Just diagnosed.

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Casper319
Veteran Member


Date Joined Apr 2011
Total Posts : 771
   Posted 4/13/2011 1:00 AM (GMT -6)   
Hi, My name is chris and was just diagnosed with prostate cancer.  Im 50 yrs old and retired army. I had a PSA level of 94...my uroligist put me on Cipro for 2 weeks and it went down to 84.
 
He recommened a Biopsy which came back as positive. 10 of 12 samples were malignant. He told me they were all 8 or 9s on the gleason score. I know this is very high and he said I would likely have to have my prostate removed which is really depressing me due to my active sex life. I read and hear that 80% of all men who have ths surgery are impotent or Erectile dysfunction.  I have Military health coverage (Tricare)  which its all covered but they wont cover other treatments like the Ultra wave thing they do in Canada to save your prostate. 
 
Today I had the CT scan on my body and thursday I get the bone scan. 
 
Really not looking forward to a prostate removal...especially after reading posts here...LOL
 
seems like a lot of pain and misery...LOL.  I guess if  can go thru 20 years in the Army I can go through this though. I just feel that my doctor could give a rats a%& about my sex life. When I brought up the 80% impotency rate to him he looked at me strange and said that doesnt matter....sex life means nothing at this point its about your life.
 
I am seriously debating whether I should suck up the cancer for the next few years and have an active sex life or do the surgery.  Call me crazy but I almost feel like I would rather live 3 more years with an active sex life with my wife than 15 years with no sex.  Im too young to lose this.  Any of you had the same thoughts....maybe I'm being selfish.

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/13/2011 1:09 AM (GMT -6)   
Hi. First off all, sorry about your news. You seem to be handling it very well. Perhaps a benefit of being a military man.

I'm not sure you're an ideal candidate with your scores as I assume you'll also need radiation. I may be way off base on this but other here with similar scores will advise. Perhaps surgery first is the prudent course, I don't know.

I ad surgery and if it's any consolation, I can tell you that I have absolutely no issues with urinary function and I have sex and get complete erections with and without meds.

Not sure where you got those numbers. It's true many experience setbacks, but even in those cases most regain ability to get an erection within a year or two at most.

If you do have surgery, what is critical is finding the best possible surgeon. In my opinion, and that of many others, the amount of surgeries a surgeon performs correlates to his skill and thus his chances of sparring the nerves needed for such things.

If you decide on surgery, do your research and find the best of the best in your area. That's what I did.

You won't lose it. But I agree with part of what your doc says, curing is should be goal #1. But again, I'm not sure surgery is the course of action for someone in your shoes. Radiation might be. Just know that with radiation often comes HT and that too impacts libido for a while and the radiation itself can also cause ED in some cases.

Good luck.

Casper319
Veteran Member


Date Joined Apr 2011
Total Posts : 771
   Posted 4/13/2011 1:14 AM (GMT -6)   
Thank you, I read that stat somewhere on a web site....I think Web MD or something. I also read about the nerves that need to be spared for continued sex life. I'm not sure yet of my treatment as I have not gotten the CT or bone scan yet but it is all happening quick. Thank you for your info, chris

Ausboy
Regular Member


Date Joined Mar 2011
Total Posts : 92
   Posted 4/13/2011 3:21 AM (GMT -6)   
Hi Chris
Sorry to hear of your recent diagnosis, it's a real shock early on, it's overwhelming and hard to work thru it all in the beginning. I am your age and just had my prostate extracted thru a little hole above my belly button and good riddance to it I say. You will need to wait to see what next round of tests show before seeing what your options are, as far as not seeking a cure if it's put on the table, for me it was a no brainer, I have three kids, a beautiful understanding wife, a loving extended family, heaps of mates, a good job, a car I enjoy working on, a boat that I go deep sea fishing in, a lawn that looks good when I mow it, and a great big country to explore when I get the time!
So yes when I weighed up the options, it took all of two seconds after I was told I have a good chance of a cure and a possibility of side effects which can be quite successfully treated. My doctor said because of the volume of cancer and location he would not do a total nerve sparing op, he said he would save about 50% on each side if all looked good. post op that is what happened a partial nerve sparing, with clear margins and a good chance of long term cure, but who knows first rule with PC > "there are no rules" if you look up YANA you can read about a whole lot of guys and the path they chose. I wish you the very best on your journey.
age 49, dx 21-01-2011 PSA 5.6
12 cores all positive >80% in some, Gleason 3+3=6, T2B
RALP 10-03-2011, post OP pathology, Gleason 4+3=7 and 1% 5+4=9
Prostate 50g, 48mmx40mmx40mm, largest tumor 48mmx34mmx24mm, extensive PIN also present, EPE left apex .2mm, perineural invasion, clear margins closest was .7mm, lymph nodes not checked.
path stage pT3A Nx Mx R0
post OP PSA ? 11/5/2011

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 4/13/2011 5:52 AM (GMT -6)   
Casper, I read your post and wonder if your wife agrees with you about an active sex life vs. 15 years of "no sex." As a wife, I would grab a frying pan and bonk my John over the head if I knew he had felt that way (just kidding)!

Yes, our sex life has changed, and has become much less active-and my husband had both nerve bundles spared. To be frank (I hope I'm not offending any of you guys out there): I don't care if I wake up next to a man who has silly putty between his legs as long as I get to wake up with him next to me.

On a more serious note, Chris, you and your wife have a serious decision ahead of you. Treatment for PCa, no matter what form it takes, has pros and cons. I vote for waiting for the results of the CT and bone scans, then sitting down with your doc to discuss options. In the meantime, you are doing the right thing by collecting information and opinions. I wish you the best of luck as you move forward, and hope you'll come back and let us know how things are going for you and your wife.

An38
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Date Joined Mar 2010
Total Posts : 1149
   Posted 4/13/2011 6:27 AM (GMT -6)   
Hi Chris,

Sorry to hear about you news but I am happy that you are posting here - I think you will get plenty of help.

A good start might be to read Walsh's book on prostate cancer: "A guide to surviving prostate cancer". It helped us tremendously.

Your PSA score and your Gleason Score are high but it is still important to look at all the options you have. Surgery may not be your best option - is could be a combination of seeds and radiation. Or surgery and hormone therapy. I don't know what the answer is but the book will help you ask the right questions. Fom our exprience, asking the right questions made all the difference as it helped us tremendously in speaking to doctors and making decisons.

Wish you and your wife all the best,
An
Husband's age: 52. Sydney Australia.
Family history: Mat. grandfather died of PC at 72. Mat. uncle died of PC at 60. He has hereditary PC.
PSA: Aug07 - 2.5|Feb08 - 1.7|Oct09 - 3.67 (free PSA 27%)|Feb10 - 4.03 (free PSA 31%) |Jun10 - 2.69. DRE normal.
Biopsy 28Apr10: negative for a diagnosis of PC however 3 focal ASAPs “atypical, suspicious but not diagnostic” for PC. Review of biopsy by experienced pathologist, 1/12 core: 10% 3+3 (left transitional), 1/12 core: ASAP (left apex)
Nerve sparing RP, 20Aug10 with Dr Stricker. Post-op path: 3+4 (ISUP 2005). Neg (margins, seminal vesicles, extraprostatic extension). Multifocal, with main involvement in the fibro-muscular zone. T2C.
Post RP PSA,
Lab 1: Sep10 – 0.02|Nov10 – 0.03|Dec10 – 0.03|Feb10 – 0.03
Lab 2: Nov 10 - 0.01|Dec10 – 0.01|Feb10 – 0.01

fulltlt
Regular Member


Date Joined Nov 2010
Total Posts : 264
   Posted 4/13/2011 6:30 AM (GMT -6)   
Welcome to HW, Sorry about the dx.

..."other treatments like the Ultra wave thing they do in Canada to save your prostate" You must
be talking about HIFU. I'm not sure it really "saves" the prostate.

Check into other treatments that Tricare may cover such as IGRT/IMRT and seed implants. The side effects are much less than with surgery in a lot of cases.

Sephie - I hear what you are saying and I'm sure many women feel this way but as a guy it's totally different like Casper is saying a sex life is extremely high on the list. I had the same feelings as Casper. I can relate.

Casper - best wishes on whatever you decide.
location: Batavia, IL
dx age 57 2/2010 PSA 8.2
biopsy 2/2010 - 2 of 8 left & 2 of 8 right positive, Gleason 3+4=7
attended support group - advised to get a second opinion
second opinion on pathology from Johns Hopkins 4+4=8
PSA 15 4/2010
5 weeks IMRT 4/2010-6/2010 at Copley Hospital in Aurora, IL
91 palladium 103 seeds 7/2010 at Chicago Prostate Center, Westmont, IL
PSA
Oct 3.97
Dec 2.78
Mar 2.42

daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 4/13/2011 8:36 AM (GMT -6)   
Welcome Casper319.

As a fellow G8/9 I feel your fear, that diagnosis is a scary one. I'd urge you do find a few different specialists to talk to and listen to the guys here who had high Gleasons for their experience. Nerve sparing surgery gets a lot tougher with a high Gleason/large tumor which appears to be your case with 10 of 12 positive.

I also used several books for references while researching, Meyers, Strum and Walsh were my favorites.

My wife felt as most of wives that that have posted here feel, they'd rather have the man they love with them than share a few more years of sex only to loose him. BTW sex was great even with a limp willie, turns out a man can orgasm even without being "up" and the wife has always preferred alternate methods for herself. (sorry tried to keep it non-graphic)

BTW I elected to gamble on open surgery, initially to de-bulk the tumor with a slight hope of a curative path, so far so good and things are dry and functional, albeit with a much higher chance of recurrence than the lower Gleason guys. Your much higher initial PSA and apparently larger tumor would have caused me to rethink that choice and I would urge you to find the choice that offers the best chance for you.

Best to you on your path.
Dave in Durango CO

07-06 PSA 2.5
01-08 PSA 5.5 (Dr never told me)
09-09 PSA 6.5
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5
03-01-10 Age 55 RRP in Durango CO by Dr Sejal Quale and Dr Shandra Wilson
03-16-10 Path' G-8 (4+4+5) Bilateral involving 21% of left lobe, 3% of right lobe, SVI, Focal positive margin, pT3b NO MX

All PSA as of 1-25-11 <0.04

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2670
   Posted 4/13/2011 9:01 AM (GMT -6)   

Casper:  First of all, thanks for your many years of service to our country. 
I just wanted to offer a couple of thoughts.  First, sorry to hear of your diagnosis.  We've all been there and appreciate what a blow that can be.  Second, I hope you'll read everything you can get your hands on so you get a good overview of treatment options and their various advantages and side effects.  Third, I think it's helpful to start a journal.  I started a Word document on the computer and added to it regularly as I went through treatment.  It's amazing what we forget in the confusion of being treated.  Finally, don't hesitate to ask questions.  As you ask questions and see how the doctors respond, you'll form an impression of their expertise and whether or not they're the expert  you want treating you. 

It never hurts to have your wife there with you during the doctor visits.  It's amazing what I didn't hear, but my wife did.  I kept hearing the "C" word, while she was hearing the rest of what he was saying.

Good luck to you.  Sorry you had to join this fraternity, but welcome aboard (oops, that's Navy talk).

 


Age 65
Dx in June 2010.
PSA gradually rising for 3 years to 6.2
Biopsy confirmed cancer in 6 of 12 cores, all on left side
Gleason 7 (3 + 4)
Bone scan, CT scan, rib x-rays negative.
DaVinci 8/20/10
Negative margins; negative seminal vesicles
5 brothers, ages 52-67 ; I'm the only one with PCa
Continence OK after 7 weeks. ED continues.
PSA 1/3/10: 0.01

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 4/13/2011 9:09 AM (GMT -6)   
Casper319 said...
I read and hear that 80% of all men who have ths surgery are impotent or Erectile dysfunction.
 

Hi Casper, and welcome.  I'm sorry to hear about your diagnosis.

 

I wanted to quickly address just one of your questions/comments...the one copied above.

 

When you are in the "drinking from the firehose" situation that is common to many newly diagnosed patients who feel overwhelmed with new information, the statistics run at you so fast they are hard to fully comprehend.  This one is a little more dynamic; meaning, it really needs another dimension of time added to fully understand the full outcome.  I'll try to "add some color", as the saying goes; in other words, more fully explain (in relatively simplified terms).

 

The neurovascular nerve bundles which enable an erection are wrapped around the prostate.  When the prostate is surgically removed, the doctor examines the possible spread of prostate cancer (PC) up the seminal vesicles and/or outside the prostate capsule.  If it appears that the cancer is contained in the capsule, the surgeon can usually do a "nerve-sparing" surgery and carefully dissect the nerves from the prostate and either fully or partially save them.  There are nerves on both sides, so they could be saved only on one side, or “bi-laterally.”  The individual patient’s anatomy is also a variable factor.

 

The disruption of the very “gentle” nerves during surgery very often causes temporary erectile dysfunction during the recovery process, although some men (small percentage) come out of the surgery with no difference functionality.  Many doctors give the caution that it might take a year or two to recover, but this is often a conservative estimate and most recover within the first year.  Some recover completely, and some recover with somewhat less capability.  Many end up using one of the Viagra-like pills to improve performance during the first year (or more), with some perhaps smaller percentage using the pills longer term.  A small percentage struggle for extended periods regaining erectile function. 

 

So, your reference of 80% men with ED right after surgery is probably very accurate, but after a recovery period, the percentage drops for most men.  One thing is for sure, erectile performance (unassisted) after surgery is no better than it was before...you are getting to the age where many men begin to lose performance naturally due to aging.

 

Unfortunately, with Gleason 8’s and 9’s, you are at a higher risk for PC escaping from the capsule, which decreases the likelihood of a full bi-lateral nerve-sparing procedure.  Also, because of the high Gleasons, if you have surgery, there is also a higher likelihood (than the typical lower-risk patient) that escaped PC may have taken root in your prostate bed, in which case a follow-up prescription of radiation may be in your future.

 

I wish you the best, and encourage you to immerse yourself in the next few weeks to learn all that you can about prostate cancer so that you can directly participate in the decision-making process for treatments.

 

best wishes…

Post Edited (Casey59) : 4/13/2011 8:12:29 AM (GMT-6)


gibson00
Regular Member


Date Joined Nov 2009
Total Posts : 212
   Posted 4/13/2011 10:17 AM (GMT -6)   
Casper,
I think the Ultra Wave thing you are referring to is HIFU? Basically heated ultrasound waves. I don't think that treatment makes any guarantee of saving your sex life. I've read somewhere that it can still cause sexual dysfunction and incontinence.

Did your doctors determine the staging yet? I guess that will probably come with your scan results.
Depending on the results, radiation (IMRT, etc) might be an option instead of surgery. Just something to consider.
Father 65 y/o at diagnosis November 2009
Gleason 9 & 10, stage 3 - seminal vesicle involvement
Two TURPs mid Nov. 2009
Foley Catheter
Casodex for last two weeks of November '09, then Lupron.
Suprapubic Catheter March 18th, but blocked right away, back to Foley...
Started IMRT March 25th, Chemo on hold due to catheter bleeding issues, etc.
Ended IMRT and Chemo (Taxotere) late May
Mid-July - pain finally better controlled with Fentanyl patch
Late July - Superpubic Cath. removed, peeing normal again
July 21 - PSA .21

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 4/13/2011 10:51 AM (GMT -6)   
Casper,

Welcome to the group. I must confess, you are starting out with a very serious diagnosis. But despite your numbers, there certainly is hope.

It probably will take a muti-protocal in treatments with your situation.

Often with your number, surgery might be ruled out, unless the doctor feels that removing your prostate will debulk the largest portion of your cancer.

I would not think that nerve sparing would be a credible option in your case, but possible. A wide margin surgical approach would be more the norm, because there could be a lot of danger in leaving the nerve bundles.

Another approach would be a combination of HT and Radiation as your primary treatment, bypassing surgery.

You need a good surgical opinion, a good radiation opinion, and a good medical oncologist opinion before deciding anything in my opinion.

We got guys here experienced with all options that you will face, and we will be happy to assist you and share experiences and information with you.

Good luck, as you continue your journey. We are here for you, and want you to feel at home.


david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

DaSlink
Veteran Member


Date Joined Feb 2011
Total Posts : 713
   Posted 4/13/2011 10:55 AM (GMT -6)   
Casper;
Sorry to here of your Dx but welcome to the club that no man wants to be in.
At first I thought about the sex problems. But after talking to my wife, she informed me that after 30 years of marriage, she would rather have me around for the long run. After all, she has put many years into getting me the way she wants me! LOL!
It is good advice to take your wife with you to your Doctor visits as you may have tunnel vision,and women always ask more questions than men.
Good luck,read up and keep us informed.

David A.K.A. Slink
Every minute you fish or ride,adds an hour to your life!

Age 52 Dx age 53 daVinci surgery
prostate volume 32 grams
Biopsy 12 cores with 7 positive
Gleason score of 7
1st PSA 38.7 10/05/2010
2nd PSA 49.9 11/23/2010
CT neg.
BS Negative
RRP on 01/25/2011
PT3a -40% involved
margin involved-Left anterior
lymph nodes -clear
1st post op PSA-0.26-03/16/11

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2670
   Posted 4/13/2011 11:08 AM (GMT -6)   

Casper, If I may ask a question, was this your first PSA test?   At age 50, you can't be retired from the Army for too long.  If you did 30 years of service, you may be freshly out of uniform.  While you were on active duty, was PSA testing done during your annual physicals?  Maybe the Army doesn't routinely test PSA until the service member reaches a certain age.  My son-in-law is just 34, but I think his annual Air Force physical includes PSA testing.  Just curious.  Perhaps, since you're now 50, this was your first PSA test?

It's frequently recommended to get a second reading of the biopsy slides from one of the nationally-renowned labs.  You wouldn't need a second biopsy, just another look at the slides from your original biopsy. 

 

  


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4235
   Posted 4/13/2011 11:11 AM (GMT -6)   
Hi Casper,
I'm also retired Army. Tricare will cover most any treatment and with a supplement your out of pocket costs will be minimal. They will also pay for all of the tests needed to properly stage your PC.
Purg gave you some good advice. On the surface with your stats surgery is probably not an option, and if done would be done as a dubulking procedure along with other treatments.
Your best bet at this time is to find a good medical oncologist that specialized in PC. At the minimum you need a PAP test, and sending out your biopsy slides to Branhof in Germany for tumor markers would also be an excellent step. Zufus can provide you with Branhof's contact information.
Where do you live? I can send you contact information for oncologist's specializing in PC that are in your area. With a psa of 88 I would also conside a nano particle scan from Sunnydale Imaging Center in Fla.
With your PC you have to look at it like a war. You need to know as much about the enemy as you can, his strength, size and location before you start a fight.
Good luck
JohnT
65 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, no side affects and psa .1 at 1.5 years.

JNF
Veteran Member


Date Joined Dec 2010
Total Posts : 3794
   Posted 4/13/2011 11:13 AM (GMT -6)   
Casper, welcome and best wishes for a long satisfying life.

Our stats are not much different, though I am a few years older. You have treatment options, but must understand that we are in the "advanced" category and must hit it hard usually on multiple fronts. Many surgeons will shy away from your stats because they will expect positive margins which will then require radiation therapy. Thus why risk the side effects of surgery and radiation? That was my case. My urologist and oncologist both agreed that surgery was not the best course for me, Instead I went with two forms of radiation (external beam IMRT and internal HDR brachytherapy) and hormone therapy or ADT3. So far so good and very little effect on my life at this point.

My advise to you is three-fold. First, research and read everything you can. The people on this board will give you great sources. In addition to Walsh's book, my favorite read was "Beating Prostate Cancer with Diet and Hormone Therapy" by Snuffy Meyers, a very noted oncologist that has fought his own advanced prostate cancer for some 10 years now.

Second, seek a medical oncologist that knows their way around prostate cancer, preferrably a specialist. Most urologists are oriented to surgery and most radiation onciologists ara oriented towards radiation. The medical oncologist does neither, but manages the chemical aspects like hormone therapy and chemo therapy. You need an oncologist on the team now.

I was fortunate to have an urologist that was oriented to me and participates in all my care. He advised against surgery because of my stats. He guided me through the HDR with a rad-onc, who together, have treated over 1,000 people with the HDR method. I also have a great med-onc that covers the big picture and is thinking ahead as to what to prepare for. He is glad I did not have surgery as he is certain it would not have been curative in my situation. In otherwords, I have a very effective team that collaberate to prescribe the best treatment for me.

Third, please understand that this is serious business, particularly with the apparently high numbers you (like me) present. Don't take this lightly, but don't freak out either. Survival statictics are better for PCa than almost any other cancer with 5 year rate at nearly 100% and 10 year rates above 85%. But with high stats and a young age, you will need the very best of doctors that have treated other men at your stage.

Best wishes and let us know how to help.
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 shot and daily Jalyn started on 10-7-2010.
IMRT to prostate and lymph nodes 25 fractions started on 11-8-2010, HDR Brachytherapy 12-6 and 13-2010.
PSA <.1 and T 23 on 2-3-2011.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3781
   Posted 4/13/2011 8:18 PM (GMT -6)   
Casper, sorry you have to be here...But welcome..

JohnT gave you some good advise along with many others..With your numbers, your sex life will soon become the LEAST of your problems..A PSA of 84 and Gleason 9 with 10 out of 12 cores positive means you are in a fight for your life..

The standard treatment for this will be surgery to remove as much of the cancer as possible. Then, as soon as you are able, radiation combined with hormone therapy to kill what cancer remains in an attempt to cure your cancer. But it's a 50-50 deal....If they detect or deduce the cancer has spread, surgery and radiation offer little and they will put you on ADT (hormones) to control the cancer...You have aggressive, advanced prostate cancer and you need to hit it as hard as you can as soon as you can..it's not hopeless, but you gotta pull out all the stops..Ask about Brachytherapy and IGRT COMBINED, a radiation treatment that may or may not be possible for you..

Two books..."Guide to surviving Prostate Cancer by Dr. Patrick Walsh and "Winning the battle against prostate cancer by Dr. Gerald Chodak. Read them both carefully..

The next few weeks are going to be rough ones. Take someone with you to your appointments to take notes. From reading the books, have questions ready to ask and make note of the answers...Don't make any treatment decisions until you are comfortable with them and understand things completely..You are about to embark on a difficult journey and it's going to have a profound impact on your life. We are all here to help you..The Best of luck to you...
Age 68.
PSA age 55: 3.5, DRE normal.
age 58: 4.5
61: 5.2
64: 7.5, DRE "Abnormal"
65: 8.5, " normal", biopsy, 12 core, negative...
66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
67 4.5 DRE "normal"
68 7.0 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA 0.0

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 5855
   Posted 4/13/2011 10:11 PM (GMT -6)   
Hi Chris, there is nothing i could add to the advice you are getting, it is excellent. I would point out to pay special attention to the posts by John T JNF and
Fairwind. They get to the point I think we all picked up in your post. I say this with respect. Chris with your stats at your age, Im not sure you realize, that you have a very dangerous cancer going on there. When your doc says you may have to lose your prostate, that is the understatement of the decade. I doubt surgery wiil be recommended, and if it is it will be for debulking the cancer and radiation will do this also. If by chance you get a surgeon who will, no way will your nerves be spared. PCA is some time referred, by those with less aggressive cancer, as a bump in the road, a play on words , indicating the bump felt on the finger wave, being a military man you know that teminology, and they are imo right. Chris the cards you have been dealt here are not in that category. I dont think I,m over stating the case here. Having said that, you have much options to keep you alive a long, long time. and break thrus are happening every day, these are not just encouaging words, these are facts grab on to them.
Diagnosed 8/14/09 psa 8.1 66,now 67
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash, Bruce Dalkin,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough 18 mos, squirt @ running. psa std test reported on paper as 0.0 as of 12/14/10 ed improving

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 5855
   Posted 4/13/2011 10:15 PM (GMT -6)   
Hey I didn't add to the advice , just reinforced it lol.
Diagnosed 8/14/09 psa 8.1 66,now 67
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash, Bruce Dalkin,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough 18 mos, squirt @ running. psa std test reported on paper as 0.0 as of 12/14/10 ed improving

Casper319
Veteran Member


Date Joined Apr 2011
Total Posts : 771
   Posted 4/14/2011 5:43 PM (GMT -6)   
Wow. I really didnt expect this kind of response. I thank all of you for your comments and many of them really hit home. I just found out I had cancer 4 days ago and I just completed my bone scan today. My next Appt. is on the 20th with my uroligist. I'm glad I came here because theres nothing better than hearing it from the horses mouth and most you all have been there, done that. I havent...and either have most the doctors who treat us.

I have to be truthful....It really hasnt sunk in that I have cancer yet. I guess because Im not in any kind of pain or anything. I have a little problem urinating, but thats it.

I can tell by some of the well written comments here that you all are very intelligent and very knowledgeable in this area. I have learned many things in just a few minutes spent here on this forum....from keeping journals, to researching different doctors and really wondering if my urologist is correct in thinking I need my prostate removed. He did say this before I had a CT or bone scan so maybe he will think differently.

I'm sorry I didnt respond to each post...they were all great advice and I appreciate the time you have all spent to fill me in on whats to come. Me being the one finger typer I am it took me 20 minutes to do just this one. LOL.

I am going to take your advice and do plenty of research...I also realize the most important thing is to live longer...sex or not so I guess I was being somewhat of a drama queen there.

To the poster who asked the question about PSA test. It was my first one at age 50. It was part of my 50 year physical the Clinic on base wanted me to do. I dont believe its required to do it any earlier if you come up OK on the digit rrectal exam which I had at age 35 and 40 and they were OK. My first one was 94 and the PA told me it could be a false positive so he gave me another one and it was the sams so he called a urologist and he told him to give me 2 weeks of antibiotics and recheck. My 3rd was an 84. I dont think they require a PSA in the Military until you are 50. But both my sons are in the Army and I will advise them to do both the DRE and PSA test at 40 or earlier since they are now high risk. My father had bladder cancer but my urologist said that didnt matter. He didnt get it until he was 77 anyway.

Once again, Thank you all...very good advice and I will give you any updates when I get them... Now its time to get drunk! LOL

Sparrowhawk
Regular Member


Date Joined Mar 2011
Total Posts : 130
   Posted 4/14/2011 6:38 PM (GMT -6)   
Hey there Solder, thanks for you service time from an Old Squid!
Sucks to join this club so early in "our" golden years, but you're not alone, I'm 50 too. DX wound up with 7's on both sides! PSA is at 2.16!
Fight this beast and live, you were probably in the field with out sex, you can tough it out until things get ship shape again. (Or what ever you ground pounders call it!)
If your wife stuck by you during deployments, she'll stick this out with you as well.
31 Jan 11 "Cyst" found on prostrate during Colonoscpy.
28 Feb 11 Biopsy of Prostrate; Malignat Neoplasm of Prostrate.
Rt: 30-40% LT: 5% Gleason Score 3+4=7 Both sides.
PSA: 2.16 "Very Stable over time."
15 Mar 11 Bone and Cat Scans completed- Normal
Large Prostrate: 4.9 x 4.0 cm

Casper319
Veteran Member


Date Joined Apr 2011
Total Posts : 771
   Posted 4/21/2011 2:18 PM (GMT -6)   
Just an update. went to see my Urologist on 20 April and he told me the bone  scan was negative and CT scans were good.  No spread to any lymph nodes but he said there were blurry spots on the seminole vesicles he wasnt sure about.  hes still recomending surgery but he also told me he was leaving the State and relocating and informing all his patients. he referred me to a Dr Joseph at the University of Rochester. They have a large Urology center there and this guy I guess has done over 4000 robotic surjuries and he says hes one of the best.
 
He also said there was a small spot on the bladder he wasnt sure about and the new Urologist may want to go in and check it out.  Hopefully my insurance will cover this guy and he will be calling me back soon. We have limited urologists in the area here in Watertown, NY and they dont seem to want to stay long. We do have 2 cancer treatment centers and 3 urologists left in watertown so I may see them for follow up after the surjery.  Rochester is just too far away for me...5 hour drive.  Thats OK for the surjery I guess, but not too good for follow up appointments. I still dont have a clinical stage yet and when I asked my doctor he seemed clueless. He kept telling me CT scans are not very accurate and that I have a 50% chance of cancer spreading around my prostate but they wont know until they go in for surgery.  Does this seem right....cant they do a more thorough exam like an MRI? Im glad hes leaving by the end of the month because quite frankly, I think the guys a quack.
 
 
Age:50 Diagnosed: April 2011, Age 50
PSA Level 84 Gleason: 8 and 9's
Biopsy results: 10 of 12 tested positive for cancer
Bone scan....negative, CT scans...nagative but
possible spread to seminole vesicles but not confirmed. CT scan showed some rough/blurry areas.

Treatment: Surgery (Date/time still unknown)

Post Edited (Casper319) : 4/21/2011 1:22:55 PM (GMT-6)


Sunbird
Regular Member


Date Joined Apr 2008
Total Posts : 140
   Posted 4/21/2011 4:11 PM (GMT -6)   
Yes Casper, a urologist can request an endo-rectal MRI. I had a history of colon cancer with a recurrence to the lung ten years prior to my prostate cancer diagnosis, so my urologist requested a CT Scan because he didn't want to put me through "open" prostate surgery if there was a chance I currently had recurrent colon cancer. The CT scan was not definitive, and the CT report of my prostate area didn't sound good. My uro then requested an endo-rectal MRI, and it was one of the least enjoyable medical procedures I've ever endured. Think of a 3 D Cell Mag flashight up your butt for 90 minutes. At least you're somewhat sedated. The MRI report was about 180 degrees out from the CT report, so we went ahead with open surgery. My uro wouldn't use the robot because of my earlier colon surgery. Anyway, I had my surgery, and my cancer was confined to the prostate gland. My surgery was February 2010, and I wouldn't change a thing. I have no incontinence and no ED problems. I'd go through it all again.

By the way, I'll be returning to your neck of the woods where I spend summers. I used the Winter Cancer Center in Ogdensburg when I was dealing with colon cancer.

leeanglo
Regular Member


Date Joined Dec 2010
Total Posts : 191
   Posted 4/22/2011 3:53 AM (GMT -6)   
Hi Chris, ive read through all the threads above and probably much like the other guys was waiting to hear the results from your bone scans and also your clinical stageing.VERY PLEASED !!! that your showing no bone mets or lymph node envolvement.You will have alot of desicions to make about the treatment you choose.It looks like surgery is an option that you can take to remove the prostate.I was diagnosed last year age 44 pc but it had already spread to my bones and nodes so surgery just wasnt an option.Im being treated with the hormone blockers so my once active sex life is now almost zero ! Frustrating to start with Chris but you DO GET USED TO IT.......My opinion is SAVE YOUR LIFE FIRST !
Yana is a great place to compare your situation as you can track other men with similar stats.
THE VERY BEST OF LUCK..
psa on dx 144, gleason 4+3 7 12 biopsie cores cancerous
T3a N2 M1.
psa after 3 months zoladex 20
T levels 0.5 after 3 months zoladex.
now taking 50mg cosadex daily also.

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/22/2011 6:43 AM (GMT -6)   
good post, leeanglo, I agree. Yana is a perfect place to read about countless success stories.

Casper - that is promising. Follow up diligently regardless of approach you choose.
40 years old - Diagnosed at 40
Robotic Surgery Mount Sinai with Dr. Samadi Jan, 2011
complete urinary control and good erections with and without meds
Prostate was small, 34 grams.
Final Gleason score 7 (3+4)
Less than 5% of slides involved tumor
Tumor measured 5 mm in greatest dimension and was located in the right lobe near the apex.
Tumor was confined to prostate.
The apical, basal, pseudocapsular and soft tissue resection margins were free of tumor.
Seminal vesicles were free of tumor.
Right pelvic node - benign fibroadiopse tissue. no lymph node is identified.
Left pelvic node - one small lymph node, negative for tumor (0/1)

AJCC stage: pT2 NO MX
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