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Just joined the "club" at age 40 - a few early questions

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Posted 4/3/2009 1:14 PM (GMT 0)
As you can see in my subject line, I just joined the PCa "club" this week at the ripe old age of 40.  I've never faced any health related adversity in my life, but decided to push my PCP for a PSA test this year because of family history.  Well, my PSA came back at 19.1 (!) and it's been a whirlwind the last 3 1/2 weeks to say the least. 

Anyway, I received my biopsy results this past Monday (results below) and CT and bone scans (performed yesterday, no results yet).  I've been devouring everything I can about PCa including Dr. Walsh's book.  I'm meeting with my urologist this Tuesday to discuss my diagnosis and start discussing treatment options.  I want to be as prepared as possible with questions.  My chief goal right now is validating the stage and organ confinement probability. There was no stage indicated on the pathology report, but the urologist says it should be T1c.  Here are my questions:

1) My very high PSA and palpable (although benign) nodule would seem to contradict my 3+3 biopsy Gleason scores.  Everything I've read in the last several days seems to indicate that this high of a PSA score equals a more aggressive malignancy.  One item of note is that I did have a lung infection (bronchitis or pneumonia) for a month prior to my DRE.  My urologist thinks that the infection may have elevated my PSA to this level.  It seems like have another PSA datapoint is critical before making a decision about treatment options.  How should I proceed with my urologist on this?  Insist on another PSA after the effects of the biopsy have worn off?  His indicated stage seems like more of a guess at this point.  Is this typical?

Once I have a handle on this, treatment options will be considered next.  Here are a few questions to get me started.

2) Assuming that this is organ confined, everything I've read points to surgery for someone of my age.  Is this still the consensus or are the cure rates for radiation (brachytherapy, maybe with EBRT) really comparable?  The posts I've seen on salvage surgery are a little scary.

3) Are there any advanced imaging technologies available which can determine whether nerve bundles can be saved prior to having  surgery?  I'm not really looking for probability or chart percentage, I'm looking for a clinical thumbs up or down for my case. 

4) While I'm not unhappy with my currently urologist (never had one before and have only known him for two weeks), I'm going to be looking for other opinions.  Does anyone have an recommendations for a highly experienced and skilled urological surgeon and  a urological oncologist in the Rochester, NY area?  My father had Dr. Jean Joseph who is one of the nation's expert Da Vinci surgeons, but that's about all he does.  I want to consider all options at this point.  I am going to attend a local support group to ask this question too, but I just thought I'd put it out there.

Thanks in advance for all of your help, this looks to be a great group of people.

-Dave

Posted 4/3/2009 1:37 PM (GMT 0)
Dear Dave, Today is our own son's 40th birthday..... I am so sorry that you have had that news. My husband was also dx at 63 and he has had numerous treatments. His first PSA was at 63.....I really think if he had had an earlier test at say 40 or 45, he could have caught the cancer earlier, and the first treatment would have sufficed. You are lucky you caught it early, and I am sure that others will jump in here to tell you their experiences.. Especially some of the younger guys..... You are wise to learn all that you can, and to read and listen to many that have been through this.... Good luck to you....We are hear to listen. Diane
Posted 4/3/2009 2:41 PM (GMT 0)
Hello and welcome here Dave, sorry you need us, but so glad you found us. Yes, you are the youngest or among the youngest here. At 56, my urologist said I was one of his youngest PC patients ever! Sounds like you have already learned some good information. While others here may argue the fact till the cows come home, salvage surgery is a brutal affair at best, and many drs. won't perform the surgery because of the high failure rate and complications. I hope your PC stays at gleason 6, but more often than not, after surgery, the gleason ends up being upgraded to the next level. If that happened, you would then be a 7, which is much more aggressive then a 6. You do have all your options in front of you, and you should check them all out. It will be a tough choice, but in the end, you will make your choice and never look back. With a PSA that high at your age, and having 4/11 cores positive, I would view your situation very closely. The robotic surgery seems to be the trend now, and seems like the majority of men here that had surgery did it that way. Only your surgeon will know if you are good candidate for that, sometimes heavy weight, and other factors makes the robotic not practical. I had open surgery, by choice, but my surgeon said that due to a very deep and narrow prostate bed once they opened me up, they would have had to abort a robotic procedure even if they had started one.

I wish you all the best luck and good thoughts as you figure out what is best for you. Two of your children are the ages of my grandchildren, so I know this is hard with such a young family. Please keep us posted and come back often.

David in SC
Posted 4/3/2009 2:45 PM (GMT 0)
P.S> Just spotted the number of men in your family with PC, more of a reason that it was a good thing this was caught at such an early age.
Posted 4/3/2009 3:02 PM (GMT 0)

Welcome to the best place to talk about our battle. I was diagnosed at a very early age as well. It is trying both mentally and physically but hang in there!! What got me through alot was that I was lucky to be diagnosed early on and if not would have been much worse. Keep you focus now on beating it!!!

Livestrong!!!

Posted 4/3/2009 3:41 PM (GMT 0)
Dave,

Sorry that you found this place on the internet, but we're glad your here. Pull up a chair and have a beer.. ignore. the people saying too many beers causes PCa.

Seriously, you've come to a great place to get answers and advice. It looks like your already well on your way to learning about PCa. You can find more information along with mentors here: www.YANANOW.net

Good luck and keep you wife actively involved.
Posted 4/3/2009 4:05 PM (GMT 0)
Yes, sorry you're here. Best advice I got from this board was.....you have lots of time to check ALL options. My husband choose brachytherapy but his options were limited because of MS.

God bless you in your search for the best treatment for you. Prostate cancer is very treatable but do your research.
Posted 4/3/2009 4:11 PM (GMT 0)
Dave,
Sorry to have you here at such a young age. Since my Dx I have insisted that my 3 sons ages 42, 40 and 39 to take their PSA test immediately. So far only the oldest has done so and it is less than 1. You are at a cross road right now. You will get a lot of opinions and options, make sure you consider them all. Once you decide, don't look back. From my experience, the Da Vinci surgery was not bad at all. Had it done on Monday, out of the hospital the next day, catheter removed a week later and now almost continent after less than 8 weeks. By the way, my doctor (Dr. Fagin) who has done more than 1300 Da Vinci surgeries trained in Rochester.
Posted 4/3/2009 4:45 PM (GMT 0)

Steph,

I was diagnosed three years ago at 41. I know what you're going through. It stinks. But please be aware, although you should be concerned and deal with this, your odds of beating this thing are excellent. I'll do my best to answer your questions.

1. Gleason is much more accurate at predicting aggressiveness than PSA (just look at some of the aggressive cancers on this site with PSA's in the 2's). In general, PSA serves as a 'yellow flag' that there may be a problem, but it's not always very accurate in predicting what the problem is.

2. I was told, because of my age, that surgery was my only prudent option. I saw three urologist, who all told me the same thing. I did not visit any oncologist, etc..., but I did read all I could. Looking back, I think I would have probably made the same decision, based on my life expectency of another 40 years. However, I should have looked into other options, and I recommend that you do also.

3. As far as I know, the surgeon cannot predict whether or not he can salvage the nerves until he gets in there. As I said above, I spoke with three surgeons, including head of uro at Vanderbilt, who all told me this.

4. Sorry, I'm from the South. Don't know any NY docs.

Also, should you choose surgery, don't get to caught up in the open vs robotic argument. Find a good, experienced surgeon that you're comfortable with. I chose robotic, my brother chose open. Our recoveries were similar.

Good luck,

Smokie

Posted 4/3/2009 5:09 PM (GMT 0)

Dave, sorry you are here but this is a great PCa resourse site. The guys and gals on this site are top notch and there are several really knowledgeable people here.

Like you I was dx young, age 43 for me. Given my age, my research lead me to believe surgery was the best option for me.  I choose Davinci robotic surgery. All treatments come with side effects. With surgery there are immediate side effects, such as ED and incontenance, that wear off over time. With radiation there are no immediate side effects but within a few years permanent side effects kick in. I'm baseing this on articles I have read and people I have spoken with that went the radiation route.

You have to do your research, it seems you've done that, and make the best choice for you. It is a very individualized decision to make and only you can make it. Good luck and Godspeed!

Posted 4/3/2009 8:10 PM (GMT 0)
Thank you all for your responses and support. Please keep the info coming for any who haven't had a chance to respond.
Posted 4/3/2009 8:14 PM (GMT 0)
Believe me, Dave, we all have lots of opinions and experiences here, build it, and they will come. lol.
Posted 4/3/2009 10:33 PM (GMT 0)
Dave,
The high PSA with a low gleason can be caused be a couple of things.
1. The tumor is a transition zone tumor which is usually contained but generates a high psa.
2. The cancer has spread outside the gland to the lymphnodes.
3. The tumor is large enough to generate high psa.
4. The psa is coming from an infection and not from the PC.
You should really try to find out what is causing the high PSA as it will affect the treatment option you choose. Your PSA puts you in an itermediate or high risk catagory.
An MRIS with a telsa 3 machine (most facilities use a Telsa 1.5 and should be avoided) should be able to see the tumor and it's location. Using the size of the tumor and its location a good oncologist should be able to determine how much psa the tumor is generating along with your normal prostate. If your PSA is higher and you don't have a transition zone tumor, then it is probably coming from outside the prostate. In this case a Combidex MRI can accurately eliminate or identify any lymph node involvement.
If you have a transition zone tumor it is important to know exactly where it is located as the uretha passes through the transition zone. This is a difficult surgery and should only be performed by a top surgeon because getting a clear margin without injuring the uretha is very difficult. Radiation may be a better option in this case.
Right now your urologist is only guessing at the staging and it's way too early to determine a treatment option. Once you have staged your PC then you can better determine what treatment is the best for you.
Because of your stats you need a good prostate oncologist that can think out of the box like a dectective to find out exactly why your psa is so high. I would not trust a urologist to have this skill level.
The PCRI web site has a list of prostate oncologists and a lot of information for the newly diagnosed.
Please keep us posted on your progress, best of luck.
JohnT
Posted 4/3/2009 11:02 PM (GMT 0)
steph_beer_me

Welcome to Healing Well, just sorry you had to join us at such a young age, but maybe it is for the better since I see three others in your family have had PC. How did they do after diagnosis and treatment? A few things to think about as you await more news next week. The CT Scan looks for nodules and abnormal growths on your internal organs nearer the prostate and the bone scan looks for possible migration of PC to the bones. Patrick Walsh's book was an invaluable source of information for me but there are many others also, use them. Also next week when you talk to your urologist listen closely to what treatments options are open to you. Ask what his recomendations are and "ask why." Ask for a referral for a second opinion if you feel it is warranted and your urologist should not refuse or alarm bells shoud go off in your head if he does. And remember you must save your own life first. A wife and three children are depending on you to be there for them.

Nothing but the best of wishes for you next week, you are no longer alone.
Posted 4/4/2009 2:40 AM (GMT 0)
Dave,
I am glad you found this site. There's a lot of information here. I did not found this site until after my surgery. But I don't look back and I did not regret of going to surgery with just few information from what I've read and from the urulogist that I sought for their opinion. Eventually, like everyone else said.. it's going to be You to make the decision of how to move forward. Involve your family in the decision making, because they too will be affected in one way or another especially your wife. Weigh the different options and think what you consider most important.. quality of life or get rid of the PCA. As you know there heartbreaking side effects.... the incontinenence and ED. For some lucky guys here.. they've regain full control in just a matter of months. Some took a year or so and some even much longer. Each patient is different. Good Luck and stay in touch.
Posted 4/4/2009 3:13 AM (GMT 0)
Hi Dave,

So sorry to hear you dx. I was in your shoes just a couple of months ago - similar pre-op PSA and gleason score, early 40ies and two small kids of 8 and 10. In my case, a little more of the cores were cancerous and the % was 10% to 80% of cancer.

Re-checking your PSA would be good, unfortunately after a biopsy the PSA will rise for the next 2-3 months until it settles down, so you cant really get a new PSA test until about 60 days after biopsy. Also, as others have said, the more important factor for you right now is the gleason score of 6. Hang onto this GS6 as it is your bright spot for all the other bad news of your past weeks.

I did spend a significant time to investigate the available treatments, and received much good advice here from the experienced posters. For me it boiled down to two options for this intermediate/high risk PCa - surgery or seeds + radiation. For seeds + radiation, RCOG in Atlanta (Dr Critz) do have the largest database of patients with cure rates and they will even send you an estimated cure rate based on your data.

Both those options seem to have similar cure rates (and I assume this is your top priority given your young age and small kids), and if you have a highly experienced surgeon the side effects should be similar as well. For the surgery, I can highly recommed you to get an appointment asap with Dr Patrick Walsh at Johns Hopkins in Baltimore. He is pure genius but has a long waiting list, so the sooner you get in line the better.

Both RCOG and Dr Walsh will ask for a second opinion biopsy report and crossing fingers it should confirm the gleason 6.

As for my choice, I consider myself lucky that I was able to secure a surgery with Dr Walsh and would attribute a large portion of my relatively easy recovery and great pathology report to his exceptional skills.

With all that said, unfortunately you will have a coupe of pretty dark months ahaid of you with all the uncertainties surrounding this disease. On the bright side - at some point in this journey you start enjoying every moment of every day in a whole new way.

If you need to talk in person, I would be more than happy to grab a phone and give you a call. 

Posted 4/4/2009 6:50 AM (GMT 0)
Hi Dave,

I was a little older than you at diagnosis, but understand how you feel. From my signature, you will see a pretty good story, so I hope it helps you to see that there can be a good outcome from this. The critical thing is to get the cancer out. Finding it now has probably saved your life. You are on the right track: keep educating yourself and seek a variety of opinions. Even if it doesn't lead you to a different treatment option, it will give you a feeling of control back. The feeling of loss of control after the diagnosis is not good. Then find the best possible and most experienced surgeon/practitioner for your chosen treatment option, prepare well physically and mentally for your treatment and give yourself the time and space to recover properly. All the best.
Posted 4/7/2009 6:38 PM (GMT 0)

"Welcome" for lack of a better word ...

As others have mentioned here, this forum is a wealth of information and, fortunately or unfortunately, more and more men are being diagnosed younger and younger.  My husband was 44 with a 10 and 15 year old at home ...

My advice to you - research and keep your wife involved - it is unfortunately a family disease and you must keep the lines of communication open - trust me on this.

My husband chose Brachytherapy out of Princess Margaret Hospital in Toronto.  Let me know if you want any information on that topic - Lord knows I've researched it enough.

Good luck in your decision.

JustJulie

Posted 4/7/2009 9:47 PM (GMT 0)
DAVE , WERE GLAD YOUR HERE, PLEASE STAY WITH US FOR THE JOURNEY ,AS YOU CAN SEE BY MY SIGNATURE, I WAS 43 AT DX, I VERY HEALTHY 43 , COULD STILL RUN 3 MILES THE DAY BEFORE SURGERY, ALL I CAN SAY IS ,GIVEN YOUR AGE , I WOULDNT DO ANYTHING BUT SURGERY, AND YOU GET 1 SHOT TO DO IT , SO DO IT  RIGHT , I AM THRILLED WITH MY CHOICE AS WELL A S MY OUT COME, WHERE DO YOU LIVE? THERE ARE ONLY A HANDFUL OF SURGEONS  THAT CAN DO THIS CORRECTLY, (MY OPINION) AND ALOT OF THESE GUYS KNOW WHERE THEY ARE  C.O.H. WAS MY CHOICE FOR NORTHERN CALIFORNIA, NORMALLY YOU HAVE A LONG TIME TO MAKE THE DECISION , IM NO DOC ,BUT IF MY PSA WAS 19 I WOULD MOVE ON IT YOUR GONNA BE FINE MY BROTHER KNOW THAT ,,,,,,,,,,,,,,,,,,,,,,,,,,,,DIRT
Posted 4/8/2009 7:02 PM (GMT 0)

OK, I received my bone and CT scan results yesterday and everything was negative - although I apparently have some slight arthritis beginning in my left ankle :-) .   My urologist indicated that surgery was my best option for long term cure and survival.  I know that it's only been a few weeks, but I've done a ton of investigation and reading and I have to agree with his recommendation at this point.  I do want to speak with some other surgeons though, which brings me to my next question:

My personal situation: I live in Rochester, NY which has a access to some pretty good urological surgeons at Strong Hospital (U of R Urology Deptartment).  That said, I am willing to travel, at least regionally, to get to the most highly skilled surgeon that I can. This is a one shot deal after all.

1) Having no personal relationship or knowledge of the field of urological surgery or surgeons, how do I go about seeking out the best possible person (in my case) robotic prostate surgeon?  Unfortunately, my insurance company is not going to pay for me to interview or consult with 10-15 different doctors.  I'd like to get a top 3 list together and set up appointments.  I will prefilter by number of DaVinci's performed at a minimum of 200-300 by calling their offices and requesting that info.   From a process standpoint, about the best I can come up with is networking with friends, family, local support groups, and forums like this.  Can anyone think of any other resources that I can tap?

Here's my top 2 list so far which I'd like to get anyone's input on, if possible.

2) My urologist's recommendation (he is also a surgeon) is Dr. Hani Rashid here in Rochester.  Has anyone ever heard of him or have knowledge of his skill?

3) Chas036 mentioned Dr. Ash Kewari as a good surgeon in NYC who has a new technique for reattaching the urethra to the bladder to minimize incontinence.  I called his office this past Friday and he is still doing surgeries personally.  Does anyone have any personal experience with him?

Thanks again for all of your responses and encouragement

Posted 4/8/2009 10:57 PM (GMT 0)
Hi steph_beer_me
My prayers are with you and I wish you all the best in your decision. When I was in the process of deciding, I looked at the surgeons who had done at least over 1000 Robotic surgeries. Looks like you are in the right path to have a full recovery. In the next couple of weeks it will be my first year's anniversary. Again good luck as there is not much I can add seeing all the great advice you've gotten. This is the greatest site. Anytime you are a little scared just log on here and I promise you by the time you log off, you will feel much better.
Posted 4/8/2009 11:07 PM (GMT 0)
dave.......since your on the east coast try  looking into this guy,,dr.david samadi he is an excellent surgeon who was one of the first pioneers of the robotic has something like 2000 of them done just my input ,,,,,,,,,,your definatly headed in the right direction,,,,,,,,,,dirt

Posted 4/9/2009 12:03 AM (GMT 0)
Hi Dave ,I just came across your story, as well as a number of other difficult stories. I also just found the group. My battle has been in the advanced stage for almost 2 years. I was diagnosed at 38. depression almost took my life. Really began fighting back 10 months ago and fear and anxiety are not dominating my life today. My name is dave also. I was told by Dr. Patrick Walsh that surgery was my only option. Just google his name and you will see him. Has interesting video with Charlie Rose. My display name is knaps. hang tough and believe.
Posted 4/9/2009 7:45 PM (GMT 0)

Dear Dave:

Like all of the others, sorry you have to join us here...especially at such a young age.  I lived in Rochester for many years and, yes, you do have access to some wonderful medical facilities there.  The Wilmot Cancer Center has some very, very good and experienced docs and you would do well, in my opinion, to spend some time with them before branching out.  Of course there are well known practicioners at Hopkins, MD Anderson, Mass General, etc, but, since you are somewhat limited by your insurance, why not start with some fine local options.

Wilmot has a multidisciplinary approach that you may find useful.  I know that you have an early intent to have surgery and, at your age, that may be the right approach.  But, you owe it to yourself and your family to speak with docs other than surgeons so that you are sure about your decision.  Wilmot not only has experienced surgeons, but also radiation oncologists and prostate oncologists.  If I were you I would go there and let the "team" examine you and reveiw your stats.  That way you will be well informed...it may be that each doc has their own biases but at least you will have taken the time to hear them all.

Finally, you might want to refer to a recent thread here by realziggy.  He just underwent a clinical trial for Targeted Focal Therapy (TFT).  In that protocol there is extensive biopsy mapping and only the cancer is targeted for treatment.  There is not extensive long term data on this procedure but there is a certain common sense thought process to only killing the cancer and not the whole gland.  The SE's seem minimal and there is preservation of alternatives should the cancer return.  Anyway, you might want to give this a thought.

Best of luck,

Tudpock

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