When I was offered my very first Ga68 PET/CT at a 6 monthly surveillance meeting in May 2018, I was both excited and apprehensive. Let me explain below why I had a mix of emotions.
I was diagnosed in 2010 with metastatic NETs clearly showing on CT scan, the staging was confirmed via an Octreotide Scan which in addition pointed out two further deposits above the diaphragm (one of which has since been dealt with). In addition to routine surveillance via CT scan, I had two further Octreotide Scans in 2011 and 2013 following 3 surgeries, these confirmed the surveillance CT findings of remnant disease. The third scan in 2013 highlighted an additional lesion in my thyroid (still under a watch and wait regime, biopsy inconclusive but read on….).
To date, my 6 monthly CT scans seem to have been adequate surveillance cover and all my tumour and hormone markers remain normal. I’m reasonably fit and well for a 62-year-old.
Then I ventured into the unknown
I wrote a comprehensive post about the Ga68 PET entitled “…. Into the unknown” – so named because that is how I felt at the time. It’s well-known that the Ga68 is a far superior nuclear scan to the elderly Octreotide type, showing much greater detail with the advantage of providing better predictions of PRRT success if required downstream. It has been a game changer for many and if you look below and inside my article, you will see statistics indicating just how it can ‘change the game’ in somatostatin receptor positive Neuroendocrine Cancer diagnostics and treatment.
The excitement of the Ga68 PET
I was going to get the latest ‘tech’ and thought it could be useful confirmation of what I already knew. I also felt lucky to get one, they are limited in UK and there has to be a clinical need to get access. I was excited because it might just rubber stamp the stability I’ve enjoyed for the past 5 or so years since my last surgery in 2012.
The apprehension of the Ga68 PET
I also felt apprehensive because of the ‘unknown’ factor with cancer, i.e. what is there lurking in my body that no-one knows about, and which might never harm me but this scan will light it up demanding attention. I was also apprehensive in case this more detailed scan found something potentially dangerous. As we know, NETs are mostly slow-growing but always sneaky. Of course, any new tumours found may not actually be new, they were just not seen until the Ga68 PET was able to uncover them. How annoying!
Was Ga68 PET a game changer for me?
Yes, I believe so. I’m now in the ‘bone met club’ and although that single metastasis has probably been there for some time, it’s not a ‘label‘ I was keen to add to my portfolio. It’s brought more light onto my thyroid issue and continues to indicate some issues above the diaphragm including what looks like a new issue around my left pectoral and lights up an existing issue in the clavicle lymph nodes (first pointed out via Octreotide scan in 2010).
It also formed part of an investigation into progression of my retroperitoneal fibrosis (initially diagnosed 2010 but potential growth spotted on recent surveillance CT). I may now need surgery to prevent kidney/bladder issues and/or radiation therapy to tackle the root cause (the latter is ruled out for now – Nov 2018)
It would appear I’m no longer a boring stable patient
The Ga68 PET Scan confirmed:
Bone Metastases. Report indicates “intense focal uptake“. It always amazes me that people can be thankful for having an extra tumour. I’m thankful I only have a single bone metastasis (right rib number 11). I had read so many stories of those who got their first Ga68 PET and came back with multiple bone metastases. I’ll accept one and add to my NET CV. I have no symptoms of this bone metastasis and it will now be monitored going forward. I’m annoyed that I don’t know how long it’s been there though!
Confirmation and better understanding of the following:
- Thyroid lesion There is some uptake showing. A 2014 Biopsy of this lesion was inconclusive and actual 2018 Ga68 PET report infers physiological uptake. I’m already diagnosed hypothyroidism, possibly connected. (Edit – on ultrasound in Jan 2019, looks slightly smaller than previous check).
- Left Supraclavicular Fossa (SCF) Nodes lighting up “intense uptake“. I’ve had an exploratory biopsy of the SCF nodes, 5 nodes removed negative. Nothing is ‘pathologically enlarged’ in this area. Monitored every 6 months on CT, annually on ultrasound. I had 9 nodes removed from the left axillary in 2012, 5 tested positive for NETs and this area did not light up. This whole area on the left above the diaphragm continues to be controversial. My surgeon once said I had an unusual disposition of tumours. (Edit: Nothing sinister or worryingly enlarged showing on Jan 2019 ultrasound – measuring 6mm).
- Report also highlights left subpectoral lymph nodes which is new. The subpectoral area is very interesting as from my quick research, they are closer to the left axillary (armpit) nodes than they are to the SCF nodesI’m hoping to get an ultrasound of these in January at my annual thyroid clinic (Edit: nothing sinister showing on ultrasound in Jan 2019).
- My known liver metastases lit up (remnant from liver surgery 2011) – not marked as intense though. The figure of 3 seems to figure highly throughout my surveillance scans although the PET report said “multiple” and predominately right-sided which fits.
- Retroperitoneal area. This has been a problem area for me since diagnosis and some lymph nodes are identified (intense word not used). This area has been highlighted on my 3 octreotide scans to date and was first highlighted in my diagnosis trigger scan due to fibrosis (desmoplasia) which was surrounding the aorta and inferior venous cava, some pretty important blood vessels. I wrote an article on the issue very recently – you can read by clicking here. So this scan confirms there are potentially active lymph nodes in this area, perhaps contributing to further growth of the fibrosis threatening important vessels – read below.
I have learned so much about desmoplasia in the last week that I now fully understand why I had to have radical surgery to try to remove as much of the fibrosis as possible from the aortic area. You can read more about this in my article. Desmoplasia via fibrosis is still very much of an unknown and mystery condition in NETs.
I now know that my fibrosis is classed as clinically significant and according to the Uppsala study of over 800 patients inside my article, I’m in 5% of those affected in this way (2% if you calculate it using just the retroperitoneal area).
It appears this problem has come back with new fibrosis or growth of existing fibrosis threatening to impinge on blood vessels related to the kidneys and also my ureters (kidney to bladder urine flow).
I didn’t expect this particular problem – it was a bit of a shock. This is not a straightforward surgery. My hormone markers have been normal for 7 years and this just emphasises the importance of scans in surveillance.
Conventional Imaging is still important though
There’s still quite a lot of hype surrounding the Ga68 PET scan and I get this. However, it does not replace conventional imaging (CI) such as CT and MRI scans which still have their place in routine surveillance and also in diagnostics where they are normally at least the trigger for ‘something is wrong’. For the vast majority, a CT/MRI scan will find tumours and be able to measure reductions and progress in regular surveillance regimes. There are actually recommended usages for the Ga68 PET scan here. For example, it is not recommended for routine surveillance in place of CI.
In fact, the retroperitoneal fibrosis has appeared on every CT scan since diagnosis but the changes were highlighted on my most recent standalone CT and it triggered the Ga68 PET (although my new Oncologist did say I was due a revised nuclear scan). It’s not a ‘functional’ issue (although it is caused by functional tumours). In fact the fibrosis is not mentioned on the Ga68 PET because it is not lighting up – but the lymph nodes surrounding it are mentioned and they are under suspicious as being active.
Read a summary of all conventional scans and nuclear scans by clicking here.
I’ve since has meetings with my Oncologist and Surgeon and a treatment plan is underway. My surgeon explained it all in his wonderfully articulate and brilliant surgical mind. Fortunately it’s not really urgent but pre-emptive treatment will be required at some point as the consequences of kidney/bladder function are quite severe. It’s also possible that PRRT will be considered as a way to treat the tumours responsible for new and renewed growth of the fibrosis. I will keep my blog updated as things progress.
My game has changed, that’s for sure. I’m now entering a new phase and I’m waiting on details of my revised surveillance regime. However, at least my medical team and I now know what WE are dealing with and the risks vs benefits are currently being assessed. I’m heavily involved in that.