In January 2021 thought I had a pinched nerve in my back and saw an orthopedist and was doing physical therapy. Finally in June 2021 a neurologist scheduled an MRI.
While driving back from the hospital (Mayo Clinic) he called my wife, told us to turn the car around and check in at Emergency and a team would meet us there.
After further tests: Stage 4, PSA 331, 3 mets to spine. 3 days later, I had surgery to remove the largest met which was pressing on the spinal cord. Immediately after surgery I was given an injection of Degarelix which I have continued monthly. In July my PSA had dropped to 12. I go again next week.
The Oncologist is content to just continue the Degarelix and monitor the PSA level.
I'm 59 and was very fit and active. Prior to this it was nothing for me to hop on my bike and ride for 6-8 hrs.
Should I be pressing for a more aggressive approach?
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davidw777
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Sorry you have to be here, but glad you found the forum. Like many others here, I remember the shock of getting the "news" about advanced PCa. Lots of us here can relate to where you are right now and we'll be here for you when you need to share and just need to talk to someone who "gets it".
You asked: "Should I be pressing for a more aggressive approach?"
I would say yes to that and your doctor should be offering you to add either Docetaxel chemotherapy for 6 cycles, Zytiga (Abiraterone) or Xtandi (Enzalutamide). This is now the standard of care for advanced PCa. All 3 have proven to add survival time when used early.
I was a bit reluctant, but then after one month started Docetaxel chemotherapy, mainly because it gets the full specturm of cancer cells, not just the hormone sensitive ones. Plus it's over in 18 weeks and then you could add another anti-androgen after that. Don't be afraid of Docetaxel chemotherapy, most tolerate it well. I did.
So I'm still here after 4 1/2 years and doing well. I think it makes sense to be aggressive, especially if you are on the younger side. I didn't want to be thinking later, "But what if I had been more aggressive, would that have helped?" No regrets.
It is very suspicious that your oncologist did not recommend one of those. Consider getting a new oncologist. If you live in Minnesota, Charles Ryan at U of Minn would be a top choice. Mayo is good for many things, but prostate oncology is not one of them, imo.
Hello, Sorry to hear of your diagnosis, I have recently been diagnosed as well Feb 2021. It was a shock to me as well and took awhile for me to really face it head on and without a sense of desperation. I have found a lot of good information and advice on this forum. I needed to get a second opinion, and I am so glad that I did. I would suggest that you do find someone who would be more aggressive. The other comments and suggestions that were given are very good.
Hey JD-guy . There is no sugar coating a bad APC dx. For me it felt like getting clobbered in the cabaza with a 2x4 then put through a meat Grinder of treatments with adt being the meat ,bone, teeth ,heart muscle the and libido shedder for us all . I’m six years in and still on adt . No pc no Psa but wiped out . A thin broken shell of my old physical self . Besides that I’m alright . It all about suffering . Hang tuff . The initial blast is the worst . You’ve got to squash the pc any way that you can . Then if that happens you can cruise in second gear in the slow lane for many years . Enjoy and love those around us . Be well brother ! 💪
Gregg and TA on the mark.
Sequence the treatments correctly to get the most out of each. Who knows, maybe a some radiation could be in order also.
Chemo then zytiga (abiraterone acetate). You want to hit it hard early.
The beginning of your journey is so similar to my Jeff’s.
Diagnosed in Dec 2020, for about 7 months prior, he had been treated for a pinched nerve.
Jeff went to work on a Thursday morning, had a normal day, but by that evening he experienced leg weakness that was so profound he could barely walk.
He presented to an ER and was promptly transferred from that clinic to Mayo, Rochester where they found a tumor on his spine at the base of his neck. (We are local to Rochester)
By that Sunday he was having emergent major surgery to remove the tumor. A biopsy of said tumor confirmed prostate cancer, stage 4, with mets to lymph nodes and bones.
Beyond aforementioned details, I hope you don’t share anymore similarities with my Jeff, except maybe treatment protocol.
I would agree that a more aggressive approach should be taken.
There was a sense of urgency to lower PSA levels and start treatment accordingly. We veer paths here as Jeff’s PSA was substantially higher than yours at 950.
Nonetheless, we were advised that the course of treatment for advanced cancer is commonly immediate administration of a hormone blocker. Jeff received Firmagon (Degarelix) and he receives Eligard injections once every 3 months.
While a hormone therapy, such as Abiraterone Acetate (Zytiga), was offered, Jeff was encouraged to start with a more aggressive approach of chemo infusions of Docetaxel (Taxotere).
Additionally, Jeff had multiple rounds of radiation to target both his spine where the tumor was removed and subsequently multiple painful bone mets. Radiation occurred both prior to and during Docetaxel infusions.
Always advocate for yourself or have someone with you who will. Never fret about seeking 2nd and 3rd opinions or questioning your course of treatment and possible options.
Wishing you strength and favorable responses to upcoming treatments.
Welcome to the group warrior , you area among many compadres here. You’ve already gotten the sage advice from some of the “ brains “ here ….I’ll just say there are lotsa great guys ….. and gals …. here , all In differing stages of the same boat …all in it together. That and a wonderful knowledge base ( the brains ) that can’t be beat. Good to see you , hope you keep this monster at bay for a good long time.
Thank you for the warm welcome! It's such a relief to have found this place.
Welcome to the club! You’re already introduced to the hellish pc . Im 60 now and I started this mess at 53.. So I can relate to guys like me with an arly onset . Have you thought about how long you had this inside of you to get to the point it was ? My doc said that I had had it many years before dx . That spine stuff is scary ..Are you able now to do things? I M in Prescott. IMO there are not many places better than a Mayo Clinic . My mo that saved my life is Dr . Pariminder Singh now at Mayo Phoenix . He is a Sikh , and he’s my pc . hero . Our members accumulative knowledge is vast . Each of us that carry this same rotten bag relate to your position now and always . Good luck ! 🌵Scott
Scott, Thanks for the welcome. Not a club I wanted to join but am finding out quickly that there's a lot of support here.
I'm in Chandler, AZ and also being treated at Mayo Phoenix. My MO is Cassandra Moore - I haven't been impressed. She seems to have adopted a 'watchful waiting' approach. I'm 59 and otherwise very fit. My next monthly appointment is Tuesday and we're going to have a 'what's going on here' chat. I may switch to one of the other docs there. My RO mentioned Singh when I was in the hospital but somehow I drew Moore. My RO and Neurosurgeon have been outstanding. The RO isn't treating me but has called several times just to see how I'm doing.
I have 3 spinal mets and nowhere else. I had surgery in June to remove the largest which was pressing on my nerves & spinal cord causing excruciating pain. I have more of a constant ache now but nothing like what it was before. I'm able to do normal activities - today I was doing yardwork, out swinging the chainsaw. I have virtually no side effects from the Degarelix shots other than weight loss.
The feedback here seems to be pretty unanimous that I should be hitting this harder up front and that's going to be my plan going forward.
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