Entering a new phase. Survivorship ?

So, after an extremely nerve wracking 24 hours the results are in, and in trying to interpret the results I think I'm finally starting to understand what stage 4 "survivorship" is going to be like. I'm struggling to use the word survivorship here because to me 'surviving' cancer is akin to being cured, and I don't think I'll be able to say that unless I manage the magic 5 years of disease free scans. But the word 'survivorship' is playing on my mind because my surgeon suggested today that I do some research on it or discuss it with a psychologist, because by his definition I am, post treatment, technically entering the survivorship stage of cancer, but in the unique fashion that one survives metastatic cancer - which is essentially living with tremendous ongoing uncertainty. 

Anyway, I should stop waffling and get to the scan results. In my surgeon's words, this was a good report. I think I was hoping for a 'completely clear' result and that's not what I got, but I do agree it was a good report, because these days I live by a "shit, it could be much, much worse" mantra.

First you need to understand how PET (Positron Emission Tomography) scans work to understand the vagaries of the results. An hour before the scan a small amount of radioactive glucose is injected into the body, and a scanner (basically a CT tunnel) is used to compile detailed images of any areas inside the body where the glucose is metabolized. Because cancer cells often take up more glucose than normal cells, the pictures can be used to find cancer cells in the body. The glucose contrast that they inject you with is called FDG (fluorodeoxyglucose).

  • Now, my results. First, my favourite parts of the report:
    • "FDG uptake in the liver, adrenal glands and spleen where unremarkable. There was no FDG avid intra-abdominal lymphadenopathy". So, cancer has not returned to my liver after I had a chunk of it removed to take out two small metastatic tumours, nor is cancer evident anywhere in the immediate surrounds. This was initially a big concern because the initial surgical pathology indicated that my chemo regime hadn't been all that effective on my liver tumours. 
    • "There was no FDG avid pulmonary nodules or pleural effusion in both lungs". This was a particular relief to me because, secretly, I'd convinced myself in recent weeks that cancer had spread to my lungs because of a bad cough I've had. 
    • "FDG uptake in the remainder of the whole body was unremarkable". Again, a huge relief because I've been having visions of life with brain, spine or any number of other metastasis having befriended many cancer patients over the last few months who have developed these classes of mets. 
  • Now I need to share the not so great parts of the report:
    • "Mild / diffuse FDG avidity was noted around the site of the primary tumour resection". Both the report itself and my surgeon tell me that this need not be cause for alarm as (1) it is very likely just reactive / inflammatory changes caused by the major surgery OR (2) even if it is residual disease it is very small and there are several treatment options. 
    • "Small focus of mild FDG avidity to the left iliac artery". Here again the report and my surgeon say this could be associated with normal body function. 
    • "Focal hyper-metabolism of FDG at the bilteral aspect of the prostate". Once again, the report suggests this could just be inflammation caused by other factors. 

You probably see what I mean now. On the one hand there is some great news - cancer hasn't spread like wildfire despite the last 4 months of chemo - while on the other hand there is some cause for new uncertainty. But frankly, even if this scan did simply say "no evidence of FDG avidity anywhere, at all, the cancer demon has been vanquished", it would only be a point in time view. Because I have metastatic cancer with the worst grade of lymph spread, there is always going to be a high risk it will return, even if I initially get some good scans. The new art of post stage 4 cancer living - or 'surviving - which I think I am yet to perfect, is to find peace with that uncertainty, to live well despite it and to simply be very grateful for each additional living day. It's also worth noting that with each additional year that a stage 4'er can survive, the odds of a more effective lasting treatment being developed increase.  

So what next I hear you ask ? Here is a quick run down: 

  • April 16th - General anesthetic surgery to remove the IVC filter from my vena cava. They're not sure if it will be pulled out through my neck or my groin. I am trying not to think about it. 
  • May 9th - General anesthetic surveillance procedure. They are basically going to go in with probes to check those areas of concern identified in the PET scan. I'm told I can look forward to a conscious enema before the procedure. 
  • May 17th - Assuming everything looks ok in the May 9th procedure I will have surgery on the 17th to reverse my ileostomy and fix the large abdominal hernia that I developed as a result of the ileostomy. This will likely entail a week in hospital. 
  • I guess at some point, all going well, there will be another procedure to remove my port

Personally, I'm excited by the prospect of these next few weeks because in the whole time I've been off work - since August last year - I've never had more than a few days free of chemo / radiation side effects or surgical recovery issues. I'm looking forward to spending some 'healthy feeling' time with my family in between these scheduled procedures. And I still have a few projects to finish up and a farm to plant :) Right now it is still hard to imagine, but if things keep going 'well' then hopefully I can be back at work by June. 

Besides getting my PET results, today was also Calla's 4th birthday, and I attempted my 1st birthday cake. 




A few words of thanks

The big scan is booked