Prostate Cancer: What Questions to ask doctor upon initial diagnosis?

Cancer.net and cancer.org have list of questions.
https://www.cancer.net/cancer-types/prostate-cancer/questions-ask-health-care-team
https://www.cancer.org/cancer/types/prostate-cancer/detection-diagnosis-staging/talking-with-doctor.html
laurie

Should a prostate removal surgery become an option, I seriously advise on getting Pelvic Floor PT for several weeks of PT prior to the surgery, and more afterwards. With both of these, I was fully continent after my RALP.

I also advise on purchasing Dr Patrick Walsh's book (Amazon) on surviving prostate cancer. Real the highlighted sections at the beginning of every chapter. Continue on and read the chapter if it is applicable to your situation.

Take a spouse/partner/friend to all the doctor visits as once you hear the word "cancer," you may tend to recall little else.

Best of all, come back here with questions. We have been through this and are willing to share our experiences, both good and bad.

Best of luck as you go down this path.

Simple questions to begin with, with my answers in square brackets "[ ]":
- What is my PSA? [I was under 10, caught it early!]
- After biopsy (assuming you've had one), what are my Gleason scores and percentage of cancer findings? [3+3, some 3+4, a large percentage though]
- Does cancer appear to be enclosed within the gland or might it have spread beyond? [No, confirmed with MRI]

To you:
- What is your family history with the disease? Father, his brothers, your brothers. [yes, yes, and he never checked. My grandfather died in 1980, before they really tested for it.] Ignore anything on your mother's side, that shouldn't have any effect here.

Now, as far as radiation versus surgery. My decision was for radiation because:
- With surgery, you wear a catheter for a week afterwards. [No thanks, did that a couple years ago, didn't enjoy it one bit! Re-confirmed when I had one in during my Brachytherapy for a couple hours. Took a few days for the pain to subside!]
- With surgery, you can't do much of anything strenuous for about a month so you can heal. [With radiation, I missed one day's work when I had my Brachytherapy, but was fine otherwise. This included a three day stretch in the middle of my treatments when we had to unload the freezers at work due to a power outage plus restock them when replacement provisions started rolling in a couple days later.]

Now, if you have a more complicated case than I did, some of the questions and my solutions may not apply. Good luck in your journey through this ordeal. It sounded daunting when I was first faced with it, but good friends and a good music list got me through it. I find out in July how good the treatment worked.

1) When will my MRI and Bone Scan be scheduled?
2) What does my Gleason Score mean?
3) What side effects of each treatment are?
4) What surgeons would he recommend if you choose that option?
5) Does my cancer respond to radiation?

I just went through a RP due to a high Gleason score of 8. I am thankful for my urologist catching the cancer early. So, I did not want to mess around with it possibly spreading. The type of cancer I had was not known to respond to radiation.

I am 62 and my urologist help me set the priorities of 1st, cure the cancer; 2nd bladder control; 3rd sexual function. But those were set by the aggressiveness of the cancer.

Praying you have wisdom in your decisions.

Good question!

Check out the mid-year PCRI conference via this link and https://pcri.org/2023-myu and fast forward to 1:07:00 and see the slide that that shows the "team" that you will possibly need for prostate cancer. I'm sharing this because your question brings up the good point that certain questions are meant for certain members of your health team.

For example, a urologist usually treats male and female patients and deals with all diseases of the urinary tract, while an oncologist treats all forms of cancers, and within both are specialties. A big part of what you are asking is related to self-education, so you will need to know which questions to ask which professionals.

Think of prostate cancer (PCa) like a general contractor (GC) for construction of a home. You would hire a plumber to do things that involve water, and a finished carpenter to build cabinets, and a landscaper to do the outside garden. In that slide mentioned above, there are lots of people you will need on the team.

Don't be overwhelmed and educate yourself and come back here to ask questions and share.

My 2 brothers and I all had prostrate cancer. We had our DNA checked to see if there was a defect in our DNA that affected the creation of the cancer. In our case it wasn't, but about 15 percent of prostrate cancer comes from gene defects. All cancer cells are defects in cells when we reproduce new cells. As we get older the cells create more defects in DNA. You may want to have the DNA checked. Some defects can be treated. If you have a genetic defect, other male members may have the defect. Any cancer center could do the check and like Mayo will have specialists.

Education, education, education. Learn as much as you can about this condition period. I did, and remember the look on my oncologist and nurses faces when I beat them to the punch on a treatment plan. After that, I was treated as an equal. I was stage 1, intermediate, Gleason 4+3/7. Went with proton radiation 5x and hormonal therapy. So far so good, minor side effects and I rang the bell. Good luck and have faith, Sir.

A bunch of good questions were mentioned. A couple more-If radiation is a choice, ask them about the mridian viewray machine vs mevian proton therapy machine vs other kinds of radiation machines? Ask them how far does the radiation extend to healthy tissue with each machine (2 mm to 6mm: the smaller the number, the less area that is radiated) during treatment? Ask them, if all outcomes are relatively the same, which provides the best quality of life issues from day 1 after treatment? Ask them about spaceoar and its ability to give you an extra 2 inches of protection from radiation between the prostate and the rectum.

Question for you. Did your father or any of his brothers have prostate cancer? If so, that could be a clue to you and your brothers' cancers. Prostate cancer appears to be hereditary, but only on the male side. Not sure about the gene defect cause, though I suppose it's possible.

In my case, my father and all three of his brothers had prostate cancer. Not sure if my only brother had it, as he never checked. Since he's been gone about 7 years now, it's too late to check.

As far as I know, my father and his siblings did not have prostrate cancer. However, I had 2 brothers who did have. My oldest had passed away but after my other brother had PC last year. I had it in 2018, we checked our DNA . They didn't find any associated genes of 20 that could be related to PC. It's likely that we had environmental factors. They said about 15% of men with PC had genetic defects with one of those genes. I'm not a medical expert but looking at some of the research on these gene defects can be treated. Most cancer centers, like Mayo, can check DNA with a blood sample to identify gene issues and treatments. It's another of the tool box available for treatment.