This is the first in a series of posts following our journey dealing with a diagnosis of advanced prostate cancer. We hope that they’ll be useful and reassuring to you, whether you’re dealing with cancer yourself or supporting someone close. These posts are based on a series of Facebook posts you can also follow on our Facebook page.
Jeff’s cancer was picked up after his annual PSA checkup showed enlargement in his prostate. Many doctors don’t recommend this test because an enlarged prostate is very common in men as they age. There are a number of reasons for an enlarged prostate and cancer is only one of them. It is currently, however, the only test to show that something might be wrong before symptoms start showing up.
Jeff had no symptoms that anything was wrong and is in great health. I was shocked at how advanced his cancer was. Jeff’s father had died from prostate cancer and this did put him at a higher risk.
The next stop on our journey was a prostate biopsy. Under general anesthetic, a needle is used to collect around fifteen core samples of tissue. This did not sound appealing, but Jeff approached it with his usual courage and good humour.
The drive to the closest hospital to do this procedure is nearly four hours away from where we live in regional Australia. Our specialist considered the biopsy urgent and Jeff was squeezed in at 6:00 am. There was no chance of overnighting anywhere closer because of a Covid-19 lockdown, which complicated this whole process.
Jeff might not have been experiencing any enlarged prostate symptoms before the biopsy but he certainly was afterwards. The biopsy causes blood in urine and semen that can last for six weeks. He was also visiting the bathroom four or five times a night.
The Diagnosis – by Jeff
October 15 2020
I have been diagnosed with Prostate Cancer. It was categorised as a Gleason stage 9, which is advanced. Ten is the highest possible.
On Monday I will be having a PET scan to determine if it has advanced further into my body.
The outlook is pretty good if it hasn’t spread. I am choosing to have my prostate removed in the next few weeks. If it has spread, the extent of the spread will determine further treatment. This is an opportunity for me to practice what I preach.
I had Thyroid cancer several years ago and was able to navigate my way through that by using the principles of Choice Theory and what it teaches us about internal control psychology.
In the coming weeks, I will be focusing on what I can control and how I choose to be during the lead up to treatment, and in the period after it. Whilst I can’t directly control the cancer, I give myself the best chance of a good outcome by looking after what I can control… me! And how I choose to think and act.
Tomorrow I will undergo a PSMA-PET scan. This particular scan is super sensitive, it is now used in Australia where we are world leaders in the use of this scan. It can pick up prostate cancer in the body with 92% accuracy, far better than any other diagnostic tool currently available.
I am looking forward to getting the results of this scan…. no matter what they might be. You can’t fight what you don’t understand. The more accurate the information, the more targeted the treatment, with no unnecessary steps being undertaken, and less guesswork about the right course of action.
It might seem strange to some that I would welcome news that is less than optimal. Of course, I would prefer to hear that the cancer remains encapsulated in the prostate, but if it is not, I would rather hear this early and plan the best course of action with the advice and assistance of my urologist.
All evidence points to surviving, and indeed thriving, hinging upon early detection and swift informed action. The best results come from informed patients working as a team with talented medical personnel.
So am I nervous? No!
Am I worried? Nothing to be achieved by worrying, so no!
Am I feeling down? Certainly not, I won’t waste any energy on anxiousing, miserabling or depressing, they can’t help me and can only make things worse.
How am I feeling then? Confident!- that I will get the best outcome I can, once I know what I am dealing with!
The PET – PSMA Scan
PET- PSMA scan complete! I will get the results later this week. I learned a few things, about the process and myself!
– When they say the scan takes 30 to 40 mins, that is true.
– What they don’t tell you is to put two hours aside prior to your scan to be infused with the PSMA tracer.
– In a PSMA PET-CT, the tracer used for the PET scan includes a molecule that specifically binds to the PSMA protein, which is often found in large amounts on prostate cancer cells. That molecule is linked to a radioactive compound, or radioisotope.
-It’s smart to take some reading matter with you as you sit in a lined radioactive proof room while being infused.
– This room has “Warning Will Robinson” signs everywhere [apologies to those who don’t get the reference to Lost in Space].
– Grand Designs Australia is a great program to fill in the time when you have had enough reading.
– It is easy to fall asleep while you are having your scan.
– Don’t make appointments for later in the day because you believed the scan would only take 30 to 40 minutes!
– Rod Stewart is a good choice to listen to while you are undergoing your scan.
– By 2.00 pm in the afternoon you get very hungry after being immersed in the process for nearly three hours.
– It is too much to expect an already compromised bladder.
to cope while getting infused with a saline drip for over two hours.
GOOD NEWS!
The PET PSMA scan has shown no evidence of prostate cancer anywhere else in my body, other than that which is present in the prostate gland.
What does this mean? This test is accurate to around 92%, so while it isn’t guaranteed there are no rogue cells circulating it is strong evidence that I am clear.
Next Step, pelvic floor exercises and a strong focus on overall fitness prior to the operation. For me this means continuing my runs, walks and HIIT training every day, as well as looking after my mental wellbeing by focusing on the things I can control and enjoying what each day brings me… not too hard really because that has been my practice for a very long time.
I haven’t and won’t stop working, it brings me great enjoyment to continue sharing the wisdom of Choice Theory with those who are ready to learn it, and with the increased use of Zoom, I am talking to clients from around the world.
Deb and I continue to promote our online stress and anxiety management course. We are getting great feedback and I have the opportunity to practice what I preach on a daily basis and show that I am prepared to walk the talk.
I have decided not to join a support group, I know many people really like these, but I prefer to build a team around me who know me, practice and understand internal control psychology and use the connecting habits in their relationships with me. They certainly don’t need to be people who have the same diagnosis as me. My wife Deb is the number one ticket holder in my support group!
Why not join a support group as well? For me, I choose not to divert my energy by mixing with those who are miserabling, depressing or anxiousing. Experience has shown me that support groups can have a large number of sufferers or survivors who exhibit those traits. I don’t judge them, I just know that’s not what I need or want at the moment but if it is working for them I am delighted and encourage them to keep going. I know that statement may be challenging for some, but I am not trying to convince anyone that my way is right for anyone else, I’m just sharing what I believe to be right for me.
It has been heartening to have a number of men tell me that they will now have a regular PSA test as a result of my sharing what I have learned from my experience so far. All we can give anyone is information and if we do that in a non-judgmental manner, we have a greater chance that they will be open to it and choose a course that works for them. Everyone’s path is different, the right path is the one that works for you. Thanks for taking the time to read this, I’ll keep posting as events unwind.
I was diagnosed with Advanced Prostate Cancer on March 16, 2020 by phone because of Covid-19. PSA 34, Gleason 9, 12 of 15 core samples positive, Cribriform type cells, perineal invasion, cancer abuts capsule. Bone scan, MRI, CT scan were all negative. My Urologist who was also an Oncology Surgeon wanted to do a Prostectomy. He never mentioned any other options.
During our phone conversation he mentioned doing the surgery as soon as possible because of the aggressiveness of the cancer and would call me in a couple of days to schedule surgery. The Urologist said that the surgery should be no later than the first week of May. Two days later I got a call from a lady in his office. She said that due to COVID-19 that the surgery was postponed until further notice. She said that sometime in late May they would call and schedule surgery.
Needless to say, I did a lot of research during this time and decided to get me a second opinion.
The middle of May after much research and talking with several other Doctors. Urologist, Oncologist and Radiologist. I decided to forego surgery and do ADT and External Beam Radiation. (Surgery and Radiation have practically the same outcome). With my high numbers PSA now at 54, the chances of still having to do radiation after surgery was high.
ADT was begun on June 5, 2020 with a 6-moth shot of Lupron and a 50mg pill of Casodex. ADT is started for 2 months prior to Radiation Treatment. I began Radiation Treatment on August 19, 2020 and finished 45 treatments on October 19, 2020.
I am now in the waiting game to see how things are going. I will have blood work done first week of December and see my Oncologist December 8, 2020.
Can’t think of any real noticeable side effects from radiation that I wasn’t already experiencing. Frequent urination, ED-also side effect of ADT and being a little tired.
I have found that I do better if I stay busy. When I sit around and do very little, that’s when I feel my worst. Staying busy really helps me.
Wish Jeff the best.
Sorry I missed this comment Jack and I will give Jeff your best wishes. I hope your results in December a good. Jeff’s surgery has been scheduled for November 30. His biggest problem at the moment is dealing with all the administration work that seems to be totally over the top and different people wanting different things. Best wishes Deb
This is a topic that does concern me a bit, and I don’t really think of it often unless I see an article like this. I’m glad to know that an enlarged prostate could be the cause of various things, and not just cancer in itself. I’ve been telling myself that I need to go and start getting a checkup yearly. The PSMA scan is something I’ve never even heard of. I’m glad to read the good news that you received from that scan. I think this is a brave article you’ve written, and something that I truly do hope inspires other men who read it who are going through a similar experience. It actually is a reminder to myself as well that I can’t let this linger in the back of my brain just cause I feel okay. I need to be brave, go out there and find out how my health is.
Yes Paul 🙂 Life is a precious gift and knowledge is power. Thanks for your comment.
My grandpa passed away from prostate cancer when I was 7. He was reluctant to tell anyone about it even after he found out, by the time we all found out, his cancer was far from curable. None of us knew what to do or how to deal with it. This article has really brought those times back to me and I can definitely see that my grandpa could’ve used this article to get by and maybe dealt with it a little better.Thank you so much for providing this information for us
Thank you Misael. Your comment is very kind 🙂