Wednesday, April 23, 2014

DCIS - YOU'RE CURED. . . . What? I'm supposed to have a written survivor plan?

 "Beginning next year, the American College of Surgeons Commission on Cancer will require a written survivorship care plan for every survivor after completion of primary treatment." medpage Apr. 21.  The article showed that cancer doctors are not doing this now.   

What do I have instead?  What did I do for myself to plan for survival?  

I went back to the surgeon a month or two after radiation for some pain near the radiation and surgery sites.    He said some radiation effects last.   He told me to call the radiological oncologist.   

 I dialed her number and got a nurse who is not good at talking with patients.  I didn't insist on seeing the doctor.   

What about the medical oncologist?

Tamoxifen.  I told him I thought it just made my regular problems somewhat worse, I hadn't seen a specific new problem.  What bothered me was depression and I couldn't lose weight.  He told me we should take the depression seriously, and put me on an every-3-month visit schedule. I got an order to have blood drawn before the next visit.    

 I'm wondering what should be on a written survival plan.  
A written plan would not have helped with things that don't require any new or ongoing actions.  
One problem: doctors who are not good at explaining things aloud may not be any better at writing clearly what to do. Or what they will do.

Do  DCIS patients need a written long-term plan?

Without one, what can we do?

We can do our research, even with other survivors.  
We can ask the doctor about specific items we've read and heard about that concern us.
We can take a list of items with us to the doctor.
We can insist he answer when we ask about daily and weekly and yearly care.
We can avoid expecting oncologists to be mind-readers.

For example:  I read about thyroid and other hormones.  I told the medical oncologist I hadn't had a thyroid test for years and asked if I should.  He ordered one. The moral of that story is:  If you're taking a medicine when you meet the oncologist, he may think your primary doc is checking on it.

If we had a written survivorship plan, I think we would already know most of what would be on it.

We would follow through on it about as well as we have on medical plans so far in our lives.

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