It is astonishing how quickly 3 weeks goes and here I am back in the purple chair. Despite the smile (and the Simon Le Bon roots), this time it is with some sadness as this was likely my last day on this trial.
Yesterday was a day of mixed results. The bone scans and MRI’s were good, normal wear and tear (felt like scraping through my bone MOT), but all clear from any potential tumours. Sigmoidoscopy all good too – so just a free enema and a bit more dignity lost. Sadly though the ultrasound confirmed what my instincts and prodding had suspected. This increase in secondary tumour size plus the lump on my mascetomy scar will almost certainly count as disease progression.
There are 3 main reasons you come of a trial 1) disease progression 2) unacceptability toxicity 3) patient says ‘enough’. When they told me back in my consenting appointment I said ‘or number 4 you cark it’. My lovely oncologist, who was not entirely used to my directness or sense of humour (then) rather dryly said – ‘that’s included in number 1’.
So the next couple of weeks are going to be a bit hairy. I will need more scans (PET-CT & CT). Oh goodie! They will then have a big old chat about what to do next. The decision tree looks something like this scrappy sketch I did (yes Mum, I know the hand writing is horrendous, but as I keep telling you I have other qualities):
So this is why today was tinged with a bit of sadness. If the scans prove ‘too much’ disease progression we will apply to be unblinded from the trial. If I am getting the immuno drug and the disease has still progressed then I guess it is back to chemo only. Although I’m hoping I will be able to have surgery and/or radiotherapy to my contralateral (‘other’ to you and me) side as there is something more physical and real about these treatments even if the cells are hiding from the scanners elsewhere.
If I am getting a bag of water every three weeks, I hope to still be able to try immunotherapy via another trial. I can feel the all nighters on clinical trial databases coming on again (see Magpie scientist) and visits to other hospitals.
Whilst all this is going on I plan to distract myself with some creative projects, a VAT Return (that will be factual), some consulting work and a good house sort out. I will also continue to catch up on all the half written posts and poems I have lurking in books from the early days of the last 16 months. Expect some flashbacks to those days whilst I wrestle mentally and physically with what the next couple of weeks mean.
I haven’t really felt like writing on here much the last few weeks. Although I have been tinkering around with the site (all a learning curve), a logo (more later) and social media.
Two main reasons for not writing.
Firstly, we’ve been enjoying the summer holidays and trying to forget about the joys of dealing with cancer. Pretty impossible. Secondly, my PET-CT scan revealed quite a few hot spots and since then I have been having various scans and procedures to understand what they might be.
These have ranged from a sigmoidoscopy to pelvis and spine MRI’s and ultrasounds. I also slotted that bone density scan in too – which was super efficient and straight forward and now my favourite scan above a CT. I’ve got another CT scan and a PET Scan to come later this month too.
We are awaiting results for all of these scans (bar the always polite, but pretty searching questions I ask the lovely people at the hospital when they scan me). Whilst these conversations can give hope (I opted for gas and air rather than sedation at the sigmoidoscopy, so was able to see a lovely clean (!) and clear bowel on the screen. I also asked lots of questions and made bad bowel jokes (I’ll spare you those) and laughed a lot (that stuff was great man!)), they (the conversations) can also be terrifying. I saw the ultrasound screen and the shape and size of the lymph nodes, it didn’t look great, nor did her face.
It’s a pretty weird situation we are in as my CT scan from the end of July (like the end of May) reads like a call for a party (and in fact we had one) ‘remains a complete response to treatment’; ‘Target lesions – resolved 0mm’; ‘non-target lesions: none’ – happy days whoo hoo! Except I have always been able to feel the lump under my arm and having got smaller it has recently been getting bigger. I tell everyone that examines or scans me this. I also draw attention to the growing lump on my mastectomy scar. I want both out with surgery. I dream about scalpel-ing them out myself (I kid you not). This surgery has been discussed. In order to help us decide between surgery or radiotherapy on this opposite side (or something else) – we had the PET-CT in the middle or August.
You know this if you are a regular reader.
Here in lies the issue, as the PET-CT tells a different story to the CT – with less requirement for a party (unless you count one where people tend to wear black). There are hot spots (‘possible carcinomas’ – yikes) in my bowel as well as hot areas in my pelvis, spine, lymph glands etc. There is the big lymph gland on my left plus 4-5 other small ones (this does not look good) and a rouge hot right side lymph gland on the site I had a full axillary node clearance (or at least 23 were removed). This has worried me no end as I’ve already had surgery and rads here so that makes me think more chemo will be my only options. But I’m not an oncologist.
You can see why I haven’t written for a while and have been trying to enjoy the summer.
Anyway tomorrow is a big day as I finally get a whole pile of scan results and possibly a treatment plan. I think a plan might be unlikely as they want to do another PET-CT scan to see if these hot spots have got worse or better 6 weeks later. I am still on the clinical trial so i/v immunotherapy also awaits my busy veins on Wednesday. Until the next CT Scan officially shows ‘disease progression’, we continue as we are. This is so tough as my gut says the cancer is very much on the move again and growing elsewhere.
I think we need something more radical. And fast. I hate waiting for action – it just isn’t who I am.
I hadn’t planned to write such a boring factual piece, (well done for staying this far, hope the comedy pant shot helped), but I feel a need to do it to keep you up to speed and give some context.
I have lots of half written material – poems and prose – which jumps back and forth and all around this journey, so don’t expect there to be a neat chronology. If you can bear with the combo of current situation and flash backs to previous experiences you might get a bit of any idea of what a jumble my brain is in somedays.
In the meantime, I’m sorting new school shoes and PE kits, CAMHs referrals plus a suspected fractured collarbone in one child (end of last week) and two missing front teeth (today, don’t ask) with the other. No time to feel sorry for myself, too much to do and deal with…
People say ‘I don’t know how you deal with advanced cancer and two young children’, I say ‘thank goodness for the distraction and the very real reasons to live another day’. We all need others and displacement activity (I’ve got a few posts of that soon too) to pull us out of, or stop us dropping back into our dark places. How do you stay out of yours?
The next three days are a bit full on as we try to get more information to make a decision on treatment options beyond immunotherapy. I have several scans, bloods, oncologist appointments to review my final cycle of chemo, scan results and immunotherapy (or placebo) treatment.
Today I’m having a PET-CT scan. Although it is one of the most informative and caught my secondary tumour early, this is my least favourite scan experience. Out of all the treatment and investigations I have had this is always one of the loneliest with way too much time to think.
Firstly, let me tell you (as best I can) what a PET is and then what it is like. It stands for Positron Emission Tomography and it is medical imaging technique that uses a radioactive isotope (Oh Joy, and this is my 4th in just over a year) attached to a biological molecule (often glucose labelled with radioactive fluorine). This is called FDG for short because the chemical name is very long and I have forgotten it. This lovely cocktail is used to produce a 3D map of functional processes in the body.
You have to fast for 6+ hours for it, so the cells using glucose use the FDG not other stuff you have eaten. I nearly screwed this up today as I ate a fruit pastel in my mum’s car on the way to the station, fortunately I realised (only after sucking the sugar off) and spat it out the window (class). The kids thought this was hilarious, not sure my Mum was that impressed with my manners or my forgetfulness. Anyway, I breathed a sigh of relief when my blood sugar levels were 4.8% and in the normal range they’d expect for someone who hadn’t eaten since before 7am. I had visions of this ridiculously small amount of sugar being fast tracked to any remaining pesky cancer cells and ruining the scan. Think I was a bit neurotic this morning.
It takes about 60-90 mins for the cells in the body to uptake the FDG. The clever scanning machine then detects radiation emitted by the fluorine isotope and produces a map to reflect glucose use in the body. With me so far? In a nutshell, the more glucose used the more an area shows up ‘hot’. Cancer cells are rapidly dividing cells so tend to be hot spots. Other areas of high glucose activity are the heart and areas of historic or recent trauma (surgery sites, radiotherapy damage etc).
We are looking for rogue cancer cells in other parts of my body as well as a detailed look at what is going on in and around the lymph nodes in my axilla (armpit to you and I) as this is the site of my secondary tumour. Chemo is a systemic treatment so it should have reached parts other treatments cannot (to coin a phrase). That said triple negative cancer cells are pesky, aggressive, unpredictable little so and so’s and have a habit of popping up when and where you least expect them. They can also develop resistance to chemo. I am hoping we can get this PET-CT result in tomorrow’s appointment as I’m keen to know what we might do next to out fox this disease.
The clever radiographers combine a CT (structure and anatomy) with the PET (info about how the tissues function metabolically). The pic below sort of explains this.
It is a bit like google maps combining the map view with a satellite or street view.
So whilst PET-CT is kind of the best at spotting cancer cells on the move or hiding in new places, its not my favourite scan to have. That got me thinking (3 hours on your own not moving does this) about my top 5 scans! So here they are for a bit of informative fun.
CT scan – quick efficient and contrast dye can go through my port
MRI scan – noisy and long, but if you do yoga breathing it’s ok. Contrast dye can also go through port.
Bone scan – radioactive injection through cannula can be tricky and the 3hr wait for it to do its job can be a pain if you don’t plan for it (I normally meet someone for lunch!!). But the scan itself very close to your body, but it is quick and you don’t have to keep away from people. Everyone is in the room with you so you don’t feel isolated.
Ultra sound – this is pretty easy and painless, but it comes in at number 4 as I question its accuracy in measuring invasive cancers. I’ve had a tumour that has supposedly shrunk by 50 and 40%. This gave my oncologist, surgeon and family false hope. Instead of removing a 24mm tumour the reality was 96 mm of live cancer and no clear margins (so probably more still there). I don’t trust ultra sounds much!
PET-CT – the lonely scan or the leper scan. As soon as they give you the radioactive tracer injection (which can take ages due to cannula issues) the clock is ticking. They take you to a small room where you have to sit completely still for 60-90 mins. You then have another 30 mins in the scanner and have to keep away from people for several hours afterwards. Pregnant women and young children are a no no. Members of staff back away from you as their Geiger counters start clicking at you.
I’ve just remembered mammogram! Now that was genuine pain, having a tumour squashed between two plates and scanned. That would be number 6. Bone density tomorrow – no idea what that entails.
Turns out PET scans at this big teaching hospital aren’t as lonely as the (very posh) place I had my previous scans. All the people are lovely and most of the patients are in bays together rather than tiny cell like rooms with sci-fi loud speakers. This space is rather comically called the ‘Hot Waiting Area’ and we have our own ‘hot’ toilet. They let you read here too (unless they are scanning your brain) so that’s a good way to pass the time. I’m also writing this.
The hot area was full of glowing patients waiting to be scanned, so I ended up on a trolley in a freezing cold recovery room from 12.45 til 15.15. It was quiet, but cold. They had a backlog of patients so once my cannula was in (second attempt) I waited a while before getting the radioactive cocktail. The pic below shows the (presumably) lead casing the injection comes in to stop the staff being exposed to too much radiation. Blimey I’m going to be glowing like the Ready Break boy when I get out of here.
During the wait I can’t help worry about next treatment steps, if its spread any where else. If so what this means for prognosis, continuation on the trial etc etc. I haven’t had my latest CT scan results yet either (that’s tomorrow after bloods and a bone density scan). Had to break out a second metal free scan outfit this week!
The PET-CT Scan itself is fine. They come and collect me about 15.15 ask me to use the ‘hot toilet’ and then I get in the scanner. They wrap me up in a weighted cover and blanket so I don’t move my arms and then whiz me gently up and down on the scanner for about 30 mins. In complete silence. Quite soothing, but way too much time to think – as if the 2.5 hours in a room on your own hasn’t sent you into neurosis.
Once off the scanner you are reminded that you mustn’t have prolonged contact with small children or pregnant women for a few hours. Tricky as a mother of two and travelling home on a crowded tube and train in the school summer holidays.
Before leaving the centre, I have a hot cup of tea from a styrene cup to try and get warm, two free biscuits and my packed lunch. It’s gone 4pm and I’m starving and a bit spaced out. It’s now pouring with rain and my metal free outfit is soaked through. I’m hoping the PET-CT results will be ready for my appointment tomorrow, but let’s see.
This post is a bit technical, but I thought it would be useful for people going through or supporting others having a PET-CT scans.