned about the 5.62. 

If in fact my tumor is 1mm and my next PSA is stable or lower, this will help determine what I do next. 

Yes, the doctor said PSA tests every 2-3 months, and a yearly MRI. 

When you say you "started treatment," which path did you choose? Thank you so much for your response and concern. 

Hello Tatami.

As you have time to think things out, while you are doing that there is a non invasive treatment that you can try "Hyperthermia Treatment" is now being used to compliment Radiation and Chemo. and as a mono therapy

Japan seems to be quite up on it and accepts it as a viable. treatment. Just look up "Hyperthermia Treatment Cancer Japan" 

I am waiting for replies from Spain and Germany., There is a clinic in Germany with seven machines think that is where I will get treatment, think it is done every three or four days, they heat your body up and create a fever situation.

I am due my six-month PSA test in October, I seem to have slight PSA anxiety, happens every time. Pre PSA test I fast, am on day two at the moment.

Your Cancer doesn't seem to be aggressive, so time is on your side. I was the opposite; my choice was limited to surgery with or without HT

The Hyperthermia treatment might slow down your cancer and keep you on AS.

All the Best

Tatami, Since you had 5 cores that indicated cancer, the other 19 were benign (or possibly atypical). Your grade is 3+4=7, but the fact it was 3+4  only in one core plays favorably to AS.  A low percent of cancer in each core would be favorable as well. I had 8 of 12 cores positive- 3+3=6, with up to 90% of core involved - unfavorable for AS. You had 5 of 24 positive, which is low enough to be considered for AS.

Your question about who makes the decision is interesting. Yes, you decide between treatment and As. You also decide which treatment as long as it is an option presented to you by a provider. These decisions can be HARD. So it is important to learn as much as you can to make the decsion that is right for you. 

When your doctor said this could go on for 30 years I don't think he was making a prediction about your longevity lol. His point was that many men who choose AS never need treatment. But the ACTIVE part is important.

The decision I made for myself was quite flawed but came out okay by pure luck.I had an MRI that showed two PIRADS 5 legions, both with extracapsular extension plus involvement of the bilateral seminal vesicles. Likely to be incurable. I wasn't on any forums and didn't see an oncologist. I now realize radiation and ADT was the normal path with my adverse MRI. 

Well, last November I had a robot assisted radical prostatectomy. My cancer was upgraded to 3+4=7. But it turned out tht the MRI was wrong. No extrapostatic extention identified, seminal vesicles negative, margins negative. PSA  <0.03 in Feb 22, and July 22. Quite a relief. Feeling great. So glad I didn't get radiated plus years of HT, never knowing I probably didn't need it, and never knowing for years that I was curable.

Good luck with your decision.

Thank you for this information. I did find the information you suggested. I would have never thought to look for it. 

Yes, pre-PSA, I now know not ride bikes for a week and no ejaculation for a week. Fasting is probably a good idea as well. 

Thank you and I hope the Hyperthermia is beneficial to you. I will bring up Hyperthermia treatment to my doctor and see what he says.

Many thanks. 

Thank you again. It's odd to me that the other doctors did not say that AS was something for me to consider, and basically said it was either radiation or surgery. I extensively researched both and finally decided on brachytherapy. If I do get to the point where something must be done, I still think I will err on the side of brachytherapy, unless they say that surgery is the only option. 

Yes, I don't think the doctor was talking about longevity. I don't see myself making it to 90, but living in Japan has probably extended my life because I don't use a car and it's extra effort for me to get Western food. And the Japanese diet, if followed strictly (which would be torture for me), would keep me slim and no doubt in great physical condition. 

At any rate, I greatly appreciate you sharing your information and I am so glad that your PSA is almost undetectable, that's outstanding. 

As for being "radiated" -- yes, if I had EBR, I might feel that way, but with brachytherapy, I don't think I'll feel that way. We shall see. Thank you again for your information and advice.