Monday, 25 May 2015

Life of Riley (VHL Concerns)

I've been meaning to make this post for sometime, I just refrained from doing it until I felt I had more definite information, which I do now.

First, a bit of backstory:

About two months ago I had one of my yearly abdominal MRI scans for VHL, and the following week I saw my endocrinologist about the results. For almost a year I had been receiving monthly injections of a drug known as Sandostatin, which is primary used in my case to suppress the symptoms of active Neuroendocrine Tumors in the pancreas such as flushing, but it has an additional effect where it may retard tumour growth and possibly reduce tumour size; the two tumours I have on my pancreas are slowly growing towards the 2cm size of concern where they have the ability to develop into cancerous growths that could metastasis and potentially spread. The results of this latest batch of images were additionally to see if the drug was having any beneficial effect on growth limitation.

The results were disheartening on several accounts: first off, the drug didn't seem to be delaying their growth either by not being on it long enough to have effect or just being ineffective in general: the larger of the two is now 18.9mm in size up from the 18mm it was about a year ago, and the smaller being 1.9mm from 1.1mm. This means sooner or later I'll have to have surgery to remove said tumours, most likely a complex procedure that'll require the reconstruction of my Foregut given their location near the head of the pancreas near various local organs and their ducts, unless by chance the drug does send these tumours into remission.


The more concerning thing though, was the rather sudden appearance of a tumour (2.4cm in size) on my left kidney that appears to be consistent with a Renal Cell Carcinoma. Although rather small and of little immediate concern of possible metastasis (my VHL handbook lists there have been only three verified reports of metastasis from tumours smaller than 4cm, all of which were greater than 3cm in size during a twenty year period), the tumour's rather sudden appearance means that its growth rate is fairly considerable so I should be dealt with sooner than later.

Flash-forward to now'ish:

A few weeks ago I saw a radiologist about the possibility of having the tumour on my left kidney removed through Radio-Frequency Ablation, a minimally invasive process where they basically insert a probe into the tumour and burn it away with concentrated heat. Unfortunately he doesn't believe the procedure would work for me given several factors, mostly sensitive location and its position by the main vessels and ducts in the kidney mean they'd act as a heat sink, preventing them from being able to burn away the whole tumour site. Disappointing to hear.

I recently talked with my specialist last week and he's booked me for surgery for June 22nd. He and another kidney specialist, whom I'm meeting this Wednesday, are going to surgically remove the tumour and depending on factors, the order of preference on how it goes will be laprascopic (keyhole) partial nephrectomy (partial removal of the kidney) - recovery time estimated a month; if for some reason scar-tissue or other factors prevent them going in laprascopically, then it'll be an open surgery partial nephrectomy - a recovery time of approx. three months; and worst case scenario it'll be a radical (complete) nephrectomy - also around three months recovery.

I mentioned to him the pair of tumours on my pancreas that were reaching a concern size-wise from recent scans and that they may want to discuss the possibility working with my other specialist who has been monitoring/planning for those as I have yet to see him since these recent developments; my specialist thought this was a very good idea and shall get in touch with him as it might be better if we're able to minimize my total recovery time by one large procedure rather than waiting until I'm healthy from this operation enough to go under again for my pancreas. This remains to be seen though.

It's good to have a date to inform people of and plan around, but there's still many unknowns at this point, like how early do I have to be off work for any pre-op prep, are my specialists going to collaborate on also dealing with the concerns on my pancreas at the same time, if so what's the projected recovery time, complications, etc. I may get some more answers this Wednesday and if so I'll let those interested if I don't post it on my blog.

Aside from all this, my health has been excellent and I've been doing my best to enjoy the wonderful weather we've been having until I no longer have the chance to do so! Last weekend was my partner and I's 8th anniversary together and 1 year for being engaged. To celebrate, we had a anniversary/belated-engagement party on Friday; many friends came and we were most loved. On the following Saturday the both of us attended Medieval Chaos; it was the first time for the Missus' but she enjoyed and says she'd like to go again in the future. I'll be writing an IC post on that soon. Best anniversary ever!

Photo Credit to our good friend Scotty.

Despite these medical concerns, life is truly magnificent! :)