Flashbacks ARE Real for Cancer Survivors

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

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

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

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

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

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

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

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

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

THIS MESSAGE COULD SAVE YOUR LIFE!

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

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

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


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Update: MRI Results

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

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

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


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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.

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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.

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.

Almost There!

03/20/16 - I'm so happy!  The one thing that kept me going through my battle with myxoid round cell liposarcoma is finally upon me!  Or well, it will be in about  eight months!!!  Placebo’s 20th anniversary tour is finally a reality, and my friend & I got tickets for a number of shows this fall!  *Squeeeeeee*  There were times when I feared I wouldn’t be alive to see this day, but here I am!!!  Now the waiting begins...again….eight…long…months…ugh!!!  I still have two more consultations with my oncologist, as well as a crap load of tests to get through between now & then, as we monitor for distant metastasis.  So, now I’m terrified something will go wrong between now & then!  Just wish I could get on a plane tomorrow, but alas the tour doesn’t even start till October! :( There’s something to be said for the rather SHORT notice we got for gigs over the past few years!  This waiting for almost a year for shows is going to drive me nuts!

And so much for my oncologist "spreading out" all my tests over several months!  In June, he's now booked a CT scan, ultrasound & bone scan!  Plus I'm sure he'll order my x-ray in between there, as well, since we're staunchly monitoring for lung metastasis.  I almost don't mind doing them all at once.  When they're spread out, I end up stuck waiting for sometimes two months to see him after a test &/or have to get the receptionist to email me the results...  That's all fine when the results are good news, but what if one day they're not & my appointment isn't for another two months?!  I suppose if that ever happens, they'll obviously move the appointment...  But yeah, cluster the tests.  Radiation or not. :p


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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!

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.