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!


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. 

Myxoid Liposarcoma: A Letter to the Newly Diagnosed

04/07/19 - Hello, and welcome to the club none of us wanted to join.  If you’re reading this, chances are, you or someone you love has recently been diagnosed with myxoid or myxoid/round cell liposarcoma cancer.  I remember all too well how overwhelming those early days were, so I hope you find this helpful as you start  your journey with this rare cancer many medical professionals have never even heard of, let alone treated.  For that reason, it's important to arm yourself with knowledge & be your own patient advocate.

First, a bit about me...  Four years ago today in 2015, I was diagnosed with myxoid/round cell liposarcoma in my left thigh wrapped around my sciatic nerve,  invading my muscle. Mine was high grade with 25% round cell, measuring 25 x 13 x 8.7 cm.  I had 72 hours of chemo & 10 rounds of radiation, followed six weeks later by  limb sparing surgery & five months of physiotherapy.  My post surgery battle scar runs from my butt to the back of my knee, but at least I still have my leg & my life, so it could be worse!  I am by no means a medical expert.  The information below is simply a compilation of what I’ve learned from my own experience, my oncologist and the online liposarcoma community over the past four years.

If you haven’t already, please join the two main liposarcoma FB groups, where you will find more specific info for the myxoid liposarcoma subtypes.

• Liposarcoma Survivors

• Liposarcoma Q&A

There is also a Friends & Family Fighting Myxoid Liposarcoma FB group, but it‘s less active, since most of us are in the other two groups.

Please keep in mind, liposarcoma is one of over 50 types of sarcoma, and there are five subtypes of liposarcoma divided into three categories:

• myxoid [MLS] & myxoid/round cell [MRCLS]

• well-differentiated [WD] & dedifferentiated [DD]

• pleomorphic [PLS]

Each subtype responds differently to treatment, so it’s important to only compare yourself to others with the same subtype.  Also please note,  myxofibrosarcoma & myxoid chondrosarcoma are NOT related to any of the myxoid liposarcoma subtypes, so do NOT compare yourself to these sarcomas.

Myxoid & WD liposarcoma are low grade (less likely to spread), whereas MRCLS, DD & pleomorphic liposarcoma are all high grade (more likely to recur or spread).  Most MLS & MRCLS metastasis & local recurrences occur within five years of surgery,  with a smaller cluster occurring at the 7-10 year mark.  However, I've even come across survivors whose distant mets occurred 11 years after surgery.  Consequently, the sarcoma community as a whole tends to use the term NED (no evidence of disease) rather than "cancer free", as it's quite possible the cancer is still present but not yet visible on scans.  In fact, this term is often used on our scan reports themselves.  Roughly 30% of cases with the myxoid subtypes lead to recurrence or distant metastasis.

MLS & MRCLS are said to be more responsive to radiation and chemo compared to other liposarcomas. Both are treated with radiation & surgery, however, chemo is often reserved for the high grade  MRCLS variant & those with larger tumours, so it’s important to know your round cell percentage, which can be found on your pathology report. Five percent or greater is considered high grade & more aggressive, whereas less than five percent is classified as low grade.

Although there are always exceptions (sarcomas can occur anywhere in the body), Myxoid, myxoid/round cell & pleomorphic often originate in the extremities (limbs), whereas WD & DD often start in the abdomen.  If you’ve been diagnosed with myxoid in the abdomen & there’s no sign of it elsewhere, you may want to seek a second opinion, as it’s possible it may instead be WD or DD liposarcoma.

Unlike other cancers where you're considered to be in remission after five years, liposarcoma patients should be monitored for life, but especially for the first 10 years following surgery. Typically in the US & Canada, the first two to three years consist of CT scans of chest/abdomen/pelvis or chest x-rays every three to four months, sometimes alternating to reduce radiation exposure.  At the two or three-year mark, this frequency often decreases to every six months, and then from five years on, scans are yearly up until at least the 10 year mark.  An MRI of original site for extremity liposarcoma survivors is also recommended, but frequency & scan types vary depending on where you live. In the US, MRIs tend to be ordered every three months For the first 2 to 3 years, every six months till the five year mark & annually after that.  However, in countries with public healthcare systems, such as Canada, UK & Australia, scan frequency varies due to cost.  In fact, some patients have had to fight just to get MRI scans at all. With MLS & MRCLS, a spinal MRI is also recommended every one or two years to check for spinal mets, especially for those with myxoid/round cell. Update: In the UK, CT scans tend to be reserved for more high risk cases, with lower risk individuals getting chest x-rays instead.  Many thanks to Kate & Rachel for the UK info!  CT scans are more effective at detecting smaller mets, however, they result in more radiation exposure.  I've noticed the US seems to order the highest amount of CTs compared to other countries.  Here in Canada at my highest frequency, even as high risk, I was getting chest x-rays every four months substituted once annually with a CT scan in order to reduce radiation exposure. I've always had annual MRIs of my thigh but didn't start getting spinal MRIs until about two years in once it became known that MRIs are more effective than bone scans at detecting bone mets. 

When MLS or MRCLS is suspected in the limbs, a core needle biopsy is used to confirm subtype & grade.  This is important for determining the treatment plan, especially if receiving chemo or radiation before surgery.  According to the National Cancer Institute in the US, contrary to popular belief, biopsy seeding is a myth.  However, if the tumour is smaller than 5cm or radiation &/or chemo are going to be done after surgery, sometimes a biopsy is skipped in favour of a post-surgery pathology report.  The problem with this, however, is the round cell percentage often can't be determined after tumour removal due to tumour necrosis from pre-surgery radiation treatment.

Please know, you did not cause this cancer.  To date, sarcoma experts have not found any link between sarcomas & diet, weight, exercise,  lifestyle or even family history.  In fact, many sarcoma patients live healthy lifestyles & there are even several professional athletes amongst our lumpy alumni.  MLS & MRCLS tend to be diagnosed in younger adults in their 30s, 40s & 50s, and there are even rare instances of children getting these subtypes.  According to the Canadian Cancer Society, only 45% of cancers are preventable, which means the other 55% aren't, and liposarcoma is amongst that 55%.  To quote my oncologist, it was just bad luck.

Last but not least, it's important to be seen by a sarcoma specialist, as most general oncologists have never even seen or treated a case of sarcoma.  According to many research studies, when surgeries are not  performed by  sarcoma specialists, likelihood of local recurrence & distant metastasis significantly increases.  There are many liposarcoma patients whose tumours were misdiagnosed as benign lipomas, and as a result were removed with inadequate margins the first time  around, resulting in the need for a second  surgery in an attempt to reduce likelihood of early recurrence and/or metastasis.  If not possible to attend a high-volume sarcoma centre, your oncologist should in the very least closely consult with an experienced sarcoma specialist at a large cancer centre.  Be sure to ask your medical team lots of questions, and don’t be afraid to seek a second opinion . It could save your life.

Many thanks to those on the Liposarcoma Survivors FB group for all your support & wealth of knowledge over the past four years.  I'd also like to thank the sarcoma specialists who donate their free time to answer questions on the Q&A group, and my own medical team for saving my leg & my life.  I'll find out later this month if my luck continues.  For those whose journeys ended far too soon, I dedicate this post in your honour.  These are just a few of the fallen warriors who've helped me in some form along the way - Jeff L., Amy K., Teresa B., Kathy H. & Matthew S.   Also, big hugs & huge thanks to my fellow survivors Erica, Ruth Mc. & Elisa, as well as Dr. Tseng, who everyone wishes was on their medical team, including me!  :)

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

Three Years Ago Today...

07/10/18 - Exactly three years ago today, I had a 25x13x8.7cm round cell/myxoid liposarcoma (MRCLS) cancer tumour removed from my left thigh. Besides leaving a 10” scar, sarcoma forever changes you in ways the eye can’t see. Like many life altering events, there is life before sarcoma & life after. We have a saying in the sarcoma community, sarcoma is a marathon, not a sprint. Over the past three years, there have been times where I wondered if I would ever get to this crucial point. With sarcomas being so rare & many survivors never having met another person with the same sarcoma subtype, the online sarcoma community has become very close knit. Since my diagnosis, several fellow survivors whose journey started out quite like mine have lost the battle due to their MRCLS returning with a vengeance, which makes me all the more grateful to reach three years with NED (no evidence of disease). I still have to be monitored for life, as sarcoma can return many years later (i.e., 7, 8 & even 11 years in some cases), but I take comfort in the fact that many cases of mets (metastasis) occur in the first three years for my subtype, so three years is a huge milestone.

So much has happened since my diagnosis. While in the middle of cancer treatment, I was laid off my job of nearly two decades, which was a bit of a mixed blessing, as it gave me time to heal & process everything. While 2015 was spent recovering physically, 2016 was spent recovering emotionally. Still, the winds of change continued over the past year with the relief & challenge of finally finding a new job, and the heartbreak of losing my two older dogs who passed away five months apart. Throughout all this, some bonds have strengthened while others have been broken. But with mom, my youngest remaining dog & good friends by my side, both new & old, I have come through. :)

To be honest, for the past three years, I have in many ways been waiting for the other shoe to drop, but I refuse to do that anymore. Sure, it’s always at the back of my mind that it could return when I least expect it (there is no blood test & often no symptoms with sarcoma), but something changed in me this year. I don’t know if it was witnessing the passing of my two older fur-babies or just the process of time, but I've decided that life is for the living, so I am going to move forward until the universe decides otherwise. Deciding to get another dog was the first step towards this, and I am so excited to have Molko join our little family later this summer! During the months following my diagnosis, Placebo’s music was the only thing that could take my mind away from it all & give me some kind of peace, so what better way to honour that than by naming my newest fur-baby after the singer whose lyrics mirror my soul. Placebo was also the soundtrack to my five months of physio that followed, when my sole purpose in life was to recover well enough to make it to their 20th anniversary tour! Well, I guess you could say I succeeded & then some, as I just came back from my third trip this tour, three weeks before my third NED anniversary. Seeing my favourite band in a historic city with amazing friends, it doesn’t get much better than that! :)

Next big milestone: 10 years! Better start saving my travel points now! ;)  Meanwhile, I'm just happy to graduate to six-month scans (previously every four months)! :) 

#SarcomaSurvivor, #SarcomaAwareness, #LifeIsWhatYouMakeIt, #Placebo30

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. :)


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.

Breathe...Believe!

09/25/16 - It's been an eventful week! It started off with great news!  Got the results of my shoulder scans, and it turns out I have tendonosis, which is similar to tendonitis but there's less inflammation & it's chronic.  Why on earth are you happy about that, you ask?  Well, at least it's not a liposarcoma recurrence!  I've actually run across some fellow survivors whose recurrence was misdiagnosed as tendonitis or tendonosis, so I am very relieved to say the least!  :) Even though I figured it was probably something like tendonitis, there was a part of me that was afraid it was something much worse.  Tendonosis may  suck, but at least it's not going to kill me!  :) And it's slowly getting better, which my doctor says is normal as some cases can take several months to heal.  Meanwhile, I have one more batch of tests next month for my usual surveillance before my trip for Placebo's 20th anniversary tour!   Here's hoping my lucky streak continues & I make it to 16 months NED (no evidence of disease)!  I can't wait to get out of here for a good while!

On Wednesday, I finally got my sarcoma ribbons!  Yes, you read that right, ribbons in the plural!  I ended up getting not one but two tattoos, one with the yellow sarcoma awareness ribbon honoring survivors, warriors & the fallen & the other with the plum ribbon honouring caregivers.  Originally, I intended to get these in July for my first anniversary of Bing in remission, but better late than never!  :) Of course, I put my own personal spin on them to make them more personalized to me & am so pleased with how they turned out!  My tattooist did a wonderful job of re-creating the vision in my mind's eye!  Of course, I also managed to incorporate Placebo into the mix & included scripts  inspired by some of Brian's lyrics.  As a pair, the tattoos for me honour family both two & four-legged, friends both near & far & the music that has helped me get through life, especially the past year following my sarcoma cancer diagnosis.  They also represent hope, strength & finding inner peace.  I've also come to the conclusion that there are a LOT more nerves in the wrists than there are in the upper arms!  Still, the pain from this latest batch of tatts doesn't even come close to last year's one foot drain from hell!  It's all relative, y'know?  ;)

Now I'm throwing caution to the wind & am getting two more done on top of the two I just got.  When they're all complete, I'll be up to a total of six!  The next batch will honour my furbabies, as well as a big one to honour Placebo's 20th anniversary tour!  I'm both excited & nervous at the same time, since the anniversary one is going to be the most ambitious tattoo I've yet to get!  It's going to take more than two hours to complete!   The things we do for our body art & a love of music, LOL!

Speaking of body art, recently, the news aired a story about a woman who does tattoos to cover scars for cancer patients & others who have scars for various reasons.  It almost sounds perfect, except for the fact that there's one part of my massive scar line that is SUPER sensitive, so much so that there is no way I could handle getting tattooed there, as it's even uncomfortable when I gently touch that area.  Otherwise, it would've been perfect, since most of the scar line is completely numb with little to no feeling whatsoever.  But no, I think I'll stick to torturing the other parts of my skin instead, thank you very much!  :p

Interestingly, I waited 17 years between my first & second tattoos, and now all of a sudden I'm on a roll, getting tattoos left right & centre.  According to my tattooist, this is apparently quite normal after someone has experienced a major life event, such as cancer.  Suddenly, it just makes everything clear as to what's important & you lose that fear of "should I or shouldn't I do this or that?".  "Live for today, hope for tomorrow" pretty much sums it up.  As cancer survivors, particularly high grade cancer survivors, we just don't know how much time we have & it it'll come back.  Of course, nobody truly knows how much time they have left, but it's exacerbated ten fold when you're a survivor.  Having a 40-50% chance of distant metastasis or recurrence within five years & a 56% chance within 10 years gives you a whole new perspective on taking chances in life.  Just to clarify, in case I haven't yet already, those 85% as of five-years survival rate stats I wrote about earlier on in my blog did not differentiate myxoid from myxoid round cell, the latter of which has a much higher rate of recurrence & poorer long term prognosis.  So, to the family & friends possibly wondering "Why is she doing all this when she's still laid off work?", that's why.  Put simply, I don't have the luxury of assuming I have the luxury of time.

Speaking of time, I've never been religious or very spiritual for that matter, but I'm really starting to believe everything happens for a reason & at the right time.  Last week it was announced that my childhood favourite, Culture Club, whom I never got to see is going on tour, so after 33 years of waiting, I will finally get to see the original lineup live!  Although I've seen George perform solo, I've yet to actually see all of Culture Club as a whole perform together in one room!  Too say I am ecstatic is an understatement!  Being laid off in the middle of cancer treatment has actually been a blessing in disguise, because it's given me time to do even more travelling than usual without the worry off it interfering with a job & vice versa - and to just ENJOY it.  So, now I have two Culture Club shows plus a whole bunch of Placebo gigs to look forward to over the next few months!  Life is good!  I may not know what the future holds health or job-wise  for that matter, but I am learning to just trust in the universe & that things will work out the way they're meant to. This hamster is going to enjoy her time away from the wheel for a bit longer!

How has being a cancer survivor changed your life perspective, and how did you mark your first anniversary of being in remission?  Feel free to drop me a comment below!


[NOTE: Title inspired by lyrics from Placebo's "Loud Like Love", which can be found on their 2013 album of the same name.]


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.

Old Results, More New Tests

09/13/16 - Finally touched base with my doctor's office about the  final pathology report from when my uterine fibroid was removed 11 years ago.  Good news, it does state no malignancies were found.  Note the plural tense there. Turns out I had NUMEROUS fibroids, whereas I was originally lead to believe it was just one big grapefruit sized one!  The largest one, however, was 17cm on its largest dimension, and all the tumours together along side my uterus were 27cm.  I also found out the technical name of all my fibroids - leiomyomata. So, of course, off to Google I go to see what it has to say about it.  It's nice to know the proper name of it..er...them...after all these years.  Never knew enough to even think of asking for this kind of info back then.  

Still on the topic of my family doctor, after my last visit, I mentioned the recent discovery that sarcoma patients may have genes for other types of cancers that are known to be genetically passed on that make us more susceptible to sarcoma.  Particularly, researchers are starting to believe that those with the colon cancer & breast cancer gene may be at increased risk of sarcoma & vise versa.  So, although they haven't been able to find a sarcoma specific gene, they have noticed sarcoma patients are more likely to have genes for these other cancers.  Well, guess what?  My grandma & great grandma on my mom's side both died of colon cancer.  With that in mind, I wanted to know if we should start screening me early for colon cancer, since my grandma was only 52 when she died.  So, here we go, another test to add into the mix. Ugh...  Not looking forward to that one!  Good thing I've had an epidural before & know they work on me!!!  I'm on a waiting list for that, though, so no idea when that test will be.  Watch, they'll try to schedule the colonoscopy during my Placebo trip again, ppphhhht. Can you say RESCHEDULE!  :p

Well, that's about it till I get the results of today's ultrasound & x-Ray on my shoulder.  I will report back in a week or so once I have those results.  Never thought I'd ever be saying this, but here's hoping it's only arthritis or tendonitis!


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.

Saying Goodbye to a Fellow Survivor, Plus Summer Update

09/09/16 - Still a month to go before my next round of tests to check my cancer hasn't returned, but I thought I'd pop in with a little update.  The summer was good while it lasted.  We've had a lot of rain this year, but whenever the sun was shining, I took advantage of it to go for walks or just sit outside with my dogs to enjoy the fresh air & greenery - something I didn't get to do much of last year during recovery.  It's been nice relaxing without having to worry about being somewhere (like the non-existent job I've yet to find since being laid off!).  Hey, if you don't laugh, you'll cry, right?  Gotta find a silver lining somewhere! :)  For those new to my blog, in 2015, I had a very large high grade liposarcoma removed from my thigh.  Check the side menu to the left for the link to my post where I describe the beginning of my journey with this rare cancer.

All this wet weather has led to an interesting discovery.  Ever since the rain started falling, I've noticed an increase in pain on my surgery site, along with my shoulder which was broken years ago when I was hit by a car.  Initially, the connection wasn't obvious, but now I'm starting to think the weather may be causing whatever is going on to get worse. At first, I blamed the shoulder pain on possible tendinitis, since I did have issues with it about 10 to 15 years after it was broken.  I figured I'd aggravated it while lifting my monitor a month before, but upon speaking to my family doctor, it seems it's not normal for tendonitis onset to have a month delay, nor should it be lasting THIS long.  It's been three months of me being super gentle on my shoulder, yet I'm still experiencing pain.  Hopefully, it's just the onset of arthritis, but my family physician is taking it seriously, given my history.  So, cue in yet another ultrasound & x-ray, yaay! :p  My favourite things, LOL, not!

Speaking of tests, my family doctor has also agreed to try to get a copy of the pathology report from my grapefruit-sized uterine fibroid that was removed back in 2005.  Back then, I didn't know enough to even think to ask to see it, so I just figured no news was good news when I never heard anything about it after the surgery.  Knowing what I know now, I want to see the report, even though they say it's unrelated to my sarcoma.  The fact still remains that in the space of 10 years, my body grew two large masses.  I want to see that report!

Back to the subject of the pain I've been having...  Recently I started taking turmeric upon the recommendation of some of my fellow liposarcoma survivors for my shoulder, but to my surprise, the pain in my surgery site ALSO almost completely disappeared within 24 hours but returns whenever I stop taking it.  Turmeric is said to have a very strong anti-inflammatory agent so now I'm really baffled.  I don't think a sarcoma recurrence would inflame any of the tissues, BUT I do know of other sarcoma patients whose recurrences were misdiagnosed as tendonitis, so I'm really happy that my family doctor is not sweeping this under the rug & is at least taking a look to be on the safe side.  I should have the results within a week, so cross your fingers for me all goes well.  I assume it's either arthritis, tendonitis or both in my shoulder & just the aftereffects of surgery & radiation in my thigh, but still, there's a small part of my mind that worries it's more than that. OK, maybe not that small!  Although any distant metastasis is more likely to occur in my abdomen or lungs, liposarcoma has been known to metastasize to odd locations, so I don't take anything for granted.  We're not scanning my leg at this point (I'll ask about that next month when I meet with my oncologist), but if anything turns up weird in my shoulder, my family doctor will order an MRI.  MRI's have a long wait time when they don't think it's life threatening, so hence the reason we're starting with this other batch of scans.

Meanwhile, next month is my next batch of usual scans to check specifically for distant metastasis. They're sending me for a second CT scan this year despite the original plan being for one CT scan annually, alternated with a chest x-ray & abdominal & pelvic ultrasound the rest of the year.  This means increased exposure to radiation, and to quote my oncological team, CT radiation is not insignificant, so I'm not exactly thrilled about this. But somebody messed up & only ordered a chest CT in June, plus the usual pelvic & abdominal ultrasound, instead of scanning everything in just one CT scan like we'd previously discussed.  So, now they're doing the CT scan of everything in October, plus they're still doing the pelvic ultrasound, most likely due to my ovarian cysts they're keeping a careful eye on.  *sigh*  Oh well.  It's not worth the stress to argue with them, especially after what happened last time!

Getting back to my surgery site, though, the pain is quite severe when it does happen, but thankfully it's not constant. I think that pain could be sciatic inflammation. Fortunately, that doesn't keep me awake, becaus it only lasts for a few moments & happens when I move a certain way or try to stand or sit, but the strange thing is, it's not every time.  Because of this, it's next to impossible to replicate  for my oncologist.  My shoulder, on the other hand, kept me up at night for about a month.  Ah, the joys of getting old & being a sarcoma survivor!  :p   Despite all this, I am in good spirits & really looking forward to my trip this fall to see my favourite band Placebo's 20th anniversary tour!  I think it'll do me a world of good to get out of here for a while!

On a more sombre note, I would like to pay my respects to Jeff Landes who passed away from his six year battle with liposarcoma earlier this summer.  Every liposarcoma survivor knows this cancer has a high tendency to recur & many experience multiple recurrences, especially with well-differentiated & de-differentiated liposarcoma.  His passing hit me particularly hard, because he was one of the first people to reach out to me when I joined the liposarcoma survivors support group on Facebook.  Wherever you are now, Jeff, thanks for sharing your story & spirit with the rest of us lumpy folks.  Your sense of humour & amazing spirit are very much missed.

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.

First Anniversary Cancer Free! :)

07/10/16 - Well, on a happier note, I have officially made it to my first year anniversary of being cancer free (my limb sparing & life saving surgery was exactly one year ago today!), and I am happy to say that I have finally calmed down from last week! I have decided I will go to my next appointment, but just take their lead and let them do all the asking.  I figure this way, I will at least be able to get all the tests that they are willing to prescribe me for the time being.  Hopefully, the appointments will go more smoothly that way without them making me feel like a five-year-old!  I've also decided to mark the occasion of my first anniversary of being cancer free with a tattoo. Now just to decide exactly what to get!  For sure it'll have the yellow ribbon that symbolizes sarcoma, plus it’ll most likely have a butterfly or flowers. It will also feature some lyrics from, yep, you guessed it, Placebo!   I am also going to take part in the #KnowSarcoma campaign one of our national cancer organizations has going on for sarcoma awareness month (July), and I am also going to contact the cancer society to see what would be involved in becoming a peer support telephone volunteer. I would really like to be able to give back to new sarcoma patients who undoubtedly have a million questions like I did after I was diagnosed.


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.

A Bitter Sweet End to My First Year as a Sarcoma Survivor.

07/04/16 - In six days, it’ll be a year since my surgery to remove my 25x13x8.7cm myxoid round cell liposarcoma from my left thigh, and today I went for my latest four-month checkup at my local sarcoma clinic, where the oncologist said my tests were fine, despite that inconclusive bone scan, about which he said the radiologist was just being overly cautious.  I keep telling myself I should be celebrating completing a year of NED (no evidence of disease), but sadly, today’s visit just left me feeling frustrated & fed up.

***WARNING: RANT ABOUT MY LOCAL MEDICAL SYSTEM* BELOW***  There probably isn't much useful info to follow in this post, I just really need to vent!

Frustration #1: First I saw the resident doctor (Dr. #4) who was awesome, but then I was told my oncologist’s was still away, so I’d be seeing another oncologist (let’s call him Dr. #3) who was semi-retired. Oncologist #2 who I’ve seen a few times when mine was away was in the process of taking over Dr. #3’s practice.  BUT…then when the resident doctor came back, Dr. #3 was nowhere to be seen!  Instead he came back with Dr. #2!  Dr. #2 is the other oncologist that I wanted to get a second opinion from.  However, when I asked about getting a second opinion from him a month ago re: my surveillance plan, I was told there wasn’t any point because both he & my regular oncologist (Dr. #1) collaborate on everything.   Also, when I asked a month ago to move my appointment forward, so that I wasn’t stuck waiting a month to discuss my results, I was told it would be better for me to see my regular oncologist when he returns from vacation…yet lo & behold, who do I get today but the oncologist I wanted to see a month ago but was told no!  So why then did they make me wait a month when they had an appointment available sooner WITH THE DOCTOR I SAW TODAY?!?!  I KNOW they had one available, but they specifically didn't book it because Dr. #1 was still going to be on vacation!  Blah.

Frustration #2: Then while the resident doctor (Dr. #4) made me so happy by telling me that Dr. #3 would likely order an MRI based on the results of my bone scan, Dr. #2 comes in & says if it was up to him, he would NOT recommend any MRIs EVER until I start presenting symptoms, because we have to be fiscally responsible within the constraints of our country's healthcare system!  He also said he’s worked in the US healthcare system before, and that American oncologists order way too many scans & that it’s just not sustainable.  He even said doctor's in a certain sarcoma centre elsewhere in our country order too many scans!  So, one doctor tells me one thing & the other tells me another IN THE SAME APPOINTMENT!  So, here's me stuck in the middle wondering do US doctors order too many scans as a money grab, but then do doctors in my country not order enough scans to save a buck & is the right number of scans somewhere in between?  I don't know what to think anymore!!! :(

Frustration #3: Now, to be fair, Dr. #2 did say that he would order an MRI to help “ease my brain” (yes, he actually used that phrasing!), but he made me feel an inch tall for even wanting an MRI & for daring to QUESTION things, that I decided just to forget it & get the hell out of there.

Frustration #4: Ah but there’s more.  On the form they have you fill out whenever you go there, they ask if you’re experiencing any pain.  I have been, so I told him about it but yet again, was made to feel an inch tall, even though I reminded him that I had discomfort in my leg for nearly a year as a symptom of my sarcoma before it was found, so now I bring up anything that lasts more than a month or two JUST TO BE SAFE.  Yet he still made me feel an inch tall for bringing it up.  There were a few other things he showed complete lack of sensitivity to, but I've decided to just leave it at this.

So yeah, I should be happy,but right now I’m just really, REALLY pissed off.  Sorry to bitch & complain, but I figure this is more constructive way to deal with my feelings right about now.  I was so upset earlier, that I had a good mind to go to my next set of scans, get the assistant to email me the results like she normally does & then if they turn out okay, just walk away & not bother with going in for my next appointment.  Another part of me thinks, “Oh, just put up with it for one more year & then walk away”.  But sadly, I am well aware how important it is to get the scans they are willing to give me for the rest of my life. I just really don’t feel like dealing with THEM anymore.  I wish I could just have the scans & only see the doctors if they find something, but sadly, they won’t allow that.  I’m still THIS close to just walking away, though.  If they want me to just shut up & be a good little patient who doesn’t ask questions & save money by doing fewer scans, fine.  I just won’t go.

ON A HAPPY NOTE, there was one other thing that went right today… They FINALLY removed the non-desolvable stitch that’s been in my leg for nearly A YEAR! :) :) :)  I tried removing it like I removed a few of the others they missed but my arm is too short to hold the stitch in place while I cut it out with the other hand, LOL!  So, yay, I’m NED for one year & counting & that damn stitch is finally out!  :)  Gee, I feel better already, and I haven’t even posted this yet. :)  Thanks for reading this if you actually got this far & sorry again for being so grumpy.  I’m sure I’ll feel more positive in a day or two.  Oh yeah, and I just realized I just have one more batch of tests to get through before my trip, so YAY!  OK, now I feel even happier, LOL!  Yep, just give me  my favourite band!  They make everything better. <3

One more thing! Despite my venting in frustration above, I feel very grateful to be NED & even though their bedside manners leaves a lot to be desired at times, I really do have a great medical team.  I’ve been told my scar is a very “nice” scar compared to others people have seen (and this is medical people telling me this!), plus I never had any complications, no infections or anything like that, whereas I hear loads of stories about other sarcoma patients having infections & all sorts of complications.  So, for that, I am truly grateful, and I’m well aware life could be a lot worse.  At least I have my leg, I’m NED & did I mention I get to see my favourite band in a few months?!  ;)

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.

Sarcoma Connection Canada - a New Sarcoma Support Group!!! ;)

06/11/16 - If you know of anyone battling sarcoma, please let them know, there is a new Facebook group for those in Canada who've either battled it or who are currently battling it. Although there are several other groups on FB re: various types of sarcomas, including the one that I battled, they're all very US-centric. Tis past week, the second annual International Sarcoma Symposium was held in Toronto, and the idea of having a Canadian based group was brought up & thus the group was born. :)

Sarcoma Connection Canada Facebook Support Group

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.

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.