I saw my oncologist almost a week ago. She was surprised I was still so immobile and said she’d hoped I would be much improved by that point. Me too.
There are lots of things I like about her, for one she hears what you say and she acts on it. Based on what I told her she thinks I might have an abscess / cyst near the paraaortic lymph nodes that were recently irradiated. There was a lot going on and I cannot remember if she said abscess or cyst and, in any case, I don’t know if they’re different or one and the same thing.
Two of my long term meds can give me hot sweaty flushes (the hormone therapy ones, Bicalutamide and Zoladex) but the pattern of sweats I described to her made her think I might have an abscess / cyst. She could do a scan to check but it’ll be a further month before the swelling inside, caused by the recent radiotherapy, goes down enough for the scan to give an accurate image.
For now I’m to take my temperature every time I have a hot sweaty flush and, if it goes up to 38°c, I have to let her know. If I don’t have a temperature spike I’ll be seeing her again in 3 weeks from now.
Between now and then I’m to slowly wean myself off the Amitryptiline that I was prescribed for neuropathic pain but, instead, I’ve started on two others. One is Dexamethasone, a steroid, which she said should kick in within 48 hours of first taking them and they should liven me up and increase my appetite. Well, they’ve livened me up in that when I feel like I really need to sleep I can’t, but not much effect yet on the appetite.
The second new med I’ve started is Citalopram. It’s an antidepressant. Remarkably, in spite of everything, I don’t actually feel depressed and I told the oncologist so. She explained I might not feel it but after 5 years of everything I’ve had happen there’s likely to be a chemical imbalance in my brain that could be having a detrimental effect whether I’m aware of it or not. The Citalopram should help to correct that.
I had a long appointment with my oncologist, that’s another thing I like about her – when she knows there’s a lot going on and I need to talk she gives me the time. That makes so much difference. At this point I want to emphasise that there are lots of ifs and buts and maybes when you have cancer. Definites are a scarce commodity, especially so at the point I’m at. The reason I want to emphasise that is because of other things we discussed that I wasn’t sure whether to mention because they may or may not happen and it’s all taken me this long to get my head round it enough to write it down, but one of the reasons I write this blog is to “tell it how it is” and another is to dispel the myth that prostate cancer is “the one to get”, so I can hardly leave this part out, so here goes.
My oncologist again said that my cancer was behaving very aggressively despite my “stats”, especially my Gleason score which is 4+3, that say my cancer should not be as aggressive as it is. When she next sees me, or soon after, she might start me on a drug called Abiraterone, which is a type of hormone therapy for advanced metastatic prostate cancer that has stopped responding to other types of hormone therapy. It’s not a cure, but it can help keep my cancer under control and could help me live longer. Even if it doesn’t keep me alive longer it might help relieve the pain and tiredness I’m feeling.
There’s no saying it will work nor how long it will work for. One certainty is that it won’t work forever because the bloody cancer learns to adapt. That’s one of the reasons for holding off starting because the sooner I start it the sooner it stops working.
My partner comes to every appointment with me and my oncologist fully involves him, that’s another thing I like about her. I’d warned him I was going to ask the “what’s my prognosis now?” question so he could make a swift exit if he wanted and thankfully he stayed. I knew he would but I wanted to warn him this time.
I also like my oncologist’s truthfulness – she knows I want the real answers not the comforting ones, and she told me that if I have a good response to the Abiraterone then I could have a few years, not lots, but a few. However, if I don’t have a good response then it could be as little as 1 year from now. Like I said, there are no definites!
Maybe if that had been a definite I’d have processed it sooner, but it’s still dangling there in mid-air waiting to be fully taken in. We’re still both a bit numb but writing this is helping me make sense of things and to put them in some kind of perspective.
Too many people still think prostate cancer isn’t so bad, but unless you’ve been checked out at least once a year from age 45 onwards (even earlier for black guys) you could end up in the same position as me and, take my word for it, prostate cancer is a nasty bastard best found and treated early on. Getting an annual blood test won’t stop you from getting it but it could make the difference between early cure or early dying.