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48 and just DX - resisting the inevitable?

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Posted 6/23/2015 7:47 PM (GMT -5)
Hello,
I'm 48 years old, happy husband of 14 years, father of 4 children, a girl from a previous marriage aged 26, and with my wife now, a girl 13, a boy almost 10, and a boy just turned 6. I currently serve on active duty with the U.S. Army. I've been carousing this forum for a couple of months since I discovered, during a routine annual health assessment, that I have an elevated PSA of 7ish. Came to find out after I visited the urologist that I was elevated back in 2011 at 5.1, although nobody mentioned it to me at the time. Anyway, the PSA brought about a visit with our friendly urologist who, after a DRE, determined that my prostate was asymmetric and enlarged. They said I should undergo a biopsy, so I agreed and just a few days later I was assuming the position on the table top and enduring the "pop" of the big needle. The sonogram showed that my prostate mass is about 40 grams (twice what it should be at 48). So I just got the call from the doctor today that of my 12 cores, 4 were positive with 3 at G 3-3 and one at G 3-4. Two of the other samples also showed atypical cells, but not enough to get a score. Felt like this gives me license to join the club, so here I am.
Doc says that because I am so young, he is leaning away from radiation seeds and more towards a full prostatectomy. Says the radiation will probably only be a short term fix. Honestly, I'm pretty torn at this point as to what my course of action should be. I have time to think about it, so looking for some advise. My thoughts so far are, I'm only 48, and currently have no symptoms other than the side effects of the biopsy which will fade in time. From what I understand, prostate cancer is fairly slow to progress normally. I think that the side effects of surgery may outweigh the benefits! Incontinence, impotence...? These clearly are not conditions that anybody wants at any age, but I'm only 48 fellas. Since I have no symptoms at all, just feel like it might be a little early for that. Another factor for me is that I have a 6 month deployment coming up. For us folks in the Army, that's our bread and butter. I'll make an additional 1/3 of my annual income on that deployment. Granted, money means little if you don't have your health. My thought initially is to go on my deployment, check things out again when I get back in 6 months and take care of business then as needed. Hopefully make a full recovery, and be ready to go kick some more ass in another 6 months.
Any advice would be appreciated.
Your new friend, RobMan

Age 48, 48 at DX 06/23/15
PSA 5.1 2011, 7.1 03/15, 6.98 05/15
G 3+4 in 1 core, G 3+3 in 3 others
Stage T2A
4 out of 12 cores positive
Treatment undetermined
Posted 6/23/2015 8:32 PM (GMT -5)
RobMan-
Thanks for kicking a** over there, wherever "over there" might be. Let me try to break it down as I see it.

Biopsy results
The Gleason 3+4 is what puts you over the edge for most active surveillance programs, so the first order of business is to make sure they called it correctly. There are two labs, Epstein and Bostwick, (click for links) that read prostate biopsy slides only and are world-renowned for calling it correctly. You can tell your urologist that you'd like to have a second opinion from one of those labs. I hope your Army insurance covers that, but if not, it can cost $200-$250. If they say the 3+4 core is really a 3+3, that buys you some time.

Active Surveillance
Active Surveillance (AS) as the name implies, means you watch the cancer very carefully and are ready to jump on it if it starts to move. At the best institutions, they have a special kind of MRI called a multiparametric MRI (mpMRI). Within a year of your first biopsy, they would give you an mpMRI-targeted biopsy where they take cores from any areas in your prostate that looks suspicious. Some institutions will accept men with Gleason score 3+4 on their AS program, but many will not. They argue that those Gleason 4s are just too wild.

Too young for radiation
Your urologist is expressing his opinion, but you should be aware that is only his personal opinion. My opinion was at the age of 57 I was too young for surgery. I could not imagine living a lot of these years impotent (common) or incontinent (rare). I found a kind of radiation called SBRT that has a 75% chance of potency preservation and near 100% chance of continence. There are two kinds of brachytherapy called High Dose Rate brachytherapy and Low dose rate brachytherapy or "seeds" that have low prevalence of side effects too.

Radiation a "short term fix"
Pure BS. Modern radiation is given in high doses and with incredible precision and is every bit as curative for your type of prostate cancer (favorable intermediate risk) as surgery. Cure rates are over 90% for all of them. You have to find a radiation oncologist who specializes in each of those kinds of therapy and hear them out. Your urologist just doesn't know - it's outside of his specialty.

Time to decide
This is where that second opinion gets important. If Epstein or Bostwick confirms it's a GS3+4, you'll want to be able to move on that within the next few months. PC is symptomless at this stage, so you can't tell anything from the lack of symptoms. I'm concerned about your rising PSA. It's hard to find SBRT and brachy specialists in the US, let alone overseas. The surgeons are likely a lot better in the US too vs. wherever you'd be deployed to.
Posted 6/23/2015 8:42 PM (GMT -5)
Sorry about your news. Overall, +1 to everything that Tall Allen has told you.

If I could add anything it's that your doc lost me at "radiation will probably only be a short term fix." That is not a data-based opinion. Based on your biopsy results, radiation or surgery is highly likely to cure you. You need to learn about the treatments yourself and make the decision that works best for you.

Good luck and let us know how we can help.
Posted 6/23/2015 9:15 PM (GMT -5)
Welcome to the club nobody wants to join. You'll find some great guys (and a few gals) here who are all willing to talk you off the ledge when required. I don't know enough about how the military medical service works, and what kinds of options you have that either us civilians DO have that you don't, or vice versa.

I'd second the thought about getting your slides read a second time by a PC expert. That G 3+4 core is worrisome. It moves you into the "treat it relatively soon" category. It would help us suggest where to go if you tell us where in the states (I assume you're stateside at the moment) you're presently located.

What I found is that there are great docs, and great teams, everywhere. My personal opinion is that you can get great treatment all over the country, not just in New York, Baltimore, Chicago, or Los Angeles. I found a great team in St. Louis.

Oh, to comment on the SE (side effect) comments: There are a number of us guys in here who have had surgery in recent months and years who have little to no side effects. It's not a guarantee, not anymore. In that sense, it really is about the expertise of the surgeon...and they are all more than willing to share their personal stats.
Posted 6/23/2015 9:32 PM (GMT -5)
Hey Rob,

First let me say thank you very much for your service.

You mention about your upcoming deployment as a factor and it reminds me of how my work first mentality took over almost immediately after being diagnosed. I'm self-employed and a lot of my stress came from how I could keep my business going if I had to start treatment during my busy season; April to December. I almost did not want to let the facts of my diagnosis sink in because I had to work and treatment would have to wait until next winter. Fortunately some friends and loved ones got through to me that my business will mean nothing if I did not take this seriously and take care of my health first. One of my friends is in the same business and helped set up a plan where he would cover for me if I was recovering from surgery or needed time for radiation. They wanted me to focus solely on my treatment and for a while at least put my regular worries on the back burner. I'm not saying that it has been easy but as with most things in life we find our way through.

I think you do need time to get 2nd and 3rd opinions, maybe some more testing with 3T MRI if possible, targeted biopsy if needed based on the MRI. It is extremely important to know what you are dealing with because slow growing and time to deal with it may not be the case. You can see on this site alone that there are quite a few men who wish they had their diagnosis a little earlier before the cancer progressed to the point it did. When you fully understand how far your cancer has progressed then it will make the other factors such as deployment or not a much more objective decision.

And the treatment decision of surgery vs radiation is a whole other ballgame in itself that many of us have tormented ourselves with in the decision making process.

Best of luck to you and may you serve our country for many years to come...Jim
Posted 6/23/2015 9:43 PM (GMT -5)
Good advice above.

My first guy said surgery was my only realistic choice....

I was 48 as well. HDR Brachytherapy seven months ago and I'm doing great.

Good luck.
Posted 6/23/2015 9:57 PM (GMT -5)
At your age, I would prefer surgery performed by a prostate expert..As I see it, the problem with radiation are the side-effects, some of them ugly, manifest themselves 10 and 20 years down the road..Many men who choose radiation as their primary treatment are considerably older than you so their expected life-span protects them from ever suffering these side-effects..Surgery on the other-hand produces it's side-effects immediately and younger, healthy guys like yourself usually can recover completely from them..It all depends on the extent of your cancer and the skill of the surgeon. Radiation has made HUGE improvements over the past 10 or 15 years..The latest equipment, in the hands of an expert, is MUCH better at avoiding damage to healthy tissue than what they were using just a few years ago...

Lastly, I would get this taken care of now and not push the horizon out 6 or 7 months...In my OPINION, the extra money is not worth the risk....
Posted 6/23/2015 10:30 PM (GMT -5)
Hi Rob,
Thanks for your service, I served with the 11th Cav many years ago.
What Tall Allen said is totally true, and your Uro doesn't know what he is talking about. Going 6 to 8 months before treatment has a small risk, but a risk nevertheless. Another option is to take Casodex if you want to deploy as it will stop the cancer from growing and make the radiation more effective, but this option could make surgery more difficult. The side effects will be a loss of Libido and some hot flashes. The libido shouldn't be a problem on deployment, but the hot flashes could be uncomfortable in a hot climate, and welcomed in a cold one. Both go away in about a month or two after you stop taking the pills.
I spent 10 years from the time my psa started to rise above 4 to treatment, so delayed treatment had no effect on my outcome with a G 4+3. I was totally pleased with my radiation treatment with no side effects and a psa of .05 after 6 years.
You sound like you are comfortable with taking risks and still function knowing you have cancer, so waiting may be a good option for you. I would definitely get your decision on treatment done before you deploy so you don't spend a couple more months sorting things out when you get back. Your psa has gone up two points in 4 years, which is something like an 8 to 10 year doubling time. If it were under 3 years I would not recommend waiting.
As others have suggested a MP-MRI would be an excellent idea so you have a better idea of what you are really dealin with.
Posted 6/23/2015 11:20 PM (GMT -5)

Fairwind said...
As I see it, the problem with radiation are the side-effects, some of them ugly, manifest themselves 10 and 20 years down the road

What are you talking about? Do you have any documentation for this weird assertion?

Primary radiation side effects are of two kinds -- acute and late term. They are both irritative - frequency and urgency, rarely, strictures (retention) - rather than things like incontinence. Of course, if you're the very rare case that's super-sensitive, the SEs can be much worse - but that's, thankfully, very rare - much less than 1 in a thousand. Acute side effects occur within the first few months, and almost always disappear. Late-term side effects return a year to two years later and also resolve on their own most of the time. It's incredibly rare for those SEs to persist after the late term ones. In fact, urinary function improves over time and often exceeds baseline function.

It may have been true back in the day when they used 2D-RT that there were persistent SEs, but no one has used that since the early 1990s. Fairwind, you were probably told this stuff by some urologist who has no concept of modern radiation therapy.

- Allen
Posted 6/24/2015 1:49 AM (GMT -5)
Hi Rob,
You have already been given great advice from the guys who really are quite knowledgeable, so I will just say welcome and thank you for helping to protect our great country.
Beth n Gary
Posted 6/24/2015 6:40 AM (GMT -5)
RobMan,

Thanks for your service!

Have already walked in your boots so to say, in more ways than one.

I too was 48 when I was diagnosed. I also served just over 21 years in the Army...11Z5V...Retired as an Infantry 1SG from near by Ft. Drum.

I did AS (Active Survalance) when I was 3+3 G6
Six months later it was 3+4 G7

I chose RALP

Since then both ED and worse yet incontenance...you can't Soldier like that...trust me, even though I had been retired almost six years when diag.

9 months later my PSA went back up...so that got me radiation...
37 treatments over 9 weeks...that fixed the Cancer once and for all.

I just recently went through surgery to install an AMS 800 AUS.
Back to see URO today for two week follow up.

OK my advice, most of what was said above is good advice.
From the military aspect you need to do several things...
DO NOT WORRY about DEPLOYMENT...ANYONE CAN DO YOUR JOB! Don't go...this has priority...it's not worth your life, to put this off...get it fixed now!

Your BDE or BCT has a Nurse Case Manager go see them today, ask your medics, medo, BDE surgeon or who ever who that person is they can help you so much....

Email me for more details link to email under profile to left. My wife is a Nurse Case Manager, I know what they can do, they have the right people at there fingertips.

Don't use Army Doctors....find the best Uro/RO in your area and use Tricare.

Where are you stationed!

If you need anything just ask. My brother, 48 also just went through this...he also had surgery, is Cancer free and dry!


Get it fixed, good luck, here for you brother!

RLTW

1SG(Ret) Kilgore
Posted 6/24/2015 7:21 AM (GMT -5)
Thank you all for taking the time to offer me your opinions and advice! Tall Allen, your fast and extensive reply is most appreciated. I will get a second opinion on the pathology as soon as possible.
I think since I just found out I have PC that I'm probably still in denial about the seriousness of my condition, especially since there are no symptoms to drive it home. G3-4 coupled with the word "intermediate" cancer just doesn't sound that threatening to me, but I do understand that allowing it to spread would be a foolish mistake. Jim's point about my "work first" mentality is well taken.
Halbert asked where in the country I am located. I am currently stationed at Fort Campbell KY. Vanderbilt University Medical Center is only about 30 miles from me, although I do not yet know if the Army medical system will allow me to choose where I am treated. I plan on doing some fact finding today and will get back to the group once I know more.
Thank you all again, you've given me a lot to think about. Let the research begin!
Rob

Age 48, 48 at DX 06/23/15
PSA 5.1 2011, 7.1 03/15, 6.98 05/15
G 3+4 in 1 core, G 3+3 in 3 others
Stage T2A
4 out of 12 cores positive
Treatment undetermined
Posted 6/24/2015 7:24 AM (GMT -5)
Hello, Rob and welcome. Thanks for your service! I cannot really add to the excellent advice you have received from TallAllen and JohnT who are arguably the most knowledgeable members of our forum.

Get that second expert opinion on your biopsy slides and then go from there.

Best of luck,

Jim
Posted 6/24/2015 8:30 AM (GMT -5)
Hello Rob,
Thank you for your service first and foremost. Great advice given by everyone here. The only advice I would give is to gather as much info as you can and sit on it for a bit. Digest it all, and then make the decision that best suits you and your life. I was diagnosed at 49 on 2-14-14 and had surgery at Mayo 3-17-14. 2 positive cores, 1 @ 20% and one @ 50% opposite sides, 56 gram prostate. I couldn't pee and the enlargement was a real bother for me. Maybe too quick for some folks but i had to address it sooner than later. If you aren't having any issues, in my humble opinion you have time to weigh all your options. Doc's want to cut us younger guys right away and I think for me it was the right choice. I will admit though, Incontinence and Ed are a reality of having surgery. Still struggling with both but have had <.1 psa's since surgery. Good luck, stay positive and learn as much as you can.
Take care
Kirk
Posted 6/24/2015 8:32 AM (GMT -5)
Hi Rob,
Thanks for your service to our country. Sorry to hear that you've joined our club but as you can see, there are plenty of people here willing to offer their opinion of what route you should take. Some are more experienced than others but I am not one to determine who is better at giving advice. One thing you can take away from this thread is that there are lots of options, each with benefits and risks. We don't get to choose one or the other. Each treatment comes with both. You are a young guy, and being in the military, you are likely to be in great physical condition. That will help.

What I would like to offer to you, is that you consult with the medical professionals and fully explore what your options are, both in terms of treatment and in form of side effects. Then make your decision on what you are most willing to accept. While you appear to be intermediate risk, it sounds like you still have time to do this. Discuss this with your wife too. She is involved and the treatment you choose will also affect her.

Wishing you the best in you new journey and hoping that you find the best treatment available with the least possible side effects.
Posted 6/24/2015 8:37 AM (GMT -5)
I'll muddy the water by saying that although Tall Allen makes a lot of good points, I disagree on the long term impact of radiation. I would have written effectively what Fairwind did.

I think all agree on a second opinion on the biopsy slides, especially if they were done by the average path lab. Mine were done by Bostwick, and they are great people to work with.

That will give you a better orientation as to what options are practical.
Posted 6/24/2015 11:06 AM (GMT -5)
Rob, , you;ve gotten seriously great advice, and you;ve made a great decision to get busy researching your options. Get the second opinion, its extremely important. I used Epstein and Johns Hopkins, Bostwick, as I understand it is an equally good option.

I'm a surgery guy, we've all got our biases. Many who've had surgery and suffer from side effects would advise against it, I had a good experience, and would advise for it at your age. Many have had good experiences with radiation treatments in their various form, and many, or at least some, have had bad SEs.
That's why you've got to do your own research, to the point where you will be confident that you made the right decision for YOU,based on the information you have at the time, and won't look back and regret, no matter what happens.

Thanks for your service to our country, welcome to HW, and good luck
Posted 6/24/2015 12:04 PM (GMT -5)
Rob,
Good for you that you are getting some research done and being proactive. You have mentioned being asymptomatic several times, so you should be aware that this cancer causes symptoms to appear when it is too late, and your medical team should have been more proactive on your behalf at your first rise in PSA. Intermediate risk is great, but I can tell you from first hand experience with my husband, and from reading from others here, if it spreads beyond your prostate, you will have another matter to deal with altogether. I have also heard that prostate cancer in younger men is often more aggressive, but I may get corrected on that notion.
Whichever treatment path you choose, you should pat yourself on the back for getting it done.
Best wishes,
Beth n Gary
Posted 6/24/2015 12:26 PM (GMT -5)
142,
You have to understand that all radiation is NOT the same, and salvage radiation, such as you had, carries with it a whole different set and more serious SEs, than the initial radiation that Rob is contemplating. This is why I always say it's a very bad idea to go into surgery thinking one can always have salvage radiation later. There are salvages for all therapies, but none are as nearly as low on SEs as the original therapy.

- Allen
Posted 6/24/2015 12:39 PM (GMT -5)
TA,

I was not discussing ART. I was discussing RT as initial treatment. I did long and difficult research, and found the risks of RT as initial treatment for the PCa I exhibited at my age to be risky and with a fair rate of long-term issues that I would have to be concerned with.

You always seem to think I confuse RT with Adjuvant / Salvage RT. I know the difference.
Posted 6/24/2015 1:02 PM (GMT -5)
142,
I have no idea what research you looked at back then or whether it still applies. If you have something, show it, and let's discuss. The reason I think you're erroneously generalizing from your own adjuvant radiation experience is because I haven't seen any credible and relevant data to back up what you assert.
- Allen
Posted 6/24/2015 3:21 PM (GMT -5)
Rob, you will find a lot of feelings, anecdotes, passion and facts written here on our site. I'll just say that while you may find the feelings, anecdotes and passion interesting...they are not necessarily pertinent to your case. My advice is to work on learning the FACTS so you can make a reasonable decision.

Any of the main-line mono therapies is likely to cure you, e.g. surgery, LDR Brachy, HDR Brachy and SBRT. The value proposition of surgery is that you get a definitive pathology and (generally) the relative immediacy of your PSA dropping. The value proposition of the Brachy's and SBRT is generally less onerous sexual and urinary sides effects. The are exceptions to every rule but you have to decide what is important to you. There is stuff at the edges of the curve like fear of long term radiation effects and fear of dying on the surgical table but the chances of those with these mono-therapies are remote so I counsel that you ignore them and focus on the trifecta, i.e. cure, sexual side effects and urinary sides effects.

Jim

P.S. On the dust-up between TallAllen vs. Fairwind/142 re long term radiation issues, I personally believe the facts favor TallAllen. If you are interested I can share a recent multi-disciplinary study from Sloan Kettering that showed the chances of 10 year secondary cancers to be very small and about the same whether or not the patient had surgery, LDR Brachy or IMRT.
Posted 6/24/2015 4:13 PM (GMT -5)
Robman...
just want as one of the "younger" guys to give some support. You've got some good advice from everyone. .. I'm not pro or con to any therapy. .. if you decide Rt or surgery. .. go for the best in the field.
Do lots of research. .. ask questions, it's the only way you're going to figure out what's right for you.
All the best... keep us updated.
Posted 6/24/2015 4:20 PM (GMT -5)
Robman, I saw that you're at Ft. Campbell in Kentucky, just up the road from Nashville. Vanderbilt is the home of one of the premier PC robotic surgeons in the country, Dr. Smith. He and his team have done more than 3000 procedures the last I heard...and that was as of a couple of years ago. I know several men personally from near me (southeastern Illinois, 4 hrs drive to Nashville) who had it done there with great outcomes.
Posted 6/24/2015 6:06 PM (GMT -5)
Hey Buddy-

Take a deep breath and realize you will more than likely live for 30 more years..
Then do some research other than listening to war stories on web sites. We all have our plusses and minuses about our situation and while your head is probably spinning a bit, you are unique in and of yourself.

First, I am a 55 year old fireman who did the robotic surgery and I would do it again in a heartbeat, because after meeting with the guy that was actually one of the people that came up with the seed process, there were just too many questions that were un answerable. I found out that if you do the seeds and the cancer comes back, you cannot do the surgery as the tissue will not be viable enough to do it after it's burnt out. Secondly, I do not have a strong enough will to overcome the unknown and whether the seeds removed it all, as your PSA will not get to <0.04 as it should with surgery if it's successful. Perhaps the unknown is ok for some, but even at 50, it was worth it for me to have the surgery and more of a piece of mind. It's hard enough with the PSA anxiety that I carry every six months at the follow ups to not want it to be a constant mind bender for me. Lastly, the incontinence chances and the potential bowel problems were not worth it for me. I'm not saying anyone should not do the seeds, but I am saying that it was not right for me. I was back to work as a firefighter / full duty with no restrictions within 7 weeks, no incontinence and mild ED, mostly due to self induced stress more than anything.

The seed Dr that I saw is Dr. Grimm in Tacoma WA for those that will say i'm full of crap saying I saw the guy that helped start that program.

Good luck in your choice and at least for me, it's a constant 5 months of bliss then one month of stress waiting for the next 6 month psa follow up. Wish it would not affect me, but it does and it will..

just trying to be honest.

Post Edited (CaptainE20) : 6/24/2015 5:09:28 PM (GMT-6)

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