Neuroendocrine Cancer: Ga68 PET Scan – a game changer?

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This slide from a recent NET Research Foundation conference confirms the power of more detailed scanning – it does look like 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!

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:

  1. Thyroid lesion lighting up “intense uptake“. 2014 Biopsy inconclusive but NETs now highly suspected. I’m already diagnosed hypothyroidism, probably connected.
  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. 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 nodes. 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.
  3. Report also highlights left subpectoral lymph nodes which is new.  It’s actually very close the SCF and axillary nodes mentioned above.  I’m hoping to get an ultrasound of these in January at my annual thyroid clinic.
  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 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.

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 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.

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.

Author: Ronny Allan

Facebook: https://m.facebook.com/NETCancerBlog and https://m.facebook.com/RonnyAllanBlog twitter: @ronnyallan1 twitter: @netcancerblog

14 thoughts on “Neuroendocrine Cancer: Ga68 PET Scan – a game changer?”

  1. Hi Ronny, sorry to hear of the bone mets and other results but glad you got the Ga68 and a better ‘picture’ for treatment going forward. I’m expecting to get the scan fairly soon as well, so I can really relate to the mixed emotions: I’m already apprehensive, but at the same time, I think it’s better to know than to be constantly suspecting (or guessing).

    Appreciate your information and efforts, as always.

  2. Ronny you are a brave soul ! Love all your blogs and posts.

    You wouldn’t believe the torture someone has to go through to get tested for NET………I think they should be doing PET scans first then other scans (medicine does everything backwards or waits till you are in extreme condition before proper testing)……..my ct scans have shown inconclusive evidence of something occurring in my abdomen, near my liver and spleen……and in my pelvis where I had previous surgery. I have had thermographs (thermogram) done in the past that work similar to PET scans…they pick up hot and cold spots… My whole upper body is a mess according to thermographs…I have had abdominal pains since I was a kid…but they never found cause from medical standpoint…..I always thougth they were missing something and asked for a PET scan but according to protocol you can only do them if they see or suspect cancer….I thought originally I might have been dealing with breast cancer…some of my docs suggested it, but all breast mammograms were negative. FM doc found black mold on workup in my 24 hour urine….and I had yeast overgrowth, and fungus from nails invading other areas of my body…

    My mom with ovarian cancer diagnosis lived for 18 years. dad died within 3 years of diagnosis of lung cancer, both supported differently by alternative methods of treatment….

    I wish you well on your wellness journey…….sending lots of good energy !

    Diane Greco Allen LinkedIn

    Facebook: “For the Health of It” Twitter: yourotheritalianmother d.grecoallen@aol.com

  3. Hi Ronny, I am really feeling for you having just read your recent diagnosis but you may think me odd, but I was not surprised as you took so long to recover from that last chest infection and I just felt were not up to par, as we say in the UK. Be positive net buddy and keep us up to date and relax a bit more and look after yourself. 😘

  4. Hi Ronnie so sorry to hear about the RPF. I don’t know if this is any help but it was RPF strangling my Ureters that led to my Pheo diagnosis. There is no known association between Pheo and RPF I am told. The RPF however stabilised on removal of the Pheo. I did however have a number of years where the urologists tried to deal with the RPF. I still in the end had major surgery, to free the ureters. In hindsight I think we could have gone for the surgery earlier. Happy to expand if that would help. The main thing I would say is if they can remove the source of the RPF so much the better.


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    1. thanks. I’m told this is a form of desmoplasia similar to what you would see in the mesentery caused by excess hormone release from NETs, I guess Pheo’s might do similar. I looked at two european studies and it would seem that retroperitoneal is much less common than mesenteric fibrosis

  5. Thanks for the results of your G68 Scan. Mine is coming up soon, and I am super nervous. Now I understand why I should be…. Best of luck moving forward – you are one amazing human being!!

  6. I have been follower if you for a long time now and feel as if I know you. As I have previously mentioned to you I have been on the Control Nets Trial here in Sydney, Australia and i sincerely hope that you can have the PRRT as I truly believe that it is a valuable treatment for our condition.


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  7. My GA-68 scan last year revealed my unknown primary. It was in the pancreas, not the intestines where it was thought to be for 6 years. It also put me in the “bone met” club with a met in my skull and three in various vertebrae. No change in plans right now, still watch and wait, but I am told that I am a good candidate for PRRT when progression is detected.
    May you have the best possible outcome.

  8. Can’t tell you how much I appreciate your posts, Ronny – this one in particular as I’m coming up to my 3-monthly CT scan. Fingers and all parts of my body crossed – for you too. Hang I there.

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