Just Diagnosed with PC

I just recieved the news two days ago from my buddy who is also my urologist.  Negative biopsy 3 years ago, however PSA from 3 to 6.4 with chronis prostatitis for over 15 years.  Had a positive PCA3 so he had me do a biopsy a week ago.  PSA is 6.44, 14 cores, one core has 4% cancer and is a 3+3 6 Gleason.  I'm 53 years old.

I'm seeing a radiation oncologist and a surgeon who specializes in Da Vinci in early October.  I've had so much on and off pain with prosatitis that wondering if surgery is the best option, however, I've also heard horror stories on incontinence and destroyed sex life.  Aggressive surveilance is not an option for me because my urologist stated a bled so bad last biopsy I almost needed a colo-rectal surgeon in the hospital if he had not been able to stop the bleeding.  He said any future biopsy will hit those veins and I will be bleeding again.

Waking up and worrying at 4am in the morning seems to be the norm right now..hope that gets better.

Any advice appreciated.

Thanks

J

 

Post Edited (jjman) : 9/22/2012 6:58:41 PM (GMT-6)

jjman, welcome to HW, darn sorry that you have to be here. That's a fairly good biopsy report, once you get past the 'cancer' part. Your numbers come fairly close to mine, including the prostatitis. Mine was grossly enlarged and I also had a 15 year history of 'itis and infections. No amount of antibiotics took care of it for long. I am not recommending anything to you now, it's way too early in the game for that, but I will say that if there was a good thing that came out of my surgery was the elimination of the prostatitis and accompanying difficulty with urgency and flow of urination. Those problem's are a thing of the past, heck, I can push the urinal scent block halfway up the back of the urinal most days. Of course I did have to trade off the erections, so I ain't saying it's all good.

You might ask the radiation guy what effect that radiation will have on curing you of the lingering infections, along with reducing the enlargement, if you have any. Did the uro tell you the size of the prostate on the ultrasound?

In any case, take your time, study your options, talk to the various doctors about their specialties and make a reasoned, educated decision. Ask any questions of us here that you need, and keep us updated as you go along, ok?

jj

welcome to our group. sorry you needed to join us, but glad you found us.

based on your biopsy stats, you appear to have a very minimal cancer at this point. i agree with your bleeding issue, AS with additional biopsies probably wouldn't be in your best interest.

have a good talk with the radiation folks when you do, depending on the size of your prostate, don't believe you stated it, you might be a great candidate for "seed" radiation. that would be your best shot at minimizing incontinence and/or ED issues post any type of surgery.

i had open surgery, was happy with it, but again, with your bleeding issues, might not be a wise move either. you got plenty of time to learn as you go, before making your primary treatment decision.

wish you the best, and fire away any and all questions that come to mind. as a group, we have experiences with all treatment methods, as well as dealing with complications and side effects.

david in sc

side effects from surgery, as with other treatments, are a definite possibility. They vary from person to person. I know how difficult those prospects are. I was far more focused on getting clear margins frankly.

I suffered virtually no side effects. I attribute this to my age, my physical and sexual fitness, the skill of my surgeon and luck. I am certainly not the only one who has been fortunate with QL issues. Man others, however, have experienced issues in varying degrees.

To minimize the chances of getting these side effects you need to access your pre surgery health and select a surgeon wisely.

Same logic goes for selecting an oncologist who monitors your potential AS schedule or radiologist. You want the best you can find regardless of choice for a better chance of cure and minimizing SEs.

Good luck.

J,

It's a real kick in the gut when you get the news you have PC. Take your time and learn all you can about all your options. Find the best most experienced doctors you can. Get opinions and second opinions from urologist and radiologists. Start a journal and keep all your questions and notes in it. Take someone with you on your appointments to take notes. Get all your questions answered while at your appointments. Get copies of all and any scans or tests you have done. It's exhausting at times figuring out what your best choice is, but it 's worth it. There are no do overs. Ask any questions you want to here. There are lots of good people with a lot of experience.

For me, when I first found out, was the lowest point in my journey. I lost weight, couldn't sleep or stop thinking about it. my kids were 13 and 16. You are going to be okay and be around for those kids of yours of a long while.

You can read what I went through by clicking on the link in my signature. Good luck to you and keep us updated.

J,

My situation is similar to yours.  I'm also 53,  Gleason 6, just diagnosed about 2 weeks ago.  But I have a small palpable nodule and 2 positive cores out of 12, one 5%, one 15%. My uro says I'm low risk, but the nodule still worries me.  I'm going thru the same questions about what to do.  I was so scared right after my diagnosis that I was ready to rush headlong into surgery.  I'm still early in this but my advice would be to take a deep breath and do some research.  Get a second opinion.  I've already set up an appt with the best urologist in my area, who is among the top 1% of uros in the US.  So I'm lucky in that respect.

Surgery appears to be the best option for guys like us for optimum peace of mind, but it has obvious risks, so if you go that route be sure to pick a very good surgeon. You're very lucky to have a buddy who is a uro, so hopefully he will know which surgeon is the best in your area.  I'm also thinking about seeing if I can get into Cleveland Clinic or to Dr Samadi.  Based on what I see so far, the odds of a complete cure are very high for guys who catch this early.  And you caught it early.

Good luck.

JJ - welcome and sorry you have to be here, but trust me you'll find lots of help out here. May I suggest that you put all of your stats in your signature? You'll notice that's how most communicate their individual stats and it would help us, help you.

Based on what you've shared your stats would certainly indicate that you have time - don't rush into anything at this point, no need to. Take your time, understand this beast, research all of the treatment options. This forum as well as good old Google, talk to multiple medical disciplinarians including surgeons and radiologists, and be sure to understand their specific results post treatment.

With respect to your bleeding issues with biopsy - as robertcool suggested there is another approach to biopsy called Stereotactic Transperineal Prostate Biopsy (STPB) - if you Google this you'll find lots of information on it. It may be an option for you as this approach is directly into the prostate gland via the perineum, versus going through the rectum - which not only provides a far better diagnosis / characterization of cancer cells, but also does not have the negative issues including potential infection from piercing the rectal wall in order to get to the prostate gland, not to mention your own particular issues. I wish I had known about this approach to biopsy when I had mine done earlier this year. I just recently had my treatment done, LDR Brachy, and the DR that performed it only does the transperineal approach to biopsy due to the issues.

Finally as I always do - since my Dx in June of this year I have been on an absolute mission to understand this beast and the treatment options out there, and in doing so have collected a fair amount of information, studies and reports that I would be happy to share with you. Shoot an e-mail my way if you're interested and we can take it from there.

Best to you,

jjman,

Sorry to hear about your diagnosis. As I read your original post, I thought it best to tell you my story, as we are both are approximately in the same boat.

I'm 51 years old, diagnosed in May 2012. In 2011, my dad was diagnosed with the aggressive form of PC and had surgery in May 2011. His urologist told him that this type of PC was extremely hereditary, and if my PSA ever hit 2.5, I needed a biopsy. I went in for my yearly in March of 2012 and my PSA was 2.7. Biopsy in April, and one out of 12 cores were positive (was the more common slow-growing cancer).

My two options were AS and surgery. I must say that, for me personally, surgery was the one and only option, as I didn't want a cancerous growth in my body. My wife's dad passed away at 51 from cancer (lung and brain) and I didn't want her to constantly be worried that my PC might spread. I also knew, from a PC perspective, that I was relatively young, and had a better chance of overcoming any post-operative issues.

DaVinci surgery two weeks ago, and it went really well. Surgeon was very happy. In one day, out the next. Was up and walking that evening. Catheter remained in for eight days. I did have to go back to the ER after it was removed, as everything swelled up and I couldn't urinate. My urologist said this happens occasionally. Catheter back in for a couple days and back out. Plumbing seems to be working better now. I'm wearing a pad at home, and pull-ups when I go out. Urination is no different that pre-surgery other than my stream is a bit weaker and more spread out, and I get some leaking when I sneeze or cough. This I'm told, will correct itself with Kegels, exercise and time. Will be starting Viagra tonight twice a week to get 'Mr. Johnson's' blood flow going again...

I know this is a confusing time for you, and the best answer for you is what makes you comfortable. My urologist told me to take a month and think about what I wanted to do. I called him back in a week to tell him I wanted to have surgery, and actually could have told him that day what I wanted to do.

Talk to people, gather information, discuss with you family, and come to a decision that is right for you. My doctor said he has a few patients that are like me that are doing AS.

Good luck to you. If you have any questions, let me know and I can answer them offline.

dm