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Posted 10/5/2017 5:23 AM (GMT 0)
Just joined after lurking, reading, and learning for a week. I was only diagnosed
4 weeks ago but sadly my case was high risk from the outset: every core was 90% positive and
all Grade 4. Uro says my urinary retention / bladder issue is very rare, most likely caused by
the enlarged, cancer filled Prostate. Uro estimates my bladder is enlarged to 1000cc's.

Just yesterday he gave me the results of the Bone and CT scan - both negative and show
no evidence of met - he was actually surprised. Yesterday was also when he finally told me
my options based on what they learned. He said based on my being in the high Risk category
he'd normally recommend EBRT/Bracky and 2-3 years of ADT, but he said that won't do anything
for my extreme bladder and retention issue (I'm already at the Max dose of Flomax).

So he really thinks Robotic RP is the best option in my case: for one to address and resolve
the bladder and "can't pee" problem. And, since there's no evidence it spread yet that it might
be my best chance for a full cure.

He was going by the current NCCN guidelines so it would be RP + PLND. Right now he says I'm
a cT2c but highly suspects after surgery it may become a T3 in which case he'd have me get Radiation
and 6 mos of ADT. I did ask about possible "Nerve Sparing" but he said no way: given that my Prostate
is 90% cancer, that means the nerves (which apparently reach into the prostate) are kaput / infected already.

It's all happened so fast, almost numbing, I thought I just had age related BPH. Sure is hard to
realize will have permanent ED and a host of possible SE's like urine and bowel problems, but I guess the
main thing is to still be around. He did say even though will have ED would still be able to experience
orgasms anyway. Very thankful for having found this forum, still learning a lot from so many others.
Posted 10/5/2017 7:46 AM (GMT 0)
Welcome to the forum. Hang in there and the guys on this site will be helpful. Denis
Posted 10/5/2017 11:50 AM (GMT 0)
I think you need to seek some additional assessments. They will either confirm what the one doctor is suggesting and you can move forward with great confidence. Or, they may offer other alternatives to consider that he has not offered. Either way a win for you. How long have you had a full bladder? I see you missed a few years of PSA testing (so did I) and it went up significantly compared to the previous tests (so did mine). Were you treating the bladder problem before the PSA rise in 2017?

You have a low PSA that suggests your very enlarged prostate is not actually 90% cancer. Just because the sampled core is 90% doesn't mean that the entire prostate is 90% made of cancer. If you have an actual tumor of some 57.33cc (63.7cc x 90%) then the PSA should be more like 85-115 based on the PSA expression from Gleason 8. It could be that you have a very rare from of PCa that expresses very little PSA and that needs to be determined.

Clearly you are very high risk and should be investigating aggressive treatment. The best way to start is with the ADT. You are likely to need it no matter what And it will help arrest the cancer for now. Generally, with very high risk surgery, is not indicated as it won't be curative and will also require radiation. Radiation after surgery compounds the already significant negative side effects of surgery. As to removing the prostate to relieve the bladder condition, I definitely would want further assessment before deciding. A very bad situation would be surgery, loss of nerves, SRT, bad side effects and then still with a problem bladder. Using EBT, BT, and ADT would be better for cancer control and lower side effects than surgery. Then see what is needed to sort out the bladder issue.

See a few other specialists including a brachytherapy radiation oncologist to get a complete assessment. Also you might want another read of the slides by Epstein at Johns Hopkins and/or Bostwick and include additional assessments of the cancer to determine whether it is of the more rare kinds that give off very little PSA. This may influence the type of treatment that will be most effective.
Posted 10/5/2017 3:37 PM (GMT 0)
Sorry I am talking to you but you have the right place for info. I can only tell you what I know personally.
I have a large prostate 60cc at BX. Talked with Brachy RO. Can't do LDR Brachy due to prostate being to big to allow placement of the seeds. HDR Brachy is possible so see a specialist for that treatment. Also definitely talk to a RO who does IMRT and another who does SBRT.
Talk and read, Talk and read, Talk and read.
May you be well.
Roger
Posted 10/5/2017 3:49 PM (GMT 0)
Very sorry to hear about your diagnosis. You might be on the right track with what your uro is saying, but I'd really advise you to get a few other opinions first. Even with the aggressive high-risk cases you have some time to make a considered decision about a very major treatment.

The first (and easiest) second opinion to get is another read on your biopsy slides from Johns Hopkins, where they specialize in reading PCa biopsies. With so many positive cores, the second opinion is unlikely to have a major change, but it's so easy to do this that I would certainly want the reassurance that you know exactly what you're dealing with. The "newly diagnosed" sticky explains how to do this.

Next start looking for a few ROs that can speak to the radiation side of the equation. Your uro already mentioned that you might need follow-up radiation. That was also likely in my case so I cut to the chase and started with radiation--the goal was to avoid the SEs of both surgery AND radiation. In particular, it would be good to look at the combination of HDR brachy and IMRT, which several high-risk guys here have successfully had, including myself and JNF who commented above.

That said, the large prostate and voiding issues could certainly make surgery beneficial in your case. If you go that route you want a very experienced surgeon. That indeed could be your uro, but guys here can give you other recommendations if you tell us where you're based.

Good luck to you. It's a tough diagnosis, but lot of us that have had similar tough diagnoses are doing well and you can too.
Posted 10/5/2017 5:28 PM (GMT 0)
I agree that your urinary problems may preclude brachy boost or even IMRT radiation. Your bladder has enlarged due to severe urinary retention. The only way to relieve the problem is by removing the prostate. Your doctor is right that the cancer has probably spread locally and into nearby lymph nodes. He can cut wide and remove as many as he can find, but you may need adjuvant radiation plus systemic therapy anyway.

Your relatively low PSA coupled with Gleason 10 hints at a very virulent type of prostate cancer. For that reason, you are very fortunate that there are no signs of distant metastases.
Posted 10/5/2017 8:53 PM (GMT 0)
Hi Adagio,
With the exception of your PSA, you seem to mirror me almost exactly. I began suffering from noticeable urinary retention in August 2013. Probably started earlier but it would get better. It wasn't until I landed in ER with full urinary retention that I went and saw a urologist. I was immediately diagnosed with Prostate Cancer and a blood test was performed. My PSA was 187.5. Biopsy came back with 11/12 cores with up most at 90% involvement. Bone scan revealed 2 hot spots in my spine but cancer was never confirmed. I had surgery on February 14, 2014 combined with ADT. My Doc cautioned me that my cancer was likely already micro metastatic and subsequent PSA tests confirmed that. After more ADT, Chemo and now Zytiga. I am currently undetectable and just celebrated my 4 year anniversary since diagnosis. There are no guarantees that it has not spread but there is light at the end of the tunnel. So keep the faith and find the best treatment that fits with your overall quality of life expectations.
Posted 10/5/2017 11:19 PM (GMT 0)
Three fives,
How big is your prostate? You can shrink it 50% by taking Casodex for three months. It should also make the radiation more effective.
Posted 10/7/2017 2:14 AM (GMT 0)
I think Adagio's Gleason score is an 8, not a 10.

Have you had an MRI or any imagining done of your prostate?

You might want to get a couple more opinions. If you go for surgery, which seems your likely choice, you'll want to get the best surgeon you can find. Biggest factors in outcomes of surgery is the skill of the surgeon. Get somebody who has done at least 500.
Posted 10/7/2017 2:56 AM (GMT 0)
In his signature, he wrote "GS 8-10 / Grade 4" It's ambiguous. If he meant Grade Group 4, that would mean it was all either Gleason Score 4+4, 5+3 or 3+5. Or perhaps he meant it was all Gleason Grade 4, so it would be be Gleason score 4+4 only. If there was any Gleason 10 (5+5), that is his Gleason score. Perhaps he will clarify. It doesn't really matter - either way he is in the "high risk" category.

(I confess that I am not a fan of Epstein's ISUP Grade Group system, because it often leads to just this kind of confusion)
Posted 10/10/2017 2:31 AM (GMT 0)
Your first post, you mentioned ED and incontinence issues were a concern. I can understand that. I was devastated. I did not find this site till after my RP. I am not as experienced as others here. I did get the RP at City of Hope in LA. The cancer was worse than the biopsy showed. URO took all nerves and lymph nodes. At 6 weeks I was pretty active. At 8 weeks I was running a Cat earth mover all day. At 10 weeks post RP continence is nearly gone. 2 pads a day with very little in them. The first step up into my Cat is 24 inches. I am not sitting at a desk. ED? Sex is very important to me. I am using injections and they are not to bad to take. Takes a little getting used to. Still adjusting dosage. Erections with NO nerves last 1-2 hrs. Orgasm in my case is no where near as good as an ejaculation orgasm. Just release and it is over. But I still have wood to go another round if my partner is agreeable. Just saying, all is not gloom with RP. AND I am going to be here for my grand kids. PSA<.01
Posted 10/10/2017 12:06 PM (GMT 0)
I was also a T2c prior to surgery. I did end up at T3a after surgery with no radiation. 6 years out with undetectable PSA! Best of luck!
Posted 10/10/2017 11:31 PM (GMT 0)
"Just saying, all is not gloom with RP."

Amen to that. 4 months post RP and I'm now completely dry. ED still an issue, but it's manageable, and there are signs of life down there. I find orgasms different, but not worse by any means.

It doesn't get any better than <.01. May it stay that way forever.
Posted 12/22/2017 4:04 AM (GMT 0)
First off want to say thanks for all the replies to my original post, all were very helpful!

Second thing is I hope someone can add me to the "G9 Club" - unfortunately the post surgery pathology upgraded me to G9 and T3b.

Since that original post I was super busy getting ready for my da Vinci RP and trying to get work setup to live without me for awhile, then had my da Vinci RP surgery done as well (in November). Wanted to wait until I finally had my follow up with the surgeon before making my follow up post, and I've updated my sig with what the Doc told me.

In my particular case with extreme bladder retention went with the RP surgery which did resolve that. I'm with Kaiser and my Urologist had been doing nothing but RP surgeries since '03, so luckily he's had a lot of experience. Towards the end I was on the max dose of Flomax which even at the max dose barely helped anymore and due the bladder retention I ended up with infections: super painful epididymitis and orchitis. Happened during the 2 week pre-surgey "no pain meds allowed" period (it figures) and pain was so bad hardly slept for a week (took CIPRO twice/day to resolve).

The pain from the surgery wasn't bad at all and I never even bothered to take any of the pain meds they gave me. The surgeon did cut wide and I lost the nerves, Lymph nodes/sm. Over a month after surgery the Docs are still real concerned about the "surgical connections" to my bladder such that I am still not allowed to start Kegals for another month. My da Vinci surgery was almost 5 hours long - maybe complications due to my bladder having enlarged to twice normal size due the extreme blockage by the enlarged prostate. Had to wait 2 weeks to get the Foley Catheter removed - and they thought about keeping it in for a full month :-(

Luckily incontinence not too bad, primarily stress incontinence, full on ED though - thanks much to oldbeek and others showing what options there are later. Doc also gave me some sindenafil and ordered one of those vacuum devices to try and start "rehab" (even with no nerves).

As a new G9 will post updates as they add treatments and their results. Due to my 30 day post RP PSA test being still high (4.96) they want me to get another PSA test in 2 weeks. Once my surgery heals more (in 2-3 months) they plan to start Adjuvant Radiation and HT (Doc mentioned a possible clinical trial too).

Almost a 10 said...
Hi Adagio,
With the exception of your PSA, you seem to mirror me almost exactly. I began suffering from noticeable urinary retention in August 2013. Probably started earlier but it would get better. It wasn't until I landed in ER with full urinary retention that I went and saw a urologist. I was immediately diagnosed with Prostate Cancer and a blood test was performed. My PSA was 187.5. Biopsy came back with 11/12 cores with up most at 90% involvement. Bone scan revealed 2 hot spots in my spine but cancer was never confirmed. I had surgery on February 14, 2014 combined with ADT. My Doc cautioned me that my cancer was likely already micro metastatic and subsequent PSA tests confirmed that. After more ADT, Chemo and now Zytiga. I am currently undetectable and just celebrated my 4 year anniversary since diagnosis. There are no guarantees that it has not spread but there is light at the end of the tunnel. So keep the faith and find the best treatment that fits with your overall quality of life expectations.

Thanks much for your post Ten! Our situations do seem quite the same and your results provide proof there is hope for sure.

Tall Allen said...
I agree that your urinary problems may preclude brachy boost or even IMRT radiation. Your bladder has enlarged due to severe urinary retention. The only way to relieve the problem is by removing the prostate. Your doctor is right that the cancer has probably spread locally and into nearby lymph nodes. He can cut wide and remove as many as he can find, but you may need adjuvant radiation plus systemic therapy anyway.

Your relatively low PSA coupled with Gleason 10 hints at a very virulent type of prostate cancer. For that reason, you are very fortunate that there are no signs of distant metastases.

TA you were quite right about my PC being of the very virulent type, sure enough post RP pathology upgraded me to G9, T3b and now 30 days post RP still have high PSA. Doc's already plan to start adjuvant radiation along with HT, and they even mentioned adding a new (came out in last 2 years) pill based HT in addition to the shots - have follow up with an Oncologist soon where I guess I'll learn those details.
Posted 12/22/2017 4:21 AM (GMT 0)
Adagio-

Where are you located? In most areas of the US, you can get one of several PET scans to determine whether the cancer has already spread to distant places. If it has, that can spare you the toxicity of adjuvant radiation. The Axumin PET scan is pretty much available everywhere. Insurance should cover it, but they are unpredictable. There are other even more accurate PET scans, but you didn't enter a location in your profile.

I think, given your T3b, GS9, and high persistent PSA that it is very important that you rule out distant mets before proceeding. you have to get the PET scan before you start HT.
Posted 12/22/2017 1:23 PM (GMT 0)
Adagio-

You and I had almost identical numbers although after surgery mine wasn't guite as high as yours but my psa before surgery was three times what yours was. Like TA said I had the scan before they would think about starting ADT or SRT. Mayo likes to wait at least 6 months after surgery to get control of your bladder and 2 months after starting ADT. I would assume that the pill they were talking about is casodex which I would have been put on but the Lupron knocked down my psa so for. Right now I don't have to go on that one. Started SRT this week seems to be going good 5 in 32 more to go. Wishing you the best in that at your next psa it will be undetectable!!

Larry
Posted 12/22/2017 3:17 PM (GMT 0)
Adagio-

Sorry to hear of your difficult diagnosis. At least you've begun the journey towards a cure. I wish you Happy Holidays, and a New Year leading to a lower PSA and a good quality of life for you.

Good luck!
Posted 12/22/2017 8:38 PM (GMT 0)

tennisplayer said...
Adagio-

Sorry to hear of your difficult diagnosis. At least you've begun the journey towards a cure. I wish you Happy Holidays, and a New Year leading to a lower PSA and a good quality of life for you.

Good luck!

Thanks Tennis and wish you Happy Holidays and New Year too!

In retrospect think I am quite lucky I even got this far: for many months I thought I only had age related BPH and under my insurance we can only see specialists by referral. Urination difficulty became so bad finally decided better see my regular Doc and ask for a referral to a Urologist, figuring I'd have to now go thru possible TUFT or other BPH treatments I was dreading.

When I saw my reg Doc even he thought it was just BPH and just gave me a prescription for Flomax and said no need to see a Urologist. For whatever reason, later that very night he called me at home saying he thought about it some more and decided maybe I better see a Urologist after all.. and so my treatment began (and my surprise at it being PC).
Posted 12/22/2017 8:55 PM (GMT 0)

Tall Allen said...
Adagio-

Where are you located? In most areas of the US, you can get one of several PET scans to determine whether the cancer has already spread to distant places. If it has, that can spare you the toxicity of adjuvant radiation. The Axumin PET scan is pretty much available everywhere. Insurance should cover it, but they are unpredictable. There are other even more accurate PET scans, but you didn't enter a location in your profile.

I think, given your T3b, GS9, and high persistent PSA that it is very important that you rule out distant mets before proceeding. you have to get the PET scan before you start HT.

TA,

Thanks so much for that info on getting a PET scan prior to HT, knew nothing about that at all.

I'm in Hawaii and per simple Google searches anyway I haven't seen any evidence that the Axumin PET scan is available over here, however it might possibly be used at some of Kaiser's California locations. This will certainly be something I ask the Kaiser Oncologist when I see him in a couple weeks.

Just doing searches appears the out of pocket cost for those scans seem to range from $2000 to $8900, each! (and that might be just for the per dose 18F Tracer material)

Again doing searches found that there might be some Clinical Trials going on by NIH for Fluciclovine F18 PET scans (I think the same thing?) but none in Hawaii. Think I'd pay my own way there if need be, if I can get into one of those trials, or even one of those more accurate types you mentioned (if they too are doing trials).
Posted 12/22/2017 9:29 PM (GMT 0)
Hey Adagio - sorry about that upgrade. I've added you to the Gleason 9 crew roster:
The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)

We have had some others here with a serious upgrade after RP. It sounds like you did good research leading into that surgery, though sometimes things don't go the way we predict. I hope you can get a good assessment of how localized it may still be. That G9 stuff is high risk for recurrence because the Type 5 cells are pretty easily metastatic; with your persistently elevated PSA it is possible they've taken up residence elsewhere in your system. If so, local radiation would be of little benefit.

Stay with us, ask questions, explore. There are a few here that are quite knowledgeable, and you've got a tiger by the tail there....
Posted 12/22/2017 9:41 PM (GMT 0)
Axumin is getting wider distribution quickly - call the hospital rather than checking websites. I think Kaiser So. Cal offers it now.

if you want to come to California, both UCSF and UCLA offer the Ga-68-pSMA-11 PET/CT. UCLA charges $2650, which is their cost for the indicator.

The one I would most recommend is the free NIH study of DCFPyL PET, which is the best of the bunch. They cover the cost of airfare and accommodations too. Contact: Yolanda McKinney, R.N. (301) 443-6913 [email protected]

Here are the details:
https://clinicaltrials.gov/ct2/show/NCT03181867
Posted 12/22/2017 10:26 PM (GMT 0)
I had the DCFPyL PET Scan at the NIH. It was very easy and all the people there are most accommodating. Do give Yolanda a call. They picked up my airfare, but not my motel.

Good luck and Happy Holidays...
Posted 12/22/2017 10:56 PM (GMT 0)
TA,
I was reading this tread and seen where you mentioned this:
"you have to get the PET scan before you start HT."
Is this a plan that my RO & Uro should have followed in my case?
Had the Lupron then the Axumin Scan. It was clear.
See my signature.
James
Posted 12/23/2017 12:27 AM (GMT 0)
Garyi-
They didn't give you an allowance for meals and lodging? I was once going to do one there where they did that as well, but I had to be there several days. Maybe if it's a one-day test, they don't pay for that. i wish they'd open an NIH West.

JamesA-
It would have been surprising if Axumin found anything at a PSA of 0.12. It would have been even more surprising if it had found anything after the cancer was shrunk with Lupron. There's some evidence that PSMA PET scans are less affected by Lupron, but my guess is the shrinkage in size would still make a big difference.
Posted 12/24/2017 5:14 AM (GMT 0)
Allen....no, they didn't offer and I didn't ask.
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