What You Need to Know After Getting a Cancer Diagnosis

By Gogs

4 min read

Getting a cancer diagnosis can be devastating. I know it was for me when I was diagnosed with prostate cancer. It hit me completely out in left field, like a ton of bricks. As a result, I panicked.

My first thought was that I was going to die. And my second thought was I wanted the cancer to be gone. Therefore, I was about to make a quick and uninformed treatment decision. But I’m thankful my urologist told me to slow down.

Being urged to slow down

In fact, he said we didn’t have enough information to make a decision. I still needed further testing. We didn’t know the stage and the Gleason score that indicates cancer aggressiveness. We didn’t even know if the cancer had yet spread.

More importantly, he pointed out many treatments are available to consider once we have all the facts. And depending on test results, active surveillance might be an option. A process to avoid or delay treatment until tests indicate cancer is on the move. And above all, he recommended seeking multiple opinions before making a treatment decision.

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I was in shock and not thinking clearly

I didn’t recognize it then, but on reflection, I was in shock and not thinking clearly. Therefore, I think the first thing to do after a diagnosis is to allow yourself enough time to recover from the initial shock. And resist the urge to rush, especially when you do not have all the facts regarding your specific case.

I now understand that my brain couldn’t process all the information at the time without a sound mind. Therefore, giving myself time to accept the diagnosis was critical before moving forward. Please ensure you give yourself enough time before you make any decisions.

To learn more about how not to make a decision, please read my article “Prostate Cancer and How Not to Make a Decision.”

Potential next steps after a diagnosis

Ask the doctor questions

Once you have had time to clear your mind, I think it’s vital to understand your test results and ask questions if anything is unclear. Once I was able to think more clearly, I was anxious to learn more about my cancer. I must have asked my urologist dozens and dozens of questions. And I’m forever grateful that he took the time to answer every single one to my satisfaction. Please consider changing urologists if you are uncomfortable with any of their answers or lack thereof.

Talk to loved ones, if you feel comfortable

Next, consider opening a two-way conversation with your loved ones or healthcare team. I know for me, talking about my cancer diagnosis was not on my mind. In actual fact, I had no plans to talk about it. I didn’t want people to know, not even my spouse. But I soon realized talking about it was incredibly therapeutic. And the more I shared, the less alone and afraid I felt. And by including my spouse, we formed a closer and stronger bond.

Consider a support group

Consider joining a cancer support group and speaking with others who have cancer. At first, I was against joining a support group, as I didn’t want anyone to feel sorry for me. I must admit that walking through the door to attend my first meeting was extremely difficult. But I’m glad I joined, as it was a healing process.

There was no pressure to talk about my diagnosis, and it turned out to be a wonderful experience. I’ve since made several new friends in the group, and we don’t always talk about cancer. It’s very comforting to know we are not alone.

Research different treatment options

Finally, once you have had a chance to understand your specific case, it’s critical to research the many different treatment options available and to seek multiple opinions. Think about the side effects of treatment and what’s important to you. It’s a personal decision, and you need to understand the risks with each treatment option.

Remember your mental health

And don’t forget about your mental and emotional health. Getting a cancer diagnosis is stressful enough, and you may need to find healthy ways to cope. To learn more about my coping mechanisms, please read my article “Prostate Cancer and My Coping Mechanisms.”

Information is power

Information is power, and I found that the more I learned, the more empowered I felt. I must have read at least 30-40 books on cancer and hundreds of websites. I’m not suggesting you do the same, but for me, I became obsessed. However, the more you know about your diagnosis and treatment options, the better position you will be to make an informed decision.

In conclusion, please realize that every case is different. And while one treatment option may work for one, it may not work for another. All treatment options can be viable depending on several factors. Including, but not limited to, your test results, age, general health, how far cancer has invaded, and the experience of your healthcare team. I wish you every success.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ProstateCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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bvjarvis1 Member
It’s not mentioned in his editorial, but it would be interesting to know (1) how old he was when he was diagnosed and (2) for how many years had he been getting PSA/DREs before his diagnosis? Did he start PSA testing early and was he getting tested annually? Early and annually testing is key to getting through this both physically and mentally well. I had been getting PSA tests since I was 45y (in 2000); it wasn’t until I was 56y that I was diagnosed with low-grade, localized prostate cancer. I still have the journal that I began maintaining at that time, and I read in that journal that my initial comments to my urologist were - “I don’t know anything about prostate cancer so, I’ve got a zillion questions to ask before you cut anything out of me, or bombard me with radiation, or inject toxic chemicals into me……” From that point on, my journey started to learn all that I could, self-advocate, and shared in the decision-making. My four siblings (three brothers and one sister) weren’t particularly interested; I never told my elderly mother about my prostate cancer diagnosis - at 92y/o, I saw no need to worry her about something happening to her son that she could do nothing about. (My siblings committed to not telling her about my diagnosis.) She died peacefully in 2016 at 96y/o never knowing. I was recommended quite a few books to read. What I found was that reading one of the many popular books about prostate cancer, was a little like learning French by being given a book written in French. What I needed was a tutorial, not teaching me all about prostate cancer, but taking me through 1st-grade level information about prostate cancer, then 2nd-grade level information, then 3rd-grade level,…….etc. Fortunately, my initial decision to go on active surveillance (my urologist recommended a prostatectomy) bought me the time (9 years) to review literature, beginning with basics (i.e., 1st-grade level information), and then building on that knowledge month-by-month, year-by-year. For me, my coping mechanism has always been to immerse myself in what’s going on. Whether it was a death of my parents - as the executor, I immersed myself in that activity, or as in this case with prostate cancer, immersing my self in information and becoming a “student of prostate cancer.” Following 9 years on active surveillance, I’m now just under three years since completing 28 sessions of proton radiation treatments and life is back to normal. It’s as if nothing ever happened - just walked in a door, got treated (28x), and walked out the door…..it’s practically back to the way it was before the prostate cancer journey started. Just like other medical treatments - like the robotic cholecystectomy that I had four months ago - that’s the way prostate cancer treatment should be. What I learned is that there usually is no reason to rush a treatment decision, take the time to learn as much as possible, let the data (not emotions) guide treatment decisions, consider side/after-effects, and make an informed treatment decision.
Gogs Moderator & Contributor
Thank you for your comprehensive feedback, bvjarvis1. I appreciate it, and you have provided a lot of helpful information. I was 57 at the time of my diagnosis and had no symptoms of any kind. My PSA was monitored for over a 5-year period that revealed a disturbing upward trend. I've had several DREs over the years, even by different doctors, and everything was clear. Turns out my cancer was in the final stage before spreading, even though I had no symptoms. And the tumour was the size of two golf balls outside the reach of the DRE! I provide more details in another article I wrote named <a href='https://prostatecancer.net/living/advanced-cases-rising' target='_blank'>https://prostatecancer.net/living/advanced-cases-rising</a>
1. Jim Early Moderator & Contributor
 Excellent summary Gogs. In your final paragraph you emphasize the fact that every patient with prostate cancer is faced with a unique situation. The risk for frightened, newly diagnosed patients is listening to the loudest or nearest voice and proceeding to a hasty decision. In our support group, more often than not, newly diagnosed members leave their first session surprised by the variety of treatment and decisional paths the members have chosen. As a physician practicing through the 70s, 80s, and 90s I noted a shift in patients' attitudes. In general there is less willingness to accept healthcare providers' advice on many issues. But when a patient is suddenly confronted with CANCER they still often hand over their decision making to the first doctor, friend or acquaintance who claims to have the answer to their dilemma. As healthcare advocates, it is our job to help patients put on the brakes and help guide them to the information, resources and support they need to access before making too quick a leap to often irreversible decisions!
2. Gogs Moderator & Contributor
 Thank you, Jim. If I had to do just one thing differently after my diagnosis, that would be to join a support group. Even before treatment, before making a decision and before doing research. At first, I didn't want to attend a meeting as I didn't want anyone to feel sorry for me. But I had the wrong idea about support groups. My first step through the door was difficult, but I immediately felt a sense of belonging with all the warm greetings. And there was no pressure to talk about my cancer or anything else. It was a great experience, and I've since made many friends. Seeking multiple opinions from doctors is one thing. But listening to the stories of those on the front line was very enlightening.
grandy74 Member
My wife and I had relocated in 2020 and it meant a change of Dr. I went from a male, who routinely checked my PSA to a female who preferred that I had my male needs done by a urologist. No big deal. In 2022, I was looking thru my records and saw it had been a few years since I had a PSA test. Mine was always very low so I was not concerned, but I scheduled one anyway. I was 66 at the time. Results cam back around 4, not terrible for my age. Dr said they can do an MRI, but he also was not concerned. Fast forward, had a MRI/biopsy late winter and had scores in two areas that were 9 and a 10. May 31st they took it out. Have had three PSA tests since and all were close to zero so no other treatment at this time except diligent testing. I had zero symptoms. As side note, about the same time, my 71 YO brother was having some issues (very sore back mostly). He found out in early March that is was prostrate cancer that had spread. He passed in June. Get tested. Tell everyone you know to get tested. 
1. Gogs Moderator & Contributor
 I'm sorry to hear about your brother, grandy74. I also had absolutely no symptoms, even though the cancer was already in the final stage before spreading. Had I waited for symptoms, my diagnosis may have been terminal. Your message to get tested is life-saving. Everyone should know their PSA and monitor it for change.
CommunityMember1643bc Member
Great post and more need to read this to get through the initial stage!
CommunityMemberd94284 Member
I’ve been under active surveillance for about 6 months and as of now everything is ok,but I’m thinking how would you know if the cancer is spreading?
1. Gogs Moderator & Contributor
 Hi CommunityMemberd94284, that's an excellent question. I know several men on active surveillance who regularly monitor their PSA and DREs. In addition, they have scheduled MRIs and, if necessary, a prostate biopsy. It would be good to discuss your active surveillance plan with your doctor.
2. Gogs Moderator & Contributor
 Excellent article on follow-up testing, JillBrodie. My dad has been on active surveillance for five years. Unfortunately, his cancer has spread. However, he just turned 90 and has opted to avoid treatment. He's still active on the dance floor and is not worried. I agree with him as he just wants to enjoy whatever remaining life he has without risk of treatment.

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