Backwards Relief

If  you've been reading here long you know the question of whether or not Tomas and Pheochromocytomas and Paragangliomas in general are considered 'cancer' from the start has long bugged me.  The literature that can be found says 'benign neoplasm' and 'non-cancerous' over and over.  Indeed, some of the NIH's own informational websites even say 'non-cancerous.'  But...  Something has always struck me as troubling about that.

"Regionalized" disease does not necessarily mean that the disease will not become malignant.  It does not mean that the disease will not recur.  The NIH especially, and other institutions increasingly, admonish their patients to have LIFE LONG follow-up because the potential for recurrence and metastasis exists for years--even 20 or 30 years--down the line.

So I asked the Pheo protocol coordinator at the hospital where I was treated  flat out-- Is this stuff cancer?  When is it considered cancer?  Is it always considered cancer or is it only called cancer at a certain point?

And Karen called today just to address that question because Karen is awesome like that and she said, "It's metastatic when it's spread to a non-chromoffin site.  It's recurrent if it comes back in the same place or in another chromoffin tissue site."

And so I said--, "And is it cancer?"

YES.  YES.  YES.  It is cancer.  According to the NIH Pheo-para protocol, it IS cancer.  It IS cancer from the beginning.  And doesn't that make so much more sense than "Well it isn't cancer....  but it could be cancer....  and you really don't know if it's cancer until it spreads....  and then it's definitely cancer and we really have limited ways of treating it."

And so, I was relieved today to find out that I've had cancer.  My mother, who always had a colorful vocabulary would use the word 'bass-ackwards' to describe the fact that I am RELIEVED to know that I have had cancer.  That's MESSED UP, right?!!!

Except...  that when you have a disease that 'isn't cancer until it is cancer' you don't fit in any boxes.  And if you have a disease that Wikipedia and Google tell you repeatedly is a "generally benign neoplasm," when doctors are talking to you they tend to not be real concerned.  They tend to be a little lackadaisical.  They tend to tell you that you have nothing to worry about.

Which might be true.

Unless it isn't.  And then, you could find yourself in the position of thinking that you were in the clear for years and those doctors who were so confident in their 'almost certainty' that these tumors are benign could have pointed you in the direction of not needing regular scans, or of scanning just a part of your body and not the whole thing.  And you could find yourself with "All the way cancer," and you might have missed precious time to fight that 'all the way cancer' because of misinformation that told you everything was 'probably' over and done with.  (Edited to add)  I think it's a relief to me because some how calling it 'cancer' gives it the gravity and seriousness that I feel is warranted for this disease (whether it's been called that or not).  A doctor and a patient will react differently to a 'vague generally  benign neoplasm' than they will to a tumor that slow-growing and low metastatic potential not-withstanding is called cancer.

It is a relief to not be in the no-mans land of disease.  It is somehow a relief to know that 'cancer survivor' is nomenclature that describes me.

It's backwards that I'm relieved that it's true.  But I am.  And as a patient I wish that this was the accepted definition of Pheo and Para from the start.  I wish that understanding would would start to trickle out of the NIH and into the consciousness of Endocrinologists and Head and Neck specialists the world over.  If it WAS the accepted definition from the start I suspect that fewer doctors would allow themselves to be so lackadaisical about it.  My second surgeon who I saw before our decision to go to the NIH--and this guy is one of the world-class head and neck surgeons and one of the most respected head and neck surgeons probably in the country--told me that the procedure to remove Tomas was basically "Elective."  That my tumor didn't really need to come out because it was "probably harmless," but because of it's location near nerves and blood supply that it was considered best practice to remove them anyway.  I think he said it to make me feel better.  Instead I felt dismissed and confused at the vast chasm of difference in the concern about these tumors that I was seeing between institutions.

If it's backwards for me to be relieved that I've had cancer (and I'm as relieved about the 'had' word as I am about the 'cancer' word), then I'm ok with that.  I WANT doctors especially to know that we NEED to have continuity in understanding about these tumors.  We need to have a standard understanding.  If the NIH Protocol defines Paras and Pheos as cancer from the start, I am ok with intellectually accepting that definition too.  After all they have seen thousands of the things where most specialists have usually only seen a handful.

I had cancer.  I survived paraganglioma.  I am a cancer survivor by the NIH's standards.  And while perhaps that should scare me under a rock instead of settling something deep in my brain for me, I'm ok with it.