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.

Hoping for the Best

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

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

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

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

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

First Post-Surgery MRI Results, Final Pathology & More.

01/20/16 - Finally read all my reports - MRI from last week, November 2015 x-ray & July 2015 final pathology.  It seems to be the general consensus amongst liposarcoma patients to ALWAYS read your own reports, so that’s the plan going forward.  Many thanks to the wonderful administrative assistant at my oncologists office who scanned them for me.  She really is the best, I wish they would clone her!

First up, my first six-month post-surgery MRI results: While my left inguinal lymph node has increased from 12mm to 14mm & there are a few small pockets of fluid, everything else looks good & I am still NED six months after surgery!!!  *Happy wobbles* THANK YOU, UNIVERSE!!!  They suggest monitoring the lymph node, but that's only to be expected.  No big deal. :)  Just one more body part to add to the surveillance list. :p

NOTE: For any friends or family reading this, that was the crucial part of this post.  The rest is probably of more interest to fellow survivors & warriors, so no need to read further if technical stuff freaks you out.  :)

As for my July 2015 pathology report, which I’ve never personally seen for myself till now, I was hoping they’d do a re-tally of my round cell component for the entire tumour.  Unfortunately, that wasn’t the case, but it occurred to me that perhaps they can't get one post surgery due to the radiation I had which would've killed some of the tumour.  I'll just have to go with the original biopsy RC percentage of >25%.  For those just tuning into this blog, that means a higher chance of recurrence & distant metastasis.  Also, it seems the tumour did shrink a tiny bit after radiation, as the report said it was 24x12x6.5 upon removal.  Before surgery when I first had an MRI in April 2015, I was told it was 25x13x8.7cm.  My oncologist originally told me it didn’t shrink.  They must consider the difference to be too small to technically count.

Last but not least, I got a copy of my chest x-ray report from November, 2015, which I already knew was clear, but as above, I wanted to read it for myself. I must say, it has to be the shortest report in history!  It was literally one line “The intrathoracic contents, regional bones & soft tissues are all unremarkable.”  Hmph!!!  How dare they call me “unremarkable”?! ;)  LOL!  Just kidding.  If being unremarkable means no new aliens have decided to colonize the lining of my lungs & heart, I’ll take it!  ;)

I also asked about the tingling I’ve increasingly experienced in my hands & feet.  According to the email from my oncologist’s office, he is not concerned about that right now, as it’s very common and can be caused by a number of things.  However, they did suggest I avoid going to any chiropractor for the time being, and said if my back gets too bad to book an appointment with my oncologist.  Interesting.  Sounds like they don’t want to disturb anything, like that T3 nodule they’re watching…  I thought a visit to the chiropractor might help with the tingling…  So much for that idea!

Next up is my four-month chest x-ray & followup in March 2016.  In the meantime, I’ve got a few things in the works to share here between scans, so stay tuned. :)

Thanks for reading! :)  If you enjoyed this post, please help spread #SarcomaAwareness by sharing it on Google+, Twitter or Facebook using the links 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.

They Say Bad News Comes In Threes.

01/14/16 - Wow, first Lemmy from Motorhead, then Bowie, and now Alan Rickman who played Snape in Harry Potter has also died of cancer at age 69. Well if I wasn't nervous before for my first six-month MRI today,  I am NOW!   But least it was a different kind of cancer & he was much older than I am. OK,  calming down now... Give me a minute, though, that could change!

My First Six-Month MRI Tomorrow

01/13/16 - I’ve got my first six-month post-surgery MRI of my thigh & hip tomorrow.  Fortunately, I haven’t experienced the scanxiety I had with my last batch of tests (x-ray & ultrasound).  I’ve been too busy coming to terms wit the death of David Bowie.  Reports are now saying he had liver cancer.  You’d think all this talk of cancer & death would increase my anxiety, but no… I’m just tired!  I’ve been keeping busy working on some material for another blog I have, so perhaps that’s got a lot to do with it.

As for the MRI, this first post-surgery one is to get a baseline image, so that they have something to compare future scans to.  Hopefully, all goes smoothly & there are no nasty surprises.  Here in Canada, our medical system is primarily public, so unlike the private system, I most likely won’t get the results until later next week.  I’ll be sure to post an update then.  I also asked to get a copy of my final pathology report, which they’re going to send along with my MRI results. I’m eager to learn my final round cell count, since the >25% I was originally given was from my pre-surgery biopsy, which only examined three small pieces of the tumour.  The final pathology will be on the entire thing, so it’ll be much more accurate.

Meanwhile, I've added a few Blogger gadgets on the menu to the left to make it easy for people to subscribe or share any posts of interest on Google+.  Besides helping other sarcoma patients & helping myself not go crazier than I already am, my new goal with this blog is to also help spread awareness about this forgotten cancer.  Speaking of awareness, I also added some helpful links, as well as I few sarcoma-related blogs I've come across over the past year.

Well, that’s it for now.  Gotta be up at stupid-o’clock tomorrow to be picked up to go to the hospital!  I swear, they saved me only to try & kill me!  Scans that early should be outlawed!!! Zzzzzzzz...