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Showing posts with label nodules. Show all posts
Showing posts with label nodules. Show all posts

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. πŸ™πŸ½ #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!



Thanks for reading! :) If you enjoyed this post, please help spread #SarcomaAwareness by sharing it on Twitter or Facebook using the buttons below. You can also subscribe to this blog using the links on the left.

Have a sarcoma blog of your own you'd like linked? Feel free to drop me a line or post your link in a comment below. 

Friday, 28 October 2016

Don't Believe Everything You Think!

10/28/16 - After a not so mini-freakout earlier today when the emailing of my scan results was delayed, I finally received them late this afternoon. I was convinced the delay was because the results were bad & they didn't want me to know before my appointment in three days. Originally, I was going to wait till Sunday night to read them, so that if anything was concerning, I'd hopefully only lose just one night of sleep till meeting with my oncologist on Monday. But after 24 hours of increasingly worrying, my gut told me to just get it over & done with!

Great news!!! NED appears to live once again! NED = “no evidence of disease”, so unless they find something weird in my thigh which they haven’t scanned since January, I seem to be all clear!!!

I do, however, have a new ovarian cyst with thin internal septation on my left ovary (the cyst has divided in two within itself is my understanding of that) & I still have two right ovarian cysts that are stable. They're also continuing to monitor the sclerotic focus on the T3 in my spine & the nodule in my thyroid, which is 2mm bigger than the last measurement I remember but they are not concerned about it, as measurements can vary a bit from test to test & technician to technician. They once again noted the multi-level degenerative changes in my thoracic & lumbar spine, so I must remember to ask if that could be what’s causing inflammation near my sciatic nerve... Last but not least, chest & abdomen are all clear. YAY!!!

Now let's just hope the examination of my thigh is ok on Monday, but I think it will be. :) Soon relieved, if all goes well, I will have graduated to 16 months NED! :) :) :) It's been quite awhile, though, since my last MRI, so here's hoping he'll finally order a new one. I have since spoken to three other sarcoma specialists through an online group we have to connect patients & survivors with sarcoma specialists, and they all recommend MRI's every three to six months. Nearly TEN months have gone by since my last MRI.

As for my earlier panic attack! My brain goes extra nuts the week before scan results, so when I didn't hear anything, I put two & two together & made five! Need to take my own advice from a post I sent elsewhere yesterday, LOL! :p Extremely relieved doesn't even begin to describe how I feel right now! Time for some long awaited touring FUN! Culture Club & Placebo, here I come! <3

Thanks for reading! :) If you enjoyed this post, please help spread #SarcomaAwareness by sharing it on Google+, Twitter or Facebook using the buttons below. You can also subscribe to this blog using the links on the left.

Have a sarcoma blog of your own that you'd like linked? Feel free to drop me a line or post your link in a comment below.

Wednesday, 8 June 2016

Anniversary Challenges & Mixed Results

07/08/16 - Wow, can't believe three months have passed already! Yep, it's that special time again where I get to worry about my latest batch of scan results. But before I get to those which I have already received by the way, a bit about anniversaries. Whether good or bad, optimist or realist, pretty much every cancer survivor has an emotional reaction to their anniversaries of which we have many. First, there’s the diagnosis anniversary of when your world was forever changed. Then comes the anniversary of your first cancer treatment, be it chemo, radiation or surgery. Then, of course, there’s the all important one year anniversary of when you were deemed cancer free. While some celebrate their anniversaries, others find them quite difficult. To my surprise, I fell in the latter - at least for the first batch anyway (diagnosis & chemoversaries).  I say I was surprised, because most of the time despite my obligatory week of stressing prior to scan results, I usually do quite well. I keep myself busy and find things to make myself happy and enjoy this beautiful spring we've been having. However, about three days before my one year anniversary of being diagnosed, I suddenly felt very depressed. I didn't feel like listening to my favourite music, didn't feel like watching TV, didn't feel like being awake, didn’t feel like going out. Basically, I felt numb for three days, unable to move forward.  It wasn't until I forced myself to listen to my favourite music that I was finally able to shake myself out of it, at which time I flipped into super productive mode & got a ton of things done.  I continued to be fine until my one year anniversary of starting chemo, which was exacerbated by the fact my grandpa who also had a rare sarcoma five years ago now has a new cancer, mantle cell lymphoma, and his chemo started almost exactly a year to the day from when I started mine.  To say this messed with my mind would be an understatement.  According to the liposarcoma support group I’m on, sarcoma survivors are more likely to get other forms of cancer.  Seeing my grandpa make this a reality on my own chemoversary amplified that fear.  This time, it took me a week to pick myself up & snap out of it.  I think the challenge with anniversaries, is it brings everything flooding back, and you can’t help but wonder if or when it is going to rear its ugly head again.  You want to plan for the future but you don’t dare because you’re not sure how much of a future you even have.  But then, you dust yourself off, give yourself a shake & think about everything you’re grateful for & how things could be so much worse. Fortunately, that’s the mode I prefer, but every now & then you have those dark days, and for me, anniversaries seem to trigger those big time.  Hopefully, this will get easier with each passing anniversary.  From what I’ve heard from other survivors, the first year is the biggest hurdle, though. If I can make it to anniversary #3 in tact, then I will truly start celebrating, because I’ll be out of that high danger zone for distant metastasis.  Of course, there’s always be a possibility even after three years, but as I’ve mentioned before, if it’s going to happen, it’s usually within the first two to three years after surgery.

Now for my latest batch of results.  It’ll be another month before I meet with my oncologist, however, his assistant emailed me my results this afternoon. First the good news. From what I can tell, my pelvic & abdominal ultrasound’s plus my CT scan are all OK despite the addition of a second/new ovarian cyst, in addition to the previously noted lesions on my T3, thyroid & iliac.  There has been no change in size for any of them other than the addition of a second ovarian cyst, but it’s a simple cyst not likely to be cancerous.  Still, they are recommending it be monitored every six months.  Now for the bad news. It appears my bone scan is inconclusive due to the presence of low grade soft tissue uptake where my sarcoma was removed.  This is most likely due to the surgery or radiation treatment, HOWEVER because my original sarcoma ALSO showed soft tissue uptake, they can not rule out localized recurrence in my thigh at this time based on this bone scan.  The scan also shows degenerative type uptake in my shoulders, lower lumber spine, knees & feet, but there is no evidence of mets to the bones.  What this degenerative type uptake means, I don’t know but they’re suggesting followup.  Over the past month, I’ve been having pains in my right foot even while sedentary & have discovered a lump in the bone not far from where the pains are which isn’t replicated on my left foot, so I’m a bit concerned. I’ve also been experiencing pain in my right shoulder, but I’m hoping it’s related to a previous fracture or previous tendonitis or bursitis I had in that shoulder many years ago.  I’ve also had pains in my right knee, but that was injured at the same time my shoulder was, so again, hoping it’s nothing & that I just need to drink more milk!  But I’m worried about my leg. I’ve noticed over the past month or so that the edema seems to have increased a bit…  I’m going to press for an MRI sooner rather than later, and if he won’t request one, I’ll press my family physician for one.  Given the inconclusive bone scan, though, I’m hoping it won’t be an uphill battle to get an MRI.  I was never a fan of just an annual MRI.  I’d much ratter have one every six months if not every four months.

Now if only they could move my appointment up, but unfortunately my oncologist is going on vacation, so it’s not an option.  I asked if I could see the only other oncologist that specializes in sarcoma in my area but was told it’s better for my original oncologist to go over the results, since he’s more familiar with my case.  Meanwhile, I’ve asked if he’ll be ordering any other tests prior to my appointment, so here’s hoping for that MRI….  Stay tuned….  More info when I have it.


Thanks for reading! :) If you enjoyed this post, please help spread #SarcomaAwareness by sharing it on Google+, Twitter or Facebook using the buttons below. You can also subscribe to this blog using the links on the left.

Have a sarcoma blog of your own that you'd like linked? Feel free to drop me a line or post your link in a comment below.

Monday, 6 July 2015

Pre-Surgery Consultation

07/06/15 - Quick update.  Please forgive my lack of finesse in writing today.  Got less than four hours sleep, as the anxiety of everything is starting to creep up on me, but here goes… Saw my oncologist today for my pre-surgery appointment.  Everything’s on track.  The bug bite from hell, though slowly healing (my foot’s still more swollen than usual), won’t have any impact on my surgery.  He’s also not worried about all those nodules that came up, because everyone has nodules throughout their body whether they have cancer or not, so they’ll watch them & if any get beyond a certain size, they’ll take further action.  Re: my concerns about the >25% round-cell component, he says that it does NOT change my current treatment plan, so he is not overly concerned about it at this point.

As for surgery itself, surprisingly, it’s only going to take two hours & he aims to remove my tumour (aka “the alien”) in one piece, which will reduce the chance of it spreading.  I’ll be in hospital for about a week, possibly even less - yes, LESS!  I juste hope they don’t try to push me out of there prematurely just to free up a bed.  They’ll also do toxicology reports at the time, which will take two weeks to come back, if memory serves right.

I will have some physio in hospital, but considering I’ll have stitches still healing, not sure how much that’ll entail, aside from wobbling & hobbling around very slowly!  Oh, and thank god, there’s no requirement for a skin graft, which is a relief. He’s expecting my recovery time to be about three months, so hopefully I’ll be done before my short-term disability runs out, cause otherwise I’ll be in for a substantial income drop if I have to go onto long-term disability.  So, that’s pretty much it.  I have a pre-surgery preparation appointment via phone tomorrow morning, as well, and on Thursday I have to call for my surgery time.  I, of course, forgot to ask my oncologist several other questions, despite writing numerous questions down!  But it doesn’t really help when you forget to write the question down in the first place!  :p  Damn it, I’m so tired right now, I forget the questions I forgot!  :p  Can’t even come up with a Placebo lyric to go along with this post!  :(  Zzzzzzz...