Plan D, Part II: Get a Better Look Inside

I am in a bit of a rush today, so this post will be brief.  The second part of my current plan is to try and gather more evidence in terms of imaging.  The Octreoscan I had at the NIH did show an area suspicious for a neuroendocrine tumor (NET) in the anterior mediastinum.  There is some uncertainty about whether the corresponding CT scan of my thymus is normal or not.  Since I feel horrible and thymic NETs tend to be very aggressive in MEN-1 (if that is what I have), I don’t want to just sit and wait to see if there is something there and it spreads/grows.  It doesn’t sound pleasant and it doesn’t sound smart.

You might be asking yourself at this point:  if you really do have a tumor and it is really making you that sick, how can it be that hard to find?  The answer is the following.  NETs are often very tiny – mere millimeters – which is what makes them hard to find.  And often they don’t make you sick because of their size – they make you sick because they spit out hormones.   We have all heard horror stories of someone who feels totally fine, sees their doctor for a routine X-ray or physical exam and finds out by chance they have a big fat tumor that turns out to be cancer.  That’s the image we have in our heads.  Neuroendocrine cancer doesn’t always work like that. Often patients are sick for months or YEARS and some sneaky little tumor causing all this trouble is nowhere to be found.

As the NIH states very clearly in reference to NETs, “from the initial onset of symptoms — including gastrointestinal pain, flushing, diarrhea, and asthma-like wheezing — the average time to proper diagnosis exceeds 5 years.  It is likely that tumors will spread (metastasize) and grow during this time.”

http://www.carcinoid.org/content/nih-clinical-trial-unique-opportunity-carcinoid-net-cancer-state-art-scan

I have no intention of falling into this “5 year” category if I can help it.  So, a few months ago, I started looking into more specialized imaging.  The Octreoscan was considered the “gold standard” for the imaging of neuroendocrine tumors (NETs) in the United States.  However, there are newer scans (well, newer in the US – they have been around in Europe for awhile) that are much better scans that pick up lots of NETs Octreoscans miss.  The scans are called Gallium-68 scans and are referenced in the above link.  They work in roughly the same way as Octreoscans.   A high proportion of NETs have somatostatin receptors on their surface.    During the Gallium-68 scan, you are injected with a radioactive drug (Gallium-68) that binds to these receptors.   Imagine the tumor has a parking lot and the receptors on the tumors are tiny parking spaces.  Getting a Gallium-68 injection is like being injected with little cars that have neon flashing lights.  Now imagine trying to spot a parking lot from a plane at night (that’s a PET scan).  It is hard to see a parking lot filled with regular cars.  However, it might be possible to spot a parking lot filled with neon flashing cars.   Get the picture?

The Gallium-68 scans are only available through clinical trials in the US right now and only in a handful of  locations.   After Plan C fell through, I decided to make getting into a Gallium-68 study a priority.  This plan made sense to me because the Octreoscan does appear to be picking up something (despite the fact so many of the doctors I have seen are discounting it).  If the Octreoscan can find something, hopefully the Gallium-68 scan will too.  Hopefully it will be even more obvious on the Gallium-68 scan. This is going to make it much harder for the next doctor to not take this seriously.  That is the plan.   Often my plans don’t work out as nicely in practice as I think they will in theory, but hopefully this time will be different.   With that plan in mind,  I managed to get myself into a Gallium-68 study in Houston last Thursday.  The scan is TOMORROW.  I have been frantically making travel plans and getting the requisite blood work and paperwork ready to go.  M and I are leaving in a few hours.  I hope to post tomorrow with more details on the scan itself and on if the scan actually found anything.  Like any other kind of scan, the Gallium-68 scan won’t pick up everything through a combination of human error in administering the test, error in reading the scan, lack of somatostatin receptors on the tumor, etc.  I know of lots of patients that have clear biochemical evidence of a NET but even the Gallium-68 scan can’t find it.  But I have to try.

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