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. :)


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.

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!!!


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.

"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.