SABR

Yesterday I got my PSA result – up from 0.574 in July to 0.732 now, an increase of 0.158. That’s not a massive jump but it’s gone up a bit faster in the last 3 months than it did in the previous 3, when the increase was 0.082.

Today I saw my oncologist and wondered if, because I’ve had a series of small increases instead of one major jump, that she’d just carry on with what we’re already doing, i.e. a daily 150mg Bicalutamide tablet and regular 3 monthly check ups.

It’s not that I want my PSA to suddenly soar but without a big jump there’s always the possibility that nothing new will be done, since the rate of PSA increase is just as relevant as the increase itself. I should have remembered that “inaction” is not in my oncologist’s vocabulary.

I had a Choline PET Scan at the start of 2015 and she’s referred me for another one to see where the cancer has spread to now. Being referred for a PET Scan is partly down to my series of small but steady PSA increases but also due to some enlarged lymph nodes that the MRI I had a couple of months ago revealed. Those should have measured around 10mm in diameter but mine varied between 15mm and 17mm. I forgot to ask if 50% to 70% more than normal is massive or no big deal.

Assuming the enlarged nodes are cancerous (I guess they might not be), the best result the latest PET Scan could give is that they are the only ones that are but, if that’s the case, they also need to be located just above the areas I had irradiated back in 2015 and 2016, my prostate bed and my pelvic lymph nodes. They could then be suitable for some targeted zapping by something called SABR, which is a type of radiotherapy. SABR is not widely available and, like everything else right now, there are “challenges” with funding, but my oncologist is hopeful.

The second best result requires the cancerous nodes still to be the only ones, but higher up, because then I might be ok to have regular palliative radiotherapy on them. Not quite as targeted as SABR but not a bad option.

Neither would be a cure but both could give me more time without mucking up my quality of life and having more time is important in lots of ways, not least because it leaves open the possibility that I’ll still be around when a cure is found.

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What if ….?

I’m going for my regular PSA test today and, it turns out, quite a few other blood tests, too.

I have my oncologist appointment in 2 days time and I deliberately left the bloods until the last minute thinking it was just PSA. PSA results don’t take long to come back whereas the other bloods do, so I’m not sure they’ll all be ready in time. So you see, it’s all very well trying to put cancer out of your mind, which as anybody in the same position knows is impossible anyway, but when you try that and don’t look at the form until the day before you just cause yourself a different set of worries. Too late now.

Mind you, not looking at the form and just getting on with life does help cut down on the usual “what if?” kind of worrying. That didn’t start to come to the fore until about a week ago, which is an improvement. What if the PSA shoots up? What if the aches and pains aren’t just me getting older? What if this bloated feeling is a bloody great tumour? That sort of thing.

I know worrying does no good, I tell others that, but that’s exactly what I do unless I find things to keep myself busy and keep the deep thinking to a minimum. This time round I’ve had loads to keep me busy and take my mind off things, with the weather being very helpful in that respect. Until a couple of days ago you could be forgiven for thinking it was still August such was the sun and warmth. In fact, the last couple of months have felt like we’re on holiday all the time.

Of course, there’s no escaping the inevitable and this week it’s back to reality starting with the weather, which has finally realised it’s really mid-October and has now turned cold, wet and miserable. Next time I write I’ll have the latest PSA result. Fingers crossed that remains sunny.

It’s good to talk

Studies show that people with cancer who go to support groups have better outcomes. I hope it’s true because I want to live for as long as I can with the least treatment side effects, but it’s not something I actively think of when I go. For me there are many reasons, like the camaraderie, that feeling of “we’re all in this together” with people who just get what you’re going through without you having to explain.

Another reason I continue to go almost 5 years after being diagnosed is that I’ve found support groups provide a very effective channel for sharing practical information, the day to day stuff that you find out as you go along that doctors might have heard about but never mention because they don’t realise how much little tips can make a big difference. Why would they? After all, how many of us really appreciated what having cancer meant before we got it ourselves?

So when I heard about a chance to be interviewed in front of an audience of doctors to help them get a better understanding of what having chemo for prostate cancer can mean for the man on the receiving end I jumped at it and yesterday I was picked up from home in a posh limo and whisked off to the premises of a major international pharmaceutical company where the interview took place, and very nice premises they were too!

The interview was very informal and although the focus was on the chemo part of my prostate cancer experience I was also encouraged to talk about every other aspect of my prostate cancer, which as anyone who knows me will tell you, I actually need no encouragement to do.

On the face of it talking about yourself might sound a bit self-indulgent. I’ve certainly had the odd disapproving comment over the last few years from some who think that such matters should not be spoken of in polite company, but my view on it is that nothing was ever learned and things never changed by keeping quiet about them. I’m still alive today because of lots of people who went before me, not just those who trialled new and experimental treatments in the past that I’m benefiting from right now but also those who just spoke up and were open about their cancer and what it does to you so, whenever I get the chance, I’ll talk to anyone about it who wants to listen. Luckily the 30 or 40 people who were in the room for my interview did want to listen. I was just one part of what was a full day for them and, considering their day turned out even fuller than planned after an unexpected hour standing in the car park after the fire alarm went off, they were a remarkably welcoming and receptive bunch.

Although it’s impossible to cover over 6 years of your life in an hour I can safely say I had a pretty good try at telling them and enjoyed every minute, which was helped by the interviewer, a qualified doctor who knew her stuff and was adept at putting people at ease.

Doctors are just one part of the information equation, they meet a lot of us who have cancer but usually they haven’t had it themselves so they haven’t had any of the treatments either. They’ve read a lot of books but books cannot convey what living with cancer means on an everyday, emotional, practical level as well as a real human being can when relating his or her own personal experience. By the end of my hour of talking I felt as though I’d made a difference, I certainly hope I did, and it’s something I’d like to do again. But mine is just one story amongst many and the more stories that groups of doctors hear the better so, if ever you get a chance to share how it was for you, please don’t hold back because it really is good to talk and, best of all, we all benefit.

PSA, Pride and Positivity

Up to January of this year my PSA had doubled roughly every three months over the previous 12 months. My oncologist warned me that by April she expected it to be back into whole numbers and I’d probably be having more scans and I’d better get ready for some more treatment.

April came and my PSA refused to play ball and had hardly gone up at all. So small was the increase in fact that I thought there’d been a mistake. Well, it looks like there’s been another one because my latest result is up by just a small amount once again, up to 0.574 from 0.492 three months ago, a difference of just 0.082 for those who, like me, are mathematically challenged. The latest level is more or less where it was at when I started chemo two years ago so it looks like that particular treatment did me a bit better than we’d expected.

I know this can’t last but every delay to the inevitable is very welcome, especially so right now because, despite the constant fatigue and the pain I have when walking, I’m having quite a nice time with lots of good, positive stuff going on in my life that is overshadowing the cancer (and certain world events that I’m trying to blot out). It makes all the treatments, not just the chemo, even more worth it.

I am seeing my oncologist next week. Maybe I’ll be told to carry on as I am, which would suit me or, bearing in mind what I was told last time that without a prostate I really shouldn’t have any PSA at all and that even a small increase should not be viewed lightly, I suppose there’s always a chance I’ll be sent for a scan.

In the meantime I’m accentuating the positive and England beating Sweden tomorrow in Russia would really help. Whatever happens in that match though, we’re in the second or third week of a heatwave here in the UK and tomorrow is Pride in London. It’s going to be a scorcher and despite no longer being able to go on the march I can still soak up all those positive vibes. I might even manage to soak up a drink or two.

Lull before the storm?

There’s not a lot to talk to a doctor about when your already low PSA hardly moves and the latest appointment with my oncologist reflected that, turning out to be pretty much a non-event, apart from the fact that I didn’t see my usual oncologist this time.

The appointment didn’t last long. Most of it was taken up talking about the treatment side effects that I have rather than my PSA (which now stands at 0.492) or starting any new treatments, but the doc did chuck in a hint of how things might progress with an almost throwaway remark: “this is as good as it’s going to get”. Thanks doc. I sort of knew that I must be enjoying a lull before the expected storm but I guess it doesn’t hurt to be reminded that with everything I’ve had done I really shouldn’t have any PSA and that even a small increase should not be viewed lightly and that it should not be going up at all.

My next blood test and oncologist appointment are in 3 months’ time. Hopefully my next PSA result will show the cancer is having an extended break and I can again delay moving on to the next treatment. Imagine being able to say “I’m in remission“, that’d be nice. I’d be quite happy for that to be the case and long may it last if it is!

Gobsmacked

I’ve got some good news, and I’ve got some bad news.

The bad news is that my PSA has, as expected, gone up. The good news is that it’s gone up by a “mere” 0.075, nowhere near as much as either I or my oncologist expected.

What does this signify? I have no idea as, based on the previous rates of increase, I was geared up for at least a doubling of the previous PSA result of 0.417 three months ago and find myself pleasantly gobsmacked, if a trifle incredulous.

Assuming there hasn’t been an error (I told you I was incredulous) then it looks like my next treatment might be put off as I’m hopeful that the small increase doesn’t call for anything extra yet. I’ll find out when I see my oncologist next week but, for now, I carry on doing whatever it is I have been doing because I must be doing something right. I just wish I knew what that was.

Wrongly routed

The sheer terror that I felt on being told I had cancer is not buried as deeply as I’d thought. It came right to the fore a few days ago when a really close friend of mine who I worked with up to 4 years ago was also diagnosed with prostate cancer.

Those of us with this disease all have our own personal story but, if there’s one thing we all have in common, it’s that a prostate cancer diagnosis changes your life in ways you would never have imagined and that’s just how it is for him and his wife. In the space of just a few weeks their world has been turned upside down and they both now have decisions to make that no one ever prepares you for.

People usually rally round at times like these and he’s been truly overwhelmed by the support he’s got. I think he feels like he doesn’t deserve it but considering the support he’s consistently given to others I’m not surprised at the reaction of the people who know him. No one deserves to get this disease but it strikes me as being particularly undeserved when it happens to someone like him who has always tried to help others and has gone not just the extra mile but several extra miles including raising money for both Prostate Cancer UK and Macmillan Cancer Support.

From what he’s been told so far his cancer looks to be both even more aggressive and more advanced than mine. Lots of men who get prostate cancer get the “pussycat” version, the sort that lays on your lap and gently purrs for years and years or possibly gives you the occasional scratch to let you know it’s there, and that could be why the myth prevails that prostate cancer is nothing to worry about. But a myth is exactly what it is because there are others, guys like us, who don’t get the pussycat, we get the “tiger” and some tigers can be more vicious than others.

Since what happened to me he’s been having regular PSA tests so, although his cancer has moved too fast to be curable it is, nevertheless, still treatable. Had he not had regular PSA tests his cancer could well have got to the stage where very little could be done but, instead, it looks like he will have several treatments available that can keep him around for a good while yet. I certainly hope so!

That’s why, as shocked as he’s feeling (as all of us who know him are feeling too!), he’s already thinking of others and encouraging the other men he knows to get a PSA test because although it gets a lot of bad press it’s the best indicator there is (currently) to ascertain whether or not you could have a problem with your prostate.

You don’t have to be in one of the higher risk groups to get prostate cancer – he wasn’t and neither was I (unless you count being in our mid-50s when we got sick). Whoever you are, don’t kid yourself that it can never happen to you. If you don’t get tested for yourself and your family, if you know him, get tested for Steve.

Click on this link for more info about the PSA test: Behind the headlines: Symptoms, screening and PSA – should I have a test?

Man up yourself!

From my male perspective women with cancer get loads of extra help and support when trying to adapt to the changes to their bodies and body image caused by cancer and its treatments. So they should, but men should too.

Ever since my first treatment it’s been a bugbear of mine that men with cancer going through the same sort of things as women are expected to just get on with it, with the implication that we’re somehow less of a man if we mention our painful sore skin or lament the loss of our hair. I was actually told to man up. It was meant as a joke but some jokes aren’t funny.

Fortunately it’s finally starting to be recognised that men with cancer need extra help with treatment side effects, too, to complement what we already get from our doctors and specialist nurses.

A charity called Look Good Feel Better has been trialling workshops and masterclasses especially designed for men whose cancer treatments have left us with scars, sore or painful skin, redness caused by hot flushes or burst capillaries, no eyebrows, thin hair, no hair or bald patches in our beards, to mention but a few.

On its website Look Good Feel Better currently states (but hopefully soon to be amended) “Our free confidence boosting skincare and make-up Workshops and Masterclasses are held across the UK for women undergoing treatment for any type of cancer”, so they’re not new at this, in fact they’ve been going for 24 years, but providing the Workshops and Masterclasses for men is new, and very welcome because, even if make-up is not your thing, having a penis doesn’t mean you don’t need a confidence boost when you’ve got cancer.

I recently went to one of the trial workshops myself, which was attended by nine men of assorted ages where we were looked after by the charity’s paid staff and some volunteers who’d given their time and skills for the day. Amongst them were two guys who were skin care experts who not only worked in the business when they weren’t volunteering but had also had cancer treatment themselves and it was obvious from the things they said that they understood what cancer treatments could do to men’s bodies and how it made you feel.

We were given a goody bag full of free samples (and very nice they are, too) but the workshops aren’t trying to flog you anything. They are just trying to help those of us whose skin, hair, appearance and general wellbeing have taken a massive knock from cancer treatments to recover a bit of our former selves and they do that by freely giving us the benefit of their professional knowledge. My preferred option would be a time machine to take me back 5 years to before my body was nuked but being told which products might make my hair grow back properly or could hide scars and stop my radiation and chemo damaged skin from drying out, itching and becoming painful is a close second.

If you’re a man with cancer, no matter what your age is, I’d recommend going to one of these workshops if you get offered the chance. There’s enough to contend with when you have cancer so why turn down something that could help? It’s a no brainer and if nothing else you meet other guys in the same boat as you, it’s a good laugh and you get to find out that eyebrow touch up pencils also come in grey and they can be used in your beard!!

Not that I need grey, of course.

My beautiful cancer

Ignore the title of this post, it’s not my beautiful cancer this time, but someone else’s.

I just watched the first two short videos made by another guy who’s currently on Docetaxel Chemotherapy for prostate cancer, the same type that I had. Like the old saying goes, a picture speaks a thousand words and these videos demonstrate that.

I found the videos interesting, informative and personal; they show one man’s journey through chemo (filmed by the man himself) that really resonated with me. I think they’re well worth watching for anyone who wonders what chemo might be like and each video lasts around 5 minutes each

Click here to see the videos

Cancer meds unavailable

I cannot get the cancer meds I’ve been prescribed. When I went to pick up my monthly prescription two days ago the pharmacist told me that he has been unable to get any Bicalutamide tablets for the last 3 weeks. When I tried again the following day he’d still not been able to source any.

I’ve been on Bicalutamide, which are hormone therapy tablets for prostate cancer, for almost 3 years and have to take a 150mg dose once a day, every day. They are helping to keep me alive and are something I need. I do not keep a hoard but get them as I need them, so I have no back up supply.

My cancer is the most common cancer amongst men in the UK with over 47,000 of us being diagnosed with it every year in this country alone and Bicalutamide is one of the main drug medications used to control it. I searched online and found the “shortage” started about a month ago, not just of the pills I have to take but of around 100 different drugs that treat prostate cancer, breast cancer and mental health conditions, so there must be thousands of us affected by this.

From what I’ve read (click here), the “shortage” looks like it’s been caused deliberately. The drug companies want more money but the UK Government or NHS England, or whoever it is that orders drugs for our NHS, says either there isn’t any more or they’re not prepared to pay the price. Meanwhile those of us who depend on our meds to keep us alive or functioning normally physically or mentally are stuck in the middle.

I don’t know the rights and wrongs, the why and the wherefore, I depend and rely on others to ensure our NHS is properly resourced, in this case with drugs, but it feels to me like someone high up isn’t doing their job properly. Whatever the reasons, it should never have got to the stage where patients are used as pawns and medicines become unavailable.

I saw my oncologist just last Wednesday before I knew of the “shortage” and, when I asked, was told I definitely cannot have a break from treatment (my cancer is not a well behaved one). Maybe the couple of days I’ve not had my meds so far won’t make a difference to me, I honestly don’t know, but I have no idea how long it will be before I can get the pills and this enforced break is causing me great stress and anxiety, which is exactly what I’m told i should be avoiding.

This should not be happening!