Following a prostate cancer diagnosis, it’s easy to feel overwhelmed. Between understanding your Gleason score, learning about cancer staging, and researching different treatment options, you may feel like you have a lot to learn and very little time to make decisions. Looking back on their diagnosis, many patients say, “I wish I had known THIS”, and want to share wisdom with newly-diagnosed patients who may be looking for answers.
To learn more about expectations and information during the prostate cancer journey, from diagnosis to treatment, we asked our prostate cancer community, “Do you think you got all the information you needed when you were first diagnosed with prostate cancer?”. Check out these responses for some tips on managing the diagnosis and treatment decision-making phases of prostate cancer.
Tip 1: Do your research, and get a second opinion
Community members had this to say…
“Always get a second opinion”
“No…I recommend patients do their own research”
“I had to do research myself and push for second and third opinions as most doctors have their own standard vs tailoring it to patient.”
“Not at first, but after talking to different doctors, that gave me more information”
After a prostate cancer diagnosis, it’s important to build a strong healthcare team to help you get through treatment and recovery. While many men feel comfortable with their original urologist or oncologist, experts recommend that you always get a second opinion before starting treatment. As described by some of our community members, a second opinion can give you the additional information and/or options that you need to feel comfortable, and help you understand if treatment is right for you.
Although your healthcare team is made up of experts, you are the expert on your own body and what you want to do regarding treatment, so it’s important to learn and understand as much as you can before committing to a treatment plan or choosing a healthcare provider. Doing some research can also help you to find prostate cancer specialists, understand cancer staging, and learn about new prostate cancer research and treatments.
Tip 2: Learn about side effects & long-term effects of treatment
Community members told us…
“[I needed to know] the long-term effects after my surgery.”
“Seems they downplay bad parts and then say that *could* happen”
“Had my last radiation treatment end of June. Can honestly say if I had it to do over, I would not do it. Now have bladder and bowel control issues, no more sex with wife…Not worth it”
Before you begin treatment, your doctor should discuss any potential risks and possible long-term consequences of your treatment plan. However, according to some of our community members, many providers do not fully explain the potential side-effects of treatment, and many men do not completely understand what side effects can occur with a given treatment approach. As described by our community members, researching and understanding the possible effects of these potential treatment options will help you feel prepared to manage and cope with these changes.
While several treatment side effects (such as erectile dysfunction, some urinary problems, hot flashes, depression, and anxiety) can be managed with medications, you may want to learn about other ways to cope with long-term effects, such as finding emotional support or complementary approaches. While every man with prostate cancer will react to treatment differently, it’s important to ask your healthcare providers about all of the potential outcomes of your treatment and do your own research before your treatments begin.
Tip 3: Talk to your healthcare provider about follow-up screenings
Some community members are strong advocates about this…
“Don’t ignore urinary bleeding or rising PSA. DREs a must!”
“I wish men would not be scared to have their PSA checked”
“I didn’t know I had prostate cancer until I went to my doctor. A routine urine test showed I had blood in my urine.”
Following a prostate cancer diagnosis, it’s easy to think about the signs and symptoms that you “should have noticed”. While some men experience symptoms (such as changes in urination), most men with early prostate cancer do not experience any symptoms. Based on your individual risk factors and age, your doctor may recommend regular prostate cancer screenings, such as a prostate-specific antigen (PSA) test, digital rectal exam (DRE), or even a prostate biopsy.
As stated by these community member quotes above, you should ask your doctor about doing routine prostate screenings, especially if you are in a higher risk group and/or experiencing possible symptoms. While some men are hesitant to know their PSA levels, or dislike the idea of a DRE, knowing your risk and being proactive about prostate screening may make a big difference in the future.
Time for yourself…and others
Hindsight can be 20-20. Following prostate cancer diagnosis and treatments, many men in our community members have shared the things they wish they could change, or wish they had known earlier in their prostate cancer journey. While no amount of information or advice can lead to a perfect treatment plan, being as informed as possible goes a long way to help men feel they “own” their treatment journey.
For those community members who weighed in on this question, we appreciate the feedback you provided! We believe these thoughts offer a valuable perspective to newly-diagnosed peers and their caregivers. No matter where YOU are on your journey, we encourage you to connect with others in the prostate cancer community to share your story and your perspective on the roads you have taken in your journey.