New guy with questions

Before I started AS, my RO insisted on an MRI...to cross the "T"'s and dot the "I"'s before proceeding...That's an MSKCC standard as far as I know for AS!

You're right that there are lots of Pirads 4s that doesn't show cancer, but I can certainly understand your concern. It is a bummer that you have to have another biopsy just six months later. I could be wrong, but I think the typical AS protocol is an MRI-guided biopsy a year after the first.

Hopefully some of our AS guys will come by and give their thoughts as well. Good luck with the second biopsy!

"Triple Play" is a term some of us here use to refer to IMRT + brachy boost (either seeds or high dose) + ADT (hormone therapy). It's a common treatment for high risk guys. But unless your new biopsy showed some G8 or G9, it would probably be over-treatment for you. And with any luck, you'll still be able to do AS.

If you did end up where you needed treatment, but weren't high risk (which is quite unlikely) I would look at brachytherapy (either seeds of high dose) or SBRT, which is an external radiation treatment that only needs five treatments. And surgery, of course, which is more straightforward.

Well guys another short update. I got the results of the Fusion biopsy and it is very confusing to me. He did 4 cores in the two pi-rads 4 lesions, and 12 more cores to cover entire prostate. 2 cores on pi-rads 4 came back Gleason 6 with 55%, and 5% at the left apex with PNI. The other 2 cores came back atypical? Confusing part is he found 2 additional cores at the base one 35% and one 15% which were both Gleason 6. All cores on the left side, nothing at all found on the right side where my other 3 cores were? We had an 1 hour conversation and he is not comfortable with AS now and he is sending me to an RO on Tuesday for his recommendation. He is concerned that it is growing too fast and I need to make a decision within 2 weeks at our next appointment? He did not mention the PNI at all, I only saw it after I got home and was reviewing the report. I asked about sending the slides to Epstein this time, and he said I could if I wanted too, but he said he did not think it would be downgraded and would probably be upgraded? So I think I will fill the paperwork out Monday and go ahead and get this biopsy sent to Epstein and see what he says and I guess that would be the best thing to do now? It is amazing to me that the ones on the left side were totally missed and it confuses me more that maybe one doctor got the sides missed up with which side they were on because it you flip one report upside down and compare the two it is almost perfect in the same spots other than the base cores on the new one? Any other thoughts or suggestions would be appreciated. Thanks

I've used the blueberry muffin theory of biopsies before. If you were to stick a needle into a blueberry muffin 12 times, there's a lot of luck in how often you hit a blueberry. Now in the case of an MRI-guided biopsy, you actually know where to look. If you could do that with a blueberry muffin, it would certainly increase your chances of hitting a blueberry.

So while I'm not a doctor, I'm to sure how this is evidence that your cancer is fast growing, but it's more a matter of knowing where to poke. Regarding the Epstein second opinion--while you don't want it to be upgraded that's exactly one of the reasons why you want to do it. It's important to know if it's really G6 or not. (And if it is still G6, I would not rule out AS.)

To me, the best news so far is that even with the MRI-guided biopsy you're still a G6...at least pending the second opinion. Good luck with that!

It's possible that the doctor doing the biopsy, might have purposely not biopsied the previous spots on the right side where there was a hit since he knows there is cancer there and that the rest of the right side looks clean. The only way to know is to ask him. It seems that you have sufficient cores and concentration of cancer (55% in one core) to warrant treatment consideration.

Ron, when you get the 2nd opinion, that may shed more light. I think there is still a lot of LDR going on, particularly with lower risk cases. It has the advantage of being pretty much one or two short visits and done--and does generally have a lower side effect profile than surgery.

You could also look into SBRT--which is 5 treatments over a 2 week period. A number of guys here have gone for it, and done well.

Regarding whether AS is a "safe" choice...there's a 20-year AS study from John Hopkins that does show AS is safe for low-risk PCa patients. (Essentially zero difference between treating and going on AS.) If you were in a good AS program, I think your risk would be barely measurable.

At the same time, PCa risk may be totally different than your personal comfort level. If that differs, I totally get it and understand why you would want to treat. If so, my advice would be to look for treatments that minimize your risk of SEs since you have an excellent chance of a cure with any potential treatment.

Ron3107 said...
Pratoman my mistake in the signature PSA was 4.79 at DX not 3.79 so I updated it. I realize the low PSA is probably not the reason for the pain but was mainly interested in the Avodart questions. I had L5 back surgery about 8 years ago to repair the disc, and was also told at that time that I was one of the few lucky ones who had an L6 which I believe is causing some of the low back pain. I was hoping the main symptoms were from the 53cc prostate and that the Avodart would reduce the size and hopefully the PSA. Which I hoped would reduce frequent urination, dribbling, stopping and starting etc. Thanks for your help.

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53 cc is not all that big, mine was 106. But, it is big enough to cause problems, and you might also have some prostatitis associated with it, causing problems. But the reason I am posting: last time I was at y URO, I saw a poster on the wall describing a new procedure they were doing. Rather than a TURP where they cut away excess prostate tissue, they now can go in with a minimally invasive surgery where they simply place some metal spacers which are pulled back by permanent sutures which tug on the spacers(or whatever they were called) which opens the urethra where it was greatly narrowed by the enlarged prostate. That won't help with all of the symptoms of enlarged prostate and/or prostatitis, but it will about cure the problems with difficulty passing urine. You might be interested in asking your doc about Urolift:
https://www.healthline.com/health-news/men-less-invasive-treatment-for-bph-now-fda-approved-091913#3

Somebody said...

One of the main benefits of UroLift is that it offers men with BPH a less-invasive option than open surgery, with no incisions and no cutting or burning away of the prostate tissue. In addition, the results of the procedure can be seen immediately afterwards.

The FDA review was based on two clinical studies of men with BPH who were implanted with two or more UroLift sutures. In both studies, surgeons were able to insert the sutures in 98 percent of cases.

The larger study, published in June in the Journal of Urology, involved 206 men with BPH. The procedure, which is done under local or general anesthesia, took 66 minutes to perform on average.

Twelve months after treatment, men with the UroLift sutures had improved urine flow and were better able to empty their bladders. They also reported a decrease in their symptoms and an increase in their quality of life.
Benefits and Risks of the New Treatment

Other minimally-invasive therapies for BPH also access the prostate through the urethra, making the UroLift system similar in this respect. The other procedures, however, involve cutting or burning away excess prostate tissue. UroLift uses only a needle and suture to pull back the prostate tissue.

UroLift is also less invasive than open surgery, a procedure that requires the surgeon to make an incision in the lower abdomen. open surgery has a greater risk of side effects, but is generally only used for men who have a very large prostate, damage to the bladder, or complicating conditions such as bladder stones.

The side effects reported by men treated with the UroLift system were all minor, and included:

pain or burning during urination
blood in urine
frequent or urgent need to urinate
incomplete emptying of the bladder
decreased flow of urine

Rare complications, however, can occur when the UroLift procedure—or any surgery—is done using general anesthesia, especially in older men or those with serious medical problems. Serious complications may include lung infections, temporary mental confusion, heart attack, stroke, or death.

To answer a few questions guys, I have not received the slide report so far. With the holidays coming up next week they might not make it next week either? Either way I just hope I have them before my 11/29 appointment with urologist. I also saw the Urolift treatment on my doctors wall as well and will ask about it on my next appointment. Urologist also mentioned the 55% core was enough to knock me out of AS along with the bilateral involvement. The way I understand it now, is that the MRI will show the larger lesions and miss the smaller ones. The ones on the right side were small, so either that was the reason they were missed or he tried to miss them on purpose? Went to my GP yesterday and she understands that I do not want surgery, and would prefer to stay on AS. I provided her copies of both biopsies and the MRI report and she did not agree to AS either, she said with my young age that she recommends to go ahead with the seeds and take care of it now. She also said that all the patients that she was seen in her practice had no SE's from seeds and that all were cancer free with low PSA's. So that's 3 doctors now saying treatment NO to AS. I am going to wait on Epstein's report before committing to anything. Urologist said he would bet that they would be upgraded and not downgraded, so I do not if is saying that due to other men who send theirs in, or his opinion only from what he saw on mine? What time period would it be safe to do the seeds after a biopsy? I guessing 6 to 8 weeks would be normal? Anyone have thoughts on that? They offer high does seeds 2 treatments, LDR seeds with IMRT for 5 weeks and IMRT alone for 8 weeks 5 days a week as well as LDR permanent seeds but No cyberknife. As far as the Avodart, all they said was possible 50% reduction of PSA in 6 months, and PSA was 4.79 before and after 6 months of Avodart it was 2.93. So not sure if I need to double that or not?

Post Edited (Ron3107) : 11/16/2018 8:11:30 PM (GMT-7)

Well I have to admit its been a confusing journey so far, as all my research and reading on here says I am a perfect patient for AS. One factor I have not discussed is the money aspect of all of this. My insurance out of pocket max has been met for the year, so that has been influencing my mind as well. With it starting over in Jan it has been putting a rush to treatment decision. I understand treatment may not be possible now before the end of the year so I guess my small savings will take another hit next year regardless of decision? With my wife not working and trying to help her 91 year Mother, the financial side of the story is one that has concerned me as well. I am planning on working till age 67 so I hopefully I can start restoring my small savings and continue this journey without making rash decisions. With losing both parents to cancer and being by their sides all the way, I never thought for a minute that I would be making decisions on my own health with cancer at 54 years old. Guys I do appreciate the input and I am not "Hard Headed" as they say in the South, but this has rocked my world. Sorry for the rambling, and I understand that AS is what I should continue to pursue and hopefully Epstein's report will support that as well. All your input is helping to put my mind at ease and I truly appreciate all your help..