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The Mysterious World of Steve Ward

Posted Apr 12 2011 7:32pm

Questionable;  Adjective (Doubtful, Uncertain)

Synonyms: ambiguous, apocryphal, arguable, contingent, controversial, controvertible, cryptic, debatable, disputable, dubious, dubitable, enigmatic, equivocal, fishy, hard to believe, hypothetical, iffy, indecisive, indefinite, indeterminate, moot, mysterious, obscure, occult, open to doubt, open to question, oracular, paradoxical, problematic, problematical, provisional, shady, suspect, suspicious, unconfirmed, undefined, under advisement, under examination, unproven, unreliable, unsettled, vague

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Firstly, an apology.

Time has escaped me and I have left my loyal community resultless – all of which I hope to correct in the following paragraphs. Suffice to say that my lack of need to vent my mind on the blog is perhaps an indicator of good news? Or it may just mean that I have been far too busy with an ever-increasing work schedule a now 6 month old baby and a well-known football management simulator.

So, where are we then?

When I last mailed I made it clear that I was expecting the result of my latest PET scan and I have, indeed got those results.  I didn’t rush to publish them as, once again they were questionable, doubtful, uncertain… As you can see I threw questionable into a thesaurus and the most exciting synonym I could find was “mysterious.” So allow me to explain the mysterious world of Steve Ward.

Basically, my post-radiotherapy PET scan was the same as the last 2 PET scans, meaning nothing has changed since July 2010 (in 8 months). In fact, they are better than the same; as my chest mass has continued to shrink without treatment (meaning my body is now working at absorbing the scar tissue) and my neck node has also continued to shrink by a mm or so. But the little light remains switched on, rumbling along at an indeterminate SUV (brightness) that could be infection, inflammation or, of course, residual disease. Again the PET report suggested a biopsy to confirm and again I was told the node was just too small to get to. This poxy light is what stands in the way of me being mysterious and being in remission (and as cool as the former sounds, I would much rather be the latter).

What does all of this mean?

Well, the Doctor would have expected one of 2 things to have happened following the radiotherapy, either for the light to have gone out completely or, given the 4 months off all treatment before the scan, to have grown in size and become brighter. Basically if it was Hodgkin’s it would either be dead or it must be so aggressive that it survived double chemo and then radio and it would have thrived under no treatment at all. But it did neither of those things. It just remained as it was a small lump of ambiguity, an iffy mass of dubiousness.

Looking back, the PET light up node in question has been a little bit fishy ever since scan 3 back in July as it didn’t follow the same pattern as the rest of my body. Allow me, if you will, to create a graph of my Hodgkin’s (bear with me):

This took longer than it should have

As you can see, the large chest mass was the danger area, it was… large and it didn’t completely respond to ABVD chemo. The tiny lung nodule and neck node responded well during the the first 2 cycles, reaching NED (No evidence of Disease) and MRU (mild residual uptake) respectively, whilst shrinking nicely. I was then switched to BEACOPP and the chest mass gave up too. After 4 cycles it was NED, the lung nodule remained NED but the neck node remained MRU ( which led to the debate over treatment and the decision to continue BEACOPP ). We completed the BEACOPP and scanned again, the chest mass shrunk and remained NED, the lung nodule was all but history (NED) but the neck nodule was MRU, leading to the decision to hit the radiotherapy. Bringing us to today, after the radiotherapy and I can only report more of the same.

So what does it all mean? Well, we aren’t sure. But my Doctor did say that he didn’t think this was Hodgkin’s. This is great news. He finds it hard to believe that Hodgkin’s would be able to do this, to be able to survive all the treatment, particularly the radiotherapy at such a low-level in such a small node. He has described the light on the scan as “small area of questionable significance.” He doesn’t want to treat it! So this is all good. In fact, the good Doctor is at pains to try to find another explanation other than Hodgkin’s for the light up. His current theorem is that it may be some kind of chronic inflammation as a result of the biopsy back in Feb 2010 – it is the biopsied node illuminating (and something that I have seen happen on the lymphoma forums, more than once). The fact that it has remained the same for so long backs this up and could actually imply that it has been NED since the 2nd scan way back in May 2010 (making my rads a pointless exercise) but meaning I would have been in full remission since July!

What Next?

Well, I can’t be the mysterious Steve Ward forever and we need to get to the bottom of this indefinite scanning. The medical team all agreed that no further treatment was required and that we would “watch and wait” to see what the node does (if anything). But what if that next scan was the same? Would I be in remission then or would it still be open to question? So as well as this, the Doctor took time out to speak to the hospital PET expert, hoping that she could give a concrete reason why this was not Hodgkin’s and we could relax. Unfortunately she could not, stating only that the scan was clearly indeterminate! She has, however, offered to attempt an Ultrasound guided Fine Needle Aspiration of the node.  This means I get hooked up to a machine similar to what Eve was on when we used to check on Emily in the womb and they use that to guide a very thin needle into the node to suck out a tissue sample to see what it is. My Doctor has said it is unlikely to yield any results, as they may not find the node and then they may not get a good sample, but that it is worth a shot if it can reveal reactive tissue. Otherwise the result would be inconclusive (not again) and then we would go back to the watch and wait approach and scan again in 4 to 6 months.

So, I await the stabbing and I await those results. But I am not too anxious. This is mainly because I am the mysterious Steve Ward and I will seek out doubtful \ questionable test results wherever I go. Oh and because I told you last time that I wasn’t going to have any more PET scans. I decided then that I was cancer free and I still feel cancer free. My bloods remain perfect, my symptoms remain gone and to be pretty frank, my neck just feels normal and unswollen a further month out of treatment (the scan was that long ago). I am still not “in remission” but I am all but there and what’s a few words between friends. I guess I’ll just have to save the big remission announcement for another time.

I’ll be back soon to discuss the ups and downs of ultrasound guided needle biopsies and how cancer is like a disastrous boat trip!

Steve


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