Just diagnosed

Update:
Just got results back from Dr. Epstein at Johns Hopkins.
They re-affirmed my G6 diagnosis and lowered my cores involved from 4 to 3.
They felt like the 5% involvement in that fourth core was merely abnormal and not cancerous.
Not sure if this is a win but i do feel positive about this news. If anything, it makes me feel better about taking my time and researching my treatment options thoroughly. My slides are now being sent to Prolaris for a round of testing.

Additionally, i have a surgery consult at Oregon Health Science Univ. on 6/18 with Dr. Chris Amling.
If anyone has any experience with him or this hospital please chime in.
He has over 1000 RALPs under his belt and is highly regarded by my Uro....
I'm going to talk to him about a 3TMRI and hear him out on what he thinks of my situation.

Best to you all and thanks again,
BD

Sincere thanks for the perspective and encouragement, mattam.
It's hard to put into words what this forum has meant to me over the last 7-8 months.
For a group of people i wish i'd never met, i feel very blessed to have met you.
Onwards.

Thanks again,

Thanks mufjem.
I'll be insisting on an mpMRI at my consult with Dr. Amling at Oregon Health Science U on 7/18.
I'm bummed they can't get me in sooner, and am going to call to see about cancellations, but it is what it is.
I appreciate the info and you taking the time to reply.

Take care, BD

Michael_T,
Thanks for the reply.
I don't know enough yet to have a good feeling for where I stand on AS.
Deep down, i hope hope hope i can do some length of time on AS.
I think i'll know more when my Prolaris test comes back and i'm able to get an MRI done.
Hopefully i'll have all the pieces to this puzzle by early august.
Mentally, I'm preparing for surgery but have my fingers and toes crossed that my test results are overwhelmingly supportive of an AS stint. If so, i'd like to go that route for as long as it makes sense and i can mentally handle it.

Thanks again all, BD

Mumbo,
Thanks for the kind words and encouragement.
I've been reading up on AS and I agree, it seems the 70% could be a disqualifier....
Oh well, one thing at a time....
Best to you.
BD

beaverduck said...

Mentally, I'm preparing for surgery

BD, first of all I really hope that you get an extended run on AS. Make sure you have a doc that is comfortable with that and has an established protocol. Remember that AS is not "doing nothing" and that follow up testing and monitoring is key to success. Also remember that studies have shown that, if monitored properly, treatment success after AS is just as effective as if one had treated it immediately.

Also, please remember what folks suggested to you on page one of this thread, i.e. to look at alternatives to surgery. Many of us, including me, think surgery is like taking a sledge hammer to a tack for someone with G-6 cancer. Please read Dr. Scholz' books, "Invasion of the Prostate Snatchers" and "The Key to Prostate Cancer". That will give you some valuable perspective as to other treatments. LDR Brachy, HDR Brachy and SBRT are all likely to cure your cancer with a better chance of avoiding onerous side effects. If you decide on treatment, please consider consulting experts in those areas before making a potentially life changing decision.

Good luck.

Jim

Thanks for the recent replies all.

bbqdude,
my Uro is similar to yours i think. he isn't ruling out AS but he isn't comfortable recommending it either. additionally, he is slightly more as a matter of fact about SEs than i would like. he is a caring, good doctor but he believes i should go forward with surgery and deal with the SEs as/if they come.... interesting thing about my Uro - he doesn't do RPs (of any kind) anymore. he believes there are better surgeons than him doing them now and the technology has evolved too much for him to catch up and deliver the best results. he has colleagues at his office and other medical centers in the area that he refers his patients to. not sure why that matters but thought id mention it....
like yours, my wife is open to AS and is hopeful we can do a stint of some length on it. she's an eternal optimist (unlike me) so AS is what she is basing her optimism around. that said, i may not even be a candidate, so we are tempering our enthusiasm and mentally preparing for treatment.
my plan is to continue gathering info. my slides are on their way to Prolaris now and i am hoping to have an MRI within the next 6 weeks. once those two data points are in hand, i'll have a better idea what to think. additionally, i'll be getting my PSA retested at the end of october (one year since this nightmare started...) so i'll have that info too....
yes, we are too young for this but it is what it is. funny how cancer is such an equalizer - whether you're in your mid forties or mid seventies, its a scary mofo. i feel for anyone impacted, regardless of age. i hear you re: the tears. im not handling this as well as i might sound on this forum. its too much. its just too much to take. ugh. best to you man.

Tudpock,
great points re: AS and the importance of being in a structured program with a plan for monitoring and assessing. i've seen some compelling data/studies about AS and long term trends and story lines. i'm trying to avoid hearing what i want to hear but am optimistic for some time on AS.
re: alternatives to surgery, i have a referral from my Uro for an RO that he thinks the world of. i hope to ice an appointment with him in the next few weeks.
I've been meaning to order some books, along with the two you mention, and will try to do that ASAP. i've heard nothing but good things. thanks for the reminder.

ejc61,
i too have heard my 70% might disqualify me from most programs. my fingers are crossed that the other data points will come back favorable enough for me to qualify for some length of time (even if its short - some is better than none). that said, as i mentioned, i'm mentally preparing for treatment and doing as much homework as i can. i'm ****ing overwhelmed and not enjoying this at all but trying to be strong and clear minded.
thanks for the info on timing. its shaping up that my timing on a lot of this stuff will resemble yours.
best to you.

take care all, bd

One of the things that is said here often about AS is this: That AS IS a treatment protocol. One study suggested that about 1/2 of AS patients will need more aggressive treatment within a few years, and about 1/2 will never need anything additional.

Even better, the long term effects are essentially the same: long term prognosis--survival rates, more serious cancers, etc., are no different between those who qualify for AS and choose it vs those who qualify and choose to treat right away.

Consider that everybody here has a different experience and our advice is inevitably biased by it. It seems obvious but maybe not everybody may understand it. This is my experience without advice:
I had surgery, despite I really hated and was afraid of that option. Incontinency for two months that was gradually disappearing. After that, not pads needed. Not erections so far; sad but I can bear it. However, the size of my penis at rest is as it used to be. I would dare to say that maybe it is a bit longer, though I know this is strange and not the common rule. I really needed treatment in spite of my biopsy just showing a bit of G6 in a couple of cores. This was confirmed by my worrisome path report. I had I large prostate, so that radiation as monotherapy was not possible without significant irritative SEs. And I know now, after the path report, that the safer choice would have been a combo of external radiatiion+HBT+ADT should I have opted by the radiation way, but this information was not available before surgery. Therefore, I am between those who do not regret what they decided. I would add I am actually glad, but the word glad and PCa do not mix well.

WeightLoss said...
If one is concerned about ED, ask the surgeon if he can do nerve sparing surgery. It's much more likely if you are G7 (3+4) and below, capsule contained. If you are higher risk or have EPE, you are likely to have all your nerves removed like oldbeek, and there will be no erection. As simple as that...

no, it's really not that simple. the situation may be different when the doctor goes in and nerves must be taken. also, there are guys who purportedly had their nerves spared that have ED.

if you're worried about ED and incontinence -- and you should be -- radiation is a far better choice.

First: PC is cancer and is serious. And, what treatment you choose is personal and based on many factors in your life as well as your condition. I am NOT a doctor.

I read about half the replies and it sound like advice and you are approaching this in a methodical way. GET A SECOND OPINION.

My doctor said I needed a RP within 6-8 weeks and of course, he was the surgeon. I got a second opinion. The diagnosis was changed to Gleason 6. The new doctor gave me an 18 core biop and found about 1/2 mm Gleason 6. He also did the MRI thing which the first doctor did not do. He put me on AS every six months. It has been almost five years. My PSA has ranged from 2.4 to 5. Currently it is is 3.6. The few high numbers were most likely due to a prostate infection. I have had a few over the years.

If you go with AS, don't hesitate to see the doctor between appointments if you have any issues, symptoms or anything that makes you think there is a problem growing.

Looks like you are from Oregon. Are you a Beaver or a Duck? You can't be both.

Good luck from a Pac 12 friend.

BD, obviously, your treatment decision is yours to make, and weighing the various issues is something each of us needs to do based on our own list. What is vital, is to consult with experts in each modality of treatment. Don't take the word of of a surgeon on the shortcomings of radiation and vice versa. It's ok to consider the fuzzier bits as well, such as the length of recover time, how long you're in the hospital, or how many visits you'll need.

There are no guarantees. I'm a 'surgery guy', and I was both continent and sexually functional within 6 weeks. Some will say I was an outlier--but it's a bell curve. Other guys are not so fortunate. If you're looking at surgery, ask your surgeon for his personal score sheet on this one. Most really good and experienced surgeons keep an internal record of that--and are willing to share it with you. Don't hesitate to ask at your consults or bring up your concerns.