A few people suggested I start a blog after I was diagnosed. Mostly because it's a good way to vent and it means you can look back and see how far you've come and how things have improved. I Agree that writing your thoughts down is an excellent way to vent frustrations without moaning to loved ones, it's also a good way of putting order into your thoughts to help you think clearly when you're head seems to have too much flying around in it all at once!
However, I didn't see the point in a blog as I felt it was a personal thing to do and no one else need be concerned with it. Instead I bought a lovely little leather bound notebook and i've been keeping my notes in there.
Since then, I've realised why a blog is a good idea. Whilst searching for hope on the internet I came across a few blogs of people who have been battling synovial sarcomas. The positive attitude and courage in some of these people when facing what they have to face has inspired me and lifted my spirits so many times now. I always thought my story was a bit too doom and gloom to bring to anyone's attention as most people are looking for success stories. I feel now that with all the twists and turns, my story is worth telling as it might give others hope and strength to stay strong and carry on when the outlook is bleak!
I've just started what I think is the final stage of my treatment, hence the 'better late than never'.. So I shall summarise the whole escapade and see how it pans out.
Thursday 15 October 2015
An unexpected turn..
Unfortunately the unexpected turn is not that my terminal prognosis turned around (again) and i'm actually NED. It's that the trust I had in my care at my cancer centre has suffered a dent when I found out that my tumour didn't actually shrink to the point it couldn't be measured and remain stable as I was told after my last two scans.... but that it actually only shrank by 4mm the at the first of these two scans and at the second it had actually doubled in size to 44mm.
I'm totally baffled that a mistake like that could be made! So basically, I had been told my tumour was nothing but 'thickening of the tissue' after starting pazopanib and having a great response after three months.. I then had another scan at six months and was told it was stable. At this clinic appointment I asked A LOT of questions about exactly why I couldn't have surgery and where these "hotspots" were on my PET scan. During this chat we pulled up so many scans the computer crashed. So we left it at that and I went home finding out a little more about the hotspots. I also mentioned (as i have every other time) how happy I was to know it wasn't growing as I thought I could feel the lump growing.
When I went back two weeks later to collect some drugs my oncologist said to me that she reviewed all my scans and that they have been reporting on the wrong area for the last two scans. An area of thickened tissue where my original tumour was. She said the actual tumour had definitely grown. I was blindsided by this information and didn't really ask anything. She just said to come back in six weeks as planned. And after my scans in december we could maybe arrange radiotherapy if it was growing considerably.
When I got home everything sunk in and I began to ask lots of questions. How could they make a mistake like that? How could every scan up until this point be referring to an area near my liver at the bottom of my ribs and then suddenly start looking at an area under my armpit.... and not even notice the fact there was a 4.5cm tumour in my chest wall when they are supposed to be looking for spread? This all seems to fall on the radiologist reporting my scans I suppose.
However.. my oncologist didn't seem to even know where my tumour was. She offered radiotherapy after saying before it wasn't an option because i'd already had max dose (which i had to the area where my lung used to be) This tumour is actually lower than the previous field, so I CAN have radiotherapy... I could have had it when my tumour was just 18mm.. which I assume could possibly have been more effective than treating a 44mm tumour. I'm pretty disappointed about that.
I was surprised about my oncologists reaction. Just didn't seem surprised at all and mentioned it like it wasn't a big deal. I then had to email her and ask for the scans to be re reported by a radiologist so I knew how my treatment was really working and if i should get the ball rolling with radiotherapy sooner rather than later. She then emailed me back the sizes... with nothing else on the email and it was at this point I found it it had DOUBLED in size. Why did she not think this was something I should know about? Urgently? So I then emailed saying "I think it's safe to say pazopabnib is no longer effective and that we should try radiotherapy" so she agreed and said she'd get the wheels in motion... Why the hell am I the one instigating these things?
However... aside from the radiotherapy thing.. I guess things wouldn't be much different if this massive cock up hadn't been made. The 4mm shrinkage would have been classed as a partial response and I would have continued with pazopanib until the second scan anyway. Things would have been found out and dealt with two weeks earlier at the second scan results if they'd been looking in the right place but what difference will two weeks make? Not much I'd think. So that's in the past and we're here now and all I can do is try and choose the best path from here forward. I'm just a little bummed that I don't feel as confident about my level of care. Wondering what else they could be missing? Do they actually give a shit?
Bummer the pazopanib didn't work for me... i'd really hoped it would but cést la vie!
Yours
Ranty McRanterson
I'm totally baffled that a mistake like that could be made! So basically, I had been told my tumour was nothing but 'thickening of the tissue' after starting pazopanib and having a great response after three months.. I then had another scan at six months and was told it was stable. At this clinic appointment I asked A LOT of questions about exactly why I couldn't have surgery and where these "hotspots" were on my PET scan. During this chat we pulled up so many scans the computer crashed. So we left it at that and I went home finding out a little more about the hotspots. I also mentioned (as i have every other time) how happy I was to know it wasn't growing as I thought I could feel the lump growing.
When I went back two weeks later to collect some drugs my oncologist said to me that she reviewed all my scans and that they have been reporting on the wrong area for the last two scans. An area of thickened tissue where my original tumour was. She said the actual tumour had definitely grown. I was blindsided by this information and didn't really ask anything. She just said to come back in six weeks as planned. And after my scans in december we could maybe arrange radiotherapy if it was growing considerably.
When I got home everything sunk in and I began to ask lots of questions. How could they make a mistake like that? How could every scan up until this point be referring to an area near my liver at the bottom of my ribs and then suddenly start looking at an area under my armpit.... and not even notice the fact there was a 4.5cm tumour in my chest wall when they are supposed to be looking for spread? This all seems to fall on the radiologist reporting my scans I suppose.
However.. my oncologist didn't seem to even know where my tumour was. She offered radiotherapy after saying before it wasn't an option because i'd already had max dose (which i had to the area where my lung used to be) This tumour is actually lower than the previous field, so I CAN have radiotherapy... I could have had it when my tumour was just 18mm.. which I assume could possibly have been more effective than treating a 44mm tumour. I'm pretty disappointed about that.
I was surprised about my oncologists reaction. Just didn't seem surprised at all and mentioned it like it wasn't a big deal. I then had to email her and ask for the scans to be re reported by a radiologist so I knew how my treatment was really working and if i should get the ball rolling with radiotherapy sooner rather than later. She then emailed me back the sizes... with nothing else on the email and it was at this point I found it it had DOUBLED in size. Why did she not think this was something I should know about? Urgently? So I then emailed saying "I think it's safe to say pazopabnib is no longer effective and that we should try radiotherapy" so she agreed and said she'd get the wheels in motion... Why the hell am I the one instigating these things?
However... aside from the radiotherapy thing.. I guess things wouldn't be much different if this massive cock up hadn't been made. The 4mm shrinkage would have been classed as a partial response and I would have continued with pazopanib until the second scan anyway. Things would have been found out and dealt with two weeks earlier at the second scan results if they'd been looking in the right place but what difference will two weeks make? Not much I'd think. So that's in the past and we're here now and all I can do is try and choose the best path from here forward. I'm just a little bummed that I don't feel as confident about my level of care. Wondering what else they could be missing? Do they actually give a shit?
Bummer the pazopanib didn't work for me... i'd really hoped it would but cést la vie!
Yours
Ranty McRanterson
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