Friday, April 25, 2014

every three months

Exactly how often should someone living with metastatic breast cancer undergo the tests that monitor our health?

These CT scans, ultrasounds and MRIs are inevitably nerve-wracking, expensive (even if we don't pay for them out of pocket) and sometimes come with a risk of cancer inherent in the test itself. Cancer patients waiting for tests results refer to being in a state of "scanxiety." 

It's impossible to describe what it feels like to wait for test results, unless you've been there.

And those of us with metastatic breast cancer go through it over and over again. It's brutal.

When you live with metastatic cancer, one of your greatest challenges is balancing potentially life-saving interventions with the quality of the life you're keen on saving. It's important to check often enough that you catch any change quickly but not so often that you spend your entire life waiting for tests, undergoing tests and then waiting for results. 

Because that can be paralyzing.

I was speaking to a friend last week who was considering delaying scheduled scans by a few weeks. She said that it  had been implied that she wasn't fighting the way she once had. This made me furious on her behalf, as I can completely understand her need for a period of sanity, when cancer isn't always at top of mind.

In my case, I have the advantage of being in remission and the disadvantage of having an un-protected brain. I know it could just be a matter of time until the next brain tumour. I want to be able to catch it quickly. I also want to stop living my life from scan to scan.

I currently have brain MRIs every three months, at the suggestion of my surgeon. My oncologist would like me to wait until I'm symptomatic but I just can't do that. I have symptoms all the time. Symptoms of brain tumours include headaches, irritability, nausea and clumsiness. Who doesn't feel any of those things from time to time? 

My last scan was April 10. On April 14 my lovely GP called me and opened with the line, "Want to hear the good news?" 

All is well and I can wait another three months until I go through all of this again. 

Or maybe I'll let it stretch to four.


Ellen Long said...

Thanks for sharing this. To know you is to love you. To know you is to know myself better. Two gifts.

Jim's Girl said...

I'm glad to hear the good news. ~Kate, of Kate Has Cancer

Lene Andersen said...


And what Ellen said.

tccomments2013 said...

dear laurie,

you are not alone in mulling over the pros and cons of incessant tests and scans - I call it getting put on the conveyor belt that never stops. I read a lot of blogs - really, a lot! - and there have been more and more posts of late that question the safety (and sanity!) of this issue. I certainly do, having 2 cancers, St IV met BC (now NED for 2 yrs.) along with ST III uterine cancer, dx'd last july. I hope each and every post that has been written about what you and others are questioning raises a groundswell of further conversation. of, course, we must decide for ourselves what is in our best interests, but I think , I hope there are many diverse questions and opinions coming up - no one should feel alone in tackling such a difficult situation, and a robust conversation that lends itself to new ideas and attitude will be the way to be heard and be able to receive support.

I am so happy to hear your good news, and send you warm hugs and big hope that there will be much more of it. Karen xoxo

laurie said...

Aw, thanks, especially for the kind words. I'm very touched.
And Karen, that is brilliantly put. We do need a "robust discourse" about quality of life, balance and how the patient needs to be driving that particular bus, with input from the medical team.

Lea Singh said...

Found your blog through Blog Out Loud, and I am impressed. Thanks for sharing what your journey has been like, it has helped me to understand what it is like to go through that difficult journey.

laurie said...

Thanks, Lea. It means a great deal to me when people find that something I write resonates with them or helps them understand. I'm really touched that you took the time to share this with me.