My Prostate Cancer Journey

Are We The Waiting?

June 21, 2023

For the rest of 2022 and the first half of 2023, I am doing active surveillance with my urologist. This means that every 3-6 months I will be doing some kind of observation as to what I have and if it's progressing. My urologist wants me to wait 6 months and come take another PSA. There is no point in doing anything before that because the biopsy itself will cause enough inflammation that the test wouldn't yield any useful result. So I wait. The initial shock has long settled and I'm not really thinking about it much these days. Just knowing that we are watching it and that there isn't much I can do about it at the moment makes it easier to handle. Over this time, I've talked about it to a few close family members and friends, but that's about it. It's September when I get my next test: 4.24. At first, I'm a bit surprised as that looks like a pretty big jump from my last result of 3.54. However, I then plot out the results over time and I remembered that my last test was almost a year ago rather than 6 months (due to the biopsy) and so when plotted over time the jump was, essentially, linear. That makes sense to me since we aren't treating it at this time, I shouldn't expect it to just get better. The math is calming to me. Again, that might be strange, but I have mind of an engineer so I like it when the numbers make sense. My doctor agrees and wants me to come back in about 6 months.

Jump to April of 2023, and I get yet another PSA test: 3.97. So it's down a bit from September, but still higher than the first two tests in 2021. My urologist really wants to get a better sample of the specific areas of the prostate and get some samples. Now that I have a positive diagnosis, insurance will pay for the MRI-assisted biopsy rather than the traditional. So while I'm not happy about getting another biopsy 1 year later, I recognize that I agreed to active surveillance and so I can't really complain about....actively surveying it, now can I? As a bonus, I get to share my experience with both methods which may help others out there so that's a bonus. My pain, your gain, right? We schedule the biopsy for the late May, the Friday before the Memorial Day weekend here in the US. So a bit more waiting....

Please note: This blog is based on one man's experience and is for educational and support purposes only. Nothing in this blog should be considered medical advise. Always consult a physician to properly evaluate your particular health issues.

Where Do We Go From Here?

June 17, 2023

So after staring at the 2nd sample for a few minutes, I continue reading the other 11 samples. All are clear. Yet somehow this only brings so much comfort. My eyes keep going back to sample B. I take my tablet up to my wife's office and show her the results. This isn't just because she's my wife and should know but also because she spent 15 years as a nurse and has been invaluable with health-related things, especially “medical-speak”. She confirms my interpretation of the results. So now what? Well, I've read sample B several times now but I don't know what it means. So I do what any technical person would do...consult the internet. Time to break down the terms so that I could try to understand what I have. Now I'm sure there are people who have issues with googling one's medical conditions, but my goal here was not a substitute for my doctor's knowledge of the subject. Rather I just want to be able to ask intelligent questions. I saw this as a business meeting and wanted to be prepared and make the best use of the appointment time, an appointment that was in two days. Maybe that's a strange early reaction, but learning is an important part of my life and, in times of emotional stress is a comfort to me. For example, when my mother died, I found great comfort in learning how the probate and estate system worked in my state as I was to handle her estate. Is that coping by avoidance? Maybe, but it works for me.

So the first thing to figure out is prostatic acinar adenocarcinoma. That's just the most common type of prostate cancer. Ok, got it. Now, the next thing: my Gleason Score and Gleanson Grade Group. That looks important. Feel free to click on the link for more details but what's relevant here is that my score was 3+3=6. The 3+3 refers to the configuration of the cells, and the total is used to put it into a risk profile. 6 or less is the lowest risk group, called grade group 1. That matches the result on my pathology report. This makes me feel a bit better as everything I can find says that Gleason Grade Group 1 is the lowest risk of spread and not particularly aggressive. That is probably as much as my non-medically trained brain can handle but at least I have some clue before going to see my urologist.

In the mean time, I decide to reach out to my father to see if he's aware of any family history. I was not aware of any but, I suppose, I never had much of a reason to know. There was breast cancer in the women on both sides of my family but, from everything I've read, that doesn't appear relevant to my case. Of course, when I ask the question my father naturally asks me if I have prostate cancer. I told him I did and he tells me that he was unaware of any in our family...until 2 days ago when he got a positive biopsy result. How's that for coincidence? So not only do I find out that I have cancer but that there is family history of it, both discovered on the same day. He, of course, tried to be comforting, telling me that a lot of men get prostate cancer and many die with it rather than from it. This is true, but it's still a lot to take in on a day that started like an average Tuesday.

So my urology appointment arrives and I wait to speak with the doctor. After being shocked at the timing of my family history she tells me everything I found on the Internet complete with Gleason charts, etc. So at least my research was accurate. But now the bigger question that the internet can't answer...what do we do? She explains the possible courses of action:

Active Surveillance. This means we don't do anything but we keep an eye on things. We'll continue to do PSA tests to watch for trends and periodic biopsies as needed (great). Now that I have a positive result, insurance will cover the MRI-assisted biopsy rather than the traditional method.
Surgery. This is what it sounds like, she cuts out my prostate. This will likely cure me but it's not without consequences with respect to functionality both on the urination as well as sexual side.
Radiation. This is one way to avoid surgery. The effectiveness isn't as good as surgery, but it's an option. In her experience, this is mostly for men who aren't good surgical candidates for a variety of reasons (age, obesity, or other medical conditions that could complicate surgery). The other thing about radiation if it doesn't work, you can't try it again. The body can only take so much.

She says it's ultimately my decision but, as of today, her recommendation is active surveillance. Taking into account my Gleason score as well as the fact that I'm relatively young she would prefer to watch it while keeping me as fully functional as possible for the longest period of time. She said some don't handle the news well and just want to cut it out for mental relief as much as anything else and if that was me, she would do that for me. I was a good candidate for surgery so she wouldn't recommend radiation. I agree that active surveillance is the way to go. She wants me to come back in six months for another PSA test.

This is all well and good, but the reality is still bouncing around in my head. Even though it's not a critical case, I still have to get used to the idea that I'm a cancer patient now. Having watched my mother fight cancer for decades including having her move in with us for her last 2 years definitely weighed on me. Of course, my case is very different, but it brought up old feelings. Then there's telling other family and close friends. But, to be honest, that helped me process it better. Within a few weeks it wasn't on my mind much. The only big difference in my life at this point is that I can no longer donate blood or platelets, which I've done for 20 years. I called and asked if it mattered that I wasn't actively treating it. It did. It's kind of silly when you think about it. If I hadn't known I had cancer, they would have gladly agreed to take my blood products. But just the fact that I know changed that. That bothered my engineer brain, but I understand it's more a matter of scale. Blood donation places like the Red Cross can't evaluate everyone's individual situation so they make blanket rules just to be functional and safe. I can respect that. Still, that was an big part of my life which, at a minimum, will have to be put on hold. At worst it's over and I will never donate again. I take solace in the fact that I gave as much as could while I could with the idea that this day may come. Unfortunately, that day has come...at least for now.

It Was Great When It All Began

June 16, 2023

I have been blessed with a very healthy life. I've had no serious illnesses, never broke a bone, I've never even had a tooth cavity. From a health point of view, I was quite boring. Like most young men, I only went to see a doctor if there was a problem and they were always very minor. But as I started my 50s, I decided that I should be more proactive and get regular physical check-ups.

The first checkup I did at 50 was very typical, no real surprises as I was generally healthy. To welcome me to my 50s, I got to experience the digital rectal exam to check my prostate. While not pleasant, it was no big deal and there was nothing notable about me in that test and everything was good. When my blood work came back, it was very normal but one value was flagged: PSA. PSA stands for Prostate Specific Antigen and it's used to measure inflammation in the area in and around the prostate. Inflammation doesn't necessarily mean cancer as there are several conditions that can cause that, but it is an indication that something could be wrong. From talking with my doctor and, subsequently, with other men my age I learned that the threshold for “high” is a value between 3 and 4. This variation can be a simple matter of opinion but age can be a factor as well. An man in his 70s with a PSA between 3 and 4 is less of a problem that a younger man. There is some interpretation involved. My first test came back at 3.15.

My doctor said this result was not too serious, but that I should get re-tested in six months. Fast forward six months, I take another test: 3.54. That, of course, is trending in the wrong direction. While my doctor wasn't particularly worried, he did refer me to a urologist just to be cautious. Keep in mind, this was 2021 and the US health system was still under strain from COVID so it took about 3 months to get the urology appointment as a 50 year old guy with a slightly elevated PSA is not an urgent case.

NB: The rest of this post will contain blunt descriptions of medical procedures because I think it's important for men to understand what it's like from a patient's point of view. If you are bothered by this, you've been warned

So I see the urologist and she is cautious, but not worried. Her biggest concern was my age (I'm now 51). Were I 70, a PSA between 3 and 4 would be not interesting, but at my age, she'd like to stay on the side of caution and get a biopsy. There are 2 main methods of prostate biopsies. There is the traditional/standard biopsy where a probe is inserted through the anus. The patient is awake during this procedure however local anesthesia is used to help with the pain. The other method is to get an MRI first to look for areas of concern, then insert a needle through the perineum, which is the area between the testicles and the anus. This gives a more focused test while the standard biopsy is more of a representative sample of the entire prostate. She would prefer the the MRI-assisted method, however she doubts my insurance will want to cover it at this point. All I really have is an elevated PSA and it's not even that high. So we opt for the traditional biopsy.

If the traditional biopsy sound uncomfortable ... that's because it is. Yes, I had local anesthesia but the pressure is immense. I never saw the size of the probe she shoved up my ass, but it felt large. Then there's the actual gathering of the samples which sounds and feel like a staple gun going off inside of you. I laid there on my side, gritting my teeth and counting off the needle strikes...there were 13 of them. Then it's over. I have no idea how long it took, but like the probe itself, it likely felt longer than it was. Then it was off to the bathroom to cleanup. And the amount of blood was, let's just say, disconcerting. She tells me not to worry about that. Her only concern is an infection and that if I see signs of that like a fever, to go the hospital immediately. To prevent this, I was on an antibiotic starting the day before the procedure and through the day after. In addition they have me a shot of another antibiotic right before the procedure started. The odds of infection are low, but it can be serious. Thankfully, that wasn't a problem in my case.

Recovery wasn't that bad. There are some lingering effects like blood in the stool, urine and semen. The first two cleared up pretty quickly. The bloody semen took about a month to totally clear up. It was gross, but not painful. Apparently, it's not a great idea to poke holes in your prostate..who knew? I had a follow-up appointment to go over the results a couple of weeks after the procedure. Like a lot of medical systems, test results are posted online as they are completed and patients like me can usually see them before the doctor does. So I got an email alert that my results were done so, of course I had to look.

So I find the test results figuring that this was just to eliminate cancer as a cause. My PSA wasn't that high, I had no symptoms and, like I said above, I've never even had a cavity. So I start reading the results:

A. Prostate, right apex "A", needle core  biopsy: 
 
Benign prostate tissue, negative for malignancy.

Right, so far so good. Next sample:

B. Prostate, right apex "B", needle core biopsy:
 
Small focus of prostatic acinar adenocarcinoma, Gleason score/pattern 3 + 3 = 6 (grade group 1).
Carcinoma involves approximately 5% of the specimen.
One of one core is involved.
Chronic inflammation.

Well, shit! I'm no medical expert but I know what “carcinoma” means. I guess this follow-up visit won't be boring.