New Member, just given my options

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Adagio
New Member


Date Joined Oct 2017
Total Posts : 1
   Posted 10/4/2017 11:23 PM (GMT -6)   
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.
Age at Dx. 63 (diagnosed 4 weeks ago), est. stage cT2c
9/6/2017 Biopsy: All cores 90% positive
GS 8-10 / Grade 4 , Prostate 63.7 cc's
9/20/2017: Bone Scan: negative, 9/29/2017: CT scan negative
Bladder remains 80% full at all times
PSA Values: 3/2005: 0.62
1/2009: 1.48
2/2010: 0.75
1/2011: 0.99
5/2013: 1.91
6/2014: 1.39
7/26/2017: 4.61
8/30/2017: 6.82

Subdenis
Regular Member


Date Joined Aug 2017
Total Posts : 164
   Posted 10/5/2017 1:46 AM (GMT -6)   
Welcome to the forum. Hang in there and the guys on this site will be helpful. Denis
65YO healthy man, PSA 4.1 for couple years PSA 5/17 4.6, MPMRI, 5/17 showed lesion. 13 core biopsy 3 positive 3+3 and one positive in a lesion, may be overlap All cores less than 30% 8/17 - the second opinion Yale pathology shows a small amount of (3+4) in one core, < 5%, decipher test shows intermediate risks, looking at treatment options. MRI in 11/17 to see if there are changes. Thanks Denis

JNF
Veteran Member


Date Joined Dec 2010
Total Posts : 3345
   Posted 10/5/2017 5:50 AM (GMT -6)   
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.
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard and Jalyn started on 10-7-2010. IMRT to prostate and lymph nodes started on 11-8-2010, HDR Brachytherapy December 6 and 13, 2010.
PSA < .1 since February 2011

three 5's and a jack
Regular Member


Date Joined Jul 2017
Total Posts : 124
   Posted 10/5/2017 9:37 AM (GMT -6)   
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
Looking for the 4th 5
69yo weight 7/1-283# on 9/1-227# projected 190# by treatment time
PSA 6.01 6/17
BX 8/04/17 DX 8/11/17 5/16 cores
L mid/base 4/6 4+3=7 25%
L apex 1/2 3+4=7 30%
Sec opinion from UofW same GS7 but they called the overall a 3+4=7
Decided on SBRT at Swedish in Seattle with Dr. Meier.
Looks like the first week or two of Dec.

Michael_T
Veteran Member


Date Joined Sep 2012
Total Posts : 2452
   Posted 10/5/2017 9:49 AM (GMT -6)   
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.
Age 56, Diagnosed at 51
PSA 9.6, Gleason: 9 (5+4), three 7s (3+4)
Chose triple play of HDR brachy, IMRT and HT (Casodex, Lupron and Zytiga)
Completed HT (18 months) in April 2014
3/17: T = 167, PSA = 0.13

Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 8593
   Posted 10/5/2017 11:28 AM (GMT -6)   
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.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

Almost a 10
Veteran Member


Date Joined Mar 2014
Total Posts : 861
   Posted 10/5/2017 2:53 PM (GMT -6)   
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.
11/13 psa 240
DX 10/2013 PSA 187.5
PSA HIST 07/11,3.31;3/10,1.87,3/06,.87
Biopsy 10/28/13; 11/12 cores positive gs 9 (4+5)
BNSCN 12/09/2013 2 hot spots in spine
ADT 12/17/2013 22mg lupr, 50 mg Cas
BN biopsy 01/09/2013 neg
RALP 2/19/14 NN,LVI,Path T3BNX,MX, pros size 4.2 X 4 X 3 cm, 31 grm.Post Op PSA 3/14 .6, 6/14<.1;9/8,;.6;12/8, 1.2;3/9/15 3.9;6/2/15 23
12/14 CT SCAN; 1/15 BNSC

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4138
   Posted 10/5/2017 5:19 PM (GMT -6)   
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.
70 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, 4 weeks of urinary frequency and urgency; no side affects since then. 6 years of psa's all at <0.1.

prostate begone
Regular Member


Date Joined Sep 2017
Total Posts : 41
   Posted 10/6/2017 8:14 PM (GMT -6)   
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.
62 yrs
PSA: 2/4/15: 3.5;
1/21/16: 3.8
2/13/17: 5.1
3/27/17: 5.45
3/27/17: 5.5
4/17/17: 2 of 16 pos., 15 and 4 percent. GS 8.
Bone Scan clear.
Robotic RP May 24, 2017, NYU Hospital, Samir Taneja M.D.
Margins clear, SV and LN negative, Focal EPE, GS 4+5
Prostate 44.6 grams, tumor 5% of prostate
1 pad a day after about 3 weeks. ED near total.
7/26/17 PSA <.01
9/7/17 .01

Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 8593
   Posted 10/6/2017 8:56 PM (GMT -6)   
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)
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

oldbeek
Regular Member


Date Joined Sep 2017
Total Posts : 43
   Posted 10/9/2017 8:31 PM (GMT -6)   
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

kwoo64
Regular Member


Date Joined Nov 2012
Total Posts : 38
   Posted 10/10/2017 6:06 AM (GMT -6)   
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!
Diagnosed in February 2011 at 47
Clinical Report: PSA 3.7 Gleason 7, 3+3 and 3+4, T2C, 8 out 12 cores positive
Davinci Robotic Surgery in August 2011 at University of Ky
Path Report: pT3a, 3+4 and 4+3, no radiation
Negative Lymph Nodes, Margins and Vesicles
Extensive Perineural Invasion
Both nerves spared except 15% on one side, still some ED
Undetectable PSA since at <0.03

prostate begone
Regular Member


Date Joined Sep 2017
Total Posts : 41
   Posted 10/10/2017 5:31 PM (GMT -6)   
"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.
62 yrs
PSA: 2/4/15: 3.5;
1/21/16: 3.8
2/13/17: 5.1
3/27/17: 5.45
3/27/17: 5.5
4/17/17: 2 of 16 pos., 15 and 4 percent. GS 8.
Bone Scan clear.
Robotic RP May 24, 2017, NYU Hospital, Samir Taneja M.D.
Margins clear, SV and LN negative, Focal EPE, GS 4+5
Prostate 44.6 grams, tumor 5% of prostate
1 pad a day after about 3 weeks. ED near total.
7/26/17 PSA <.01
9/7/17 .01
10/7/17 .01
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, October 19, 2017 3:28 AM (GMT -6)
There are a total of 2,884,040 posts in 316,459 threads.
View Active Threads


Who's Online
This forum has 157581 registered members. Please welcome our newest member, kellyaite.
249 Guest(s), 3 Registered Member(s) are currently online.  Details
Turboz, delta30, getting by


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer