Craw under a rock and hide option - What would you do different if you just found out you had PC?

I would do exactly what I did originally. Freak out for a few days and then do what it takes to get well informed so that I can make good decisions.

Well said JNF. Except in my case i freaked out for a few months. But push yyourself to settle down, and get educated

I was actually relieved when my PC was discovered because I spent 10 years and 13 biopsies trying to determine why my psa went from 4 to 40. I thought I knew a lot about PC because I had read all the suggested books, Walsh, Scardino ect. I found out that I really knew very little after my second opinion appointment with Dr Scholz.
What I did learn is that the most important step is to find out the exact staging of your cancer or as Dr Strum says, "know the biology of your cancer". Only after you know the grade and size of the tumor and its location and whether or not it is contained can you make a rational treatment decision. This may include markers like PCA3, DNA, ect as well as scans.
The next step is to match the best treatment to the biology of what is discovered, for example a low risk PC should be treated by AS whereas a more aggressive high risk cancer should have everything but the kitchen sink thrown at it.
The final step is to find the absolute best doctor for the type of treatment chosen.
If these steps are followed then one will have the most successful chance at a cure.

Knowing what I know now...probably not rush into surgery as quickly. Look more deeply into radiation. Maybe have surgery anyway, but try to find a better surgeon for the modality (I had a Da Vinci prostatectomy with a surgeon who, while very experienced with open procedures, had not used the robot on a live human).
Can't complain though. Things turned out okay in the end.

To the title of the OP, my thought is that this forum is populated by a self-selected small population of those who chose to get proactive and get lots of information. So, our viewpoints will be skewed in that direction compared to the general population.

I think there probably a lot of men out there who do one of two things: fall into total-freakout mode and do whatever the diagnosing doctor says to do as soon as possible or they crawl under the rock and crash into denial for some length of time.

Me, I probably would have done what I did: freak out for a weekend, then get into the hard work of research and planning.

Thanks for all of the advice. I am getting a 2 opinion from Ohio State the James and then I get to determine what treatment option I would like. Like? Now that is an interesting choice or words.

Post Edited (614-2101-765-611) : 9/18/2015 5:37:46 PM (GMT-6)

When I got home I cried like a baby...I still have trouble controlling my emotions and I am going on 50 months.....


Not sure what if nay I would do different...that juts makes it herder since its too late to change it.


Hope everyone is good..

I would have undergone my TURP surgery much sooner. My prostate had grown so much that it progressively shut down my ability to urinate, eventually leading to complete blockage. I had hoped that shrinkage from the hormone treatment would make the TURP unnecessary. I delayed for weeks out of fear of that surgery and it ended up being no problem at all. It completely solved my urinary problems and made my life so much better.

Dint think I would have done anything differently. I didn't depend on my urologist, who was trying to focus me on Cyberknife. I explored all options, and saw both multiple surgeons no multiple radiologists. I made a decision and didn't look back. Found the best surgeon I could, who I had confidence in. And it all worked out with the help of a whole lot of luck.

The best thing that happened to me from the day I was diagnosed, was finding this forum. If I hadn't, I would gave, for starters, not gotten a second and third pathology opinion and would have been treated as a G8(3+5). Thank you HW

My only regret is the 3 large margaritas I had the night of my dx. They tasted great at the time but the next day hang-over was horrible after the dark depression set in. I've been fortunate to have my wife by my side. She has done most of the work setting up all my doc appointments. I don't think I would have done anything differently. But I do wish I would've had the biopsy a few years earlier.

As the wife of a Gleason 9 fella, I should've read the HW FAQ for newly diagnosed men to slow us down a bit. We both completely missed that my husband's local RO did in fact mention the multi-modal brachy/radiation/neoadjuvant ADT combo that Tall Allen suggested we investigate. We heard the RO quickly mention brachy but thought she was suggesting only that and ADT as treatment, something we knew wouldn't be enough. It was only when we reread her report a few months later, after the 9-week IMRT radiation was underway, that we realized that the tri-modal approach had been put on the table. Too late. We also lost some months exploring the possibility of surgery early on, something Dana Farber and Sloan Kettering said was a possibility. Reading the HW boards, plus seeing another oncologist, thankfully took surgery off the table because my husband is Gleason 9.

So if we were to do a do-over, we would've had the slides read by Epstein, not even investigated surgery, delayed the start of radiation, and found the people who do the tri-modal approach and gone with that. However, I'm only looking back to help some other newly diagnosed high Gleason men explore the best options for high-risk PCa. And listen to Tall Allen!

Meanwhile, back at the ranch, my husband has had a so-far decent response to the Lupron/radiation treatment. Lupron sucks--hot flashes, ED, achiness--but the drug plus the 9 weeks of radiation have greatly shrunken the prostate to the point where my husband's urologist was able to see a worrisome ureter unkink itself and look normal just last week. The radiation side effects, so far, have been negligible.

If there's anything we should be looking into now to brace ourselves for the future, please feel free to share any advice while we're in a relatively quiet period. My husband can't have an MRI due to a pacemaker, but if there are other imaging or tests to consider exploring, we'll look into it. Right now, we're just trying to enjoy every single day. Thanks for all the information we did get in the last year. It's helped a ton.

In looking back, I would have done things exactly as I did just because of my family history (dad and grandfather both). I was in shock for a while, was in the midst of retiring from being an elementary principal and was planning out things I had wanted to do. I originally wanted to have the surgery in December, but had in August. My wife is a teacher as well, so we wanted to do it when she could be off without missing so many days.

Since I had always had regular PSA tests from the time I was 40, I was very surprised that it had jumped so much in one year. While it had been on a steady increase for a few years, I just wasn't expecting it. It took me a while to let it sink in that I had prostate cancer.

Once I found out, I did like many men do, research, find out my options, and then made a decision. Once I made the decision, I was ready to "get it over with". I did go back and forth between surgery and radiation, but with my personality finally decided I just wanted it out.

My advice is always to research your options then decide the best one for you.