Looking for any direction for a newly diagnosised 47 year old

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kziz
Regular Member


Date Joined Feb 2007
Total Posts : 242
   Posted 2/2/2007 8:59 PM (GMT -7)   
My husband is 47 years young who was diagnosised 1-29-2007 with PCa.  Ironically, my father was diagnosised with it when he was 49 and allready in the final stages.  He died 10 years ago on 1-29-1997.  My husband's doctor who did the biopsy believes that it is contained.  He feels very certain about that, however, if you put his scores into the Partin tables, the chances are barely over 50% that it is contained.  We are seeking other opinions.  I had to ask his doctor 5 times to give me a stage.  He finally said T2, and that was it.  In looking at the new scales (I was used to the old ABCD with my dad) I believe it is more than likely a T2c due to the fact that it is on both lobes.  His PSA pre-biopsy was 4.1 and Gleason is 3+3=6 on both sides.  We have sent in a referral to MD Anderson, and hope to get in to the best doctors there, but now we are just facing waiting and seeing.  Does anyone have any advise on the Partin Tables &/or doctors close to Oklahoma with good success rates?  We had also been discussing the possibility of having a child together prior to diagnosis.  He had a vasectomy 9 years ago.  Anybody with information on that would really be helpful. 

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 2/2/2007 9:32 PM (GMT -7)   
Hi Kziz,
You husbands experience in similar to mine. I am 44, PSA 13.5, Gleason 7 both sides (T2C clinically). Don't put too much into the Partin tables. While they are based on factual experiences, they are not an odds table you should do much with unless you need convincing to do a certain treatment type. I have my surgery coming on the 16th at the City of Hope near Los Angeles. I have chosen the robotic technique there. The Partin tables helped me make the right decision, but I was more easily convinced by my urologist.

My wife and I lost a baby several years ago and have never been able to right the ship and get it done. We are broken hearted but as other members have suggested to me, you can always have sperm frozen and you are not too late for that. As for us we made the hard decision to forego the cryogenics. You see my wife has had a difficult time with her female side and she and I were on the border 6 months ago about her surgery. We decided then to keep trying even though it was tough on her. That's until October 06. My PSA on that date was originally 19 but dropped to 13 a few weeks later when my urologist said I need a biopsy.

As for Partin tables, We have a great friend in our group that was disappointed to have a only a slight detection in biopsy come out a concerning T3 after surgery, and we've had another who had a Gleason 10 come out clean in his recent tests post-op. My odds are even worse that your husbands using the Partin tables, so I just hope for the better and think positive. Sorry to welcome you here but we can stay in touch and share our information. I will be posting my results each and every step. I don't know OKie but MD Anderson is one of several top notch clinics in the country for PC.

I hope for the best Kziz, for you, your husband, and all of us here.

TC

Post Edited (TC-LasVegas) : 2/2/2007 9:35:39 PM (GMT-7)


kziz
Regular Member


Date Joined Feb 2007
Total Posts : 242
   Posted 2/2/2007 9:48 PM (GMT -7)   
Good Luck TC, and thank you for the reassurance of not relying on the Partin Table. We are just now at the starting to sink in stage, and after hours of off and on crying today, you have made me feel better. I would love to hear from your wife. My email is cpgray45@sbcglobal.net. Not to many men your and my husbands age are diagnosised with this cancer.

kziz
Regular Member


Date Joined Feb 2007
Total Posts : 242
   Posted 2/2/2007 9:49 PM (GMT -7)   
TC, What made you more comfortable with the robotic surgery?

Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 2/2/2007 9:53 PM (GMT -7)   
Hi Kziz,

www.cancer.prostate-help.org/download/jhnomo.pdf

This is one of the most useful pieces of information I have found. Hope you find it helpful.

Swim

kziz
Regular Member


Date Joined Feb 2007
Total Posts : 242
   Posted 2/2/2007 10:03 PM (GMT -7)   
Thank you swim, printing as I type

BenEcho10
Regular Member


Date Joined Jan 2007
Total Posts : 133
   Posted 2/2/2007 10:40 PM (GMT -7)   
Hi Kziz,

I am sorry that your husband has joined our "club." None of us want to be members but at least you will find some kind and knowledgable friends at this site.

In the months after I was first diagnosised, I was also surprised to meet and talk to many men in their 40s and early 50s who have had PC. When I found this website, I also noticed that there were lots of men in their 40s and early 50s here as well. After reading lots of postings it also sank in to me that whether we are in our 40s, 50s, 60s, or 70s none of us wants cancer, incontinence, or impotence so the age doesn't really matter. Perhaps it is a bigger shock for us when we are younger but it is obviously also pretty shocking and disturbing for us all no matter our age.

Regarding the information that you are getting from your doctor, I think that you are guessing at your husband's stage correctly. If you are uncomfortable with the amount and type of information that you are getting from your local urologist, you may want to consider getting a second opinion or even entirely switching to another urologist. It sounds like you are already following that path in looking for a top surgeon, perhaps even out of state.

I don't know anything about doctors near OK but there are plenty in TX (Houston and Dallas and I am sure other locations.) For that matter, if you are willing and able to travel, the distance doesn't matter that much. The key thing is to find a highly skilled surgeon who has done your exact type of treatment (open surgery vs. robotic surgery vs. radiation or whatever) many, many, many times with good results.

We flew halfway across the U.S. (direct flight fortunately) to Baltimore to go to Johns Hopkins. We stayed in Baltimore six days after the surgery to give me time to heal up some before flying home. I have read about others on this site who flew home (or drove several hours) much more quickly but I think that most of them had robotic surgery whereas I had open surgery. My point is that traveling to get to a top hospital and top doc is more manageable than we thought at first.

If you haven't already done so, I would encourage you to read two books on PC written by Dr. Patrick Walsh's and Dr. Peter Scardino. Both can be bought at this site or Amazon.com or lots of other places I am sure. They are good general references.

It is a big plus that you found this site so early in the process. I didn't find it until two months after my surgery so all of my questions have been about side effects. You have a great opportunity to read a lot of first hand information about treatment and doctors before you make up your mind.

I wish you luck.

Ben


DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00.

Post Edited (BenEcho10) : 2/2/2007 10:44:10 PM (GMT-7)


kziz
Regular Member


Date Joined Feb 2007
Total Posts : 242
   Posted 2/2/2007 10:59 PM (GMT -7)   
Thank you Ben. I hope all works out for you and I appreciate your input on staging level. I was quite disappointed that Kurt's doctor would not give me a stage. It took me asking him 5 times to get T2. John Hopkins is looking better and better. Hopefully we will get into MD Anderson soon. When my dad was dx'd, in 1997, his onocologist got him into the top prostate specialist there, and hoping he will do the same for my husband. We will see him on the 9th. Will keep you posted. Courtney

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 2/2/2007 11:21 PM (GMT -7)   
Hi Courtney,

Sorry you have to be here but this is about the best place to be for information and support. My sons are in their 40s and since I was diagnosed I have urged them to get their PSA checked. Good for you and your husband for doing it and catching PCa early. I was very fortunate in that at 72 I was in the early stages also. I chose RRP because I wanted to have the cancer out of me as soon as possible and to know more precisely what the extent of the cancer was. Everybody has their own reasons for choosing a treatment but the consensus seems to be to go with the best doctor you can find in whatever speciality you choose. Then make the decision and don't look back. Become a cheerleader for the medical team. The only thing you and you man can bring to the procedure is as healthy a body as you can manage and a good attitude. This will see you through the hard times and then the only way to go is up.

Good luck and please stay with us.

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04.  Next PSA on 4/4/07.
 
 "Patience is a virtue - especially when dealing with the effects of PCa."


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 2/2/2007 11:36 PM (GMT -7)   
Hi Courtney,
It's a pleasure to meet you, and pardon the cliche but, what's a nice girl like you doing in a place like this? Don't answer. We know. darn I remember when this was a really bad pick up line. But it actually sounds right here as a greeting.

I chose robotic for a couple reasons. There's not much difference in the RRP or LRP (da Vinci) procedure results. Some urologists will argue that the big slash is better for visual and complete removal of the invaders. Others, will disagree and have shown that the robotic is just as, even possibly more effective. It is indeed less invasive and if you compare the two you will be stressing over which is better. I chose the technique because I felt confident after reviewing the options and testing the water and trusting the surgeons. City of Hope isn't a paradise of surgery, there is no such a place, but my surgeon sounds the horn of survival and quality. In many ways I battled this decision. But it's as simple as this. You must believe in the positive outcome, you must believe in your medical team, and you must stand by your convictions. And I believe you must learn about where we are today with this disease. What have I learned here? I believe Kegels, excersize, and diet CAN help. Not diet to prevent cancer, but to help recovery. Not excercize to prevent cancer but to help the mind and improve recovery. Not Kegels to prevent incontinence, but, er, yes to prevent incontinence AND improve recovery. But really take your time to digest this. God is with us through this journey. Once you have gotten over the initial horror, there is hope. Wipe those tears away and put them next to ours. When we are cured, lets go swimming. :-)

Good Luck, Kurt!!!!....(and Kziz)

tc

Post Edited (TC-LasVegas) : 2/2/2007 11:44:14 PM (GMT-7)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 2/3/2007 12:18 AM (GMT -7)   
Also Kziz,
I have forwarded your em to my wife. She is struggling with this as well as you can imagine so let her respond on her time. I am sending you an EM to let you know our contact info. I am very much blessed by my marriage. And so are you and Kurt.

tc

Post Edited (TC-LasVegas) : 2/3/2007 1:50:52 AM (GMT-7)


naimnut
Regular Member


Date Joined Jan 2007
Total Posts : 93
   Posted 2/3/2007 6:13 AM (GMT -7)   

Kziz,

Best greetings and wishes for a smooth pathway.

I will share a couple of comments, as briefly as possible.

1. This is the best board I have found on the internet for getting questions answered with no embarrassment or fuzziness. People here are committed and willing to share whatever experience they can.  My wife and I have gotten several important questions answered that we were not able to get answered in the local support groups or find in our other reading.  I also suggest that you check out yananow.org. (you are not alone).  Another good site with lots of sharing,though it does not seem to be as much a forum, like this, but a good site with lots of documented stories and descriptions of experience with various treatment options.

2. MD Anderson is certainly a center of excellence. Possibly a good option. Investigate what treatment options they have.

3. I've learned that even centers of excellence can have surprising limitations and that reputations can be based on perception. For example, there is a local hospital here that is rated very very high, nationally for cancer treatment. but they do not have a da vinci robot (!) though I've heard they are getting one. Their primary focus is on radiological approaches. Nothing at all wrong with that, except that those treatment options would primarily be of value for those with more advanced conditions than my own.

4. I've elected to pursue da vinci surgery because it allows for complete removal of the prostate (always considered the gold standard, in terms of recurrence), which will allow for proper staging of my disease and verification of whether it is confined to the prostate or not. I'm looking only at top surgeons nationally, those who have done more than 500 surgeries. Menon, Patel, Su, and that guy at Vanderbilt. Side effects and recovery seem better, though some folks choose the seeds and that can be a very good option.

5. Regarding your doctors seeming reluctance to stage the disease for your husband--he may have been somewhat uncertain. Even a DRE takes a considerable level of skill to do properly. Same with pathological staging. Dr. Strum (oregon) (do a search on prostate cancer institute) (many very excellent papers and nomograms on that site) is extremely selective in recommending pathologists. The purpose of my comment here is simply to seek out one of the  very very best centers for your second pathological evaluation, such  as Epstein at Hopkins. This will help you have confidence in your choice of treatment.

6. Last (and I notice how much more I've written in my "brief" comments than I expected) but not least is, keep studying until you are confident in your choice of treatment, whatever pathway it might be. You already know quite a bit, from your experience with your father, so your questions are already very insightful. When I finally got to the point where I knew my choice I was able to return all the books to the library for some other poor soul to check out, stop pondering and now it is simply a matter of getting on one of my surgeons schedules. That, in itself, is a bit of a relief.

God Bless you on your pathway and best wishes for a speedy treatment and complete recovery.

Markus


Age, 53
PSA 3.76, Gleason 6, T1c, scans negative
psa doubling time 35 months
Still researching and deciding treatment options.  Leaning towards da vinci robotic.


jerrio
New Member


Date Joined Nov 2006
Total Posts : 18
   Posted 2/4/2007 11:37 AM (GMT -7)   
Kziz, So sorry to here, it is so scary but the more you find out the better. I just had the open radical two weeks ago tomarrow. It was not near as bad as I was worrying about, No Pain except when trying to set up or get out of bed from the incision but that gets better fast. My descision to have the open radical was based on point that Dr could see inside and look for trouble spots. Ever person has to make his own choice that he is compforable with. You will make the right choice and good luck.. Gerald
PSA went from 2.3 to 4.5 12 months
Biop was 3+3=6 3% left side on 1 0f 12
sch. for total removal 1-22-07 (open)


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 2/4/2007 8:12 PM (GMT -7)   
To: TC-Las Vegas:  I had robotic RP at City of Hope on Jan. 12, '07.  You will be in good hands.  The people there were wonderful to me and my wife -- they were very capable and made sure we were comnfortable around-the-clock.  They also have an excellent 24-7 Nurse Triage call center, where, after you're back home, you'll be able to communicate with a "live, human being" regarding any questions or concerns you have.  I call them often and they're great.  That's a far cry from what I could expect from my urologist in Vegas, where it often took 24 hours to hear back from his assistant, let alone him.
I assume your surgeon at City of Hope will be either Dr. Kawachi or Dr. Wilson.  Mine was Kawachi.  They have collectively done over 2,300 robotic RPs, which gave me great confidence as a patient.  As I'm sure you know, the two guys doing robotic RP in Vegas are nowhere near that number.
I dreaded the inconvenience and added expense of going to California for my surgery, but I'm glad I did.  In our case, we stayed for the week and spent a few days watching the waves break at Laguna Beach, prior to having the catheter removed and coming home.  Be sure to make arrangements for your lodging as early as you can.  It can get very busy in that area, overnight.
I look forward to hearing the good news following your surgery.

54 years old

PSA = First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06 (6 out of 8 cores positive), both lobes, Gleason 3+3 = 6

Da Vinci Robotic RP surgery, Jan 12, 2007

Post surgery pathology – organ confined, Gleason still 6, margins clear.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 2/4/2007 11:11 PM (GMT -7)   
To Pianoman, and check this out, Kziz,
God Bless you. This is what makes this site so wonderful. I am posting to help support Kziz, and I get my biggest breath of fresh air in your post. My sister, brother, mother live in Laguna Beach. I don't need to make any special arrangements I I'll be seeing the waves in less than two weeks. I arrive on the 13th, pre-op tests on the 14th. Evening in Laguna with my Wife for Valentines and her birthday. Surgery on the 16th by Wilson. I did alot of research in the Las Vegas area, and travelling seemed like the best idea for exactly as you stated. Not to mention that expertise does not grow as fast as our community did. COH is a great place, my step father went there and he loved the care he received. Zommick was my local urologist. Ivy leaguer but only does a couple RRP's a month, and that's like a day for these guys. Thanks for your input, great feeling to get that kind of input. Kziz, this is what you want to try to do is get input and a great feeling about your surgeon.

PS: Pianoman, you sound like a musician. I am too (dobro's guitars, mandalin, bass). Maybe when all is said and done we get together? EM below.

tcneclv@aol.com

tc

kziz
Regular Member


Date Joined Feb 2007
Total Posts : 242
   Posted 2/5/2007 2:11 PM (GMT -7)   
Thank you both for the postive outlooks on COH. I have my husbands sister checking it out now. She lives there. If anyone has information regarding md anderson in Houston, We would greatly appreciate it.
Kurt & Courtney
47 year old
Great Health prior to dx
Dx on 1/29/07
PSA 4.1
Gleason 3+3=6, both lobes
Stage T2c, I believe
Tumor involves 20% of cores, both lobes
Looking for Surgeon with lots of da Vinci experience
Live in OK, willing to travel


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 2/6/2007 8:07 AM (GMT -7)   
Kurt and Courtney, all I can say is what others have said - you will find your way to making a decision and then you'll feel so much better. Jeff chose to have a radical prostatecomy because he really liked his doctor, his doctor had one a few years ago, and he wanted everything out of there. I went along with his decision even though I probably would have gone robotic but it was his to make. hang in there! kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test 0.1, 2nd post-surgery PSA test 0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06


djhouston
Regular Member


Date Joined Jan 2007
Total Posts : 68
   Posted 2/6/2007 11:08 AM (GMT -7)   
Hi Kziz,
Please check my post on the finding doctors in North Texas thread, about doctors using the robot in Houston, at Baylor. I vote for the Baylor Department of Urology over M.D. Anderson. Check their website: www.baylorurology.org.
dj
dj's stats:
PSA (10/04): 2.9; PSA (2/06):4.4, on Androgel (serum T about 450) at age 56; negative DRE, no symptoms.
PSA (5/06):5.7 with a free PSA% of 8, OFF Androgel (serum T 163). 
Biopsy (5/06): 4/12 samples positive; postitive samples only on right side; max Gleason 4+3=7 (in 2 of the 4 -from area nearest bladder.
DaVinci robotic-assisted laparoscopic radical prostatectomy + bladder lift + Right nerve plastic surgery (8/23/06).
Catheter out 4 weeks postop, due to internal pinhole leak at bladder-urethra junction.
Final pathology report:T2c-both sides,but in capsule; neg. margins, neg. lymph nodes, neg. seminal vesicles; final max Gleason still 4+3=7.
Follow-up PSA (11/06): <0.008; serum T: 195 OFF Androgel (at present).

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