I'm 36 years old and was diagnosed yesterday.

I'm 36 years old, and was diagnosed with Prostate Cancer yesterday.

In 2009 my father was diagnosed with Prostate Cancer that had already spread into his bones. His oncologist recommended that I get screened at age 34. My Primary Care Physician thought it was a waste of his time, and disregarded my PSA of 2.1.

December 13th, 2010 - I finally broke down and called my PCP because I had been urinating blood for several weeks. I had waited because I've suffered through kidney stones for the past eleven years. My Urologist had just retired, and I was given a referral to a new Urologist.

December 14th, 2010 - I met with the new Urologist (whom I instantly liked). She scheduled me for my eighth round of extracorporeal lithotripsy the very next day.

December 15th, 2010 - extracorporeal lithotripsy surgery.

March 17th, 2011 - My father passed away at age 59.

March 23rd, 2011 - My father's funeral 5 hours from home AND the day I was to have my 3-Month extracorporeal lithotripsy post-op meeting with my urologist.

March 30th, 2011 - Attended my rescheduled extracorporeal lithotripsy post-op, and told my urologist of my father's passing. She seemed concerned when I mentioned that I had a PSA of 2.1 at age 34.

* She performed a DRE and found that my prostate was "hard" and had "nodules".
* She ordered a new PSA test that day.
* She scheduled a TRUSP with Biopsy for April 18th.

March 30th, 2011 - My PSA had increased to 2.5.

April 18th, 2011 - I had the prostate ultra sound and biopsy. I also had a severe allergic reaction to the anesthesia.

Yesterday April 26th, 2011 - My wife and I met with my urologist to discuss the results:

* 3 of the 12 cores were positive for cancer
* Gleason score is 6 (cores from both prostate lobes contained cancer)
* Urologist stated that the best course of action is Robotic Radical Prostatectomy
* Urologist stated that due to my age she does not want the surgery performed locally and recommended IU Medical Center or Vanderbilt University Medical Center (both of which are 2.5 hours from our home)
* Urologist asked if I would be interested in participating in genetic testing because: My dad's dad died from lung cancer at age 40, my dad's brother died from Leukemia at age 50, and my dad died from prostate/bone cancer at age 59.

My urologist said she's only had second hand knowledge of one other person my age with prostate cancer. I trust my urologist completely, and I'm not the sort of person that trusts easily. I am a very good judge of character, and she has been outstanding from the first second I met her.

Since the DRE/PSA results my wife and I have been researching PC as much as possible online. Unfortunately, we haven't been able to find much information about people my age with this disease.

I'm a 36 year old licensed commercial architect who has a very stressful job (managing the "building design department" in an Architectural / Engineering firm). My beautiful wife just turned 31 years old. We couldn't have children (she has severe endometriosis and my tests indicated low s-count and motility). Does anyone here have any advice or "sage words of wisdom"?

Thanks for letting me ramble.

First, a Welcome to a group no one wants to be part of.

You are one of the youngest patients I know of (I was diagnosed at 56, and also have a family history of cancers). There are several folks here in their 40's or who were diagnosed at that age who may be able to offer a better perspective.

We will all suggest that you start reading up - the classic books are Dr. Walsh's Guide to Surviving Prostate Cancer (2nd Ed.) and Dr. Peter Scardino's Prostate Book (2nd Ed). There are a lot of others.

I'll have to find a link to our common questions thread (it is temporarily "broken"). I'll come back and add that to this post on a few minutes.
https://www.healingwell.com/community/default.aspx?f=35&m=1717641

Thanks for the responses.

I forgot to mention that my urologist has scheduled a CT and Complete Bone Scan for Tuesday 5 May.

She doesn't think there is a "significant chance" of the cancer having spread, but based upon my family history and the chronic lower back pain I've been suffering through for the past 12 months she wants to be sure.

I'll stop by our local Barnes and Nobel tonight to look for the suggested reading. My urologist gave me a copy of "100 Q&A about prostate cancer (2nd Ed)" which we started reading last night. She also gave me the business card for a local PC support group - but mentioned that she doubts anyone there will be near my age.

If you are purchasing the books, the Scardino book (2nd Ed.) is the most recent (cost on both is ~$20 each).  You might also check your local library.

I would suggest that you go to the support group meeting to check them out. Some groups such as my USToo group have copies of books/material that may be helpful and can be borrowed. Others actually have donors who help provide information kits to new patients. I'll agree you won't likely find 30 something ages represented (my group had a 40 year old, but as soon as his surgery was done and continence regained, he forgot about us, as most younger men do - they want to get it behind them).

Also check USToo.org to see if they have groups in your area.

Some will tell you that the bone and CT scans are a waste of money and extra exposure to radiation. To a degree this is true, but they do give you a baseline for the future. I had them, they were negative, but I felt better about it afterwards, and my ultra-high deductible and out of pocket were soon to be blown out, so the cost was later irrelevant.

 

Welcome to HW, sorry you have to be here.....I can't add much to what the others have said, except to touch on one point you mentioned. Children- as you know or will find out, RRP will render you sterile. Even with your wife's reproductive health issues and yours, you may want to consider sperm banking before surgery or radiation or whatever you ultimately decide to do. Us older guys don't think of this aspect, but younger ones need reminding that this is an issue for them. In any case, sounds like you have a good doc, so I'd get a second opinion on the biopsy slides.

I can tell you that I would have gone to Vanderbilt and Dr. Joseph Smith for a RRP, if I had been eligible. He was highly recommended by my Uro's, and the surgeon who did my open. Just sayin........

Sorry to read this. Looks like you've gotten some good advice.

I have nothing to add, but it is so nice to read a post from someone who clearly has an excellent, competent urologist. She has saved your life!

Mel

Mel,

My urologist has made this experience much easier for me. I honestly feel like I'm receiving the best possible care from her.

My husband was diagnosed at 39. he chose a Robotic in Feb 2011, so still recovering, but doing well. We chose that route, based on the fact that "we wanted it gone" and also that it is VERY difficult to have surgery after choosing radiation, but if you have surgery and then need radiation, you leave further treatment open as possibilities. Read, read, read, and talk, talk talk to everyone, get all info and opinions, learn.....but then make the decision based on what you feel is best for you and your life. Each disease is different and each treatment is different, it will work best if you weigh the options based on your life, beliefs, thoughts. It is a disease that will effect your partner as well, if you have one, so include her in on the discussion, but ultimately it is your body and your decision.

You have found a fantastic group of men here, lean on them.

Architect, as others have said....welcome.

Myself and many others will offer that surgery (mine was robotic nearly 8 weeks ago) can be gotten over quickly and without substantial side effects. I'm 16 years older than you and have a post-op psa of 0 and no incontinence or ED issues. The younger you are, the more likely you are to have a better outcome IF YOU FIND AN EXPERIENCED, CAPABLE SURGEON.

If you've listened to this board for 6 months, the term "experienced" means different things, to both members and surgeons. Talk to you MD about his/her success with nerve sparing techniques and ask him to relate successes with patients as young as you. My .02.....at least 400 DaVinci robotic procedures under his belt.

You've had one hell of a 2011 so far. It will get better....it has to!

I have every confidence that you will be fine by the time football starts back up.

Dave

It can be overwhelming, all the options, decisions, tests, dr. appointments.

Your urologist sounds great. 

IMO, educate yourself, then follow your urologists advice. 

I think it's good advice.

You are very lucky to have this at an early age... Your recovery will be what others here would only dream of...You can look towards complete ED recovery..Just make sure that you have a surgeon that will make your future erectile funtion a priority...

Architect,
Welcome and thanks for posting as it was an interesting read. Quite a history to look at. Glad they did find it and it looks like your doing your homework. You will make the best choice that you can for you and dont look back. Sometimes we have to doubt our doubts and move on. Keep us posted and my best to you and your family.
Michael

You are very young. I am 40.

I can tell you that recovery is very quick and in many cases complete. I think it's safe to say that by the time you're 37-38 you will be back to your old self with an added perspective on life.

My advice, if you indeed select surgery, is to find a surgeon who is not good at this, but great. You have one shot at this and you want the best there is taking care of you.

Good luck and remember that this is a process to take one step at a time and before you know it it will be a memory.

David