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!  :)


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Sarculator! There Truly Is an App for Everything! ;)

03/07/16 - Oh my...  After my earlier post, I decided I should make a long overdue appearance on the Liposarcoma Survivors Facebook group I belong to, and I stumbled upon this gem!

The Sarculator App - an iOS & Android app for predicting sarcoma survival rates at five & ten years!  Now I truly have heard it all!  There is an app for EVERYTHING, LOL!

It's intended only for physicians, but YOU KNOW any sarcoma patient or survivor who's also an information sponge will download it anyway! ;)  Unlike the MSKCC nomogram my oncologist dismissed because it's based on only one treatment centre, this app is based on data from three treatment centres!  I literally laughed out loud when I saw this!  If only I'd checked the group the day before, I could've brought this into my oncologist as well!  I have a feeling he would've said the same thing he did about the other nomogram, but still...  I think I'll send him the link just for fun!  ;)

Interestingly, the five-year survival rate results are identical to the MSKCC nomogram, but the 10-year survival rate is quite a bit higher in the app than the MSKCC's 12-year survival rate, which supports what my oncologist was saying about trusting the five-year results but being wary of the 12-year results.

The app also gives five & ten-year probability of distant mets, which the MSKCC nomogram doesn't specifically get into.  We're discussing on the FB group whether or not one would want to know this kind of stuff.  Some people would rather not know, while others have the same line of thinking as I do, and that it's useful for making some important long term decisions, but don't let it run your life.  Take for example, saving for retirement.  Before I had cancer, I was saving & planning like someone who had another 40-50 years to live & another 25-30 more years till retirement.  Now, I know, there's a higher probability I'll have to retire sooner, etc...  So, obviously, I'm going to be more cautious in how i plan for retirement. Another thought I had was about pets.  I currently have several dogs.  When the older ones pass on, I had originally planned on getting another one to keep the younger company.  Now I may not do that, because they're the type of breed that lives a long time.  If I draw the unlucky end of the straw, I want to make sure he can easily find a home if my family isn't able to have him for whatever reason.  Much easier done with one dog rather than two or more.

Then again, I am a planner, and knowing the stats gives me some sort of comfort.  Although I can't control what the future holds, I can control how I live my life & the decisions I make, an as they say, knowledge is power.  Planning has allowed me to keep a roof over my head, despite being faced with cancer AND losing my job all in the same year, so it's worked for me so far!  Better to be prepared than burying my head in the sand & pretending life is all ice-cream & lollipops!


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How to Get a Reaction Out of Your Sarcoma Specialist - Ask About Nomograms! ; )

03/07/16 - First things first, today’s news re: my chest x-ray & MRI was GOOD!  :)  Still no mets eight months after surgery!  :)  Phew!!!  What a huge relief!  Second, my oncologist is a wonderful surgeon, and today, I told him so.  I’ve read about several extremity myxoid liposarcoma survivors with post-surgery complications, such as needing wound vacs, infections & still having major edema long after surgery, and I was lucky enough not to have any of those issues.  The significant edema I had up till two months after surgery has all but disappeared & is just very mild now, so life is good. :)

Third, although my oncologist is a wonderful surgeon, his listening skills could use some work!  Last time I saw him in November, I reviewed my surveillance plan with him, and I said to him, “Okay, so I’m getting an MRI every six months, an x-ray every four months & an pelvic/abdominal scan annually?” and he said YES!  Today, he changed the plan on me.  He is always in such a rush, sometimes I don’t think he properly hears my questions. :(  Having worked in customer service for nearly two decades, my job was to be a good listener, so...  My mom goes with me each time, and she agrees, though today he was a bit better, as they weren’t nearly as busy as they usually are & I got about twice as much time with him than I usually get.  But getting back to my surveillance plan, we’re going to do everything annually EXCEPT for the chest x-rays, which we’ll keep as every four months.  The rest we’ll scatter throughout the year, so that my body isn’t exposed to a whole bunch of radiation all at once.  Also he’s adding the bone scan back into the mix.  Not sure if he’s doing this because of the discomfort in my ankle & the pain in my arm or if he would’ve prescribed that anyway, but that’s the plan for now. This, of course, drives the planner in me nuts, because I like to know what I’m having & when I’m having it.  Now I get to be surprised, so I’m just going to have to learn to live with adventures in scan land, LOL!  :p  He feels doing an MRI more frequently could do more harm than good, due to the extra exposure to radiation.  He is still adamant that 90% of mets cases with myxoid round cell liposarcoma involve the lungs either with or without mets elsewhere. That is why he’s so set on concentrating on the lungs & just doing everything else annually.  Last but not least, that liposarcoma nomogram…

Boy did he have a reaction to that, but he made some very good points.  Despite the nomogram coming close to the prognosis some of my fellow survivors were given from their sarcoma specialists, he said the 12 year prognosis prediction of the nomogram is no good, because the sample size of the research is just too small.  If it was a breast cancer nomogram, the nomogram would be more valid, because of the huge numbers of women who get breast cancer, so the research data is much more reliable.  However, he did say that the five-year liposarcoma survival prediction is accurate, so long story short, for a large, high grade tumour like I had, there’s a 40% chance of mets within five years of surgery.  Despite all that, he asked to photocopy the nomogram, so that he can go on their website & play around with it.  Last point, he said that the nomogram can do more harm than good, because if an insurance company got a hold of it, they could try to deny coverage even after the five year point.  Right now as it stands, if you go five years without a recurrence, insurance companies consider you “cured” of cancer. Oh, one final point he made about the problem with many of these studies is that there's a lot of controversy even in the medical community about how sarcomas are classified, so what may have been considered round cell myxoid liposarcoma 10 years ago may not be now, etc…  He just really felt the nomogram in this case does more harm than good.

That’s about it for now.  Not sure yet when my bone scan will be, but I believe they’ll give me a date soon, as it’s been nearly a year since my last one. Here’s hoping that scan will be just as uneventful as my MRI & x-ray!  :)  Till then, enjoy everyday for even the little things & don’t be afraid to follow your dreams, because life can change in an instant.

PS - Damnit, he never did clarify tumour burden, but I guess it’s a moot point now since I’m going to forget I ever read that nomogram!  I will, however, leave the link up, so you can ask your own oncologists about it.  If you do, please be sure to share in the comments section below what they said. I’d love to compare notes!

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Hoping for the Best

03/05/16 - It's that special time again. Where have the last four months gone?!?! My next oncologist appointment is on Monday to discuss my  latest chest x-ray results from six days ago and my MRI from January. I know the MRI was all good, but I'm going to wait till Monday to find out about the chest x-ray. That darn scanxiety is starting to creep in again now that I'm at the eight month post surgery stage. I read somewhere that 90% of metastases with myxoid liposarcoma  occurs within the first two to three years, and often you feel fine and have no symptoms which doesn't really help matters! But I've had some odd aches and pains, which I hope are nothing, but when something like this happens, you become paranoid that it's something more. If you've read the beginning of my cancer journey, you will understand why this is exacerbated in my case. Crossing all appendages that everything is fine, so I can have four glorious months of no scans! Because my three types of scans are all at different intervals, sometimes I have as little as two months between scanned and other times I have as much as four months between scans. I can't wait to get to the two year point where two out of my three scans are every six months.

Meanwhile, I have been keeping super busy with my new blog and YouTube channel dedicated to talking tech from a visually impaired perspective. I swear, I work more now doing that than I ever did working for money, lol! But at least it keeps me busy and keeps my mind away from that dark place. But the chances of Youtube paying the bills anytime soon is pretty much non-existent, so I have started the ball rolling on resuming my job search. The job market still sucks big time where I live, so at least I have other things to keep me busy, otherwise I would go crazy.!

We've had really nice weather this winter, so I've even managed to get out on some walks  with my dogs, which has helped to further strengthen my leg. Amazingly, I feel stronger going up the stairs now, which I have no idea how that happened since as of January 1st, I totally fell off the physiotherapy bandwagon, and have been a bad girl and not done much of anything the last two months as far as physio goes! I think I finally just got to the point where I'd had enough after five months of daily physio and just wanted my life back! I have regained enough strength in my leg to do pretty much everything I want , though a bit slower than before, and the remaining issues with my leg will probably be there for a lifetime. I am skeptical that physio will do much more for me now at this point.

Back to my appointment this Monday, I'm printing that  liposarcoma nomogram as I type this, so I can finally ask my oncologist what his thoughts are on it, and once & for all get an answer as to how to calculate tumour burden!  Some of us on the FB support group have been dying to know - ok, bad choice of words! - we've been REALLY wanting to know how to properly calculate it, so that we can fill in the nomogram properly.  Some definitions suggest taking the largest dimension of your tumour, while others say to take the two largest dimensions.  So, for instance, my tumour was 25x13x8.7cm, so 25=38 = my nomogram sucks for the 12 year prediction survival rate, but (38%) but at least I have a 63% chance of making it five years.  Um, yay?  One thing this nomogram doesn't account for is radiation, though, as not all patients had radiation, if memory serves right, but some did, so even though they didn't measure it, it's still a part of the picture in a way, so I am very eager to hear what he says on Monday.  I am well aware with stats, though, that you have a 50% chance of outliving them & a 50% chance of not.  Hell, one of my dogs has a heart condition where he was given six months to two years & it's been over two years & he's still with me.  He can given do stairs still & sometimes does mini play sessions.  So, I've seen with my own eyes that stats aren't everything, but it  would still be good to know.

Cross all of your appendages for me that Monday goes well!

Coming Undone & 2015 Farewell - Processing the Flood of Emotions When Treatment Ends

12/31/15 - Well, it’s New Year’s Eve as I write this, and boy am I glad to see the back of 2015!  When I spoke with a counsellor soon after diagnosis, she told me she often sees patients return towards the end of their treatment, and it’s only now that I’ve gained enough insight to understand why.  The past few weeks have been an emotional roller coaster, as I cope with the anxiety & fears of a possible recurrence, wondering could this be my last Christmas & if this is just the calm before the storm.  I realized the other day that I pretty much jumped straight from physiotherapy into socializing three times as much as I’d normally prefer out of fear.  Fear that it’ll come back, and with a vengeance.  Fear that funny little lump on my elbow that i never noticed before is an early sign of METS.  Fear that  little dry cough is also a sign of METS.  Fear that I won’t be around in ten years.

Adding fuel to the fire, a fellow survivor found a research-based nomogram by the Memorial Sloan Kettering Cancer Centre that shows estimated survival rates specifically for liposarcoma patients, and it appears that resident physician (the one my oncologist initially had answer my many questions because he was strapped for time) may not have been as forthright about survival rates as one would expect.  Remember, this is the resident who gave me my grade instead of my stage, plus she’s the one who told my mom & I she’d be right back but then never returned!  So, needless to say, I don’t have a lot of faith in anything she’s told me.  But back to the nomogram…  It made me realize, I probably don’t have as much time left as I was originally lead to believe.  I mean, I pretty much figured that anyway due to my high (>25%) round cell component, but it appears the survival rates for even those with as little as >5% round cells are reduced.   And while the realist in me knows I could always die of something else, like a car or a plane crash, it’s still quite daunting realizing that if nothing else takes me out, the cancer most likely will, even if it’s years down the road.  The chances of a recurrence or distant metastasis are fairly high.  So, even though I’m clear now, it could be waiting in the wings & show up in my lungs a few years from now.  I can deal with that, but  I just want the truth out of my medical team.  So, I definitely plan to show my oncologist the nomogram when I see him in March.  I realize some people wouldn’t want to know, but being single without a spouse to fall back on, I need to know how I should prepare for the future.   For instance, is retiring in 20-25 years even a realistic possibility, or should I be saving like someone in their 70’s who’s likely only got an average of 10-15 years left to live?

Another thing that’s knocked the wind out of my sails lately is “survivor’s guilt”.  Last week there was a news story about a 22-year old woman that lost the love of her life a month earlier when he passed away suddenly of unknown causes.  Meanwhile, she, herself, was dying of stage four osteosarcoma in her leg & her last wish was to make it long enough to be able to hold her yet unborn baby.  Well, she made it, as her son was born Christmas day, but that baby will never know either of his parents.  Yet here’s me with no children, other than the four-legged kind, and no significant other, yet here I sit cancer free.  Don’t get me wrong, I am grateful, but what the hell is the universe thinking???  If I wasn’t an agnostic-atheist, I’d swear the angels got our paperwork mixed up! Fortunately, I was quick to reach out for support from the online liposarcoma group I belong to, and it appears I am not alone with this paradoxical range of emotions.  This knowledge alone brings me comfort & takes the edge away from this whirlwind of ups & downs I’ve been feeling lately.

Offline, I've tried sharing a bit about these post-treatment emotions with a few close friends but it was obvious they just didn't get it.  After all, how could they?  Only those who’ve had cancer themselves can truly understand.  It's for this reason, I’ve noticed myself starting to hold back with friends and family about how I’ve been feeling - quite the opposite to when I first began my journey.  They have moved on now that I am cancer free, but for those of us who’ve faced cancer directly, “cancer free” is a bit of an oxymoron, because once it’s touched you, you’re never truly “free”.  It’s always in the back of your mind, and there isn’t a day that goes by where you don’t think about it, even if it’s just briefly.  If forever changes your views on life, for better or worse.

Speaking of holding back, I've decided to be more selective with whom I tell in person about my having had cancer.  i have lost count of the number of times I’ve heard “Oh…BUT you look good!” after telling someone I’m a cancer survivor when they ask about my leg.  I’m not a small girl, so although I lost weight due to stress & lack of appetite, I don’t look like the stereotype people have of what a cancer patient should be.  On top of that, despite loosing a lot of hair, I never did go completely bald.  It just looks like I got a major haircut.  So, to anyone reading this who’s never had cancer themselves, please note that what we as past & present cancer patients hear when you tell us “Oh…BUT you look good...” is “Oh…you don’t LOOK like you had cancer!”  Seriously people, stop & think before you open your mouth! :p  On the other hand, I’ve met a few fellow survivors in the real world by being so open, so choosing to be less so is bit of a double edged sword...

Last but not least, the thought of returning to work…or in my case, looking for a new job for the first time in over a decade after being laid off sent my anxiety so sky high that I’ve decided to take one or two more months to truly relax before starting my job search.  Sure, some people might think being on medical leave for eight months would be enough of a break, but it’s been anything but relaxing.  So, I’ve decided to be good to myself & give myself this time to properly unwind. For one thing, doing so will help me to be more resilient once I do return to work, and it’s not like I’ll ever get this kind of free time again, unless well…you know, but then that will be anything but relaxing!  So, the first week of 2016, I plan to spend in my pyjamas! :p  Then I plan to continue my endeavours of learning the ukulele & lose myself in my e-books.  I also want to work up to riding my elliptical for five hours a week.  Right now I’m at three hours a week.  I want to find that wonderful balance I once had between my introverted “me time” & hanging out with friends.  I'd also like to do a bit of soul-searching as to what I want in my next job & employer.  While I’ll likely end up in a similar line of work, I don’t want to just settle for the first thing that comes along.  Life is too short to spend it working for a company that makes you miserable.  Most importantly, I plan to enjoy this extra time with my fur-kids (my dogs), as one of them has a health condition which will eventually end his life.

Still, even once I do resume said job search, the job market right now in my province is pretty tight.  To say we’re in a recession here would be an understatement.  So, whether I like it or not, it could be quite a while before I manage to return to the workforce.  This presents another challenge, as many other survivors I’ve chatted with online say returning to work really helped.  But what if there’s no work to return to?  I might look into volunteering in the spring or summer if something still hasn’t cropped up by then or those elusive tour dates I’ve been waiting for still aren’t announced, but for now…pyjamas!  Yes, pyjamas!  ; )

*[NOTE: Post title inspired by the Placebo songs "Come Undone" & "H.K. Farewell", which can be found on their "Battle for the Sun" & self-titled debut albums respectively.]