Prostate Cancer Lottery

[TylexGP]

Like many of us here I feel won the prostate lottery that I never intended to enter. I am Gleason 9 (4+5), with intraductal histology, suspect regional node, PNI, SVI and now genomics come back with BRCA2 germline mutation and CHECK2 somatic mutations and 5 others. Currently Post HDR Brachytherapy, EBRT with ongoing ADT+ abiraterone. I am stable and PSA continues to slowly go lower current is 0.13 two months post EBRT and 4 months post HDR Brachy. I am feeling good but I always like to have a plan so I am trying to develop a plan for next treatment if/when I have a recurrence. Platinum, PARP or LU or Immunotherapy or Provenge. Despite all I have read I am not sure what the best order of treatment is. In my planning I am leaning toward a Platinum then PARP (but when platinum fails there is also high chance for PARP resistance) My apologies for rambling any insight is appreciated.

[Tall_Allen]

I was VP of Strategic Planning on the last full-time job I held, so I fully understand the temptation to plan. What I've learned from prostate cancer is planning is a waste of time and energy, and more importantly, it is a distraction from staying in the present moment. There is no benefit to planning ahead - when you are ready to take the next step, you will be able to choose from whatever treatments are found to best at that time.

When I started paying a lot of attention to all things prostate cancer 11 years ago, there was only one medicine (Taxotere) available for advanced prostate cancer, other than the basic hormonal therapy. In the next 6 years, 4 more medicines were approved. And in 5 years after that, about 8 more meds were approved and several were found to be useful at different time points. There are hundreds of meds and therapies in clinical trials, and lots of new info on sequencing and tailored therapies.

In your case, you may be cured. If not, none of the meds you listed will be available to you, at least not within the next couple of years. You lose nothing and gain a lot by taking it one step at a time, and dealing with your situation as it comes.

[mrscruffy]

Welcome to the BRCA2 club. TA is correct as far as planning, my cancer also killed my father just 2 years before my diagnosis, I am on treatments that just weren't available to him. I too am a huge planner and after speaking with my Oncologist about a plan she said "You worry about living your best life and I will take care of keeping you alive" She is 100% correct, freeing myself from one more thing is liberating. The only planning should be for your loved ones when you are gone. My wife will be financially and emotionally taken care of when I go. Good luck my friend, keep fighting

[TylexGP in reply to mrscruffy]

Thank you to you and TA! I needed that.

[j-o-h-n in reply to mrscruffy]

Sorry I didn't realize it's Mr. Scruffy and not Mrs. Cruffy....But my sentiments remain the same.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/24/2021 8:27 PM EST

[Hidden]

Live for today ! You’re doing well . Keep trucking. Don’t fret about what’s next . Deal with the here and now . Today is a good day ! I had 53 super healthy years prior to APC slowing my roll. I started in 2015 . Surviving this over five years is a win . IMO Ramblng? That’s not ranting or rambling.I’ve done much worse. Ask away! Advocate but one step at a time sweet Jesus! 🙏

[addicted2cycling]

TylexGP wrote --- "Like many of us here I feel won the prostate lottery that I never intended to enter. I am Gleason 9 (4+5)... "

I didn't win the prostate lottery but I did sleep at a Holiday Inn Express and made the top wrung on the ladder with Gleason 5+5 or the Olympics' floor exercise, ice skating, diving JUDGES score card *10*.

Lulu700 wrote --- "Live for today ! ... "

👍👍 The only way to go till it's over.

Best of luck.

[j-o-h-n in reply to addicted2cycling]

We must be related.....cause I slept at a Holiday Inn Express once...........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/24/2021 8:32 PM EST

[Cancer2x]

What TA said.

[ck722]

G9 (5+4). RP, SRT=7months ADT PSA, .01 at this time. I guess this lottery has two (or several thousand more) winners. One. Day. At. A. Time. Prayer helps. A lot.

[MateoBeach]

It would probably be very advantageous to Get Provenge treatment now and not move it down the road. A “second strike” with little to no downside except some inconvenience and the horrendous cost. Unfortunately we cannot get it covered until mCRPC even though it is effective earlier in HS disease.

[GeoffNoLongerAS]

I am in line with T_A.

Diagnosed in 11/2008. With support from my wife (she did a lot of research for me) fired diagnosing urologist and joined an AS study with intent to research and plan, I joined a support group, connected with PRCI and joined this community. Research and learning went well, planning went by the wayside.

Things were changing quickly over the 11 years I was on AS. Any plans I made were rather quickly obsolete and a waste of time. I had great support from my wife in this journey. We also enjoyed life during this time. Retired and took several trips, raised our grandson. volunteered in several areas and basically enjoyed life. I found my balance between

time spent on PCa and enjoying life.

Late 2019 PSA up, biopsy indicated AS was ending. Having done a lot of learning, we went through a decision process and decided on a path forward (RP). The learning helped a lot in making the decision. I am very glad I did not make plans ahead of time New options had become available. Other options changed and some fell by the wayside.

In the end we had a great vacation cruise for 2 weeks (this was just before covid shut things down. We were fortunate to get back the the states just prior to the quarantines.) I had purchased Dr. Walsh's book and read during days at sea on the cruise. Lots of discussion with my wife. And yes, a lot of fun in Sydney Australia as well as island excursions during the cruise. Again, balance.

In my journey, research and learning has been invaluable, planning not so much, What was available when I "won" this lottery has improved or gone by the wayside. New treatments and procedures unknown when I started have become common.

From my experience learning, research, involvement in support groups has been invaluable. Planning not so much. I have found my balance between enjoying the time I have and the activities I can be involved in with learning about this disease.

Currently I am undetectable and enjoying life. Should that change, I feel I am in a position to be able to evaluate and pick a direction.