Navigating Medical Decisions When Newly Diagnosed With Prostate Cancer

With the initial shock that comes from learning you have prostate cancer, it can be hard to know what to do next. Starting this journey can seem overwhelming, but it does not have to be. Many men have had and survived prostate cancer.

We reached out to the ProstateCancer.net community asking: “What advice would you give to someone newly diagnosed with prostate cancer?”

Nearly 200 community members shared. This is what they said about doctors and doctor appointments when it comes to prostate cancer.

Get another opinion

So, so many in the community stressed the importance of getting a second doctor’s opinion -- and sometimes even a third. It is important to know the options available to you. You can only make an informed decision when you have all the information.

“Seek more than one opinion.”

“Then get another opinion. I am 72 and got my first diagnosis when I was 54. Now I am 73 now and still going strong. You will be fine.”

Make an appointment with a radiation oncologist

Your urologist is the first line of defense against prostate cancer. He or she will perform the PSA test, measuring the prostate-specific antigen protein in the blood. If your urologist is a urologic oncologist, he or she may be qualified to continue helping you. Otherwise, the next step is to see an oncologist to determine the best course of treatment.

“Make an appointment with a radiation oncologist, because you have already seen a urologist.”

“The urologist gave me two months to live. Fortunately, a good oncologist put me on ADT. I went off of hormones 2 months ago and went on Enzalutamide. I am doing great with a PSA of under one.”

“Find a good cancer center and a good oncologist.”

“Research, find a highly qualified doc. Even if you have to drive an hour to see them. I swapped from a run-of-the-mill urologist to a well-known urological oncologist who is published, etc, and I feel like that made a difference. Find the best, and leverage that.”

Make sure your bring someone with you!

Another important point that several of you shared is how helpful it is to bring someone else -- a partner or friend -- to your appointments. So often, the patient can be too nervous to fully absorb everything the doctor says. If possible, have your partner or friend take notes or record what the doctor says as it is nearly impossible to take in all of the information during the appointment, and you will likely want to later review what the doctor said.

“Take your partner with you. Two sets of ears are better than one.”

“Make sure you bring someone with you! You need an advocate to ask questions. It is overwhelming at first.”

Do your research

You will always be your own best advocate -- and you can best help yourself by getting familiar with your test results. Everyone is different. To fully understand what is happening in your body, it can help to read up to understand what the numbers all mean. An added benefit: Although it may feel scary to learn about prostate cancer, you may find that educating yourself about prostate cancer puts you in a position of power, which might help you feel calmer.

“Understand your pathology report. Ask what your prostate size is because they never tell you.”

“Do your research.”

“What is your Gleason score? That will give you an idea of how aggressive it is.”

We want to say thank you to everyone who shared. Your feedback and suggestions are invaluable.

If you have any other tips to pass along to those newly diagnosed with prostate cancer when it comes to advocating for yourself in the doctor's office, share your thoughts in the comments.