My 45 year old husband just diagnosed last week!

Hi all,

My husband was just diagnosed last week:

T1C, Gleason 3+3 =6, 2/10 cores pos. PSA 3.89

I can give you more info, but obviously we are dealing with low-risk disease.  I'm a Radiation Therapist, so I'm quite familiar with the treatment options.....unfortunately, that doesn't make it any easier for him to come to a decision!!

He's leaning toward surgery without too much delay.  We're meeting with a Rad. Onc. today to discuss Brachy and Active Surveillance, and have a consult booked with an Edmonton urologist (Dr. Eric Estey) who performs the robotic prostatectomy.

I know that there is increasing evidence to support that VERY young men with low risk prostate cancer are candidates for active surveillance, but I am REALLY not comfortable with it, given his young age.  Also, is a 10 core sample really enough to assess disease extent??  What makes me the most uncomfortable is knowing the stats about how many men whose Gleason grade/score is upgraded after prostatectomy, and also how many (even with low tumor volume) have positive post-op margins.

I'd LOVE to hear from some of you younger men about your experience and decision-making process!!  Also, if there is ANYONE who has had the robotic surgery performed by Dr. Estey!!

Thanks for your input!

Karen

 

Post Edited (kuls) : 3/11/2010 10:07:56 AM (GMT-7)

Hi Karen,
I am a younger man myself. I was diagnosed with advanced prostate cancer at age 44. I think you have one thing backwards about very young men. Active surviellance protocol is typically reserved for men with less than 10 years life expectancy in low risk cases, and less than 20 years life expectancy for very low risk cases.

That stated, there is plenty of time to make decisions. As he is monitoring his PSA for a while he can use the time to review all options.

Good luck in the coming months. and welcome to HealingWell...

Tony

Hello and welcome, Karen, and your husband.

Forty five is young for a dx, but we have younger ones here too.  My uro said I was one of his youngest patients, and I was 56 at my dx.

With you doing what you do for a living, having some inside knowledge on the radiation side, doesn't make the decision any easier.

The trouble wiith any PC dx with a biopsy, as you know, are you seeing the whole thing? did the biopsy miss it? (that happened to me twice) and am I seeing just the tip of the iceberg? At best, a biopsy dx. is just an estimate of what is going on inside.

Some would suggest using the color doppler imaging technology to see if it can a"see" the tumor and its extent.

It's not uncommon after surgery, as you said, that the Gleason and/or staging increases in the post surgery pathology. In others, of course, it stays the same. In rare offerings, it goes down.

On the surface, looks like your husband has most treatment options or even a period of AS available, but that is still a tough and personal call to make.

Wish you the best, and please keep us posted on your journey.

David in SC

Karen,

Sure you feel helpless, because at some level we all know that some of this is out of our hands. But one thing that you are doing very well, is being helpful. Gathering all that info and coordinating appts. is an act of love. Keep us posted as you can and we will be thinking of you and your family.

Michael

Karen,

I was diagnosed when I just turned 37 a week. It has been difficult, my doc had done over 2k robotic surgeries and I have been the youngest. I have taken the attitude that I am blessed that I caught it early. All of my reasearch based on my age pointed me to have the surgery. Yes there are side effects of the surgery my ED is coming back slowly through injections and sometimes med's.  The dribble comes and goes. The alternatives are much worse, good luck and please ask any ?'s as you go along the way. Just from my experience through it the biopsy was much worse then the operation. I know both you and your husband are in the shock stage. It took me along time to get out of the shock stage but it does come!!!

LIVESTRONG!!

Karen,
The one piece of advice I give to folks who come to me is to not make any decisions while the emotions are high. A cancer diagnosis is a very emotional thing and what most don't understand after being diagnosed with prostate cancer is that there is plenty of time to get past the emotional phase. You would be more rolling the dice with a knee jerk decision, than taking your time and making a calculated decision that is based on as much factual data as you can understand.

May peace be with and your husband. If you would like to read my story here is my website:

www.caringbridge.org/visit/tonycrispino

Tony

Hope you take the time to see Sedona while you are there. The Red Rocks are beautiful and about 2 hours south of the canyon. Have a great trip.

Michael

Kuls: Best advise I can give at this time is enjoy your trip. That is a beautiful part of our country. I was there last nummber. You are gathering info and the 2 of you will at some point make a decision as to which treatment is best for you to follow...Once you decide you can not look back. Best of luck on your journey. Do keep us posted as to your progress.

Cajun Jeff

Karen, welcome to the forum toy you and your husband. Looks like the guys have taken you all in hand...

 I am new to this so I am awkward, I am 55-At the age of 54 I had a Biopsy it was Dec 2009 it found 3 out of 12 cancer left side & I think 3+3 gleason, 7.4 PSA, Docs gave me all the choices I choose DiVinchi after  being railed at by my doctor for wanting watchfull waiting, He said I was too young for watchful waiting, I went into surgery on 4/20/09 @ 0800 AM I came out at 4-5 PM  I am 6' tall 225 lbs with a Computer gut, after several hours on the table the doctor had difficulty with my breathing because of the angle of the table for divinchi (it points head down) my body was not expiring (getting rid of) co2 as my insides were pushing on my lungs, so,  they stopped the surgery to allow the natural processes of expiration take place, they gave me fluids, 10 liters to help dilute the co2 (I think) and they waited an hour to see if the co2 would go down.  When they started back up the doctor could not find the urethra to reconnect it to the bladder (it had retracted) and he had to call in my uroligist to come into the hospital (from some distance away) to consult, all the while I am in surgery.  Finally they meet and greet and decide to open me up (RP) to find the end of the urethra and attach it to the bladder neck.  I woke up from what I expected to be a Divinchi surgery in the ICU with 10 liters extra fluid in my system, a ventilater still breathing for me, my blood pressure 240/140, I had micki mouse hands and because I was so bloated it was pushing all the IV's right out of my veins, Does anybody want to here the rest? I will continue if it's appropriate? 

Karen, My Dr. was also in favor of monitoring the PSA but I chose to have RRP. I chose that instead of the DaVinci because I had faith in my surgeon and he was more comfortable with the open surgery. Afterwards I asked if perhaps I had been too aggressive. He said that I had made the correct decision as the pathology showed that the cancer in one location had spread to the margin of the prostate. If I had waited....
Still, it is a huge decision with lots of implications for both of you. Good Luck.

Hi Karen,
Welcome to Healing Well. I wish you well in negotiating this maze. My husband was exactly 49 yrs and had intermediate risk but low PSA. We also took 4 months to decide and did this on basis of Gleeson score in the end. Fortunately due to luck, chance, skill and many other things, he came through his surgical treatment without any side effects although a long recovery with the ED, to full recovery. Like you, I did not pursuade one way or the other at the time (I am a nurse and had worked in spinal and urology - a bad past for this game too).
My husband took 4 months to decide his treatment, and saw 3 specialists in that time. We had many conversations and I always had a notebook handy to jot down questions we thought of. We always asked exactly the same questions to at least 2 professionals if it was a queston we had researched. Check it all out, take your time, and good luck. You will find this site is invaluable for getting info on any treatment plan you are researching, or thinking about. There are always a variety of opinions of course, but in the end, it is his sole decision. It sounds like, despite the horrific shock of this happening at his age, that you do have a positive and good attitude. That is really important. Good luck and take care, Lana

Hello Karen, I also was dx with pc last November at 45 years old. My numbers were very similar to your husband, I had a psa of 3.5, 1 of of 12 cores was positive for cancer and my gleason was 3+3=6, stage T1c. I had my prostatectomy in Moncton NB on January 8th, back at home on the 10th and catather removed on the 15th. My pathalogy report after surgery came back with an unchanged gleason, however I had cancer in both lobs of the prostate and in total 35% of my prostate had cancer, and upgrade stage to T2c. Everyone is different but I chose surgery because for me it was the only way of knowing exaclty what was there. I have been completey dry after 6 weeks post op and only use a pad when I go out in public...just in case.