Diagnosed today and overwhelmed

Age 56

Gleason 3+4=7

5% of tumor

PSA 8.6

Great Health (my assimption I guess lol... today, I'm questioning this fact).

Doc told me that I'm actually closer to Gleason 6 ( don't know why he said that over the phone). I'm in NYC which makes it good and bad... too many options lol

In the new system, Im in group 2... yesss! (That's my favorite number)

My biggest question... have travel plans for the next 6 months... prepared so much for it. I'm almost decided to postpone the prostate crap till after I come back. Please correct me if I'm committing a suicide. You know doctors most likely will tell me... "oh no Mary... you have to take care of your prostate etc"... confusion in my head. Travelling throughout the world ... leaving in late July:-)

Advice pleeeeeeze

19 Replies

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  • You're in a classification they now call "favorable intermediate risk." That means you have a very similar prognosis to low risk. Take your trip. Slow it down. You have plenty of time to decide what path is right for you. The more time you take, the better your decision will be. Not a bad idea to get your biopsy confirmed by Epstein's lab at Johns Hopkins. It costs $250.

  • Thanks sooooo much :-)

    I'm getting a second opinion at Sloan soon. This way I will learn more about my options

    Again, thank you for your fast response

    Wish you the best

    John

  • I took a trip with my teenage kids a month after my diagnosis, which was a month before my surgery. I have never regretted it.

    Don't panic. Your numbers merit attention and action, but you have time to consider options.

    My best to you--and bon voyage!

  • Thanks

    Me too... going with my teen son :-)

    I'll have a lot of fun too.

    Have a great health.

    John

  • Go on your trip.. Too much work planning for the adventure! ! Nothing will change,, just your regret for not doing it

  • Thanks

    Putting final touches and changing some hotels reservation into 5 stars ... it might be a while before I can travel again ...

    I Have faith that I will again :-)

    John

  • I was diagnosed last year April of 2016 with a similiar diagonis as yours. Active surveillance was not an option however my Dr. Advised me to have a good summer and plan on surgery in the Fall ( my decision was Surgey)... I did exactly that, had a great summer ( The surgery was in the back of my mind however I used that to appreciate life before surgery even more) . In mid October I had surgery. I know I was very lucky, I was in continent for about 48 hours, I can get an erection with ED meds, I have had my 3 and 6 month follow ups and PSA is undetectable... Theses are personal decision and you will have to decide what's best for you but wanted to share mine. Im in CT and believe I had the best DR on the east Coast...

    Reply

  • Thanks

    Its been less than 48 hours from diagnosis and already leaning to prostatectomy right after Christmas (7months)...I'll check with doctors how risky is to wait that period ... being young (relatively) would make the side effects less I guess. I'm in great health now. Hope to fare as you did :-)

    Thanks again

    John

  • John,

    If you ever want to chat please let me know.

    Michael

  • Thanks Michael

    John :-)

  • I specifically recommended Epstein at Johns Hopkins for a reason. His lab has pathologists who read prostate cancer only. They are THE specialists, and the gold standard. Ask at Sloan if their pathologists read prostate cancer slides ONLY. As the saying goes, "jack of all trades, master of none."

  • I will call Dr Epstein..I will investigate slides if used by Sloan whether they will be re-used again ... may sound naive but it's all very new to me

    I'm calm and two docs already told me that it's ok to take my time with 3+4 and very small load of cancer <5% in tumor

    Hope they are right :-)

    Thanks for advice

    I heard a lot of misdiagnosis in this field

    I checked my pathologist history.. a very young fellow :-(

  • It may be that Sloan has experienced pathologists who are dedicated only to prostate cancer just as Johns Hopkins does - I just don't know. I do know that Epstein literally wrote the book about it - he's published more on this subject than anyone on the planet. Bostwick Labs also has staff dedicated to PC only.

    In a retrospective study, men who waited more than 3 months before having a therapy fared exactly the same as men who waited less than 3 months. That was true even for "high risk" men. And it was true whether they ultimately chose surgery or radiation.

    pcnrv.blogspot.com/2016/08/...

    In fact, for a variety of reasons, I believe that doctors should not act on any patient decisions for at least a month.

  • Wishing you a fabulous global journey.

  • First, it's good to see the many replies to your initial "OMG!..What do I do now?" post. I'll add my own to what's already been said: take your trip, but add to it...it won't be your last so don't have an attitude that the prostate cancer (PC) is going to prevent future trips.

    Beyond that, this is a time to learn about this stuff. There is a lot to learn and the more you know before deciding what to do about it the better. Just as background, I was diagnosed in December 2015, had a very large prostate causing some increasing urgency issues, a PSA that had been in the 10-12 range for years but increased significantly in late 2015, then had an MRI Fusion guided biopsy finding three small tumors (also 3+4 as your's) buried deep in the gland. I finally opted for surgery in May 2016 after considering various options.

    For starters, PC is a slow growing cancer, so unless there is some indication that any tumors are near the capsule wall and threatening to break out, time is on our side. Use that time to learn...what does the gleason score mean? How does that affect risk? What should you be asking the doctors? What specialists should you be quizzing? (i.e. surgeons, radiologists, etc.) Who are the best docs and what are their experiences? What are possible side effects that go with the various options? What elements of your sex life are important to you and how do you minimize risks of impact on those?

    While there are many good books on PC, you might also want to consider going to the Prostate Cancer Research Institute (PCRI) annual conference in Los Angeles in September. I went last year (post-op) and found it to be a wealth of information. The conference is focused on PC patients, not doctors, and strives to empower us with knowledge about treatments and developments so that we can have better discussions with our docs. You can check them out at pcri.org (and no, I have no connection with them other than having gone last year and planning to go again).

    Finally, breathe normally, enjoy life (and you trip), don't ignore this but don't over-stress about it either! Take time to learn...then decide what's best for you.

    Best wishes, Ken

  • Thanks Ken :-)

    That's what I'm doing ... breathing and accepting it to be my buddy for the rest of my life. It could be worse that where my thinking is... so, I'm fine and learning.

    Leaning to focal therapy and see what happens. It's prelimimary decision but looks I'm going in that direction. Reading a lot about the different focal therapies including the newest one offered at Sloan (long name lol), had to do with attacking just cancer cells using substance from sea algae etc. I'm still reading and learning. A very interesting science.

    Thanks for your reply

  • Take your trip. Don't stop living because of this. You will be just fine

  • I am sorry to hear about your diagnosis. I was diagnosed in April of 2016. 4 of 12 cores positive, 2-3+3, 2-4+3. I chose the surgery June 13, 2016. I did well with the surgery, for the most part. One thing to remember, everyone reacts differently to surgical procedures. I had scare tissue from my appendix removal a 100 years ago. This caused me to me in surgery a lot longer. Surgery and recovery for 9+ hours. I was also allergic to the tape they used to tape my eyes shut, so I had an eye infection. Feet numb for 4 days, due to how long I was on the table. All the pain relievers made me sick. All these were quirks of my body that nothing to do with my prostate. Certainly none were major, but just added to the discomfort for a few days. I recovered pretty quick though, back to work in 3 weeks. No pads after about 5 weeks. A squirt now and then. But I have a real urgency problem. Gotta go when I gotta go. My second follow up showed rising PSA. I was surprised, told that the cancer was contained to the prostate and only one are in margin. Surgery was nerve sparing as well. I went to a Radiation oncologist and was put on Eligard hormone therapy, then started radiation 2 months later. I had had surgery because I absolutely did not want radiation or hormone therapy. The side effects scared me to death. I only did 15 of 39 radiation treatments and did not take the second round of hormones. I did not feel like myself. The urgency problem had become almost intolerable. Bowl problems, etc. Plus the night sweats from the Eligard, unable to sleep. I was afraid some of the side effects would not go away. It has been 7 weeks and I am seeing improvement, but still not back to where I was before hormones and radiation. I am somewhat amazed at the options so many men seem to have as far as second opinions, etc, etc. I live in Albuquerque, NM and I did not have options of going out of state, to the best of the best. But I feel my doctors were quite good. I read all I could, got all the info I could find, thought I was doing the best I could. But I had reservations and did not really want to do surgery or the radiation and hormones. My advice is take your time. Do not let anyone else cloud your decisions. It is your body and no matter what course of treatment you chose, you will NEVER, EVER be the same. There is plenty of men on the blogs who will give you all sorts of info on their treatments. I chose what I chose and regret it. I would like hear from men who chose not treat. I was diagnosed one week before I turned 56. If I had been 10 years older I would skipped the surgery. Now after, I wish I had. I was well informed and thought I was ready. I was not. At this point, I am trying to put it all behind me, but when your body had changed you are reminded all day long.

  • Sorry man you're not pleased with what you did. I'm going for least intervention and take that bet. You're 100% right... each one react differently. I'm not terrified as I lost family members to other cancers... my battle is a stroll in the park compared to other cancers. I think that way to remain thankful for this "acceptable" diagnosis.

    Definitely going for focal treatment preserving most of my prostate until it comes again...by then, who knows something new might come up (hopeful thinking). Again thanks for your reply and best wishes

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