Wednesday, November 20, 2013

Cancer staging - take two

When I was diagnosed with breast cancer in 2007, I was overly concerned about staging. We all were. 'What stage were you? How long has it been?" we carefully asked each other and compared notes. We introduced ourselves to each other and whispered "what stage are you?" and "how do you feel?".

[There is more on my staging here. If you want a basic overview of how they get to staging read this or go to cancer.org and look up your type of cancer.]

Now I will talk about reading between the lines in my non medical point of view. I never went to medical school but like any cancer patient I feel like I am medically educated  now.

Things I have learned:
  • Your initial staging can be wrong. When you have surgery, they try to give you a quick staging that is later validated by the pathology lab to confirm it. My surgeon refused to do this because he said they have a 50% error rate, so I had to wait an agonizing four days to find out what I really was. Since then I have heard numerous stories from patients being told that 'first my doctor said this but then the lab report came back and he changed to that'. I think I am glad I waited up front to get the real story.
  • Your initial staging can be wrong months later. I know of two stories months out the doctors changed their staging. One was a local newscaster who was diagnosed with breast cancer at stage III but later was told she was only stage II. Would this have changed, and eased, her treatment? I don't know but it still would be upsetting.
  • No matter what stage you are, there is still life after cancer. Just recently I met a woman whose children running a fundraiser for a neighbor with pancreatic cancer. She was so upset. She had no idea how I knew anything but I talked to her for a few minutes and she seemed to calmed down. Stage IV is not a death sentence. I have a friend who is over 30 years out from a Stage IV ovarian cancer diagnosis. Another friend recently died after 17 years at Stage IV breast cancer. A third friend is 6 years out from a stage IV diagnosis and is not even receiving treatment because she has no symptoms. If have more stories if you want to ask...
  • Some cancers come with a stage IV diagnosis automatically, lymphoma for example, because they are everywhere. But that doesn't mean they are a death sentence any time soon.
  • All cancers are not a death sentence. I can tell you stories and introduce you to people who are decades out from diagnosis and doing just fine thank you.
Now six  years out, we don't ask other 'what stage are you?'. We ask each other 'do you want to meet for coffee?'. We talk about life, shopping, holidays, work, stupid people, bad drivers, the latest news, the idiots in Washington, planning fun events, issues with relatives.... You know the things normal people talk about.

Every so often we talk about our next scans or doctor appointments but they do not dominate our lives. We do might flinch when we hear about stage IV cancer diagnosis because we know more about what it really means. We need the whole story behind it before we can discuss it calmly. We know better than to jump to conclusions.

All I can say is cancer takes on new meanings six years out.

1 comment:

Andrew said...

Caroline,
Really enjoy your blog. This week, the LIVESTRONG Foundation launched a unique new online community called Cancer Hacks, which provides tips, tricks and solutions to everyday problems caused by cancer.

Given your personal connection as a two-time survivor yourself, we would love to hear your feedback. And if you like the idea and have a hack to submit of your own of something that helped you through the experience, please submit it on cancerhacks.org!