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Advice for a younger guy?

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Posted 6/18/2014 8:33 PM (GMT 0)
Hi, there. I have been reading everything I can about PC, but can't find much "advice" about younger men with PC. My husband is 41. Here's what we know:

May 2013 PSA was 1.3
May 2014 PSA was 7.5
May re-test was 6.8

Biopsy results: 2 out of 12 cores tested positive, 5% each
Gleason is 3 + 3= 6

We go next week to discuss options with the urologist. I am hoping that some of you can offer some advice? I know you're not doctors and I am not looking for "medical" advice per se, I am looking for real world, practical, been-there-done-that advice. :-)

Thank you in advance!
Posted 6/18/2014 8:58 PM (GMT 0)
Your husband appears to have "very low risk" prostate cancer based on his biopsy and psa.
He has all treatment options available, surgery, radiation and Active Surveillance. AS is an option for younger men with very low risk PC, and delaying treatment for a few years is also a viable option. Don't eliminate any treatment options until you have carefully researched all options and their accompanying side effects. You have years in which to make a decision so time is not an issue. Any treatment or non treatment will have very favorable outcomes in the high 90% range with his characteristics.
Posted 6/18/2014 9:21 PM (GMT 0)
Thank you, John! My research is flawed due to so little research on men his age and I'm running into " age roadblocks" everywhere I go it seems. It's frustrating since this " older man's disease" seems to be getting younger and younger?! His urologist ( from a leading research hospital) even admitted that he would have to do some researching of his own to be able to best advise us. Thanks again!!
Posted 6/18/2014 9:22 PM (GMT 0)
I think the advice above is an excellent starting point for your husband. One suggestion would be to increase the frequency of PSA testing. I would suspect that your urologist will suggest this in any case due to the upward velocity displayed. You have absolutely no reason to rush at this point and if your Dr. pushes for rapid action, he either needs to give you a highly credible explanation or you need to find a new Dr.. I would strongly recommend you get a second opinion on the biopsy by Epstein at John Hopkins or Bostwick to confirm. Lots of info on this site about seconds from both.
Posted 6/18/2014 9:47 PM (GMT 0)
I had 3+3 found during a transurethral resection of the prostate due to an enlarged prostate causing lower urinary tract symptoms. Well, the procedure did not relieve my symptoms so I had help in leading me to my decision for a prostatectomy. For me, (now 8 weeks out) the surgery and recovery has been good. I have total continence and moderate erectile dysfunction that is improving. The whole surgery experience was relatively intense but, looking back, not so bad.

I was 54 at diagnosis and otherwise in good health but did have a family member with prostate cancer. I lost my mother to cancer and my wife is battling cancer so I had pretty much decided to throw everything I could at it even with the 3+3 at 10% at diagnosis.

I studied my situation at length (outside of and on conjunction with docs) and was and am totally comfortable with my choice and where I am.

Best wishes,
Posted 6/18/2014 10:07 PM (GMT 0)
Say what,
I was recently diagnosed with a similar situation. I am 7 years older than your husband, same Gleason 6 cancer but in only one core at 1%. My PSA is 4.99. So, to your point about what to do. Active Surveillance would be the best course of action. PSA testing every 90 days. If it continues to go up, then you can evaluate what to do. The good thing is that your husband's cancer (and mine) is a fairly non aggressive grade. Every situation is different and there are multiple options to consider. You have time. Do not rush into a decision.

I personally will likely have my prostate taken out at some point. I do not know how far in the future this will be. It all depends on if my PSA continues to rise and the tumor grows. It may be 6 months, 2 years 5 years or perhaps never. I do also personally believe that for someone his age he is likley better prepared physically to overcome the side effects of surgery.

Good luck. Lots of smart people on this site willing to help.

Just know that your husband cancer is manageable. He has options many on this board didn't have. That is a very good thing.
Posted 6/18/2014 10:44 PM (GMT 0)
I was in the exact same boat originally except I was a year younger. I was later upgraded to a G7 4+3 but all my initial consults and conversations with experts were done with the same stats as your husband.

I was unanimously told by several experts, most of which didn't have anything to gain from me, that at my age I should seek treatment. I was told that surgery and radiation would be equally successful for me.

I spoke with renowned oncologists in Boston area thanks to connections I had to them, top surgeons, top radiologist who does BT at Mount Sinai, a few local urologists, and finally my surgeon who happens to also be a urologic oncologist. They all advised on treatment. Nobody advised AS at my age but then again I didn't discuss AS with anyone who "sells" AS because I realized it wasn't for me.

AS could certainly be for you, however, so you owe it to yourself to talk to someone about that too.

There is nothing good about getting PCa, and I'd opt for a more potent form of the disease at 70 than my "curable" version at 40, but at the same time treating it at such a young age and in the hands of a superstar are probably the two main reasons why physically I was back to normal immediately on the urinary side and within a month on the sexual function side.

you'll get plenty of anecdotes from people here, all of which benefited from different by equally successful and viable options. Unfortunately one of the hardest parts of this process is realizing which option best suits you.

If you'd like to talk to me you can ask the mods for my email. Also, if I were you I'd visit the Yana site and look up other men who share your husband's stats and how they approached their battle.

I wish you the best and am very confident you will be fine no matter what choice you make. Please remember that nobody her eis a doctor or an expert, this is a peer to peer support network where people can share their experiences with you. Although extremely valuable, these cannot replace the advice of genuine experts in the field.
Posted 6/18/2014 10:44 PM (GMT 0)
I was diagnosed at age 41. It is very rare for guys our age to have prostate cancer. My PSA was 9, biopsy Gleason was 3+4, and post-surgery pathology Gleason was 4+3.

Here's my "been there, done that" advice:
  • Get consultations with the best prostate cancer specialists you can find.
  • Read my links below for guys newly diagnosed with PCa. Especially the first one (the PDF book).
  • Read Dr. Mulhall's book (linked below). You should know the facts about how PCa and PCa treatment impact your sex life. Read the book before you make your treatment decision.
  • Ask good questions to the doctors you consult with (see my links below) and take good notes.
  • Once you choose a treatment path, don't second-guess or look back, unless your medical condition changes.
  • If you plan to have "active" treatment like surgery or brachytherapy (seeds), have lots of normal intimacy now, because things will change. And, consider freezing sperm if you want to have children in the future.
  • If you plan to have surgery, get in shape now. Lose weight, exercise, etc. It will help with tolerating surgery and recovery.
  • Continue posting on this forum for advice and support.

-Gedman
Posted 6/18/2014 10:46 PM (GMT 0)
Sudden rises in PSA like that, especially when they go up and down, are more indicative of prostatitis than PC. Many men have small traces of PC even in our 40s and most are happy not knowing about it until we have to. He might want to talk to his MD about a course of Cipro, because it will be difficult to use PSA as a PC measurement tool while he has prostatitis on top of it. If he goes on Active Surveillance, which I think is the ideal choice, he may want to use the new PHI test, rather than PSA, to monitor progression or lack thereof. PHI is less affected by prostatitis and BPH than PSA is. You can read more about PHI at this link.
Posted 6/18/2014 10:56 PM (GMT 0)
Hi there, I just wanted to say that although you may want to rush into things, you have plenty of time to make decisions and research all options well. That is some of the advice we got a few weeks ago when my husband was diagnosed at 47 just a few weeks ago. His is much worse, but still applied to him and gave us both a LOT of comfort.

I am here if you want to talk ever, and you will find great advice and wonderful support here.

Krissy
Posted 6/18/2014 11:14 PM (GMT 0)
Everybody has posted great advise. The good news is you have plenty of time to research all of the options in dealing with prostate cancer. Active surveillance is a good option and will buy you additional time before jumping into a particular procedure. Plus who know what is right around the corner with new treatments and therapies being developed.
Posted 6/19/2014 11:57 AM (GMT 0)
Say What, At your age you have a lot to give up with treatment. I feel anyone with low volume Gleason 6 should investigate active surveillance first then other treatments if needed. I am starting to see more Dr. recommending AS regardless of age then even two years ago. You might want to consider a Polaris gene test which is a new promising technology to predict the aggressiveness of the cancer. You have to be your own advocate and do as much research as possible.  I have been trying to learn as much as I can now for over 2 1/2 years.
Posted 6/19/2014 12:10 PM (GMT 0)
So sorry you have to deal with this... I had the similar stats with an enlarged prostate and was told AS was not for me. I had surgery and life is not the same after treatment. If I could I would consider AS as long as you are comfortable. There are great books on PC and what the treatments entail and the side effects. I liked Dr Peter Scardini's book the best.

Good luck

Pat
Posted 6/20/2014 12:15 AM (GMT 0)
If you plan to have "active" treatment like surgery or brachytherapy (seeds), have lots of normal intimacy now, because things will change.

Another poster made this suggestion, but I would (and did) take the steps to give myself the best chance to continue to enjoy intimacy after a treatment decision . I did Active Surveillance for two years, and would have done it for 10 if my situation had not changed. There are no side effects from AS as long as you are comfortable with it, and if you are closely monitored by a qualified physician, there is no reason not to be.
Once it became clear that I would need to make a treatment choice, I made my decision entirely on the desire to be able to continue to be intimate with the love of my life. It is a decision for which I am grateful each time we make love. Believe it or not, our sex lives are better than before the PC diagnosis.
But again, this was no accident. Once it was clear that I needed treatment, I chose LDR brachy because I knew that it gave me at least as good a chance of beating the disease as surgery with a lesser chance of the side effects that I did not want. It is a decision for which I remain extremely grateful.
Now, I was 15 years older than your hubby at diagnosis. Personally, I think that being younger would have been an even stronger motivation for me to choose the path that I did, BUT I am not a doctor, and it is important to remember that most others here aren't either. You will get some good suggestions here, but they are just that, and each must be carefully researched by you and your husband.
I wish you both the very best, and with your husbands stats. there is every reason to believe that you will experience just that.
God Bless.
Posted 6/20/2014 2:54 AM (GMT 0)
THANK YOU everyone! My husband and I have read (more than once) all of your replies and advice. This forum is truly a harbor during the storm of his diagnosis.

We are still reading and researching as best we can. I will update after we speak to the urologist next Friday. For now, we are incredible grateful that it was caught early and we have options available to us.

Thank you one and all!

God Bless!
Posted 6/20/2014 10:40 PM (GMT 0)
Here's one main reason to consider AS if you're comfortable with it.  Who knows what better treatments they may come up with while you're waiting.
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