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Saturday 13 June 2020

Cancer Surveillance in the Age of COVID-19.


06/13/20: - To say 2020 has been an interesting year would be an understatement.  A week before my latest round of scans, the COVID-19 lockdown hit my city.  Scanxiety is bad enough, never  mind having to decide whether or not it’s safe enough to get your scans in the first place.  It’s like you’re damned if you do & damned it you don’t.  Adding fuel to the fire was the fact I’d switched to annual  scans half a year early, so if I were to postpone  even further, that could’ve possibly meant a year & a half between scans - NOT good when your sarcoma was high grade with nomograms predicting a more than 50% chance of metastasis within 10 years!

In the end, I decided to go, having my mom drive me, which was a lot safer than taking local transit ride sharing options, as she is part of my cohort & we only see each other. Still, I insisted she stay in the car just to keep her as safe as possible.  While she insists on doing her own grocery shopping, going into a hospital or clinic is a whole other story.

Prior to my scans, I had the usual pre-CT bloodwork.  Words cannot express how impressed I am with my local healthcare’s response to COVID-19 & efforts to keep the rest of us safe who still require medical care.  Not only was there a guy screening people as they entered, he also held the door for me & squirted sanitizer into my hands, so I didn’t have to touch anything!  As the queen of Purell, this made my day!  Once  inside the clinic, they were kind enough to exchange my mask for a newer one, as I was wearing one left over from my post-chemo days.  It was a fresh one, of course, but I wasn’t sure if they expire and neither were the clinic staff, so we figured better to be safe.   Next I was whisked into the back room straight away to have my blood-work done, so I didn’t even have to sit down in the waiting room - something I would’ve been reluctant to do anyway.

Of course, all staff wore PPE, which made me feel more at ease about being there.  At that time, estimates of COVID deaths were between 1 to 4%.   Coming to terms with my own mortality over the past five years being a cancer survivor  has been enough to wrap my head around, never mind the added threat of a pandemic not only to myself but my loved ones.  So yeah, I’m a big proponent of PPE.  Even if you don’think you’re likely to catch it, wearing PPE could be the difference between life & death for someone around you, be it a parent, grandparent or those with compromised immunity.

Two weeks later, came all my imaging appointments, ALL in one day!  First time in five years that’s ever happened, as they’re usually spread out on multiple dates & locations!  It made for a long day, but it was nice to get them all over & done with - or so I thought.  More on that later.  Entering the hospital was quite the experience.  Unlike the clinic which had just the one checkpoint, the hospital had three!  First came the screening questions, next the contactless temperature check, and finally the hand sanitizer station!  Other than the PPE-clad entourage at the one of only two entrances that were open, the halls were unusually bare.  The only other people there - and I do mean the ONLY people - besides essential medical staff & workers were those with appointments & in-hospital patients.  No visitors, no one wandering the hallways.  Basically, you went in, did what you came for & got OUT, which suited me just fine.  The less time spent there, the better! Which reminds me...  The Friday before my scans, I got a call asking if it’d be okay if they moved them closer together, so that I didn’t have to spend three hours between scans at the hospital.  Naturally I jumped at their offer!

Like the clinic, all the CT & MRI techs wore PPE as well, and I was even allowed to wear my mask  during my MRIs, which was a relief,  as they often make you remove certain types of clothing, usually items with metal such as zippers & earrings, but still, I wasn’t sure if the tiny metal wire in my mask would be an issue.  Fortunately, it wasn’t.

Finally, two weeks after all that, I had my telephone consult - albeit not with my regular sarcoma specialist that did my surgery, which I was NOT thrilled about, but so far so good on my results.  However, my CT  suggested thyroid nodules increasing in size, despite the measurements quoted indicating the opposite, which is odd.  Still the radiologist suggested additional elective imaging.  Although the oncologist agreed to proceed just to be on the safe side, it was ONLY because I pointed it out! You see, there is a reason I was not happy to get that particular doctor!  He’s the one I got once before when mine was away who prefers as few scans as possible, so had I not read my own results, this could’ve been missed.  He was more than happy to say everything is fine & leave it at that in spite of the radiologist suggesting further imaging.  I’ve heard numerous stories from fellow sarcoma patients & survivors who’ve had to fight for additional scans, and it has saved if not prolonged their lives.  I’ve said it before, and I’ll say it again, BE YOUR OWN ADVOCATE!  READ YOUR OWN SCANS!  That being said, thyroid nodules are only found to be malignant 5% of the time, so there’s a 95% chance they’re benign, plus it’s a region MRCLS rarely spreads to.  Consequently, I’ve made a point not to worry too much about it - something I’ve gotten better at over the past five years, I must say!  Still,  I’d rather air on the side of caution, as there have been a few  very rare cases of MRCLS spreading to the thyroid, and what if I’m one of the unlucky 5%?   Being a sarcoma survivor, I’m already a walking-talking rarity with a lifetime of beating the odds, so best to rule it out.

Fast-forwarding six weeks - had my thyroid ultrasound a few days ago, and once again, the waiting room was a ghost town, with the added touch of “seat unavailable” signs on every second & third chair to encourage social distancing.  Even during my ultrasound, I was able to wear my mask, despite the thyroid being located in the neck.  I just had to move the bottom of my mask up a bit.  I’m also very happy to say, the ultrasound was relatively painless - in other words, it wasn’t an internal ultrasound like the ones I had for my ovarian cysts they’d  been monitoring, which, by the way, have substantially shrunk for the first time in five years - something I attribute to my recent adoption of IF. More on that in an upcoming post.  However, it wasn’t without some discomfort, as the tech had to press down on my thyroid a number of times - an irony that was not lost on me nor the tech, as I‘m of mixed race & details of George Floyd’s murder by a police officer had recently come out.  I couldn’t help but wonder with heartfelt sadness about his last moments all throughout my scan.   Your death was not in vain, dear George, as the world is finally really HEARING & acknowledging the racial injustices going on over the past 400 years.  R.I.P., Mr. floyd. 🙏🏽 #BlackLivesMatter

The following week, I picked up my  results to discover two of the nodules need even further testing.  As a cancer patient & survivor, you get used to having to play the waiting game, so here we go again.  While I have numerous nodules, they noted four in particular,  presumably the largest ones.  While two  don’t require followup, the other two unfortunately do, with the largest being recommended for biopsy & the other with followup scans in a year.  Great...NOT!  While my initial biopsy of my thigh five years ago didn’t hurt, the needle going into my muscle sure did!  As you can imagine, I’m even less thrilled at the thought of having a needle poked into my neck! I’ll be awake for the procedure, but the sarcoma nurse assures me I’ll have local anesthetic.  Here's hoping the discomfort will be minimal!  Luckily, I’ve experienced local anesthesia before, including major surgery, so I’ve got a rough idea what to expect.

In case you’ve lost count, it’s now been two months since my first batch of annual scans & I still don’t know if everything is okay!  My biopsy isn’t for another month, just passed what is hopefully my fifth anniversary of NED (no evidence of disease).  As many before me have said, sarcoma is a marathon not a sprint, so in the mean time, I’ll just hold on to that 95% chance everything is still okay & hope for the best belated NED-aversary a lumpy girl could ask for!



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