New and in somewhat of denial

[jkm100]

Hi all. Not so happy to join the group! 😂

46 years old, feel great besides...a couple of months back an ultrasound showed a hiatus hernia which was causing the increased acid reflux and lower chest pain. Prescription cleared it up quickly! That ultrasound also indicated an enlarged prostate. Family doctor does the Digital and recommends a PSA test. Few days later Dr calls and says he’s going to refer me to an urologist as the PSA is elevated (doesn’t tell me the value). I’m a little concerned but will worry when it’s time to worry. I also had chest X-ray and CT scan an nothing of worry was indicated on them.

Met with urologist and first did the urine flow test. He informed me it was very poor (which is probably the only thing I noticed over the last year or so). He brought up my info on his computer and asked me about the PSA test, and if I new the results. I tell him my Dr said ‘elevated’ that’s why I’m here. He says 54!! ‘That’s worrisome’. I’ve done enough research in the previous weeks to strongly agree!!

Cut to the chase...biopsy 10/10 positive with Gleason 8. Bone scan all clear. Cystoscopy all good. Previous CT scan shows nothing definitive outer regions.

My urologist has strongly recommended and shuffled the schedule to have radical prostectomy in 2 weeks. This includes removal of seminal gland and lymph nodes. Life’s really about to change forever!!

From what I’ve read extensively to this point, this is the proper course of action, especially consider my age. Is it??

Based on my PSA and Gleason, it is not likely to still be confined to within the prostate, but there’s a slim chance they can get all out. Right?

Again, I’m 46, athletic and in pretty good shape. Married with a beautiful 8 year old daughter! Living and longevity is first for them...my way of life a close second!

Thanks.

J.

[Tall_Allen]

Your age has nothing to do with the best treatment for you. The treatment with the best record of success for high risk patients is brachy boost therapy (external beam plus a brachytherapy boost to the prostate). You have to find a radiation oncologist who specializes in this.

pcnrv.blogspot.com/2018/03/...

[jkm100 in reply to Tall_Allen]

Thank you so much!! In just a couple of days, this is now the path I'm on - Brachy Boost Therapy with EBR. With the blessing of my Urologist. Being referred to a top Radiologist Oncologist in Toronto. Starting drug treatment today, with an injection in 3 weeks to work on the cancer prior to the procedure. Will keep you all posted.

[Chugach in reply to Tall_Allen]

I think age is a factor and should be. If your fit and relatively young (46) and willing to take some arrows. My treatment when I was 46 was not standard of care but rather super heavy chemo and radiation at the same time (with ADT) and the combo probably would have killed older men that were not as healthy. I think there can be a much more aggressive approach for younger and otherwise healthy men with PC. I wanted to knock the shit out of it, as I too had young kids.

[MarkBC]

I don't have any advice for you. I don't have enough knowledge. I just wanted to welcome you here. You'll find lots of great information here. 46 is such a young age. I was 55 when diagnosed last summer. Similar to you, I had a few issues with peeing. My doctor found the prostate was enlarged and ordered a PSA test. Mine was 103. Big shock. Biopsy and scans concluded gleason 9 with mets to lymph nodes, pelvis, spine, and ribs. So far chemo and ADT has my PSA steady around 0.25 and I'm feeling well. I really hope the treatment you choose is successful. Best of luck.

[Hidden in reply to MarkBC]

Great results so far , feeling well , good news , Keep rolling....🌵

[Hidden]

Who wouldn’t want to deny this ordeal ? Just don’t deny yourself love . QOL can be improved with exercise , and in my opinion eating healthy . I’m one of those guys on a organic plan .. some simple mediation daily can help . Welcome to the club ..

[countrymusic101]

jkm100 - stay strong! I myself was diagnosed in Feb 2018 (at 45 years old), Gleason 8 contained with the gland. I have done a lot over the last 14 months. I would suggest you immediately get second opinions from urologists and oncologists. I would suggest getting the best imaging and testing you can to make sure the cancer has not spread outside of the gland. Your treatment options are numerous so make sure you look into as many as you can. The pros and cons of each and make your decision when you have time to review everything.

[Flydoggy]

Welcome to the club no one wants to belong to. My advice is to listen to everything Tall_Allen says...he knows his stuff and always has it backed up with research. There is so much info our there. I am 5 years into my journey, Gleason 9, had radical prostectomy followed by full pelvic radiation...34 sessions, followed by lymph node dissection on recurrence. Oh, and ADT, which in my opinion, is the worst part of this....but My psa is undetectable, my sex life is not what it was but it is still good, I am continent and every minute with my family counts. This is scary and it will change your life, but you still have a future and your life is not over. This group is a great place to go when you are feeling alone, or have questions. Good luck and good health...keep us posted.

[Hidden]

You can’t deny APC ... it demands your attention . Defy death !

[Schwah]

I agree with TA on his recommended treatment. But if you decide to go with removal you should never use your local urologist. Use a surgeon that’s done many hundreds or even thousands of these. Best from a major teaching hospital.

Schwah

[dunde8889 in reply to Schwah]

Just curious, don’t teaching hospitals have residents do surgeries under supervision of the attending? Would that be taking an unnecessary chance?

[timotur]

Second TA’s advice. I’m Stg 3b L1M0, doing HDR Brachy in a few weeks. You may want to see a MO and get on ADT to shrink the tumor before your chosen treatment of RP or RT. Best...

[jkm100]

Thanks for all the quick responses. My urologist seems quite well respected and apparently has done hundreds of surgeries. I will speak to him about the brachytherapy and show him the report.

He has really shown concern and rushed up every test to this point, even the surgery. Do I amplify the risk by waiting for referrals to oncologists and radiologists?

I’m located in northern Ontario, Canada. If there’s even a slim chance of removing all the cancer, is the surgery worth it?

[Hidden]

Our friend Mark TwAin said it first “ Denial just ain’t a river in Eygypt “. Once that you hurdle denial then you will cure yourself . Accept living ,and move to prevent it from rolling you over . Good Luck ,

[PGDuan]

Hi JKM, Sorry to hear, but welcome to the club. Came as a shock to me as well- 52 at DX and in the best shape of my life at the time. Hard as it sounds, take a deep breath, do your research, and talk with the best doctors you can find. There are a lot of treatments available and even while on treatment life is still pretty good (in the last year I've had RALP, EBRT, and am now on Zytiga + ADT). Tall Allan shares lots of good insights on the applicable evidence on best options. I can say that the first few months after I learned I was stage IV was a real shock to the system and it took months to get comfortable with it, but it gets better with time and treatment.

[Sherpa111]

Welcome to the forum. My only advice is to seek an opinion from a Radiation Oncologist before you go through with the RP. Every ones prostate cancer journey is different and involves different treatment plans as well. I feel for you my brother as I was diagnosed a few months back at age 52 and have two young daughters. You are welcome to check out my bio. Keep strong and remember you will be here for many, many years. You’ll be able to watch your daughter grow up to be a fine young woman. Maybe even dance at her wedding. God bless.

[jkm100]

Thanks guys!! This is truly helping already, and I'm definitely glad I made the decision to post here. Currently looking into the Brachy Boost Therapy - whether they will do it, where, and when. Talking to my surgeon, he says I'm teetering on the line of performing RP, but he has had success with a few with similar numbers/scans as me. One in particular is cancer free 15 years later. He stresses that this is a long shot, and he may get in there and further decide to close me right back up.

[Hidden in reply to jkm100]

Go to a big hospital that specializes in cancer and get a mri or pet scan. Ask T A which one so you can find out what’s there and where it is at. I can’t see treating before you know what’s there.

[NPfisherman]

Sorry you are here but you came to the right place...The more definitive axumin PET/CT scan will reveal more information...my story not dissimilar...lower PSA than you, Gleason 8, scans negative...I believe in removing the mothership....prostate cancer tumor... I did not have an Axumin scan until 8 months post prostatectomy when I found that I had one (1.25 cm)metastatic lesion on my clavicle...got on ADT and Zytiga and after 6 weeks, I had stereotactic radiation--three sessions...

Because you have a higher gleason score, there is increased risk for recurrence...

Ultimately, the choice is yours... go to a center of excellence and see a specialist in prostate cancer...there are clinical trials for the newly diagnosed...:

cancer.gov/about-cancer/tre...

Wishing you the very best, brother....

Fish

[Chugach]

I was diagnosed at 46; Gleason 9/10. After CT and bone scan I was planning for surgery; after another ‘4th-second’ opinion I got an MRI and that changed the course of action for me: no surgery and instead radiation and chemo. So consider requesting an MRI if there is any uncertainty so things are clear before they get you am a table. I’m 3 years in now. Sorry your in this club

[jkm100 in reply to Chugach]

Thanks for the comments, and sorry that you too were in this position at the same age.

I have an appointment set in two weeks with the radiology oncologist. I’m sure further scans will be performed before a set course of action. And yes, I’m willing to take a shitkicking to beat this down now!!