The ifs and buts and maybes of cancer

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.

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Cancer is a pain in the arse (and everywhere else)

My PET Scan was done 11 days ago and today I was told the results.

The cancer has now spread into my bones (it was already in my lymph nodes) and I’ve got several bone lesions, mostly small, scattered around in different places – my left shoulder, the right side of my hip and my pelvis and my left ischium or, as I would call it, the bone behind my left arse cheek.

The one that is causing the excruciating pain is not a bone lesion, as such, but a lymph node that has swollen to around 3cm (1¼”) with the cancer, which is roughly the size of an egg, that’s located near the base of my spine and is pushing into the spine and has eroded the bone where it’s pushing. My oncologist said she’s never seen prostate cancer do that so she wants to do a biopsy to see if it’s a different kind of cancer altogether or, if it is prostate cancer, to see if the cell structure of the cancer has changed.

For now I’m adding in Zoladex to the Bicalutamide that I’m already on. Zoladex is a type of hormone therapy in the form of an injection (the one I’ll have is the 3-monthly injection). Bicalutamide is also a type of hormone therapy but it’s a 150mg daily pill and I’ve been on those for just under 4 years.

Whatever type of cancer the egg size tumour turns out to be the plan is to zap it with radiation to shrink it and hopefully reduce my pain. If the biopsy shows it is prostate cancer the plan then, after zapping it, is to take me off the Bicalutamide and to add in Abiraterone. That’s a fancy new type of hormone therapy for advanced prostate cancer that has spread to other parts of the body and has stopped responding to other types of hormone therapy.

In the meantime my morphine dose has been increased, which is just as well because after seeing my oncologist I had to take my prescription to the hospital pharmacy located about 100 miles away (that’s how it felt). Normally it would have taken about 10 minutes to walk it. It took us longer and I was almost crying with the pain. A porter wheeled me back to where we had the car parked in a wheelchair.

Obviously none of this is good news but I knew it would happen eventually so I’m not in shock. I knew it was just a matter of when. What is good is that my oncologist is on the ball and has a plan. I know the bloody cancer will be the death of me, literally, but to have an oncologist like mine who is a genius and does her very best for you is a great encouragement.

Getting run over by a bus

Déjà vu. I’m knackered – apologies to regular readers who must be bored stiff reading how tired I am but imagine how bloody debilitating and restricting the fatigue is, especially when in your head you’re still 18 and there’s so much you want to do but your body says “no way José”. Luckily I still have days, and sometimes even whole weeks, when I can do the stuff I want to do before the fatigue (and all that goes with it) kicks back in.

In addition to the fatigue there are also a few other things going on that are a nuisance, not least my scrotal hydroceles. Just a year ago I wouldn’t have known what they were but, as I’ve mentioned in previous posts, cancer is like a course where you’re always learning something new and given the choice I’d rather go on learning new stuff than graduate because the awards ceremony gets a tad hot and I won’t get to go to the party afterwards.

In everyday (polite) language, scrotal hydroceles translates to swollen balls. Mine vary in size from day to day and, depending on who you speak to, they’re either something that might have happened anyway or they’re caused by one or more of the treatments I’ve had, although opinions vary on exactly which as it could have been any of them. On its own the discomfort, skin irritation and occasional pain from the swollen scrote would be bearable but, add them to the man-boobs, the flabby midriff, the loss of body hair, the gritty eyes, the occasional hot flush, unpredictable waterworks and dodgy bowels, not to mention the numbness and pain in my left leg that is causing me to limp, for some reason the big balls are a side effect too far and are really pissing me off.

What really should be pissing me off though, is that my PSA has risen from its post-chemo lowest ever level of 0.044 just six months ago to 0.176 now. It’s still very low but is obviously going in the wrong direction and at a quickening pace so, sometime in the not too distant future I’ll be going on to more treatment, which my oncologist (who I saw today) says is likely to be Abiraterone with prednisolone or, possibly, Enzalutamide. I asked her if my prognosis had changed as a result of the chemo but it looks like it hasn’t. On the bright side at least it’s no worse.

Before starting chemo I read that it could slow the cancer down by between 10 and 22 months and it’s done that, but I optimistically assumed I’d be towards the top end of the bracket. My cancer, though, had other ideas and went for the bottom end, thereby living up to its reputation of being very badly behaved or, as I prefer to call it, a right bastard. I seem to want to swear a lot more lately.

With everything that’s been happening I’ve been having lots of soul-searching moments where I ask myself if I would choose the same treatments again and, when I’m thinking rationally, I have no doubt I would because without them I’d probably be either very ill now or very dead so, for me, it’s a no brainer. When I’m thinking less rationally though, which is usually when I’m feeling down, I think the opposite but, really, the only treatment I wish I hadn’t had was surgery, not because having your prostate removed is never a good idea (for many men it is) but because if it had been known beforehand how far my cancer had already spread then I doubt surgery would have been offered to me. I made the best decision I could have at the time but if there’s a moral there it’s the one that says you should never believe scans are foolproof.

My soul searching moments inevitably end up with me wondering how long I’ve got left, which I really don’t like at all because I start counting Christmases and, based on my unchanged prognosis, it comes to a grand total of 4 or 5. Nevertheless I remain determined to prove my doctor wrong! I reckon she’d like it if I did.

Others tell me that we’re all going to die and that any one of us could get run over by a bus, which is true, but no help at all. Take my word for it, the prospect of getting run over by that proverbial bus doesn’t hang over you in the same way. At least the bus might miss me but the bloody cancer won’t.