Just diagnosed gobsmacked looking for advice

If you decide to have radiation treatment first, you can’t have surgery later. However, if you have surgery first, radiation is still an option. I had surgery and my cancer had spread out on one side. My doctor had to “cut wide” in order to remove it. Eight lymph nodes were tested. One had cancer. Ugh. Good luck with your decision during this challenging time.

I had my robotic surgery at Mayo in Phoenix. They kept me overnight and I can say the care is excellent! On a humorous side note, I apparently kept telling a nurse how cute she was (according to my wife). It's embarrassing now, however, she was cute 🙂
Best of luck to you!

That's my situation — diagnosed with stage 4b mCSPC at age 56. I'm closing on 3 years now, and back to living an almost normal life, with the expectation of many more years ahead of me.

It's a far more-promising outlook that it would have been 5+ years ago.

Normally my first cup of coffee puts a smile on my Stage 4 Prostate Cancer face. But North-of- the-boarder your post gave me smiling on the inside and out. Thank you my friend.

"Most people here have been down the same road (or worse), and we're happy to listen and share our own experiences."

Northoftheborder and Proftom2 thank you both for giving encouraging results. I'm a little over one year in with stage 4b. Has been a rough ride for all, good days, not so good days. but it's helpful to read it can get better down the road. It sure does give me hope that it can get better. Thank You. Best to all.

Yep , so funny . I live Part time ,5 months a year, in the Philippines . I fell off my bike and had to go to hospital for Surgery on a broken leg . I 'apparently' told my 3 nurses they were cute and " if I didn't have a wife , you would be it ". Gosh , so funny when I look back . From what I remember , the nurses were just great in Philippines . So caring and intuitive ...and funny ! Leg was looked after and check ups were fine after ...still funny when I look back on the mishap though.

You have this . A new diagnosis sucks , BUT now you know and better now than a year from now . Did you see your PSA rise over that last 2 years ? Do you have a good groups of peers ? Do you have Protate support groups in your state ? What you need is information and peer support at this point , while you get on with your treatment . On Vancouver Island we have 'PC support groups' that help many men with support and information. You must have some in your state . The operation is an option. Best thing about operation is you get to biopsy afterwards . You will likely follow up with radiation ( external beam or the like ....) . A whole community here to help . Some are SO knowledgeable ! James on Vancouver Island .

Thank you to everyone who took the time to reply. Just by way update, I have joined my local support group. We met with medical oncologist yesterday. Have my PMSA PET Scan Friday and then meet with a radiation oncologist next Wednesday. I am going to do my best to do my due diligence before making a decision. Folks like you have been incredibly helpful. As I move through my journey I hope I will be able to help others in the way you have helped me.

Things I've learned from my cancer journey...

How to move from acceptance to action...

First, get through the shock and denial, you're entitled

Then bewilderment - you've talked with your medical team and trying to figure out whether to simply accept early advice and leave their care in the hands of the medical establishment, or to become more involved in the decisions around your cancer treatment. This leads in one of two directions. Either you begins to realize how complex and rapidly advancing prostate cancer care can be and jump on the information train; or, after an initial dive into information on the internet, books, advice of friends, etc., you regress and become less involved and more passive. Hopefully you are the latter!

Then, engage and plan. Assuming you don't give up control and do decide to be a more active participant, oddly enough you may look forward to what outcome you.want to achieve.

One of my rules is: Walk in the door ready to start the conversation at a different level. I don’t have to spend time talking about the basics, things like Gleason grade, group and clinical stage, PSADT, PSAV, doublet and triplet therapy, NCCN guidelines... and what they mean. I already know. I can have an intelligent discussion about the merits of a particularly treatment for my cancer, my likelihood of being cured, and risk of side effects

Speaking of NCCN Guidelines, grab your favorite drink, mine's a Manhattan or Old Fashioned and start reading them - https://www.nccn.org/guidelines/patients. The NCCN Guidelines for Prostate Cancer include recommendations for staging and risk assessment after a prostate cancer diagnosis and for the care of patients with localized, regional, recurrent, and metastatic disease. They are a starting point for discussions with your medical team.

With the clinical data you describe - Biopsy score was Gleason 8 (4+4), Grade 4. 12 of 16 cores involved. Cribiform pattern present, Extraprostatic extension and Perineural Invasion along with that increase in PSA, Doublet or triplet therapy may be something to discuss with your medical team, here's one link to start, you can find others - https://dailynews.ascopubs.org/do/would-you-use-doublet-therapy-and-not-triplet-therapy-patient-newly-diagnosed-mhspc

Surgery may not be the best option given your clinical data. Discussions with the radiation oncologist and medical oncologist should give you other options. One thing to consider, mono-therapy such as your urologist is describing, is not your friend.

The PSMA imaging may give you the final piece of clinical data to inform your discussions and decisions with your medical team. Another piece may be the PSDAT and PSAV (https://www.mskcc.org/nomograms/prostate/psa_doubling_time) though with what you describe, 2.8 to 15...in six months, something aggressive is going on!

I've attached my clinical history, aggressive, not as aggressive as yours may be though. An aggressive PCa generally requires an aggressive approach to treatment, here I am, 10+ years later.

Be sure to post back with your PSMA imaging results and what your medical team recommends!

Kevin

This is incredibly helpful. I will post back with my results for sure. Thanks again