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39yo recently diagnosed with PC

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Posted 6/16/2017 10:18 PM (GMT 0)
Hi all. 5 weeks ago I was diagnosed with PC. Even now I'm still shocked and my anxiety has been through the roof. I didn't want to believe my Urologist at first, being that I'm a pretty fit active duty Chief in the US Navy. I've always ate healthy, I don't smoke, and I only drink alcohol on occasion. I feel like my world has been turned upside down. All I can think about every day are my wife and 2 children. Most people have said that I've taken the news of my diagnosis well, primarily because I've gone about my day to day life at work and home as usual. However, I'm an emotional wreck whenever I'm alone. I was glad to find this support group/forum because it seemed that my doctors just told me the news and left me to my own vises as I await treatment.

My Dad never had any prostate issues but I have 3 uncles on my Mother's side who have had either PC or enlarged prostates. Thankfully all are still alive and well. Due to my family history my Urologist has been watching my PSA for a few years now but I didn't know I'll get news like this at this age. I'll be 40 years old next month on July 30th. Here's the info I have so far from my Urologist:
PSA History: SEP 2014-1.6; AUG 2015-1.9; NOV 2016-3.0; May 2, 2017-3.75 ng/mL
Being in the Navy, my previous Urologist transferred to a new duty station. Once my new Urologist saw my PSA from November, he called me in and scheduled another PSA test . That's when we saw the elevated level of 3.75 and he recommended I have a biopsy. He performed the biopsy on Tuesday May 9th and informed me on May 12 of PC. My Urologist stated that at my age and with my results I'm considered Low-Intermediate Risk with a slow progressing cancer. He recommends surgery (June 20th) and I'm okay with that as I want this thing out of me ASAP. I already have children and my wife and I didn't have any plans for having more so ED is not an issue for me. I was already on Cialis anyway. My Urologist said that with Viagra and kegels at my age I should regain erections and normal continence. Any advice or information as I move forward along this life changing journey I'd highly appreciate it. Thank you.

My Pre-Radical Prostatectomy Results
Pretreatment PSA 3.75 ng/mL
DRE nothing felt or protruding during exam.
Gleason 3+4=7
Tumor Stage T1c
5 positive cores
12 negative cores
Percentage of positive cores 29.41%
Treatment Outcomes
Probability of survival after LARP 10yr 99% 15yr 99%
Progression free probability after LARP 5yr 93% 10yr 87%
Extent of Disease probability
Organ confined disease 53% Extracapsular extension 46%
Lymph node involvement 2% Seminal Vesicle involvement %2
Posted 6/16/2017 10:32 PM (GMT 0)
OK, first off, welcome to our club none of us chose. Second, I assume as active duty military you're in the military medical system. Correct?

At your age and stage...and yes, you are low-intermediate risk, which is a really good thing.

Let me tell you a few things we tell all the newcomers:

1. If possible, ask to have your biopsy slides sent off to Johns Hopkins for second opinion.
2. You are also a candidate for radiation therapy, and there are several flavors, if you will. Please look into them. I don't know how the military system works, but I know there are top docs in your system.
3. All of the standard therapies are curative at your stage. You owe it to yourself to decide what side effects you're willing to risk.
4. Urologists are surgeons, so they suggest surgery. They don't usually recommend radiation because, well, that's not their thing.
5. You don't need to be treated next week or even next month. You have time to make a truly informed decision.

Last, but not least, hang around, listen (read), there is a lot of help here. You'll be fine, and you need to make the right decision for you and your family. Surgery is not the only option you have. (and I say that as surgery guy who had a great outcome)
Posted 6/16/2017 10:41 PM (GMT 0)
Thank you for the advice. I will definitely ask about the second opinion and RT options today.
Posted 6/16/2017 11:24 PM (GMT 0)
Excellent advice from Halbert.

I want to confirm that options other than surgery are available and have excellent outcomes. 'Getting this thing out of me' is not really a good medical reason for choosing surgery.
What is important is getting the most highly skilled doctors to help you. This may not be so straightforward for those that need to stay within the 'military' system. Are you allowed go outside of that system? Anyway, I hope that you will find a doctor (surgeon or radiation oncologist) in which you can have full confidence.
Good luck with the decision process.
Posted 6/16/2017 11:31 PM (GMT 0)
mstatz
I sympathize with the shock and anxiety from your diagnosis. We've all been there - though few of us as young as you at the time. Halbert has given you good advice. I agree you do need treatment and I understand the desire to "get it out", but radiation in its several forms is also an option with cure rates similar to surgery. I'm not recommending one over the other, but suggest you look into both before settling on a treatment. Also just wanted to say hello Chief and welcome, from an old sailor. I was in for only 4 years a long time ago as a radioman.
Jim - USN '67-'71
Posted 6/17/2017 12:43 AM (GMT 0)
Chief -- I've had two other thoughts:
No disrespect to Navy doctors, but purely due to demographics I wonder how much experience Navy urologists or radiation oncologists have with prostate cancer, given most patients don't get it until their 50s or later whereas most members of the military retire by their mid-40s. Regardless of the treatment you choose, you want someone who has done a lot of procedures (e.g., 500 or more robotic prostate surgeries). Can the Navy send you to someplace where they have doctors with this kind of experience?

A second thought is VA benefits when you retire. As a Vietnam veteran with Agent Orange exposure, my prostate cancer is considered service connected even though I didn't have diagnosed PC until my 50s. You have been diagnosed with active PC while on active duty. When you retire you should consult a VSO (Veteran's Service Officer) at the DAV, VFW, or through your city or county. If you have residual complications from your prostate cancer - (urinary leakage, impotence), or if you have a return of active prostate cancer, you should qualify for VA compensation if the condition is considered service-connected.
Jim
Posted 6/17/2017 12:59 AM (GMT 0)
I was 'just 48' when diagnosed.

You've received some good advice.

Don't go with a Navy doctor. No disrespect, but get the opinions of experts in the field. I spent a day at Duke talking to specialists in surgery and different forms of radiation and active surveillance.

I ended up at Winship Cancer in Atlanta getting high dose radiation with hardly any side effects.

Do lots of Due Diligence!
Posted 6/17/2017 3:06 AM (GMT 0)
hi there, we're a young family as well. it sucks, it really does. but you're in the right place, and you'll get lots of great advice here.

keep posting & reading through the archives.

get walsh's book & start reading tonight!

best of luck!
Posted 6/17/2017 4:04 AM (GMT 0)
Welcome to HW,

Don't have much to add. Just wanted to say hello and hang in there.

Andrew
Posted 6/17/2017 7:14 AM (GMT 0)
Welcome to you sir. I'm sorry you join HW at all, but especially at such a young age. Thank you for your service to our Country. My DH also a Navy guy, many years ago, right out of high school.
Beth
Posted 6/17/2017 3:03 PM (GMT 0)
if he is in the military he is pretty much " stuck with military health care...thats all he has...Im not so sure the military has junk medicos...lotsa lifers with plenty experienxces...I thought fm his signatuer he already had tx... I luved the Navy...one of the past experiences and fellow ship ive had oh and with medico im fairly sure ...ca ching is not an issue...could be wrong...
Posted 6/17/2017 3:36 PM (GMT 0)
Hi Mstatz, welcome to HW, sorry you have to be here. I can't speak to your current military medical coverage, as many things have changed since I was in service, but you can still be your own best advocate. The fact that you are on here means you are researching and trying to educate yourself on your disease. Keep doing that. It helps with the conversations and consultations you will have with the doctors. With your current G7 diagnosis, you have all the curative options available. I know that it is a shock to have the Cancer call, but you have every chance of a cure and a good long life. See what consultations you can have with your doctors, both surgical and radiation so you can see your options. I wish you the best on your research and final treatment decision. Keep us posted. Take care. -JR
Posted 6/17/2017 5:31 PM (GMT 0)
Welcome. I just wanted you to know that all the statistics you've been looking at aren't really very valid for someone your age - your probability of remaining recurrence free after treatment, your probability of no ED, and your probability of remaining fully continent are a lot better than those stats.

Also, know that prostate cancer is almost always very slow growing in early stages like yours. This means you have many months to make an informed decision, probably years would be fine too - but you'd have to be on an active surveillance program to be safe, and with a GS 3+4, it's risky to wait years. I hope, in fact, that you will not make any treatment decision for at least a month. The decision you make a month from now may be different or the same as what you think now - but you owe yourself that gift of time. Slow it down.

Your emotional reactions are very normal. I'm glad, in a way, that you are an "emotional wreck when alone" -
it's the guys who suppress those normal feelings that I'd be more worried about. I, and probably everyone else in this forum, can relate. Receiving a cancer diagnosis has been compared to PTSD, and I think you will find benefit by treating yourself accordingly. See a psychotherapist, learn to practice Mindfulness, seek out a live cancer support group if there's one nearby, exercise a lot. I found that gaining knowledge helped me a lot, others find that adds to their stress - everyone's different. I know the initial shock will wear off somewhat with time.
Posted 6/17/2017 11:28 PM (GMT 0)
I just wanted to add...medical treatment from the military and from the VA are two totally different animals...just so we don't scare this guy about " Navy " doctors...I had great Medical and dental care in the US Navy. they are smart enough to find cancer in a 39 y/o...Umm I think Bethesda is a military hospital...the mor I think about it...I bet most of the naysayers on Navy doctors...was a over reaction as the frst thing they thought of wa the VA...Im not so sure tha even th VA is that bad as for as treatment go..its just...it dont take much to get a bad rap...from others who hear others who hear others...what a woild...what a woild...Im melting
Posted 6/18/2017 1:21 AM (GMT 0)
Hi Chief,
First thing to be thankfull for is discovering your cancer early. Most men don't start PSA testing until 50 or later. Had your Doc's taken a more conservative testing protocol your PC may have been much worse when finally discovered. Special thanks to your uncles for sharing their diagnosis, some don't. Second thing to be thankful for is finding this forum. The information and links here will help lead you to a good treatment decision. I would encourage you to seek out second opinions including RO's. Having surgery to remove a prostate is not the same as having your appendix snipped. It's major surgery at any age. I found www.pctrf.org a helpful place to compare the various treatment outcomes. I've just started SBRT and found that my best treatment option even though it required some working with my insurance to go out of network seeking treatment at Cleveland Clinic. Best wishes.
Posted 6/18/2017 1:58 AM (GMT 0)
Logo - just to clarify. If you go back and read my post, my only comment about Navy docs is that it is unlikely many would have much experience with PCa given the age range of active duty sailors.I have utmost respect for Navy docs, nurses and corpsmen. Also for my docs and dentists at the VA. I personally delivered an injured sailor to China Beach hospital -- transferred from the fleet with a mangled leg via one of our swift boats to our coastal surveillance center. I gave him a loaner rifle for the ride, for his peace of mind, not because I thought he needed it. There was no better place on this planet for trauma care than the USN hospital at China Beach south of Danang.
Jim, USN 1967-71, RVN 67-68.
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