Interesting questions

I think I "suffer" from a slight compulsive disorder - I like to know what's going on.  When first diagnosed with TC last year, I spent a lot of time researching what it was and what happens next.  Then this year, when diagnosed a second time (unrelated pure "chance") I kind of did the same.  This year's TC was deemed more suitable for an observation protocol, on the 80% chance that the operation sorted everything out, sadly not the case which is why I'm on BEP.

On day 1 my oncologist came to seem me and talk me through what was happening (we'd had a very good conversation a couple of weeks earlier so this was more of a reacquainting process).  He asked whether I have any questions for him, well yes I did...

Q1: How should I describe myself?
Before my relapse I considered myself as a with a stage 1 teratoma.  However I have now relapsed, so when I talk to people, how should I describe myself?  For example if I was being diagnosed "today" I'd be diagnosed as a stage 2A teratoma.

A1: There is no formal medical term for "me"
The staging is determined at the point of diagnosis.  So from that standpoint I am, and always will be, a stage 1 TC teratoma.  However since then it has relapsed, so you can use one of two descriptions: "a relapsed stage 1 teratoma", or a "stage 1 with metastasize") as they both describe me.  But it would not be correct to say I have  a stage 2 TC as that was not the case when diagnosed.

Q2: Is there a difference in survival rates between "stage 1 with mets" v "stage 2a"
Well this is part of the crux isn't it?  Are my survival chances better/worse for being a stage 1 with mets or a stage 2?

A2: Interesting question, not sure if there is any official research on that on
Basically the oncologist, rightly, sat of the fence here.  He wasn't aware of any specific research into that question.  Yes there is (plenty) of research about survival rate between stage 1 and stage 2, but not specifically of relapsed stage 1.


In my simplistic world, obviously the initial operation didn't resolve the problem (i.e. there must have been cancer cells left in my system), so I'd have thought that I should look at the stage 2 results.  But statistically I am a stage 1, and the results/research they have there will include not just stage 1 patients, but also stage 1 with mets.

Q3: Europe v USA - two different protocols, why are they different and which is best?
From my research there appear to be two different protocols for stage 1 with mets/stage 2 treatment and they differ in order of events.  In the US they adopt for surgery (RPLND), surveillance and possible chemotherapy, whereas in UK/Europe they adopt chemotherapy, surveillance and then RPLND.

A3: Two different cultures, but the end result is about the same
The US has always been more pro surgery and so have over the years adopted this approach first.  Now the RPLND surgery is complex and you need a specialist to do it right.  This is a self-fulfilling prophesy - because the US has performed a lot of these operations, they've got more of the skilled surgeons.  But the surgery is risky - don't cut out all the lympth nodes and it's possible you'll have a relapse; do the surgery incorrectly and you could inhibit the sexual function.


In the UK/Europe there are not as many skilled surgeons, apparently there are two where I am being treated - but that's the exception.  And because of this Europe has tended to go the chemotherapy route first.


All in all a good conversation, and more knowledge for me.  As I said at the outset, I think I am somewhat compulsive, so more information means more control.