When an Oncology RN Becomes The Patient
It’s a bit hard to hide information in this story that could be used to identify me but please do respect that this story is very personal.
Rising PSA & biopsy fear
I’d been living for a number of years with the knowledge that my PSA was elevated and on a slow upward trend. I had a history of 2 negative prostate biopsies both of which were probably more painful than need be and thus left me with some pretty negative feelings about going through the process a third time. In any case, the most recent PSA put me in the range where I had a 50% - 60% chance of a positive biopsy and I figured it was time go for #3 in January of 2020 when I got back to my hometown after cruising in our home/boat to Mexico. The only good news was I had a new urologist and her technique was outstanding, leading to a much less painful procedure.
Bacterial infection during recovery
There is a dark belief among healthcare providers that if anything can go wrong medically it will go wrong for us. I carry the double hex of being an RN and having worked in risk management for many years. Sure enough on recovery day #2 I ended up hospitalized as my personal crop of gut E.coli was totally resistant to the antibiotics I had been given (and it turns out to a whole lot of other antibiotics as well). My own theory is that 40 years of working around very ill patients and handling antibiotics had caught up with me. The biopsy had pushed the bacteria directly from the gut where they belonged into my bloodstream and prostate gland where they definitely were not welcome. Whatever the reason my entry into the year of COVID, divisional politics, record-breaking wildfires, AND my cancer diagnosis started out with a bang.
Once everyone agreed that I should be free of the E.coli infection (a prostate infection turns out to be very resistant to treatment so I was on home IV antibiotics for a full month) I started the process of deciding what to do about a few cancerous cells that had shown up in the biopsy material.
Treatment options
Option #1
Watchful waiting which was likely to lead to another biopsy in the future and I had had enough of that rigmarole thank you. I am also young enough that I am likely to live up to 30 more years so option #1 was set aside.
Option #2
Surgery which my wife and I ruled out as I might still have resistant bacteria in the prostate and the incidence of incontinence and impotence was disturbing.
Option #3
Radiation therapy with pre-radiation hormonal manipulation which was the route we opted for.
Option #4
Ignore the whole thing. I add this because it is a real option that is not often discussed but it is commonly done. My personal reason for not ignoring the diagnosis was that early in my career I cared for a lot of men with bone metastases from prostate cancer. I have treated a lot of painful conditions in my work but few things compete with bone Mets for sheer unrelenting pain. In other words, I have been up close and personal with the worst of the worst when delay and denial are the treatments of choice.
Hormone reduction therapy
So on with the hormone reduction therapy (you can thank my dad by the way for being an early test case for the use of Lupron in prostate cancer therapy) and then a month of radiation. It all went as well as could be expected with actually minimal side effects (remember, if there is a bad side effect I have cared for someone with it so I know what bad side effects look like!).
Survivor... or not?
Now I’m a “survivor”, I really hate that term and I’m not even sure why. Maybe it’s because it suggests that I “fought the big fight” but in reality, I only had a few cells and the science says they should all belong deceased by now. Maybe it’s because it suggests that I’m not really done and I really really want to be done.
So how am I doing now? In a sense much worse than before the diagnosis since I never felt any symptoms from the cancer (OK it is nice to sleep through the night without having to get up to pee and not having to work to start a stream in the morning but there are much easier ways to deal with benign prostate enlargement than zapping the sucker with a radiation beam!)
Side effects
During the treatment phase, my worse side effect of the hormone reduction therapy was generalized aches and pains. Being a healthcare professional with oncology care in my background I get why the medical team neglected to even mention THAT side effect as it is not one of the “biggys” that lots of patients avoid treatment for the fear of (eg hair loss) or kills patients (eg bone marrow suppression) but since I have a long history of enduring a lot of aches and pains (ask your nurse friends about the incidence of back injuries in our line of work sometime) the added pains were a personal challenge to me.
The side effect that my wife and I tried to ignore was the impotence and total lack of libido (I joke about how I can now walk into a room full of sexy women and know how my gay friends feel – wow beauty all around and zip, nada physiological response). We expected that once the hormone reduction therapy wore off that our active sex life (very happily married for 44 years) would likely be reduced but would recover. I also looked forward to having my minor league hot flashes go away.
Compounding grief
I am now about 3 months out from therapy. 2020 started out with a bang for me and now we had COVID isolation (which includes isolation from family living out of country, isolation from our cruising boater community, and isolation from our spiritual/church families), political isolation, and having to avoid outdoor activities I enjoy between the lingering effects of E.coli bacteremia and smoke from forest fires. I honestly can’t tell if I am 99% impotent because of treatment side effects and/or mild depression from all of the above and/or old fashioned performance anxiety.
Hindsight
Would I go through it all again knowing in January what I know now? Probably – ask me again in a few more months.
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