Flashbacks ARE Real for Cancer Survivors

06/08/17 - Where has the time gone?! With three months already passed since my last round of scans & my next batch, a month away, I guess it’s time for an update!  Since my last post, between scans & the emotional effects of the past two years, I've really ramped up my efforts to rejoin the hamster wheel, and also took a bit of a social media break for an entire month before my last scans, just to focus on other things.  After the recent passing of several fellow myxoid/round cell warriors in the online support group I belong to, it was time to take a step back for my own sanity.

My visits to the sarcoma clinic are always “interesting”, so last time was no exception! Thanks to construction, we ended up taking a shuttle from the parking lot over to the cancer centre, which just happened to drop us off at the doors where radiation patients go - an entrance I hadn’t used since treatment. Now, I had heard of cancer survivors experiencing flashbacks of emotion during visits to the cancer centre but had never experienced it to this extent until this last visit. Scans are always an emotional time for any cancer survivor, but words cannot express the flood of emotions that rushed in as we walked through the waiting areas & halls of the radiation department. As if that wasn’t enough of a trip down memory lane, we then found ourselves walking through a hallway I hadn’t seen since my surgery to remove my sarcoma two years ago. To say that added to the anxiety was an understatement. On top of all that, for the first time, I had my chest x-ray at the hospital itself the same day instead of in advance offsite, so no peaking at results ahead of time! Between the flashbacks & scanxiety, it was a bit much to take, but I got through it. Fortunately, all my results were clear, so that was a huge relief! On our way out of the hospital, we walked right past the spot where I sat two years ago when I told my mom over the phone, I had cancer. Just one last dose of flashback for good measure, I suppose!

Of course, it wouldn’t be a proper meeting with my oncologist without changing SOMETHING with my scans yet again, LOL, so here is the latest! Per my request, he agreed to reinstate my abdominal ultrasounds (but not the pelvic ones, thank god, since they always had to do an internal one on me!), but he did advise, ultrasounds are not as sensitive as my annual CT scans. However, since we’d been doing them every four months, I wasn’t quite ready emotionally to give them up, so it’s really just for my own sanity that he reinstated them. The second change is due to some increasing pain I’ve had in my sciatic region/surgery area. He’s switching me from annual bone scans to a spinal MRI instead, which I have in just under a month. He said that they’re finding spinal MRIs to be more effective in finding bone mets in the spine. I’ve been doing some reading about spinal mets lately, and the research indicates that spinal mets are one of the most common sites of distant metastasis for myxoid/round cell liposarcoma patients. So, this is a good thing he’s added this to my roster of scans, but of course, since it’s new for me with higher sensitivity, cue in the increased anxiety that they’ll find something the bone scan missed. Sciatic pain asside, many liposarcoma patients with spine mets experience NO PAIN WHATSOEVER, so if your oncologist is only willing to do an MRI if you have symptoms, tell them to think again & insist they order at least one spinal MRI. The only time liposarcoma tumours cause pain is when the tumour presses against a nerve, and this is EXACTLY what happened to me with my first tumour. But to quote a fellow survivor, hopefully it’s just “creakedy old lady back" & nothing more! :)

In other news, after being laid off my job of nearly two decades while in the middle of cancer treatment two years ago, I am finally making some headway & was recently advised I was successful with one of my applications! I am so excited yet so nervous! After being off the hamster wheel for so long, it will be good to get back to some sense of normality. Now let’s just hope my next batch of scans doesn't throw a wrench into things! I busted my backside to get this job, so if my scans mess it up, I will be utterly devastated. And of course, as Murphy’s Law would have it, my favourite band just announced a whole bunch of tour dates, which I probably won’t be able to go to! Despite that, I'm practically having to hide from my computer to avoid buying tickets! Part of me wants to buy tickets just in case the new job falls through, but the other part is resisting the urge, just in case the new job or next batch of scans prevent me from going! Ugh, decisions, decisions! :p #FanGirlProblems! ;)

On a related note, one of the things I’ve missed most since being laid off is being able to help people. When I approached both the Canadian Cancer Society & CNIB to volunteer last summer, I was advised they were both undergoing restructuring & asked to check back in about six months. How ironic is that? I was laid off due to restructuring & turned away from volunteering for the same reason! So, with this year being my second birthday in remission, I decided to take matters into my own hands by raising $200 for charity - $100 for each year in remission! My goal is to achieve this by July 10th, which will hopefully be my second anniversary of being in remission! It’s through Canada Helps (registered charity, BN: 896568417RR0001), and funds will go to The Sarcoma Cancer Foundation of Canada, Wellspring, Humane Society & Canadian Chihuahua Rescue & Transport. By my birthday, I was already at 87% of my goal, so I’m almost there! :)

Another thing I've done to help spread sarcoma awareness is FINALLY purchase one of those sarcoma awareness t-shirts for both myself & my mom!  The slogan sums up so well the experience of everyone effected by sarcoma "We don't know how STRONG we are, until being strong is the ONLY choice we have!  Sarcoma awareness". 

Well, that’s all for now until my next update in July, which will include my next batch of scans - the spinal MRI, abdominal ultrasound & chest x-ray. Also, since there will be no time off for the first few months of my new job, I’m going to see what my oncologist thinks of changing my appointments/scans to every six months. Quite ironic, since I nearly had a stroke during my last appointment when he accidentally thought we were already at six month intervals! Previously, he'd suggested sticking to four-month intervals until the THREE year mark, so you can imagine the panic that set in at the thought of fewer scans at just two years. Since then, I’ve actually come around to the idea, so we shall see what he says!

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.

THIS MESSAGE COULD SAVE YOUR LIFE!

02/09/17 - If you or someone you know notice a firm swelling or mass in your leg, get it checked out just to be on the safe side. It could save your life. Two years ago today, my life changed forever when my mom was finally able to see the 25 x 13 x 8.7 cm mass in my posterior left thigh. I spent nine hours in emergency two days later while they were checking to see if it was a blood clot, but [insert Arnold Schwarzenegger voice here] it was a high-grade malignant tumour! Can't believe it's been two years already!  Sarcomas are often discovered only once they become quite large, as they exhibit little to no pain so I can not stress enough, if you feel like something isn't right, GET IT CHECKED OUT! 80% to 90% of myxoid round cell liposarcoma recurrences & distant metastasis happen within three years of surgery. Case in point, our small group of lumpy alumni recently lost two MRCLS survivors over the past two months, so i'm feeling very relieved, not to mention grateful, to have reached the halfway point as of last month! 😌🎗🙏🏼

Many doctors are not familiar with sarcomas & some never even see a case in their entire lifetime. Because of this, sarcomas are often misdiagnosed as lipomas & removed by non-sarcoma specialists (even by well-meaning oncologists who have no experience with sarcomas), resulting in numerous complications, extra surgeries & increased rates of metastasis. So, if you've been diagnosed with a lipoma, get a second opinion, preferably from a sarcoma centre. It may be nothing, but better safe than sorry!

On a side note, I'm starting to feel a bit better about my current surveillance schedule, which has been less frequent when compared to my American counterparts. This article, "Followup in Soft Tissue Sarcomas", presents a European perspective on sarcoma surveillance, which pretty much mirrors everything my oncologist has been telling me for the past two years. As many of the online support groups are very US-centric, I have really struggled with the less frequent scans offered by our public healthcare system. So, if you're outside the US & also having to deal with the fiscal constraints of a public healthcare system, you'll want to check out the above mentioned study. :)


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MSKCC Liposarcoma Survival Nomogram Update & Clarification

02/06/17 - Great news!  The sarcoma team over at Memorial Sloan-Kettering Cancer Centre in the US has finally updated their liposarcoma survival nomogram with a very clear definition of tumour burden, in particular what dimension to enter if you only had one initial tumour.  There was a bit of confusion over on the Liposarcoma Survivors FB group as to how best to enter the data for this, so this clarification is much appreciated! :)   As a result of this clarification, it has improved my projected outlook a bit for both the five & twelve-year disease specific survival rates to 74% & 55% respectively. :) The only time you need to add up the largest tumour dimensions is if you had more than one tumour at the time of diagnosis, so if you only had one initial tumour & entered the two largest dimensions of that one tumour, you'll want to re-enter your data for a more accurate result.  Oddly enough, my oncologist originally agreed with the five-year estimate using the two largest dimensions of my one tumour, but hey, if MSK is now saying just use the one largest dimension, I'll more than happily take 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.

#WorldCancerDay

02/04/17 - Today, February 4th, 2017, is #WorldCancerDay. This day is near & dear to my heart, because not only am I a recent high grade cancer survivor, my grandpa is a two-time cancer survivor, my grandma, great grandma, first love, best friend's mom & a coworker all died of cancer. So, for me, it's personal.

Each year 12.7 million people around the world discover they have cancer. 7.6 million people die of cancer each year worldwide. In 2016, it was estimated that there would be 202,400 new cases of cancer and 78,800 deaths from cancer in Canada during that year alone. Broken down further, on average, 539 Canadians are diagnosed with cancer each day and 214 Canadians die daily of cancer. Cancer is the leading cause of death in Canada and is responsible for 30% of all deaths.

Although survival rates for all cancers combined at the five-year mark are 60%, only one third of cancer cases can be "cured" if caught early enough, leaving the remaining two thirds to face metastasis, recurrence or distant metastasis. The five-year disease specific survival rate (i.e. not dying from the disease) for lung cancer is 17%, whereas prostate cancer and breast cancer are 95% and 87% respectively. For soft tissue sarcomas (of which there are 50-70 subtypes, including liposarcoma), the five-year survival rate is 56%. With extremity round cell myxoid liposarcoma (the kind that I had), the five year survival rate is estimated to be 60% (as confirmed by my oncologist and several liposarcoma nomograms but estimates range from 57% to 74% depending on which study you read...#ChallengesOfHavingARareCancer). It drops down to 50% at the 10 year mark, whereas in contrast, the 10 year survival rate is 83% for breast cancer and 98% for prostate cancer if non-metastatic at the time of first diagnosis.

Over the past few years, deaths from cancer across Canada have gone down, but there's still a long way to go. Here's hoping that one day there will be a cure for ALL cancers, not just the more common ones but the rare ones, as well.

References:
www.cancer.ca
www.cancer.net
www.cancer.org
www.mskcc.org/nomograms/sarcoma
www.sarculator.com
www.sarcomahelp.org


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.

Update: MRI Results

01/24/17 - Yay!!! Just got my 18 month post-surgery MRI results, which read: "No evidence of residual or recurrent disease"!!!!!!!! It also said although my edema is persistent, it's improved over a year ago, so even more awesome news! Phew! So relieved! Next up as my chest x-ray in March. It was supposed to be February, but today I was informed, they've cancelled all the appointments on the day I was originally scheduled for. Ugh, not exactly thrilled about that, but what a relief it was to read those seven beautiful words! Six more months till I reach that much anticipated two-year mark!

Well, that's the good news, now for the bad news.  It seems my recent trek across the UK has taken its toll, as the report mentions an "Incidental small left knee effusion with mild synovitis", which I assume explains why I constantly feel like I have a sponge in the back & side of my knee but even more so lately. On the bright side, at least mine's not painful, because according to Dr. Google, it often can be. I've been taking it really easy upon my return home, so hopefully it won't get any worse.

Of course, this wouldn't be an update without my local healthcare system driving me crazy (again), so here's the latest! Contrary to my discussion with my oncologist last time, it appears he's axing my ultrasounds altogether, not just for my ovarian cysts, so now I'm only getting an annualCT scan instead of checking for distant metastasis (pelvis/abdomen) every four months. Considering most other major sarcoma centres recommend scanning the abdomen & pelvis every three to four months, I am needless to say not very happy about this, however, at this point, I just don't have the energy to fight. On the bright side, at least I'm still GETTING CT scans. I've read of some UK sarcoma survivors only getting Chest x-rays & no other scans, so it could be much worse. Just to clarify, this is my most up to date surveillance plan, unless of Course they go & change it on me again! Every four months: chest x-ray, annually: MRI (thigh) & CT (chest/abdomen/pelvis). I really wish they'd make up their minds, but oh well! Feeling very grateful for NED (no evidence of disease) & really looking forward to that two-year mark! Five months to go!!!


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"Carve Your Lyrics Into My Arms" - Coping with the Power of Music

01/23/17 - Something strange happened the week preceding my last MRI scan.  Finally, after a year & a half of much debate & stress over how often my MRI’s should be scheduled, I found myself feeling surprisingly relaxed, whereas normally a healthy dose of “scanxiety” would kick in.  Perhaps it was due to the fact I’d just returned from my fangirl trip of a lifetime, or perhaps it was due to the fact I’d been sick for nearly two months & was simply ecstatic to finally be over what I now believe was the RSV virus (a severe respiratory infection, often mistaken for a heavy cold). Whatever the reason, for the first time in the year & a half since this medical rollercoaster began, I just felt calm.  Could it be that I am finally getting the hang of this being a cancer survivor thing?  Even when I learned receipt of my results would be delayed due to the absence of my oncologist’s administrative assistant, I wasn’t phased.  My realistic self rationalized, if there was a problem, they would’ve had somebody else call me into the sarcoma clinic, so surely they must be fine.  Right?  Right!  I hope…

Well, that was all three weeks ago, and alas, it was a good run while it lasted, but now that the assistant is back at work today, I can feel this doubts creeping in ever so slightly, although much less than with previous scans.  I don’t think it’ll ever go away completely if I’m honest, but it’s been nice having that peace of mind.

Meanwhile, my fangirl trip of a lifetime was everything I’d dreamed & more!  The trip was to see my favourite band Placebo for their 20th anniversary tour all over the UK & Ireland, but for me it meant so much more.  Not only have I been a fan of the band for 20 years, there were times during my battle with sarcoma when the only time I felt true comfort was while lost in the music of Placebo.  Even once I progressed to five months of physiotherapy, Placebo was my soundtrack every wobble along the way.  In fact, I still have my Placebo inspiration board up on my elliptical.  In addition to photos of the band from past shows, it also includes a marquee of the band’s name in lights & a photo of me with friends on the barrier at…you guessed it…another Placebo concert!  Long story short, they were instrumental in getting me through one of the most difficult times of my life.  Now not only have I come out the other side, but I made it through the trip that meant so very much to me, and I even got my second chance to meet the man who is positively my most favourite human ever to grace a stage.  As if that wasn’t fantastic enough, he actually remembered me from when we’d met two years earlier, and he remember where I’m from!  Needless to say, I was & still am on cloud nine, and ready to deal with whatever life throws at me.

Now here I am in 2017 still looking for my next big break on the hamster wheel, praying for “NED” (no evidence of disease), and a little uncertain of the future as a result, BUT I am here I made it!  I don’t know what the future holds, but I’ve learned I'm a lot stronger than I ever could’ve thought.

So, now I’m off to bed to try to get some sleep.  Hopefully, I’ll wake up to good news!

01/24/17 - Well, yesterday has come & gone, and the waiting continues…. Waiting, waiting, waiting…always waiting!  *Deep breath*. *Looks down at the Placebo lyrics etched in my skin*…”Breathe, breathe…Believe, believe…"

*NOTE: Title inspired by a line from Placebo's song "Every You Every Me" from Placebo's 1998 album "Without You I'm Nothing".

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.