This is the most common question I get, and I get it - everyone is worried they may secretly have cancer growing in them and won’t find out until it’s too late, so are there any warning signs or anything you can do? I asked my doctor the same thing when I was 35, and he basically said “if you don’t have a family history, there’s nothing we can really check!”. I’ve since found out this is kind of untrue, it’s more like “insurance won’t pay for a bunch of checks without justification, and also checks have false positives so it’s a numbers game of risk vs reward for potentially getting you worked up over nothing”.
So for me at least, first I’ll talk about my original cancer. Around 2019 I started occasionally ejaculating blood, which was an obviously very concerning situation. I went to a urologist (Doctor 1) and I had no elevation in PSA levels (prostate cancer marker), and no swelling of prostate etc… He suggested i see if it persists and come back in 3-6 months. It did, and I did go back and he thought it might just be some sort of cyst or blood vessel thing but ordered an MRI just in case because he was still concerned (Doctor 1 was awesome). The MRI showed a tumor, and he referred me to an urologist oncologist (Doctor 2).
Doctor 2 got me a biopsy (prostate biopsy one of the worst possible things I’ve experienced, I’d describe it as getting sodomized with a knife) and it confirmed basal cell carcinoma of the prostate. If you’re semi-familiar with cancer you may hear basal cell and think “wait isn’t that skin cancer?” and you’re right! There’s a small amount of skin cells in the prostate and I guess that’s where mine started. Due to the rareness of this, the UPMC tumor board suggested a prostectamy which sounded fine to me - I wanted this stuff out of me ASAP before it spread. What I didn’t know at the time and have heard since is that sometimes when a large tumor is removed it removes the controls that tumor is keeping on check for other ones in the body (also if you are considering a prostectamy there are some pretty serious side effects I’m happy to review with you, I did end up questioning this decision in the intervening years).
Anyway after the surgery and recovery, I asked Doctor 2 how what’s next and he said “well you have no prostate and your margins are clean so there should be no more cancer. I’m a surgeon and you don’t need any more surgery so go see your original Urologist (Doctor 1) about the recovery from surgery and I’m out.
Now here I think there is a serious issue - I should have had periodic scans, and I asked for this but a) My urologist (Doctor 1) moved out of town and my PCPs (Doctors 3/4) are clueless about this type of stuff, so they just kept proscribing PSA tests (which were never elevated for me). I always meant to try to follow up more aggressively with Doctor 2 on getting scanned, but time moves on quickly… but in my opinion he really should have came up with a regular scan plan.
So this summer I turned 45 and my PCP suggested a colonoscopy. Given my previous cancer experience I said hell yeah - and I encourage you do to the same, WHY WOULDN’T YOU WANT A CHECK OF YOUR SYSTEMS? The colonoscopy showed no colon cancer but the excellent doctor (Doctor 5) noticed nodules in the prostate bed and wrote a letter to my original surgeon (Doctor 2) about his concern, and suggested I set a follow up appointment.
I tried to setup an appointment with Doctor 2, but the earliest i could get was 3 months out - no worries, he got the letter, if he thought it were more serious he’d move me up right? Well not only did he not move it up or acknowledge it, but a week before my appointment his secretary was like “actually he can’t do that day can you do a month from now?” and I was like “hell no, i scheduled this 3 months ago” so she fit me in with a PA in a week. The PA confirmed something didn’t feel right in my prostate area, sent me to an oncologist familiar with basal cell, and that oncologist sent me for a PET scan which showed the negative results where I am today.
Now in hindsight I actually had quite a few warnings which i did seek medical attention for but no one connects the dots - I had pain in my spine and ribs (which i went to the doctor for), I had weird vision changes (which i also went to the doctor for, she said i just didn’t know how to wear bi-focals…). If I were to do it again, I would probably pay for private PET scans (~$10-15k a pop) outside of insurance every 5-10 years for peace of mind (this is not medical advice - keep in mind CT scans which are used in PET scans also cause cancer… ). And obviously stay on top of all of your possible checkups - people have a somewhat justified fear of prostate and colon exams, but neither is really a big deal in my experience, and the brief amount of discomfort is worth the long-term peace of mind.