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

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

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

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

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

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

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