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Posted 2/6/2017 9:02 PM (GMT 0)
Hello,

New here.

I had episodes of Hematospermia this fall which sent me to my PC doc. Nothing felt in any DRE. I had never had a PSA check but we thought I should have one. Came out at 20. Went to Urologist and it checked out at 38. So had the biopsy and it came back positive...Gleason 3+4=7 in 50% of one core and 20% of another. Plus other cores with varying amounts of 3+3=6. All in left side of prostate. I'm told my prostate is pretty small at 19.7 ml volume.

So I am leaning toward EBT + hormone treatment after looking at literature and talking to my RO. Bone scan and MRI were negative. I'm 54. Pretty fit. Latest PSA at 24.3 on 2/3/17 at RO.

Any input from others in similar situations would be much appreciated.

I've already altered my diet pretty dramatically after doing research. Cut out meats, chicken, eggs, sugar. Eating more veggies, beans, fruits. Some fish. Drinking green tea, soy. Any comments on dietary front?

I'm not thrilled to be part of this club but already the insights I've gained from lurking here have done a lot for my piece of mind.
Posted 2/6/2017 9:30 PM (GMT 0)
Welcome to the club no one wants to join. However, you have been lurking and know you can find good information here.

Have you considered surgery? It is a viable option.

Forgive me for a lack of knowledge, but is your high PSA the reason why you're leaning towards radiation?
Posted 2/6/2017 9:37 PM (GMT 0)
Hello Gene,
Welcome to the posting world of HW. I'm sorry you have to deal with this crap, but you have obviously done some good research and consultation. Did you send your slides to Epstein for a second look? The reason I ask is that your PSA seems to be rising fairly quickly. It probably wouldn't change the course of tx. though. It's good you got going on HT.
Sorry you had to join the club, but.glad you did.
Beth
Posted 2/6/2017 9:42 PM (GMT 0)
Welcome to the forum. With only G3+4's and G3+3's and negative scan and MRI, it means that you have a good chance to be cured with either surgery or radiation. "Left side only" means at least one side nerve sparing if you go for surgery.
I wouldn't consider HT at this point, SE from HT is not something you want to experience. But I am no doctor. Your high PSA could be investigated more.
First advice on this forum is always to get a second opinion on your biopsies by an expert PCa biopsy pathologist. Get that done!
Posted 2/6/2017 10:04 PM (GMT 0)

tennisplayer said...
Welcome to the club no one wants to join. However, you have been lurking and know you can find good information here.

Have you considered surgery? It is a viable option.

Forgive me for a lack of knowledge, but is your high PSA the reason why you're leaning towards radiation?

According to my RO the PSA number puts me in a higher risk category. The PSA has been: 20 on 12/06/16, 38 on 12/27/16, and 24.3 on 02/03/17. The PSA of 38 was done immediately after the urologist gave me a DRE - so maybe an anomaly?

I did a course of antibiotics - doxycycline for 3 weeks 12/07 to 12/27 - I guess to see if there was an infection component that was raising the PSA.

So the RO believes my case warrants radiation + HT due to high PSA, Gleason and my age. I'm sure some may have a different opinion.
Posted 2/6/2017 10:08 PM (GMT 0)
Hi gene62 and sorry you have to be hear. What stands out about your diagnosis is the very high PSA that you wouldn't normally associate with a G6 or G7 diagnosis. Did either the uro or RO give you any guidance on that? Did they do anything re antibiotics to check for an infection? I also agree with Beth's comment that you should send the biopsy slides to Johns Hopkins for a second opinion. The newly diagnosed sticky explains how to do that.

Assuming that the PSA is not a sign of a higher grade cancer lurking, I agree with Gemlin's comment above that HT would not normally be recommended with radiation. Unless maybe the RO is doing that due to the high PSA?

Also, what kind of radiation are you looking at? IMRT or SBRT?

Most important--good luck to you as you work to beat this thing!
Posted 2/6/2017 10:12 PM (GMT 0)

Gemlin said...
Welcome to the forum. With only G3+4's and G3+3's and negative scan and MRI, it means that you have a good chance to be cured with either surgery or radiation. "Left side only" means at least one side nerve sparing if you go for surgery.
I wouldn't consider HT at this point, SE from HT is not something you want to experience. But I am no doctor. Your high PSA could be investigated more.
First advice on this forum is always to get a second opinion on your biopsies by an expert PCa biopsy pathologist. Get that done!

Good point on the 2nd opinion and I have seen that often here on the board. I'm in Va. I guess it doesn't matter who I have it sent to (in terms of location) but are there one or two recommendations?

I have been told the SE aren't great from HT but so far HT in combo with the RT seems to offer highest likelihood of eradication. Per some stats on paper - BJU International 109 Supplement 1 from 2012: Comparative analysis of prostate-specific antigen free survival outcomes for patients with low, intermediate and high risk prostate cancer treatment by radical therapy. Results from the Prostate Cancer Results Study Group. And my RO.

Are there more recent studies that discount this one?
Posted 2/6/2017 10:18 PM (GMT 0)

Michael_T said...
Hi gene62 and sorry you have to be hear. What stands out about your diagnosis is the very high PSA that you wouldn't normally associate with a G6 or G7 diagnosis. Did either the uro or RO give you any guidance on that? Did they do anything re antibiotics to check for an infection? I also agree with Beth's comment that you should send the biopsy slides to Johns Hopkins for a second opinion. The newly diagnosed sticky explains how to do that.

Assuming that the PSA is not a sign of a higher grade cancer lurking, I agree with Gemlin's comment above that HT would not normally be recommended with radiation. Unless maybe the RO is doing that due to the high PSA?

Also, what kind of radiation are you looking at? IMRT or SBRT?

Most important--good luck to you as you work to beat this thing!

Well the radiation would be IMRT. I guess the PSA is difficult - not sure how far to dig with respect to possible infection or prostatitis or other issue driving it up. I understand it is high for the Gleason diagnosis. I was sure the cancer grade would be worse when I saw what my # usually correlates to. Maybe there could be higher grade cancer in there that they didn't pick up? 12 cores. 6 of them positive. All on left. But yes, so far the basket I'm being thrown in is due mostly to high PSA.

So Johns Hopkins is the place to send the cores to? For what it's worth - the lab that did mine is PRW. Anyone heard of them? In Charlottesville, VA.
Posted 2/6/2017 10:59 PM (GMT 0)
Johns Hopkins (Dr Epstein) is probably your best place to send the slides for a second opinion. All they do is read PCa slides, while other labs are looking at all sorts of samples. It's quick and easy.

I'm not one of the guys here that can quote studies, but I was under the impression that adding HT didn't show a benefit in guys that aren't high risk. Again, I don't know if your high PSA might change that calculus. But I certainly wouldn't under-estimate the SEs of HT. It's tolerable, but I can attest to the fact that it's not a whole lot of fun. When I was on it, I felt 15 years older.

If I could make a suggestion, in addition to IMRT you should also look at SBRT, which only uses five sessions instead of IMRT's (usual) 35 or so. Also, you can check out brachytherapy if you want to investigate the other radiation options.
Posted 2/7/2017 12:45 AM (GMT 0)
Higene62,

You are right that PSA over 20 puts you into the high risk category, especially with your small prostate, but I think a bit more scrutiny is required. Getting a second read from Epstein is a great idea.

The fact that you had hematospermia may be an indicator of prostatitis, or perhaps some kind of urinary tract obstruction. Did the MRI identify any obstruction in the transition zone ? Was a cystoscopy done to check for obstruction or bladder stones? Are you suffering from significant urinary retention? I'm asking these questions to try to understand if there are possibly other causes for the very high PSA. This is important because it may change your treatment options change.

ADT has never been found to be a useful adjunct to radiation in intermediate risk patients when the Gleason score is 3+4 or less, and when cancer is unilateral. So if you can attribute the high PSA to obstructive causes, you can probably do just as well without ADT.

www.redjournal.org/article/S0360-3016(12)00856-5/abstract
www.redjournal.org/article/S0360-3016(11)03443-2/abstract

I think surgery can be problematic for prostates that small, because they are sometimes difficult to remove cleanly from the prostate bed. That may have been shown on your MRI.

As for your radiation options, I think you can eliminate low dose rate brachytherapy (seeds) because your prostate is too small:
www.brachyjournal.com/article/S1538-4721(11)00323-0/abstract

The other one I'd eliminate is conventionally fractionated IMRT (the one you are leaning towards). In the last couple of years, a series of clinical trials have shown that there is no advantage in going for the conventionally fractionated treatment schedule (40-44 treatments). Hypofractionated IMRT can accomplish the same thing in much less time.

If you are indeed high risk, the best option may be a combination therapy of 25 IMRT treatments with a brachytherapy boost to the prostate. SBRT and HDR brachytherapy as monotherapies have been used experimentally for high risk patients, but are excellent choices for intermediate risk patients.

Where are you located?
Posted 2/7/2017 12:50 AM (GMT 0)
I forgot to ask: did the biopsy show evidence of acute or chronic inflammation? Is your neutrophil count normal? What about kidney function?
Posted 2/7/2017 4:12 PM (GMT 0)

Tall Allen said...
Higene62,

You are right that PSA over 20 puts you into the high risk category, especially with your small prostate, but I think a bit more scrutiny is required. Getting a second read from Epstein is a great idea.

The fact that you had hematospermia may be an indicator of prostatitis, or perhaps some kind of urinary tract obstruction. Did the MRI identify any obstruction in the transition zone ? Was a cystoscopy done to check for obstruction or bladder stones? Are you suffering from significant urinary retention? I'm asking these questions to try to understand if there are possibly other causes for the very high PSA. This is important because it may change your treatment options change.

ADT has never been found to be a useful adjunct to radiation in intermediate risk patients when the Gleason score is 3+4 or less, and when cancer is unilateral. So if you can attribute the high PSA to obstructive causes, you can probably do just as well without ADT.

www.redjournal.org/article/S0360-3016(12)00856-5/abstract
www.redjournal.org/article/S0360-3016(11)03443-2/abstract

I think surgery can be problematic for prostates that small, because they are sometimes difficult to remove cleanly from the prostate bed. That may have been shown on your MRI.

As for your radiation options, I think you can eliminate low dose rate brachytherapy (seeds) because your prostate is too small:
www.brachyjournal.com/article/S1538-4721(11)00323-0/abstract

The other one I'd eliminate is conventionally fractionated IMRT (the one you are leaning towards). In the last couple of years, a series of clinical trials have shown that there is no advantage in going for the conventionally fractionated treatment schedule (40-44 treatments). Hypofractionated IMRT can accomplish the same thing in much less time.

If you are indeed high risk, the best option may be a combination therapy of 25 IMRT treatments with a brachytherapy boost to the prostate. SBRT and HDR brachytherapy as monotherapies have been used experimentally for high risk patients, but are excellent choices for intermediate risk patients.

Where are you located?

Thank you very much for all that info and insight! I did see a new urologist today who agrees that the high PSA doesn't really jibe with grade of cancer. And the no. went from 20 at beg. of nov to 38 at dec 27 to 24.3 at Feb 3. And the biopsy was Jan 18. He thinks it odd that the PSA coming back down this soon after biopsy. And wants to investigate a bit more. I don't think the MRI showed obstruction. Haven't had a cytoscopy. No significant urinary retention. The Urologist suggested some type of infarc or maybe still infection so he wants to do a course of cipro and test PSA again in 2 weeks. Also suggests cutting me open to take some lymph nodes (not laparoscopically) to get an even better idea of whether disease has spread (some of this predicated on what the PSA is doing). Definitely going to get a 2nd opinion on the slides.

And will investigate the treatment options more fully too!
Posted 2/7/2017 4:19 PM (GMT 0)
I'm glad you're doing that follow-up and getting more info. Taking the lymph nodes seems to be a strong step, although admittedly this is way beyond my sphere of knowledge. But glad you're digging in on this.
Posted 2/27/2017 4:38 AM (GMT 0)
So updated my sig a little - was wrong on some dates and there is a more recent psa. The local hospital had a go at the slides and gave me 2 cores at 3+4. I guess that doesn't change much of anything.

My psa seems to be holding at around 20 - the latest taken after 2 weeks of cipro just in case. The 38 taken in house at 1st uro seems an aberration. I now have a different uro and all other psa tests done by local hospital lab including the very first done at end of 11/16.

So my ro still thinking ht and imrt as she considers this high risk based on the psa at 20. My uro still saying some kind of mini lap of lymph nodes might be worthwhile to get better idea if it has spread. Ro says this wouldn't change her treatment of me unless a + node then she'd give higher dose of rad.

Anyone else had this lymph node dissection prior to treatment? I still haven't had my biopsy slides looked at by outside expert but they were gone over by local hospital Sentara MJH. Should I still get another opinion?

I don't really want to wait much longer on treatment but still not 100% sure the ht and rad are the way to go. I have read that rp doesn't provide any added benefit for someone in high risk category. Thoughts on that?

Any other ideas or comments? I really appreciate the input.
Posted 2/27/2017 4:56 AM (GMT 0)

Tall Allen said...
Higene62,

You are right that PSA over 20 puts you into the high risk category, especially with your small prostate, but I think a bit more scrutiny is required. Getting a second read from Epstein is a great idea.

The fact that you had hematospermia may be an indicator of prostatitis, or perhaps some kind of urinary tract obstruction. Did the MRI identify any obstruction in the transition zone ? Was a cystoscopy done to check for obstruction or bladder stones? Are you suffering from significant urinary retention? I'm asking these questions to try to understand if there are possibly other causes for the very high PSA. This is important because it may change your treatment options change.

ADT has never been found to be a useful adjunct to radiation in intermediate risk patients when the Gleason score is 3+4 or less, and when cancer is unilateral. So if you can attribute the high PSA to obstructive causes, you can probably do just as well without ADT.

www.redjournal.org/article/S0360-3016(12)00856-5/abstract
www.redjournal.org/article/S0360-3016(11)03443-2/abstract

I think surgery can be problematic for prostates that small, because they are sometimes difficult to remove cleanly from the prostate bed. That may have been shown on your MRI.

As for your radiation options, I think you can eliminate low dose rate brachytherapy (seeds) because your prostate is too small:
www.brachyjournal.com/article/S1538-4721(11)00323-0/abstract

The other one I'd eliminate is conventionally fractionated IMRT (the one you are leaning towards). In the last couple of years, a series of clinical trials have shown that there is no advantage in going for the conventionally fractionated treatment schedule (40-44 treatments). Hypofractionated IMRT can accomplish the same thing in much less time.

If you are indeed high risk, the best option may be a combination therapy of 25 IMRT treatments with a brachytherapy boost to the prostate. SBRT and HDR brachytherapy as monotherapies have been used experimentally for high risk patients, but are excellent choices for intermediate risk patients.

Where are you located?

Sorry I didn't really answer all your questions. I am in Charlottesville Va. As to retention I don't think I have a problem - I do dribble a little after peeing and I don't have the stream I used to. I might get up 1 or 2 times a night to pee. I lately have had what feels similar to a muscle strain or pull from groin area up into abdomen when I do certain movements. Probably not related. None of the docs have suggested cytoscopy. The guy who read my MRI had trouble even seeing any irregularity in the prostate and I don't believe he saw anything else untoward.
Posted 2/27/2017 1:58 PM (GMT 0)

gene62 said...
...So my ro still thinking ht and imrt as she considers this high risk based on the psa at 20. My uro still saying some kind of mini lap of lymph nodes might be worthwhile to get better idea if it has spread. Ro says this wouldn't change her treatment of me unless a + node then she'd give higher dose of rad.

Anyone else had this lymph node dissection prior to treatment? I still haven't had my biopsy slides looked at by outside expert but they were gone over by local hospital Sentara MJH. Should I still get another opinion?....


I had RALP with 44 lymph nodes excised and ONE of 44 was positive. Your urologist wanting to pull out a few lymph nodes sounds unnecessary to me and hit or miss. My urologist sent off my pathology slides for a Decipher test to determine my risk factor (which turned out to be higher risk.) Based on the positive lymph node and the Decipher results I went on to hormone therapy and then radiation.

It would be a great idea to get your slides reread by a specialist. I was originally classified as a 3+3, then MD Anderson graded it as a 3+4, then pathology bumped it up to a 4+3.
Posted 2/27/2017 2:05 PM (GMT 0)

John_TX said...

gene62 said...
...So my ro still thinking ht and imrt as she considers this high risk based on the psa at 20. My uro still saying some kind of mini lap of lymph nodes might be worthwhile to get better idea if it has spread. Ro says this wouldn't change her treatment of me unless a + node then she'd give higher dose of rad.

Anyone else had this lymph node dissection prior to treatment? I still haven't had my biopsy slides looked at by outside expert but they were gone over by local hospital Sentara MJH. Should I still get another opinion?....


I had RALP with 44 lymph nodes excised and ONE of 44 was positive. Your urologist wanting to pull out a few lymph nodes sounds unnecessary to me and hit or miss. My urologist sent off my pathology slides for a Decipher test to determine my risk factor (which turned out to be higher risk.) Based on the positive lymph node and the Decipher results I went on to hormone therapy and then radiation.

It would be a great idea to get your slides reread by a specialist. I was originally classified as a 3+3, then MD Anderson graded it as a 3+4, then pathology bumped it up to a 4+3.

That makes sense. And if no other cause for my high psa is found then it will be high risk and I will likely just go on hormone therapy and radiation which should get after whatever might be there.
Posted 2/27/2017 8:35 PM (GMT 0)
When PSA goes from 20 to 38 to 20, that "see saw" is indicative of prostatitis, which is probably contributing to your elevated PSA. Sometimes the biopsy report will mention evidence of acute or chronic inflammation - was that mentioned?
Posted 2/27/2017 9:05 PM (GMT 0)

Tall Allen said...
When PSA goes from 20 to 38 to 20, that "see saw" is indicative of prostatitis, which is probably contributing to your elevated PSA. Sometimes the biopsy report will mention evidence of acute or chronic inflammation - was that mentioned?

I believe the MRI may have mentioned some prostatitis. I will ask the doc. The biopsy report does not. It is pretty scant really. I've taken antibiotics which haven't done anything. What else to do to rule out prostatitis as a component?
Posted 2/27/2017 9:15 PM (GMT 0)
do the Epstein second opinion

mel
Posted 2/27/2017 9:15 PM (GMT 0)
The only thing that explains the PSA pattern is prostatitis. PSA from PC may fluctuate a little bit, but never that much. Antibiotics typically do little. I suggest you have your biopsy slides re-read by Epstein at Johns Hopkins - he may see it there. If your MRI noted inflamed tissue, that is prostatitis, and you have to rule it in.
Posted 2/27/2017 9:28 PM (GMT 0)

Tall Allen said...
The only thing that explains the PSA pattern is prostatitis. PSA from PC may fluctuate a little bit, but never that much. Antibiotics typically do little. I suggest you have your biopsy slides re-read by Epstein at Johns Hopkins - he may see it there. If your MRI noted inflamed tissue, that is prostatitis, and you have to rule it in.


Would the fact that the 38 came immediately after a dre make a difference? Otherwise fairly consistent and the 24.3 was not too long after the biopsy.
Posted 2/27/2017 9:37 PM (GMT 0)
It probably does not make a difference that the PSA was soon after a DRE. The biopsy would have an effect.

www.jurology.com/article/S0022-5347(01)65321-7/abstract
onlinelibrary.wiley.com/doi/10.1111/j.1442-2042.2006.01445.x/abstract
/www.ncbi.nlm.nih.gov/pmc/articles/PMC4524270/
onlinelibrary.wiley.com/doi/10.1046/j.1464-410x.2000.00709.x/abstract
Posted 2/27/2017 10:36 PM (GMT 0)
Hi gene62 -

Sorry you have to deal with this.

There's good advice here and Tall Allen is a wonderful resource to so many of us.

I would add that you might seek the opinion a second prostate cancer RO re treatment - or maybe one from Dr. Kwon at Mayo of someone of similar stature. You may be able to do this by sending lab reports and consulting on the telephone (?) Perhaps others here could recommend someone.

You've a big decision and your first shot at cancer is generally your best opportunity for long term success.

I guess I want to caution that we're a well-meaning PCa community - but we don't have medical degrees. Your disease profile is unusual.

Best to you
Wilderness
Posted 2/27/2017 11:52 PM (GMT 0)

Wilderness said...
Hi gene62 -

Sorry you have to deal with this.

There's good advice here and Tall Allen is a wonderful resource to so many of us.

I would add that you might seek the opinion a second prostate cancer RO re treatment - or maybe one from Dr. Kwon at Mayo of someone of similar stature. You may be able to do this by sending lab reports and consulting on the telephone (?) Perhaps others here could recommend someone.

You've a big decision and your first shot at cancer is generally your best opportunity for long term success.

I guess I want to caution that we're a well-meaning PCa community - but we don't have medical degrees. Your disease profile is unusual.

Best to you
Wilderness


I will submit slides to Epstein as Tall Allen has suggested multiple times. Going to get that going tomorrow. I realize you aren't all docs but man there is a serious body of knowledge here! smile

What I find myself thinking about are the guys that can't or don't get online for resources like this and those who can't avail themselves of best care due to being uninsured or fiscally challenged. Then there are those who just blindly trust in whatever system they are in without questioning things.
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