41 with Diagnosis

New Topic Post Reply Printable Version
49 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

arb
Regular Member


Date Joined Apr 2006
Total Posts : 36
   Posted 4/4/2006 1:08 PM (GMT -7)   
Hey all!  I'm 41 and diagnosed with a 3+3 gleason and a 3.8 psa.  Had the biopsy and 2 of the 12 pulls showed abnormalities.  Ok, so it's cancer.  Been researching everying and will most likely do the robotic surgery.  Here are my questions:  After the biopsy, I've had a slight dribble, before the biopsy dry as a bone.  Anyone ever find this to happen to them?  Second, I'm engaged to be married next summer....of course we would like to have a child.  Anyone bank/freeze before?  Results?
 
The oncologist said that it was up to me, but as slow growing as it is, I could wait 6 months (monthly psa's of course) get married and try to have a child.  Anyone ever put it off this long from initial diagnosis.  Going to go and see a new urologist for a 2nd opinion today.

Any suggestions/help much appreciated!!

Aaron

peterpiper
Regular Member


Date Joined Mar 2006
Total Posts : 24
   Posted 4/4/2006 4:57 PM (GMT -7)   
Aaron,

I heard about a 10 year study that just got published at Johns Hopkins University which concludes that for those who have up to 2 cores out of 10 showing malignancy, plus a Gleason Score of less than 7, they feel could wait as much as 2 years without a high risk of cancer leaving the prostate capsule.

Check it out on their website, just to be sure.

Regards,

Peter

elpaso
Regular Member


Date Joined Dec 2005
Total Posts : 82
   Posted 4/5/2006 6:43 AM (GMT -7)   
I was diagnosed in early December. PSA of 5.6; two of 12 core samples malignant; two others suspicious. Gleason score was 6 (3 plus 3) ... Had surgery three months later. Gleason was now 7 (3 plus 4) ... And I had close margins ... In my case, it appears that the cancer had advanced a bit over three months. Most of the time it's slow growing. However the author of a book - Man to Man - says he's also heard of very aggressive prostate cancer. Do as much research as you can. Good luck.

Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 4/10/2006 3:23 PM (GMT -7)   
ARB,
 
Robotic is a choice given what you wrote about your PSA and Gleason score and core %. Given your age, I (IMHO) would never postpone what is more likely to be cured today! It is a published belief that younger men often have more agressive cancers. While you have a lower grade, low PSA, please don't consider a waiting game. Yes, you do have a few months time to think, research and plan, but no prudent Physician would even suggest a young man wait for very long.
 
If the Doc can, and surgery is your choice, ask about seminal vesicle tip sparing as well as nerve sparing. A lot of today's surgeons are leaving the tips alone in the belief that it aids in maintianing continence and possibly function. Less tampering with what God gave ya! You're already in a good position for recovery given your age. Your choice of surgeon may not do tip sparing but it's worth asking. Good luck to you.
Swim

Paten
New Member


Date Joined Mar 2006
Total Posts : 14
   Posted 4/18/2006 6:24 AM (GMT -7)   
I asked about the seminal vesical tip sparing and he said he's been doing that for a while. There is also some study that was mentioned for an experimental drug that promotes nerve regeneration. He asked if I would be interested. I'm supposed to receive some paperwork about it soon. I don't think it's a secret so you may ask your doctor, but if it is a secret I didn't say anything.

snow leopard
Regular Member


Date Joined Apr 2006
Total Posts : 20
   Posted 4/18/2006 8:36 AM (GMT -7)   
What is seminal vesical tip sparing? Husband's dr. doing robotic surgery. I also heard something about nerve graphs? snowleopard
snow leopard


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 4/18/2006 10:23 AM (GMT -7)   
Sno,
Seminal vesicle tip sparing consists of the distal tips being left intact. The remaining parts are taken and examined at pathology along with the prostate. The thought is that becasue of the close prximity to the nerves and surrounding structures the seminal vesicles are, the more work it takes to excise them. The more work, the more stretching and cauterizing, the more potential for unavoidable damage. Any little bit helps! A portion men who have low A Low PSA, low grade cancer therefore low risk for spread, are candidates for tip sparing.
Some surgeons rountinely leave them when ever possible because it is thought there is a positive influence on continence. That's their story!
 
Sural nerve grafting..a 5 cm piece of nerve is taken from the area near the ankle and transplanted into the pelvis where a nerve had to be excisied. We had a surgeon on stand by at Paul's surgery to do this procedure but it wasn't necessary. I had asked the surgeon (Uro) how well he though graft actually do. His coment "we've done 67 of them and haven't had a positive repsonse yet." That's University of Michigan Hospital experience with them so far. Swim

Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 4/18/2006 10:31 AM (GMT -7)   
Paten,
 
You are going to be part of the ligand (sp?) study? I've read quite a bit about the study. The hopes are that it will lead Doc's into being able to generate more rapid nerve regrowth making impotence less of a threat to men. Less of a threat may lead to more lives spared becasue more men will be checked. Dozens of hospitals across the country are in this study.  :-)

arb
Regular Member


Date Joined Apr 2006
Total Posts : 36
   Posted 4/25/2006 8:34 AM (GMT -7)   
Great information! So here it is April 25th and I'm going to bank some sperm for the possibility of a future child. Have decided to undergo the DaVinci robotic here in Florida. Surgeon has done 225 in the past 2 years and always has another doctor present. Any suggestions on how to make it the most comfortable experience possible?

Vesticle tip sparing? My doctor has heard of it, but wonders if it won't leave cells that could be cancerous behind.......

arb
Regular Member


Date Joined Apr 2006
Total Posts : 36
   Posted 4/25/2006 8:36 AM (GMT -7)   
Swimom,

How's the surgery been so far? Anything suggestions that may help?

Thanks!

arb

Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 4/25/2006 9:48 AM (GMT -7)   
ARB,
Nothing exciting when it's all done and over with. I say that, but of course it wasn't me who had the surgery! Paul however had lunch with me on the way home from the hospital if that tells you anything at all. He was out and about doing a few errands the very next day, church on Sunday and at a fire dept. training meeting for a whole day on day (leg bag and all) Tuesday.
I bought him 2 pairs of carpenter style cago pants 1 size larger so he could be comfy and didn't have to wear sweats. Had him take a B-50 Vitiman and a B12 for a few weeks to rebuild his energy. Paul alwasy eats healthy so that's not a problem. He did fine ARB. Don't forget the half dose of Levitra or whhatever to begin the day after your cath comes out. You'll be back to yourself in no time. Kegels...don't forget Kegels! Swim

arb
Regular Member


Date Joined Apr 2006
Total Posts : 36
   Posted 5/8/2006 7:19 AM (GMT -7)   
Hey All,
 
Patiently waiting for my robotic surgery!  :-)   My fiancee is giving me a little grief....wants another psa done to see if it's dropped   sad    My 2 postives out of the biopsy only showed less than 5% in each pull.  Pretty low.  But Hopkins gave me a 3+3 gleason and a T1c rating.  I've had a lot of older men at work tell me I'm too young and should have another biopsy, not to have an operation and to watch.  This would help in the have children later department.  Of course, I'm freezing some for a later date.
 
Getting another psa done today 5/8 and waiting for results.  What would you do?  Wish I wouldn't have found this until a year or so later........
 
Thanks for all your help, information, and support!!!!
 
Aaron

Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 5/8/2006 9:44 AM (GMT -7)   
Aaron,

Waiting is entirely up to you. You are a candidate for waiting and watching a while with only one thing to consider...you are 41 and the one thing they do know with a man so young is the cancer will get worse! Young men often have more rapidly progressive/higher grade cancers. Just when the cancer will turn is ugly head and become nasty is anyone's guess. Right now it's progressingmore slowly but will that change in 6 months? A year? Maybe 5? No one knows. If you were my hubby I would want you to be around to see that twinkle in your eye grow up someday. If you wanted to wait a year or what ever I wouldn't argue with you either, It's up to you.

Paul's PSA was 3.6. He had 1 focal 5% of 3+3 and 3 suspicious tiny inconclusive foci of less than <5%. None of the 3 pathologists could commit to anything else and all thought he had a good chance of cure if treated early. His pathology showed a 2.5 cc area of tumor and 3 more smaller tumors. Although that is a smaller cancer it is by no means "small". Age is the one thing you don't have on your side Aaron. If you wait, don't let the PSA get above 4-5 IMHO. Swim

erauip356
New Member


Date Joined May 2006
Total Posts : 4
   Posted 5/8/2006 9:55 AM (GMT -7)   
Hello,

Believe me young people do get prostate cancer. I am 42 years old and had 3 of 8 cores show a Gleason of 9 when biopsied on 2/28. I had an open radical performed on 4/7 this included my seminal vessles and the right side nerve bundle. My lymph nodes were clear and will hear my margins and full results of the pathology on 5/18.

I guess I get mad I hear people say it is an old man's disease. It is not! You and I are just VERY lucky that we were diagnosed! You don't want to find out about this a year from now. You are doing the right thing with your surgery. In my case, I was told that in less than 12 months it would surely have been to late.

Take care.

Jamie

dersh
New Member


Date Joined Apr 2006
Total Posts : 8
   Posted 5/8/2006 10:59 AM (GMT -7)   
Aaron,

I believe you have to be comfortable with your decision. I know I would rather have the peace of mind that the cancer is removed. I had mine out on 4/20, my path report said it's all out, so I am grateful. Of course, now I have to work to get continent but I'm going to live. Small price to pay.

Try to be thankful you found the cancer early and have a chance to eliminate future problems.

Get all the info you can before you make a decision as to when you get it out but get it out.

Wish you well

Jack

JustJulie
Regular Member


Date Joined Mar 2006
Total Posts : 355
   Posted 5/9/2006 12:54 PM (GMT -7)   

Unfortunately no one is immune anymore, regardless of age. 

My husband was 44 when diagnosed and he had the brachytherapy (seed) implant one month ago.  His biggest complaint is the fatigue that comes with the 24/7 seed treatment.

Wishing you well on whatever treatment you choose.


elpaso
Regular Member


Date Joined Dec 2005
Total Posts : 82
   Posted 5/9/2006 7:18 PM (GMT -7)   
There's no easy answer when it comes to dealing with prostate cancer. A recent study indicates survivor rates are best with surgery. Here is a piece of that study to be presented later this month at the American Urological Association annual meeting.

Presentation Title: Ten Year Outcomes Following
Treatment for Clinically Localized Prostate Cancer: A
Population Based Study

Author: Peter C. Albertsen*, Farmington, CT;
James A. Hanley, Montreal, PQCanada; David F. Penson,
Los Angeles, CA; Judith Fine, Farmington, CT

Introduction and Objective: No data from randomized
trials are available to compare treatment outcomes
among men diagnosed with localized prostate cancer as
a result of screening. A retrospective, population-
based outcomes analysis of men diagnosed in
Connecticut with localized prostate cancer between
1990 and 1992 was performed to estimate prostate
cancer specific survival and all cause survival
following surgery (n=806), radiation (n=703) or
observation (n=114).

Results: After an average follow up of 11.8 years,
11% of the cohort have died from prostate cancer, 4%
from other cancers, and 23% from non-cancer causes.
Patients undergoing surgery tended to be younger and
have a more favorable distribution of histology and
lower pre-treatment PSA values when compared to
patients undergoing radiation. Patients electing
observation tended to be older and had a more
favorable profile. After adjusting for differences in
patient characteristics, the men undergoing surgery
had consistently better cause-specific survival when
compared to men undergoing radiation or observation.
Survival differences for men with low risk disease
did not become apparent until 8 years following
diagnosis, for men with intermediate disease, about 4
years following diagnosis and men with high risk
disease, almost immediately. The risk of death from
prostate cancer for men undergoing radiation versus
surgery was 3.2, 2.5 and 2.2 times greater for low,
moderate and high risk disease respectively. The risk
of death from prostate cancer for men undergoing
observation versus surgery was 3.8, 2.3, and 3.3
times greater for men with low, moderate and high
risk disease respectively. There was no difference in
cause-specific survival between men receiving
radiation and observation although there may be a
small trend in favor of radiation for men with high
risk disease.

Conclusions: Patients undergoing surgery for
clinically localized prostate cancer appear to have a
survival advantage that increases in magnitude over
ten years when compared to men electing either
radiation or observation.

Kirk_B
Regular Member


Date Joined Dec 2005
Total Posts : 31
   Posted 5/10/2006 3:55 AM (GMT -7)   
Elpaso,
The study you posted is from 1992 data so radiation has probably improved since then.
I still believe for men in good health otherwise that surgery is the gold standard, and as we both know, there is really nothing to it. Just 6 weeks or so of watching tv and being waited on (if we can get away with it).

JustJulie
Regular Member


Date Joined Mar 2006
Total Posts : 355
   Posted 5/10/2006 9:46 AM (GMT -7)   
The information we got from the doctors was brachytherapy and surgery at the 15-year mark were yielding similar results.  My husband was not the perfect surgery candidate because of the location of the tumour and the increased risk of incontinence so we opted for brachytherapy. It would be nice if surgery could be the cure-all but it's equally as nice to know that there are other options if you're not the ideal candidate for same.

elpaso
Regular Member


Date Joined Dec 2005
Total Posts : 82
   Posted 5/10/2006 4:14 PM (GMT -7)   
Just throwing out one study. My dad had radiation in 1988 for prostate cancer, and it has never returned. I was on a LIST SERV the other day and there is a big debate about surgery versus radiation. Some people view surgery as the gold standard and others as barbarism. It's really individual choice, depending on type or prostate cancer, age, etc. One guy posted saying that he would rather be dead than impotent. I would choose the reverse.. I had surgery because of the size of my prostate and because two lobes were involved. Figured it's my best chance of beating the disease or extending my life ... But my point with the study had more to do with watchful waiting.

arb
Regular Member


Date Joined Apr 2006
Total Posts : 36
   Posted 5/20/2006 9:31 PM (GMT -7)   

Hey All,

Found out my new PSA level on Friday morning......10.0!!!  It raised, no skyrocketed, from 3.2 at biopsy in February.  I want this stuff out!  Having robotic surgery on the 26th of June (they're scheduled out 6 weeks!) 


Thanks to all of you for your support and information!  I will keep reading until surgery...then afte a bit of R & R. :-)

Aaron


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 5/21/2006 9:33 AM (GMT -7)   
Aaron,
 
Go to the health food or whatever store and get some selenium. Take 200 a day and don't stop. This may...may inhibit some of the rise. Lots of research on this subject. Paul's surgeon is in his 3rd group study on selenium and lycopene as an inhibitor. Some believe it actually reduces positive margines by shrinking tumors to an extent.  Swim

hamala
Regular Member


Date Joined May 2006
Total Posts : 54
   Posted 5/29/2006 10:26 PM (GMT -7)   

Arb,

I am new today to this forum.  I have read over your questions and responses.  I am also 41 and diagnosed a couple of weeks ago with prostate cancer.  Based on my research, which is fairly recent needless to say, we have to get rid of the bugger!  It is our best chance of being completely cured of the cancer.  If we were much older, we would have other options.

Banking sperm for future children is a good plan.  I worked in the field of fertility for many years and sperm freezing works very well for many, many years.  You will also have the option of retrieving sperm from the vas deference if needed.  You will want to be around for you future kids.  I feel confident in yours and my decision.  I have scheduled the deVinci robotics procedure for August.

Even though my wife and I feel good about our decision, I am very concerned about the side effects of surgery.  It sounds like recovery will be quicker than open surgery, but similar side effects.  This is where I need some reassurance from others. My doctor says there is not much I can do prior to surgery to help outcome.  Any advice?  Please keep me updated as you approach surgery next month.  Be sure to discuss your feelings with you wife-to-be.  I am finding out how important that is.  I know the first week I was supporting my wife and family how everything will be fine.  The past week, I needed the support.  I was so angry about the situation and possible future effects from the surgery.  I think the journey will be an emotional roller coaster though. 

Best regards,

Michael

 

 

 


EB02
Regular Member


Date Joined Dec 2005
Total Posts : 48
   Posted 5/30/2006 1:16 AM (GMT -7)   
Michael - The best thing you can do between now and your surgery in August is to try and be in the best physical shape you can prior to surgery. That will make surgery and your recovery go better. You should try to rid yourself of excess weight without risking being too thin so that you have no reserves. Being in good aerobic shape will help you also. I did a lot of walking before my surgery, which was good because walking was the best post-surgical strategy to promote recovery. You could start doing Kegel exercises now since they will be an important part of your recovery to promote urinary control. Keep your spirits up as well because attitude will be important. Treat yourself to things that bring you pleasure. Enjoy lots of sex so that you're in as good of shape in that department as you can be. Most doctors suggest that although they can't get you back to better than before surgery, they can get you back to your pre-surgical level of sexual health.
 
If you have a good surgeon, the precision offered by the robotic surgery should minimize your side effects. I had robotic surgery in September and had almost no urinary incontinence. I was only out from work a couple weeks and resumed a heavy travel schedule after three weeks. I was up and walking the same day of surgery and pain was easily managed. Getting the catheter out on the sixth day was a major step toward normalcy. I wore Depends male guards for a while as protection against urinary incontinence, but didn't really need them.
 
Hopefully your doctor or medical facility will have a good program for erectile dysfunction. Most things that I have read suggest that it takes nine months to a year on the average to restore erectile function, assuming that nerves are able to be spared. about a month after surgery, my doctor prescribed a vacuum pump (Osbon ErecAid) with instructions to pump myself to an erection three times a day (in succession) to prevent atrophy of the vascular system and to combat penile shrinkage which occurs post-surgery. He also prescribed a dosage of 50 mg of Viagra to be taken three times a week to promote blood flow. I have appreciated this approach. Although I am still only eight months out from surgery and not fully recovered in the potency department, I sense that things are improving and I am further along than I would have been otherwise. So far, I have declined the shots that my doctor also recommends (Trimix) to almost guarantee an erection (that lasts about 90 minutes whether you need it that long or not), but I am reserving that option for the future if necessary. You are considerably younger than me (I am 54) and studies suggest that younger men have better and quicker recovery from the sexual side effects.
 
By the way, it was possible to have an orgasm in the first month post-surgery, manually without an erection. Of course, orgasms are now dry but the sensations are still there. One effect of this surgery is that you and your wife will need to develop greater sexual creativity, which is not all bad.
 
Yes, there will be somewhat of an emotional roller coaster. I'm on the other side of the big dips in the roller coaster track and life is good. I tried to not get excited about things in advance. This was never as bad as I thought it would be, so there was some energy wasted on worrying. The best part is that I am cancer free (with two post-surgical PSA tests to prove it). That is huge and would have been worth more than anything I have given up to get there. You've made a good decision and I hope you will be as successful in carrying it out as I have been. It's great to live in an age of good technology for diagnosis and cure. Good luck!
 
 

spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 5/30/2006 6:17 AM (GMT -7)   
Hi Michael,

Thought I might give you some sugestions prior to your procedure. Ask your doctor if a Kegeling regiment now would be benificial to your recovery later. Several members have done this with good results. You might also want to buy a package each of Depends & Serenity for men now; you'll have enough to do post-op without having to go shopping for those items. Also you might consider dietary supliments to help speed your recovery as well.

I went through the da Vinci procedure on 2/23, and I feel it was the best choice. Good luck to you in August, and keep us all posted if you have concerns.

Glen
New Topic Post Reply Printable Version
49 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Tuesday, December 12, 2017 7:26 AM (GMT -7)
There are a total of 2,904,340 posts in 318,745 threads.
View Active Threads


Who's Online
This forum has 158135 registered members. Please welcome our newest member, Sinemac.
355 Guest(s), 8 Registered Member(s) are currently online.  Details
Lapis_29, Sherrine, ASAdvocate, RobLee, garyi, BostonMarigold, k07, JkorourkeRN for husband