just diagnosed, High Risk (PSA=35, Gleason = 6, DRE inconclusive)

Thanks Dan. I have scheduled two 2nd opinions in two weeks.

FYI, for those who've never heard of a surgery being stopped:

"Sometimes the nodes will be looked at right away, while you are still under anesthesia, to help the surgeon decide whether to continue with the radical prostatectomy. This is called a frozen section exam because the tissue sample is frozen before thin slices are taken to check under a microscope. If the nodes contain cancer cells, the operation might be stopped (leaving the prostate in place). This could happen if the surgeon feels that removing the prostate would be unlikely to cure the cancer, but would still probably result in serious complications or side effects."

From
http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-diagnosis

I also just spoke with a support person at NCIH.
They were really just reading off their website, but confirmed that the surgery proposed is appropriate. 1 of 3 standard treatments for T3, PSA > 10, with EPE. and young age. And given the quickly rising PSA ( a linear doubling in 4 months ) and EPE, haste was probably correct.

Looking at the signatures in this thread, the radiation and or HT options were used in patients with higher PSA's or more evident metastasis. Surgery (+ radiation ) in the rest that are similar to mine.

It's the haste that is at issue. So far I haven't seen evidence to not have the surgery ASAP.

Post Edited (Jim_____) : 11/9/2016 3:15:52 PM (GMT-7)

halbert: Thanks for your reply. I agree, surgery with merely G6 would be wrong. In the post where I relate my convo with my urol, I asked about the lobes ( biopsied as G6/G3+3) . I asked what the MRI indicated about the lobes. He said it showed no lesions, and that the MRI would have graded the lobes at pi rads level I, or lower, the lowest possible score, 'most probably benign'. This is consistent with the G6.

I interpret that as indicating the lobes can not be the source of the PSA of 35. So the G6 biopsy is irrelevant at this point.
The source is high likely to be the anterior portion identified as pi rads V.
According to my urol., a MRI guided biopsy of the anterior pi rads V section would delay surgery 6 weeks, and wouldn't change his recommendation. He is advising against it.

'definition of over treatment'
In any case, I wont get surgery till after I get two 2nd opinions.

Dan:
"Going back to one of your earlier posts.."show me others that have a high PSA and are still around for many years"..there are many, many here on HW, me included"
Well thanks, but what I really wanted to know was, once you were identified as having a very high PSA, how long did you go before treatment of some kind?

Are frozen sections of the lymph nodes not performed anymore?

Post Edited (Jim_____) : 11/10/2016 4:29:23 AM (GMT-7)

Hi Jim,

Just want to wish you some luck with your second and third opinions and probably your upcoming surgery since it looks like you are heading in that direction.

I just read through your whole thread last night and wanted to add my 2 cents, for what it's worth.

While I may not necessarily agree with the tone of some comments my take is most everyone is just trying to stress to you the importance of getting all the information and proper diagnosis before choosing a treatment. I was handling my diagnosis similar to you, I liked the local Urologist that did my biopsy and I was ready to have him involved with whatever treatment I chose. He pretty much narrowed my choices down to surgery or HDR with HT and external beam radiation(In NJ Urologists can get a piece of the radiation pie by having it done at centers/hospitals that they are affiliated with). His view was that I had a lot of cancer in there and should get started in 2 to 3 weeks but he also said he was fine with me getting other opinions. He said he wouldn't bother with any more diagnosis because as your Doc. said , he would do one or the other regardless of more info, and again with the amount of cancer in there I run the risk of it getting out if it has not already got out. Very nerve wracking indeed.

Initially I was leaning to surgery as I was more afraid of radiation and any long term damage that could occur. Then I changed and thought HDR (triple play as some here like to call it) would be better since the Urologist though it's chance of success was at least equal if not greater then surgery, and I would lose less time at work, which was very important since I am self employed.

However my girlfriend had other ideas, wanting me to get other opinions from Drs. associated with prostate cancer centers or cancer hospitals. She went to a prostate support group on her own and got the name of a Prostate cancer surgeon who had done thousands of robotic prostate surgeries and was highly thought of and another in NY associated with a prostate cancer center there. I was really irritated with her pushing me to get these other opinions but long story short as I started that process I started to get on board and quickly realized how I only had one shot at getting this right, and choosing a Dr. that was focused almost all the time on prostate cancer alone made so much sense to me. Eventually I ended up getting treated in Maryland, about 4 hours away and during the continuing diagnosis period and deciding on treatment phase we were driving down there weekly, this from a guy who didn't want to go further then 20 minutes initially.

I still think my initial Doc was great with how he went through everything with me but in the end I thought I was better served being at a cancer center with the Pc specialty.

I also came to the conclusion that more info on the diagnosis was so important because the more I learned the more important my treatment choice would be. If surgery alone wasn't going to cure it because of where my cancer was (mine was pushed up against the prostate wall and possibly in the seminal vesicle area) and radiation was going to be in my future anyway I had to seriously consider radiation as an initial treatment no matter how much it worried me.

Just a quick note on my understanding of the pirads score, at NIH the Dr explained that it is just used to decide on the likelihood that that particular spot on the MRI is cancer. Mine all showed up as pirads 5 also but he said for me it's irrelevant because we already know I have cancer and a significant amount of it. He said it does not tell anything about the gleason score and we did a targeted biopsy to particular areas of the prostate that he thought by looking at the mass on the MRI would probably increase my gleason score which it did from a 3+4 to a 4+3. Also small amounts of low gleason score cells typically does not show up on the MRI, which probably explains why they really did not see anything on the area you had initially biopsied. However, again just my understanding, if you had a large area of low gleason score cells that would show up on the MRI that can still have a high pirads score because it is just saying that that area is likely to some degree to be cancer and not something else.

Bottom line is that new area that showed up is likely to be cancer based on the pirads 5 score but more info as to whether it is likely to have gotten out because it is a more aggressive variety based on gleason score (which again the pirads does not tell) and whether it is in areas that show it is likely to have escaped. This could change your treatment plan but not if you are convinced that surgery and radiation to follow is your best choice. Only you can make that final choice but you should at least speak to some radiation experts associated with the different radiation choices as you would need their expertise any way if radiation following surgery is your plan and they can explain the risk/reward of that choice vs radiation as an initial treatment. But it is soo important that you get the opinions from those who are experts in the prostate cancer field.

Best of luck to you Jim. I know how difficult and stressful this decision making process can be. And who really knows what choice will be the right one for you, you just try to gather information and make a choice and hope for the best. In the long run I waited longer then I wanted to start treatment but I felt I made an informed decision that I was comfortable with in the end....Jim

Hi Jim-
I am sorry you joined us-
I never had the option of surgery, but I can add a few observations.

(1) you asked about high rate of PSA increase examples. My PSA was 19 on March 4 this year. Then came a series of MRI, biopsy, bone scan and CT (and about 10 days of down time so docs can take their kids skiing on spring break, an extra week for antibiotics prior to biopsy due to suspicious urinalysis). MRI (on 4/11) showed 3 x 5 and 1 x 4 PIRADS areas as well as EPE. It only took 8 days to return the MRI-guided biopsy results. On May 9 I began hormone therapy with a PSA of 29.5, giving a PSAdt of ~120 days. I was having pain symptoms throughout abdomen during much of this period due to huge lymph nodes in pelvic and retroperitoneal spaces, easily treated with ibuprofen.


(2) In a recent thread (I cannot recall which) a fellow described an MRI guided biopsy that came back with 4 benign cores in the MRI target, but of the 12 random cores some showed some PCa- go figure.

(3) your doc seems to place emphasis on the high PSA and PIRADS 5 as qualifiers for immediate surgery to presumably keep the horses in the barn, but what about the EPE? To move from PIRADS 4 to PIRADS 5, a focal area needs only to be > 1.5 cm OR have a presence of EPE. If you combine EPE with a Gleason 9 or 10 for the PIRADS 5 area (after a biopsy of course) I am not sure there would be a strong consensus for surgery among docs or forum readers- the possibility that escape has already occurred is not trivial, so your decision is probably not that simple, you may be weighing statistics in the end, so I am a bit perplexed by the confidence of your URO with the data at hand. Although scans/CT are negative, they will not reveal micrometastases, which will only show in lymph node dissection or in PSA > 0 post RP.

(4) Tall Allen has been off line a bit this month for novel writing but he wrote a great response to another thread today that may be very pertinent to your situation (check out the thread initiated by Iamcolumbo). Surgery vs surgery + RT vs RT without surgery. Good numbers to consider with embedded references.

(5) In my mind, it seems important to know the Gleason score of the PIRADS 5 area since it looks like there is EPE from the MRI.

I know how hard it is to wrap your mind around all of the possible therapies and outcomes, all the while carrying the emotional burden of a life-changing event, mostly by yourself from what you have said. I wish you well and peace and calm- it will get easier for a while down the road regardless of which therapy you choose; and cure is certainly what you are aiming for

best of luck1
rf