Recently diagnosed with prostate cancer: What questions to ask docs?

I'm so sorry, and it's perfectly natural to be scared. But prostate cancer treatments have advanced massively in the past few years, so even in a case like mine (advanced stage 4b, spread to my spine), the outlook isn't as bleak as it used to be.

You're lucky to have caught it at an early stage, and while from what I understand, there is no way "just to be done with the cancer", either radiation or surgery (together with hormone-related treatments) will massively improve your odds. Radiation and surgery have about the same overall survival (OS) rates, but even if it turns out later that a bit of cancer has already slipped out undetected, there are many, many treatment options now.

The side-effects from the two can be a bit different; it's hard to say which is worse, because they vary so much from person to person, but sometimes (not often) the ones from radiation can be longer-term, like bladder and/or rectal pain, while the ones from surgery can be more acute, like severe incontinence. But again, your medical team are the best ones to advise.

Sorry you are here but there are plenty of people here who will give you support. I went to get my awful leg pain fixed and found out I have stage 4b, not what I was expecting of course. It started the roller coaster of emotions. One year in I found this site, and it has been a blessing to me. I come here every day for support, and there are many on here who you will be able to connect with. I wish you the best on your journey, you can do this, no it won't be easy, just keep fighting. Best to all.

I was 74, found Gleason 9-10. Two lymph nodes were with cancer. So radiation- androgen deprivation surgery was my choice, no options. Your Gleason score is lower/ it’s confined to the prostate= so I d guess the prostate removal might be your best bet. I know two people who are cancer free after two years after prostate removal/ but it’s not a guarantee- so they check the PSA FREQUENTLY, in case some cancer cells still exist in your body. My PSA is less than 0.1 after my radiation/ ADT treatments. -18 months ago, it started. Don’t over react , at MAYO they said on their monthly ZOOM, if ya gotta get cancer, this is the best cancer to get. Take care my friend. Bruce

So in part, the answer may lie in other clinical data...

You've given the biopsy piece, other clinical data which may be useful for members of this forum, you and your medical team:

Co-morbidities..even without treatment, it could be 8-10 years before serious problems with your PCa present themselves, will you be here?
PSA results - useful for calculating PSA doubling time and velocity
Imaging - Either the tried, not necessarily true, but what some insurance companies require - MRI and CT or one of the recent ones, a PSMA PET.

You say so many side effects, no matter what treatment you decide on, there will be side effects. In part, the experience of your team, whether radiation or surgery, play a role. When I had surgery in 2014, no incontinence, it was nerve sparing, regained erectile function in roughly 12 months. I have three different radiation treatments (see my clinical history, attached), SRT to the prostate bed, WPLN and SBRT. Zero side effects. Being a member of my medical team is a privilege, not a right, you need to know your stuff - "As a member of my medical team, you should have a thorough knowledge of my cancer and of the latest developments in research, and be ready to formulate a plan of attack."

As others have said, with surgery, side effects are generally immediate and gradually get better though many on this and other forums express great dissatisfaction with ED results. Radiation to the prostate and prostate bad can "fry" the nerves and you wind up with ED, just as with surgery.

You say you just want to "get rid of the cancer..," MSCKCC has nomograms for calculating the risk of recurrence after surgery, mine was 30%, you guessed it, winner, winner...Here's the link - https://www.mskcc.org/nomograms/prostate

I would begin with reviewing the NCCN Guidelines for patients - https://www.nccn.org/guidelines/category_1, that would be my starting point for discussion with my medical team. The NCCN also offers free resources for patients, called the NCCN Guidelines for Patients, which provide expert information about cancer treatment options. These resources are presented in plain language with visuals, charts, and definitions to help people with cancer and their caregivers discuss treatment options with their clinicians.

There are other resources, Prostate Cancer Foundation has a patient guide - https://www.pcf.org/guide/

I would start learning and use the terminology, when you say "hormone doctor..." that leaves us pondering who you are getting advice from. Generally the prostate cancer team is multi-disciplinary, urologist, often the surgeon, the radiation oncologist and a medical oncologist., add a cardiologist, dietitian,...Any of these three can prescribe hormone treatment, this last go round my radiation oncologist prescribed my Orgovyx.

There is "good" news...you have lots of choices. That is also not so "good" news as it may make decision making "difficult." Examples include doublet or triplet therapy - https://dailynews.ascopubs.org/do/would-you-use-doublet-therapy-and-not-triplet-therapy-patient-newly-diagnosed-mhspc. Why combination therapy - "Why combination therapy - heterogeneity and evolvability, via genetic or nongenetic mechanisms, are two of the greatest obstacles to the successful treatment of cancers..."

Here's one of my rules which has served me well these 10+ years after my urologist said "Kevin, that's a pretty aggressive cancer..." when reviewing my biopsy results:

"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 and clinical stage 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."

Members of this forum can provide their thoughts based on their experience, but your cancer is not ours. My advice - Consider the age of any treatment statistics you find. New advances quickly make them obsolete. Be careful about applying statistics to your own situation. You are an individual, not a statistic.

Kevin

I was diagnosed at age 72. Now 74.
Information and education will help to guide you.
Book: "Surviving Prostate Cancer" by Patrick Walsh, MD.
Also the Patient Guide from The Prostate Cancer Foundation (PCF.org), free in hard copy or immediate download.
I chose surgery, and would do so again.
Others on this site have chosen radiation and would do so again.
A Prostate Cancer diagnosis is upsetting. Information can be calming (somewhat; it's still a serious cancer diagnosis).
Learning more will help you participate in the discussions with your health care providers and assist you in making decisions.
Best wishes.

@solesky you might want to ask about:

The Decipher test of your biopsy material to check your cancer’s aggressiveness and doctors do use it to decide or revise treatment.

If radiation, ask about narrow margin real time mri radiation machines. The exposure of healthy tissue affects side effects. Different machines will result in different levels of exposure.

If radiation, are five hypo-fractional treatments available?

If radiation, is spaceoar available, which is an insert to provide distance between your prostate and rectum to limit healthy tissue exposure to radiation.

It is a process and is worth getting second or third opinions from radiation and/or medical oncologists from centers of excellence. Doctors are dedicated but not infallible and there are inherent unintentional biases in the choices doctors sometimes suggest. Keep coming back here for tips. You WILL get to a decision point relatively quickly and a comfort level with that decision. Take one day at a time.

Hi "solesky", Welcome to this most undesirable group and "brotherhood".
Given all the good comments above I'll just hit some high points. Many of which I've learned from this group.
We're similar age at diagnosis; mine at 75 (now 77). Doc said either radiation or removal. I chose removal hoping for one and done because I didn't relish hormone therapy.
Nope, some PC escaped so I did 2-years of hormones (Lupron). Yuck! but way better than PC.
Our job is to study vastly; learn lots; get to know yourself and the cancer you have (tests, lots of them)
Consider and plan for your life expectancy. My family all lived to near or in 90's. And that's my plan! And the PC and age may slow me down but I'm darned determined to get the most out of it.
Study and research some more and grill your doctors (multiple docs, likely) with questions.
And keep a fighting spirit throughout.
We're with you all the way so stay in touch here.
God Speed my Brother!
GranPun

I was 72 when faced with this same question. I had a plan but changed me mind after talking with several doctors and praying with me wife. When I final decided, I was at peace with my choice. Good luck finding your answer. There are lots of success stories out there.

I started from the same place - age 73 @ diagnosis, Gleason 7 on biopsy. The only thing I"ll add to all the excellent advice here...if you have a partner, make sure they are a full participant in the evaluation and treatment decisions you are about to go through. As my wife said, after hearing about erectile dysfunction, "It's my penis, too!"

83 when diagnosed with a Gleason score of 9+. It had spread to pelvic lymph nodes. Had radiaion for 9 weeks and and hormone injections every 3 months. Just turned 85 and plan on living into my 90's as did my dad. Other than some side effects from the radiation and Luprom ( hormone ) my life hasen't changed. Maybe I'm exceptional or just stubborn, but I refuse to allow PC to change my way of life. Workout schedule at the gym never was interrupted even during the days I had radiation. Same with yard work and social life.

If you choose radiation please go with Proton, since you cancer has not spread. It targets the cancer and doesn't impact surrounding areas.

As to prostate removal, in your case I would not do it. You will have side effects which could be worse than those from radiation and hormon treatment, and as others have said, the PC could still be present. A friend at the gym had his removed but the cancer came back and he had to go through the radiation and hormones plus deal with the side effects of the prostate removal.

Wish you the best.