Neuroendocrine Cancer: Ga68 PET Scan – a game changer?

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

this is not actually my scan!

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!

Is the Ga68 PET Scan a game changer?

To confirm the advantages of SSTR PET over Octreotide scans, a study comprising 1,561 patients reported a change in tumour management occurred in over a third of patients after SSTR PET/CT even when performed after an Octreotide scan.

  • Overall, change in management occurred in 44% (range, 16%-71%) of NET patients after SSTR PET/CT.
  • In 4 of 14 studies, SSTR PET/CT was performed after an 111In-Octreotide scan. In this subgroup, additional information by SSTR PET/CT led to a change in management in 39% (range, 16%-71%) of patients.
  • Seven of 14 studies differentiated between inter- and intramodality changes, with most changes being intermodality (77%; intramodality, 23%). (note: intermodality means changes within the same treatment, intramodality means change to another treatment).

In an older study, this slide from a NET Research Foundation conference shows some more interesting statistics:

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This slide from a recent NET Research Foundation conference confirms the power of more detailed scanning

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. If I was to be 100% honest, I’m not totally convinced it’s a metastasis. The scan has brought more light onto my thyroid issue.  In fact it indicate even more potential issues above the diaphragm including what looks like a new sighting around my left pectoral.  The can also lghts up a known issue in the left clavicle lymph nodes, first pointed out via Octreotide scan in 2010 and biopsy negative.

In addition to a nuclear scan update (routine surveillance), it also formed part of an investigation into progression of my retroperitoneal fibrosis (initially diagnosed 2010 but potential growth spotted on recent surveillance CT).  The Ga68 PET doesn’t make fibrosis light up (it’s not cancerous) but there are some hotspots in the area of the aorta close to the fibrosis.   Surgery is on hold for now as my kidney function is fine following a renal MAG3 scan which reported no blockages. 

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:

  1. 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).
  2. 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).
  3. 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).
  4. 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.
  5. 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.

Retroperitoneal Fibrosis (Desmoplasia)

I have learned so much about desmoplasia since this issue arose that I now fully understand why I had to have radical surgery back in 2010 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). The Ga68 PET doesn’t make fibrosis light up (it’s not cancerous) but there are some hotspots in the area of the aorta close to the fibrosis.

I didn’t expect this particular problem to return – it was a bit of a shock. My hormone markers have been normal for 8 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.

Next Steps

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 may be required at some point as the consequences of kidney/bladder function are quite severe. Following some further checks, the anticipated surgery is on hold for now as my kidney function is fine following a renal MAG3 scan which reported no blockages.  I continue to have monthly renal blood tests and it was hinted another renal MAG3 could be done at the end of the year.

Summary

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.

If you can see it, you can detect it. If you can detect it, you can monitor or treat it.

Does your body now have an extra organ? The MESENTERY

mesentery-rectangle

One of the very first words I heard at diagnosis was the word “Mesentery“.  In the news today is the announcement that is now might just be a new organ following accepted findings from research conducted in the University of Limerick Ireland. I always knew it was something which held the small and large intestines in place within the abdomen so like many others, I just thought it was some kind of membrane type structure and I also knew there was some kind of interaction with the peritoneum, another word which I was to become familiar with.

This is an important area for NET patients as many will have mesenteric involvement in their disease.  I’ve read reports of a primary mesenteric tumour although it’s mainly a site for secondary disease (metastasis).  It’s no surprise when you consider the geography – the small and large intestines are inextricably linked to this new organ. There is pancreatic involvement too. The mesentery contains many lymph nodes (the main place for metastasis for small intestinal NETs and other types) and has important blood vessels adding complexity to surgery. It’s also a place where there’s likely to be fibrotic reactions (desmoplasia) from the excess release of serotonin which can also complicate surgery.

When I check my own records, I can see statements such as “mesenteric disease”, “bulky mesenteric nodes”, “further nodal disease situated on the superior mesenteric artery and vein” and “dense retroperitoneal reaction encircling his aorta and cava from just below the level of the superior mesenteric artery”.  When I also look at the post surgical reports, I can see that I had something called a “mesenteric root dissection” which needed a “superior mesenteric vein reconstruction”.

So there you have it, the anatomic description that had been laid down over 100 years of anatomy was incorrect. This organ is far from fragmented and complex. It is simply one continuous structure.  According to the article I read, medical students started being taught that the mesentery is a distinct organ and the world’s best-known series of medical textbooks, Gray’s Anatomy, has even been updated to include the new definition.  Finally, so what you might be thinking?  Here’s a quote from the person who led the work:

“The next step is the function,” Coffey explained. “If you understand the function you can identify abnormal function, and then you have disease. Put them all together and you have the field of mesenteric science … the basis for a whole new area of science.”

Reference material:

http://www.sciencealert.com/it-s-official-a-brand-new-human-organ-has-been-classified

http://www.chicagotribune.com/lifestyles/health/ct-mesentery-new-human-organ-20170104-story.html

https://www.ul.ie/research/blog/irish-surgeon-identifies-emerging-area-medical-science

Thanks for listening

Ronny

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Surgery – the gift that keeps on giving

surgery

As we approach NET Cancer Day, my thoughts return to 9 Nov 2010. I had been diagnosed with metastatic Neuroendocrine Cancer a few months before and told it was incurable. However, with ‘debulking’ surgery, my Oncologist said my prognosis could be significantly improved. I now know from my own research that Neuroendocrine Tumours are one of a small number of cancers for which surgical debulking confers some survival advantage.  Another term used at the time was ‘cytoreductive’ surgery which means ‘to control symptoms and improve survival by removing or destroying disseminated tumour metastases’.  Less neuroendocrine tumours should result in lower secretions of specific hormones which in turn should decrease the effects of Carcinoid Syndrome from which I was suffering at presentation.  I’m still alive and kicking and don’t feel too bad at all!

The 9 hour operation was planned to debulk what was described as “extensive intra-abdominal neuroendocrine disease” and was first of a number of visits to an operating theatre.  The surgeon removed 3 feet of small intestine at the terminal ilium plus a right hemicolectomy, a mesenteric root dissection taking out the nodes on the superior mesenteric artery and a mesenteric vein reconstruction.  With the assistance of a vascular surgeon, my NET surgeon also dissected out a dense fibrotic retro-peritoneal reaction which had encircled my aorta and cava (almost occluding the latter).  This was a risky procedure but 270º clearance was achieved. Although it was known I also had liver metastases and some distant ‘hotspots’, those were to be tackled at a later stage.

I left the hospital some 19 days later and was delicate for some weeks after that.  I don’t recall what the plans were for Christmas Day that year but everything was changed so that it could be hosted at home organised by my ‘right-hand’ woman – Chris.  It was a good plan, as I just wouldn’t have been able to go elsewhere and it was the best gift I could hope for that year. My 3 grandsons  (I have 4 now !) were under strict orders not to jump on me – I had a 12 inch north to south wound still healing! However, I suspect the youngest who was not yet 2 years old at the time, didn’t really understand 🙂  I do have priceless grandchildren!

Not long after the present exchanging and the meal, I was so exhausted that I laid down and fell asleep immediately as a hint that I should be left alone for a bit!   I thoroughly enjoyed the day and it functioned as a medicine along with the many others I was taking at the time. The whole day reminded me that I have a lot to live for, so I’m thankful for the surgery.  

 

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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