Top 10 Mistakes After My Cancer Diagnosis

By Gogs

3 min read

I was diagnosed with prostate cancer at age 57 and had no symptoms, health issues, or family history. All my blood work, including blood pressure, was optimal. I wasn’t taking any prescription medications. As a black belt in karate, I lived a healthy and active lifestyle, training daily, and had tons of energy. In addition, I cycled to and from work and hit the gym five days a week. Overall, I was in the best shape of my life.

I panicked after my diagnosis

Therefore, it was an absolute shock to be diagnosed with cancer. At first, I thought it was a mistake. After all, I was healthy and fit with no health issues and no symptoms. I trained daily and maintained a healthy weight. It didn’t compute and was such devastating news that I panicked and made many mistakes.

Before getting into my mistakes, I’d like to point out one of the biggest. That was to make a treatment decision without all the facts. Even though my doctor recommended I seek multiple opinions, in the back of my mind, I had already decided on surgery.

For background, here are the details of my case.

My PSA was measured 14 times over five years, revealing a disturbing upward trend, with the latest reading of 7.8 ng/ml.
A digital rectal examination (DRE) revealed an enlarged prostate, typical as men age, but otherwise, felt smooth and healthy.
An MRI indicated a significant anomaly outside the reach of the DRE in the anterior zone of the prostate.
A targeted prostate biopsy found cancer in 5 of 6 tissue samples with a Gleason score of 4 + 3 = 7.
A bone and CT scan indicated no evidence cancer had spread outside the prostate.

With that news, I quickly jumped to have it removed.

I wasn't thinking clearly

My procedure was an open prostatectomy with two surgeons. I was on the table for three hours, in the hospital for two nights and wore a catheter for 14 days. Pathology reported negative surgical margins, and my prostate was a massive 178.75 cubic centimetres at 117 grams, almost the size of 4.5 golf balls. It contained 43% cancer with a Gleason score of 4 + 3 = 7, and in the final stage, T2c-N0-M0, before spreading.

Urinary control returned after six weeks. Erections returned after 17 months, but they are no longer spontaneous and not as good as before surgery.

Now that my treatment is behind me, I’ve had time to reflect on the experience. After much thought, I now realize that I was in shock after my cancer diagnosis. When I heard the word “cancer,” my mind immediately shut down, and I wasn’t thinking clearly. Ideally, I needed time to recover from the initial shock before moving forward.

My top 10 mistakes

Recognizing that I’ve made plenty of blunders, I’ve completed a list of my top 10 mistakes and presented them in reverse order.

I should have started journaling my experiences much sooner.
I spent too much time researching surgery.
I didn’t investigate alternative therapies.
I didn’t spend enough time studying other treatment options.
I should have included my spouse in the research.
I should have improved my diet and exercised sooner.
I didn’t seek multiple opinions.
I missed the opportunity to participate in the cancer care program at my local hospital.
I lost out on the chance to talk with more cancer survivors before making a decision.
And my number-one mistake is a tie between making a decision without all the facts and not joining a support group early. Support groups are a good source of information, and the social interaction can be therapeutic and bonding.

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Things I hope others in my shoes consider

With my newfound reflection, I’ve also compiled a list of things to consider before making a treatment decision.

Don’t make decisions while in shock.
Take your time.
Don’t panic.
Don’t think the worst.
Don’t be pressured.
Understand your test results.
Question your results, and ask lots of questions.
Research your options.
Seek multiple opinions.
Realize you’re not alone.
Join a support group if you can, even before making a decision.
Talk with cancer survivors and people living with cancer.
Talk with people you trust.
Share with family and friends.
Think about what matters to you.
Consider improving your diet and exercise.
Above all, ensure you trust your medical team and make sure they have extensive experience with many successful results in whatever treatment option you decide.

Every case is different

Whatever your decision, please know that not every case is the same, and everyone may experience a different outcome. For more details on my diagnosis, treatment and recovery, please read my other articles.

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
(I like your Top-10.) I started getting annual PSA tests when I was 45y (in 2000), and watched my PSA slowly rise each year (1.30, 1.64, 1.79, 1.87, 2.10, 2.60, 2.70, 3.40, 4.00 & 4.20). So, it wasn’t a big surprise to me that in 2012 when my PSA hit 4.2, that a biopsy showed low-grade, localized, 6(3+3) prostate cancer. Of course, I chose active surveillance (AS). No panic; no forecasting the timeline of my demise; no thinking that my life was going to end tomorrow. I’ve journaled every step of the way. I was on AS for 9 years, giving me time to calmly evaluate all treatment options until it was medically necessary to be treated. Eventually my PSA rose to 7.9, and my Gleason to 7(3+4) - with a 2nd opinion upgrading that to a 7(4+3). I chose to have 28 sessions of proton beam radiation (during April-May 2021), with SpaceOAR Vue, and 6 months (two 3-month injections) of Eligard. I used a careful, cautious, measured approach to treatment, just as I would for any other disease. (“First do no harm.”) Proton treatments were relatively benign. With significant resistance-training, the side-effects of the Eligard were a mild annoyance. Today, it’s as if nothing ever happened - just walked through a revolving 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 - that’s the way prostate cancer treatment should be. So far (now almost 3 years later), results have been good (just as expected), and I have no lingering after-effects.
1. JillBrodie Community Admin
 <inline-mention username="bvjarvis1" user-id="3258166"/> thank you for sharing your story. I am so glad everything is going smoothly for you. Jill, <a href='http://prostatecancer.net' target='_blank'>prostatecancer.net</a> team 
2. Gogs Moderator & Contributor
 <inline-mention username="bvjarvis1" user-id="3258166"/> Thank you for sharing the details of your case. I love reading success stories from others as it's so helpful for those newly diagnosed. Since every case is different, it's so important for people to read the experiences from many and to understand their particular case before moving forward with treatment decisions.
CommunityMemberc6518f Member
I've been ignoring my symptoms for too many years. I can list many reasons for this, but that is not important. What is done is done. My PSA over the last year went from 7 to 12, I had been diagnosed with BHP many years ago and attributed the early rise over the years to that. I was afraid of having a TRUS biopsy, but just could not find anyone local to do a transperineal. After it jumped to a 12 I knew I had no choice, had to do something. Dumped my first urologist and called Cleveland Clinic. Two hour drive but I felt it was worth it. First exam he looked over my reports and did a DRE (first guy never performed a DRE) he felt a small nodule and convinced me to have a biopsy, as there was definitely a target. This was a Tuesday and the biopsy was done on Thursday (TRUS). 18 samples 10 with cancer mostly on the right side. Gleason Score, 1 3+3, 8 3+4, 1 4+5. Followed up with whole body bone scan, and CT with contrast. Doesn't look like it has spread beyond the prostate. Small opacity detected in one lung, don't think it is related, but PSMA Pet has been ordered. At this point the urologist says I'm looking at Radical Proctectomy, followed by radiation and possible hormone therapy. Keep reading about all the other treatment options, but urologist doesn't seemed to think those are options. I'm 69 by the way, scared and confused.
1. Gogs Moderator & Contributor
 <inline-mention username="CommunityMemberc6518f" user-id="8852303"/> I'm sorry to hear about your diagnosis. And I completely understand about ignoring symptoms and not seeing a doctor. I've been there and know many men in the same boat. I'm happy you found another urologist, as it's important to trust and be comfortable with your healthcare team before moving forward. That's encouraging news, knowing that your tests indicate cancer hasn't yet spread. You are doing the right thing by exploring treatment options and seeking multiple opinions. I wish you every success and understand your situation.
Sue Franke Moderator & Contributor
<inline-mention username="Gogs" user-id="3261749"/> A guess we often go through life and learn many important things after the fact. But what's good about that is that we can share our experiences with others in the hopes what we have learned might be helpful. Our story is very similar. When my husband, age 55 and in good health, was diagnosed with prostate cancer, at first we thought someone made a mistake. Then we panicked. He had surgery immediately before exploring other options. Hindsight......... But we did learn about the importance of second end even third opinions. As cancer struck other members of our family seeking several opinions and options was a first priority. Thanks for sharing the important things you learned. I'm pretty sure your experiences and sharing will help others. 
1. Gogs Moderator & Contributor
 <inline-mention username="Sue Franke" user-id="4506969"/> Thank you, Sue. You are so right about going through life and learning after the fact. That seems to be very typical of everyone I know. And by sharing our stories, we might be able to help others avoid our mistakes. I'm sorry to hear about your husband's diagnosis, and I hope he's doing well. And I'm also sorry about cancer striking some of your other family members. Your experience will definitely help them move forward. I wish your husband well. Thank you for sharing.
2. Sue Franke Moderator & Contributor
 <inline-mention username="Gogs" user-id="3261749"/> Thanks Gogs. I'm sure what you shared in your top ten mistakes as well as the solutions you suggest are very helpful to others. As a note of encouragement for others going through similar situations, my husband is a 15 year survivor of stage 4 prostate cancer. He's had ups and downs, his psa continues to rise but not enough to begin treatment. He is doing great and leading a pretty normal life We just celebrated our 50th wedding anniversary, are so grateful for the years we've had together and plan on enjoying more years to come. Best wishes to you.
Jim Early Moderator & Contributor
Thanks Gogs for all your insight! I facilitate a support group in Palm Springs. We have about 100 guys on our group list with 15-20 participating in person or by zoom twice a month. Almost every session we have one or two who have just been diagnosed and are searching for answers. Almost without fail, these newly diagnosed men comment on how reassuring and valuable the group was. Just being able to hear all the various experiences and to be armed with a more complete set of questions and options is a benefit in and of itself. Our group is primarily gay men and, not surprisingly, some of their concerns are unique to the gay community. But, at the same time, our members have spread their knowledge far and wide to other friends and family regardless of their sexual orientation. We are all in this together and the bonding that I and others have experienced have turned this terrible lemon into something less frightening if not quite lemonade.
1. Gogs Moderator & Contributor
 <inline-mention username="Jim Early" user-id="4566171"/> That's awesome, Jim. When I was diagnosed with cancer, I didn't want to join a support group. But that's because I didn't know anything about it and had the wrong idea. Had I known at the time that it was a great social and bonding experience, I would have joined much earlier. Since attending the support group, I've made many new friends I wouldn't have known otherwise. I highly recommend everyone join a support group.
Da_Mick Member
My only comment or addition to this helpful article is that, in my opinion, it is most important to read everything you can and become your own expert BEFORE seeking follow-up opinions, otherwise it's impossible to evaluate the value of those opinions or give context to any varied opinions. Yes, you certainly have to ask lots of questions, but unless you know the answers yourself, you can't know the important questions to ask, and you can't judge the value of the answers you receive. The strongest feeling of security you will ever feel is when YOU know -- beyond any doubt -- where you are in the scheme of things and that you and the person who's hands you are putting yourself in are on the same page.
1. Gogs Moderator & Contributor
 <inline-mention username="Da_Mick" user-id="8856558"/> Excellent addition! Since my cancer diagnosis, I must have read at least 30-40 books on the subject and dozens of Websites. The only problem is that I did my detailed research after my treatment. As you point out, it's critical to become your own expert and advocate before making decisions and moving forward. Thank you so much for your comments, as they will help many.
CommunityMember82973a Member
Good article. I'd been getting PSA tests in the mid to high 9s since 2017. My urologist did an MRI and a biopsy in 2019 which was benign. In July of 2023 my result was 13.7 and another MRI and biopsy was scheduled. The result was MRI fusion TRUS with prostate biopsy which showed positive for prostate cancer, Gleason 7 (4+3) - I elected surgery because radiation would have required a one hour forty-minute drive, in each direction five days a week for six weeks into northern Virginia near DC which would probably be more dangerous than the cancer. I opted for the Da Vinci Robotic Surgery. All went well and now, a bit over a year later, I feel good and my PSA tests are "non-detectable." I experienced no negative issues such as incontinence. I think I made the correct decision - but I also had an outstanding doctor.
1. Gogs Moderator & Contributor
 <inline-mention username="CommunityMember82973a" user-id="6713210"/> Thank you so much for sharing your story. I totally understand not wanting to drive an hour and forty minutes in each direction five days a week for weeks. And you raise a good point. Even though many treatment options may be available, not all are within travelling distance or cost. I'm happy to hear that your surgery went well and your PSA is now undetectable. Undetectable has become one of my favourite words. You also raise another great point. No matter what options one chooses, ensuring your healthcare team has extensive experience and an excellent track record with that treatment is critical.
bullseye19 Member
Hogs, Your story is a mazingly similar to thousands of us who are diagnosed every year. I was very fortunate to get hooked up with a group of survivors in atlanta where my sister knew many of the survivors. I talked with a bunch of them and they encouraged me to get into. Support group whole o was still in a fog. I was also fortunate that several senior execs in my company had had treatments- surgery (bad choice for a 3+ 3 Gleason, and the other two had radiation. I also made a visit to a radiology clinic in Atlanta. Thee I spoke with new, medium term and folks completing the 40 something treatments. All were very open and answered lots of questions. I was sure I was going to choose radiation until I went to a support group meeting and heard about focal ablation treatment. That made more sense to me. The only negative was it was not covered by insurance. But, fortunately, I was able to cover the cost. My last ablation was covered by Medicare. It’s easy to get tunnel vision and miss the entire big picture. Bottom line is that it is our choice to make. Sure, maybe you could have done more. But it’s the result that counts. You can second guess yourself forever. I don’t think you are. Your list is great hopefully others will se it and make good use of where you went wrong and what more you could do. It’s a great start. I wish I had had it early on. Fortunately I was able to get back on track after. Couple of months and with the help of my bride, I made what I consider the best course for me. 
1. Gogs Moderator & Contributor
 <inline-mention username="bullseye19" user-id="4184745"/> Thank you. It's so true that many men get tunnel vision and miss the big picture after their cancer diagnosis. And, of course, I was one of those men. Your comments add lots of value to other's reading. As you point out, speaking to those who have gone before us tremendously helps us make our own treatment decisions. And I love your advice about not falling into the forever loop of second-guessing. So many factors are involved, and second-guessing adds to the stress of living. Best wishes to you and your bride for a happy and healthy long life.
pete.lane Member
at the time, I was 53 years old (and with a family history of prostate cancer). In my case, the biopsy revealed tumors. We discussed options as presented by the urologist and he urged me to do something other than hopeful waiting. I opted for surgery, mainly because if it's removed before spreading, then it's gone and I don't need to worry about it returning for the rest of my life. (my PSA is now zero) In the years afterwards, I thru hiked the Appalachian Trail and biked across the country with our daughter. In doing so, I discovered the tremendous feeling experienced by other cancer survivors of not letting cancer beat you. Other than being impotent (if that's the right word), I continue to live a full and active life. For me, surgery was the right choice. 
1. Gogs Moderator & Contributor
 <inline-mention username="pete.lane" user-id="4434310"/> That's great news, Pete. I always love hearing success stories regarding cancer. You have a great outlook on life. Thank you for sharing and I wish you continued good health.

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