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njs

HealingWell Forum
>
Member Profile
Display Name
njs
Profile Created
6/4/2013 10:26 AM
Last Seen
3/6/2019 8:49 PM
Total Posts
293

Last 50 Posts

Advice on obtaining Decipher pre-SRT

Update on this: My friend just returned from his consult at Hopkins. The RO he saw told my friend that if he were 10 years younger recommendation may be different but, given his age and very slow PSA...

3/3/2019 3:21 PM

Prostate Cancer
Advice on obtaining Decipher pre-SRT

Thanks everyone for the inputs so far. My friend has decided he'd like to get an expert 2nd opinion on what to do / not do from a risk-based perspective. His insurance will apparently pay for travel...

1/23/2019 6:24 AM

Prostate Cancer
Advice on obtaining Decipher pre-SRT

I was approached for advice from 75 year old family friend who had RRP in 2001 and just became aware that he is in midst of a BCR (see PSAs below) after his PCP who has been ordering PSAs for last...

1/18/2019 9:46 PM

Prostate Cancer
Two milestones for me + a status update

Congratulations Gedman. You are a great success story!...

1/28/2015 8:39 PM

Prostate Cancer
SRT

Per their most recent joint guidance, the American Urological Association and the American Society for Radiation Oncology recommend that SRT be considered after two consecutive readings of 0.2 (not...

12/26/2014 2:55 PM

Prostate Cancer
Decision Time. Help wanted.

Glad to try to help, Casper. What my research on surgery told me is that experience on the order of hundreds of cases is necessary but not sufficient. Achieving the lowest margin rates also seems to...

12/12/2014 10:07 PM

Prostate Cancer
MRI Endo Coil w/wo Contrast

Pratoman, I just misread your original post I missed the "WITH" and just noticed the "without". Sounds like normal PCa study......

12/12/2014 7:54 PM

Prostate Cancer
Is it worth getting the second BIOPSY opinion

I was initially GS6 but wanted that 2nd opinion to be sure. Some have been downgraded to non-PCa avoiding unnecessary treatment (rare but happens). Some are upgraded. If you were considering active...

12/12/2014 7:39 PM

Prostate Cancer
MRI Endo Coil w/wo Contrast

Its uncomfortable but not terrible, and I didn't have any sedative (just local numbing, IIRC). But I would ask why no contrast (not a "functional" exam showing diffusion)... MRI for prostate is...

12/12/2014 11:27 AM

Prostate Cancer
ATT: njs re Positive Margins

Pubmed is a good place to start. I spent a lot of time searching back when I was diagnosed. Here is a spreadsheet compiling my results (but has not been updated in over a year):...

12/12/2014 11:10 AM

Prostate Cancer
Talked to Doc, Initial Path

Hi Angel, I agree with others that the G6 is GREAT news and, given that, there is no need to panic just due to the positive margin! With that said, if it were me I might want an expert second reading...

12/12/2014 10:29 AM

Prostate Cancer
Decision Time. Help wanted.

Hi Pratoman, Definitely agree that Tewari is one of the 2-3 best RALP guys in terms of published hard numbers... 2.1% (4 of 188) for pT2a and 33.3% (7 of 21) for pT3+ which worked out to 5.3% (11 of...

12/12/2014 9:04 AM

Prostate Cancer
Decision Time. Help wanted.

Hi Casper, One thing to consider with surgery and, perhaps to a slightly lessor extent, Brachytherapy is that the chance of a good outcome (both in terms of cure and side effects) is HIGHLY dependent...

12/11/2014 8:33 PM

Prostate Cancer
Prostate Nodule Detected

Totally agree. Regardless of PSA you need to have the nodule checked out and it seems unlikely a nodule would go away so I'm puzzled what he expects to change in 4 months....

12/24/2013 2:26 PM

Prostate Cancer
Unexpected Reaction to First Penile Injection -- old thread revisited

Sorry to hear of your unpleasant experience Clanda. I am no expert but here are a few thoughts based on what I've learned. Better erections while upright (e.g. standing, kneeling) vs. horizontal and...

12/24/2013 2:07 PM

Prostate Cancer
"Shared Decision Making" What exactly is it? Is there really good value to it?

Quoting further: “In the age of cost-containment and concerns about overtreatment, we can’t assume that involving patients more in treatment decision-making will help solve these problems,” Dr. Katz...

12/17/2013 5:25 PM

Prostate Cancer
Urinary Outcomes Are Significantly Affected by Nerve Sparing Quality During Radical Prostatectomy

I have heard before that nerve recovery is believed to be associated with continence improvement. It makes sense as, besides the erectile nerves, the neurovascular bundles contain nerves running to...

12/17/2013 5:08 PM

Prostate Cancer
Two years post open RP...

Great story, Dude! Congrats on the excellent outcome and being able to move on with your life and family......

12/15/2013 2:16 PM

Prostate Cancer
Struggling Over Final Choice of Surgeon

Hi Hank. It sounds like you've done your homework. Hopefully that included getting hard statistics from both docs you are considering including in particular their positive surgical margin rates. As...

12/11/2013 9:30 PM

Prostate Cancer
1st time injection - alprostadil

I would next try 15 mcg (at most), not 20 mcg. I have found 2-3 mcg can make a big difference and the same dose that gives a 90%/1hr response one time can give a 110%/3hr response the next. From the...

12/10/2013 8:38 PM

Prostate Cancer
42, newly diagnosed and feeling bullied and confused

James sorry about the diagnosis and runaround you are getting but welcome to the forum. There are plenty of knowledgeable guys here to help you sort through it all. Sounds like you are intermediate...

11/25/2013 8:30 PM

Prostate Cancer
Continence changes during the day

My experience was similar. I have been pad free for nearly two months but late in the even I sometimes have a couple drips. I think it is just the pelvic floor muscles fatiguing as the day wears on...

11/24/2013 5:36 PM

Prostate Cancer
Timing of checking PSA after surgery

My understanding is PSA elimination half life is about 2-3 days so 6 weeks (when I was first checked by my local uro) is 14 to 21 half lifes or somewhere between 16,000x and 2,000,000x reduction from...

11/24/2013 8:16 AM

Prostate Cancer
6 Week PSA Test and Pathology Results from Vanderbilt

Those are great results. Congrats. My understanding is that the finding of some perineural invasion (PNI) in the final pathology of entire prostate is not generally considered to be a significant...

11/23/2013 2:49 PM

Prostate Cancer
Bone scan report- talk me off the ledge!

My father was DXed in his 80s with Gleason 8 and his bone scan lit up like a Christmas tree -- due to age and extensive arthritis. His PC was successfully treated with IMRT and never recurred. With...

11/23/2013 12:36 PM

Prostate Cancer
Two weeks post op

I don't think you are being too hard on your doc at all. Many doc are this way but that's no excuse. One of the reason I chose my surgeon was how accessible and responsive he was (and still is). He...

11/23/2013 8:55 AM

Prostate Cancer
new ED cream ??

Most are using compounded medications ("bimix" and "trimix"), which can be more potent and often more well tolerated (less aching) than pure alprostadil. Although Cialis works for me, I've been using...

11/23/2013 8:37 AM

Prostate Cancer
psa post prostatectomy not zero

The examples from the YANA site are interesting but you have to wonder if a couple of them who ended up with HT / chemo were really even true G6 under modern ISUP 2005 grading. In the Donin et. al....

11/22/2013 2:53 PM

Prostate Cancer
Potential Surgeon List

And here are a few other names I've seen come up that I had not considered but seem to be potentially great options: Bruce Dalkin, University of Washington Hospital, Seattle Gerald Andriole,...

11/19/2013 7:23 PM

Prostate Cancer
Potential Surgeon List

Assuming you are referring to me, Mikla. Here is a link to my initial post on HW discussing my thought process and evaluation of many of these doctors:...

11/19/2013 7:01 PM

Prostate Cancer
How long should I wait to decide??

Actually I was offered an opening less than 2 weeks from when I decided, but I opted for a date about 4 weeks out that worked better for me, which worked out to about 8 weeks from biopsy to RRP (but...

11/19/2013 6:58 PM

Prostate Cancer
How long should I wait to decide??

I had two prior inguinal hernia repairs (the most recent being bilateral with mesh). It is often claimed that robotic surgery is better for dealing with these but I preferred open surgery for a...

11/19/2013 6:41 PM

Prostate Cancer
How long should I wait to decide??

There is no evidence to support two weeks being significant in terms of cure rate. Having surgery sooner than 6 weeks from the biopsy before the inflammation can go away may compromise the quality...

11/19/2013 6:29 PM

Prostate Cancer
Happy Dance time - PSA, a new low

Great news. Congrats!...

11/19/2013 5:41 PM

Prostate Cancer
psa post prostatectomy not zero

Hi Melg, While I am not an expert, I can offer some educated speculation. It seems like there are several possibilities: *Some benign prostate tissue was left behind. Notwithstanding the fact that...

11/19/2013 5:36 PM

Prostate Cancer
55 YO, G6 Making Decisions

I think the point is that age, race and T1 stage are likely causal factors for delaying surgery. Clinical stage was apparently controlled for in terms of time to biochemical recurrence: "On...

11/19/2013 5:09 PM

Prostate Cancer
55 YO, G6 Making Decisions

Casey, That's the first time I've ever seen it stated that deferred treatment has been shown to result in better outcomes. I am aware of at least one study that showed the opposite. Can you...

11/19/2013 4:57 PM

Prostate Cancer
New Member of the 42 y/o with PCa Club

Welcome Brewer. Assuming you are GS3+3, your stats are remarkably similar to mine. I was diagnosed at age 40 in March and had surgery about eight weeks later. Now nearly 6 months later I am doing...

11/18/2013 5:56 PM

Prostate Cancer
psa after rp

scrappy, 4 weeks post-op may be a bit early to ensure an undetectable result but, assuming a PSA elimination half life of 2-3 days, this is still between 9 and 14 half lifes or a reduction by...

11/18/2013 5:25 AM

Prostate Cancer
55 YO, G6 Making Decisions

Casey, That's the first time I've ever seen it stated that deferred treatment has been shown to result in better outcomes. I am aware of at least one study that showed the opposite. Can you...

11/18/2013 5:12 AM

Prostate Cancer
55 YO, G6 Making Decisions

Let us know how he explains the downgrade. In any event, you are the exception that shows that GS6 is not always indolent....

11/17/2013 8:21 PM

Prostate Cancer
55 YO, G6 Making Decisions

Casey, That's the first time I've ever seen it stated that deferred treatment has been shown to result in better outcomes. I am aware of at least one study that showed the opposite. Can you...

11/17/2013 8:15 PM

Prostate Cancer
55 YO, G6 Making Decisions

Mikey72, your case is very interesting in a couple of respects: First, the downgrade from GS7 on biopsy to GS6 on final pathology. Was the GS7 ever reviewed by MSK or another expert? Second, the...

11/17/2013 6:04 PM

Prostate Cancer
psa after rp

Welcome scrappy. Sorry to hear this. It would help to know your pre-op PSA and other stats (Gleason score, number of positive cores, clinical stage) but positive nodes do correlate with higher PSA....

11/17/2013 5:54 PM

Prostate Cancer
Decision made-prostatectomy

Congratulations on making the decision. Assuming you are relatively young (bread winner) and in a good surgeon's hands, there is a good chance the side effects will be relatively minimal in severity...

11/16/2013 7:57 PM

Prostate Cancer
help welcome managing incontinence

Hi Dan, It is still early and it is common to plateau with seemingly no progress for a couple weeks at a time. The urgency could be bladder spasms. After having the cath in you need to retrain you...

11/15/2013 4:38 PM

Prostate Cancer
Prostate Cancer Wildcards

Good to hear things went well, Clanda. Wishing you a speedy and full recovery!...

11/13/2013 5:29 AM

Prostate Cancer
Active Surveillance and Insurance

I'm no AS expert, but this statement puzzles me. Isn't everyone on AS low risk (at the outset, that is)? And from what I saw from Hopkins (which, again, has some of the most stringent risk criteria...

11/7/2013 1:37 PM

Prostate Cancer
Active Surveillance and Insurance

Your thought process makes sense. Obviously you need to balance the value to you of deferring treatment and its side effects against the risk of potentially worse side effects and/or unsuccessful...

11/7/2013 6:33 AM

Prostate Cancer
Active Surveillance and Insurance

Welcome AtTheLake. I can't answer your insurance question. Regarding active surveillance you may be aware of this, but in case you are not, I wanted to point out that you fail to meet the Johns...

11/6/2013 9:01 PM

Prostate Cancer
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