From the first moment
my wife discovered she had breast cancer, there was a deafening silence from
the men I know. Even ones whose wives, mothers or girlfriends had breast cancer
seemed to have received a gag order from some Central Cancer Command and did
little more than mumble about the experience. Not one to shut up for any known
reason, I started this blog…
Every month, I’ll be
highlighting breast cancer research that is going on RIGHT NOW! Harvested from
different websites, journals and podcasts, I’ll translate them into
understandable English and share them with you. Today: (the article) http://www.breastcancer.org/research-news/survivors-need-better-follow-up-care,
(the study) http://jco.ascopubs.org/content/early/2014/04/16/JCO.2013.51.7540.abstract
And what exactly IS a Survivorship Care Plan (for brevity,
let’s say SCP)?
Hmmm...certainly nothing my wife and I have heard about. Why
not?
First of all, the study finds that few oncologists and
primary care physicians even KNOW about offering a SCP: “Although a majority of
oncologists (64%) reported always/almost always discussing survivorship care
recommendations with survivors, fewer also discussed who survivors should see
for cancer-related and other follow-up care (32%); fewer still also provided a
written SCP to the survivor (< 5%).”
What IS the SCP? According to the article, “The survivorship
care plan should include a written treatment summary and a personalized
follow-up plan developed by the patient’s oncologist. The Institute of Medicine
report also recommends that survivorship care planning include discussions
about which doctors (oncologist, primary care doctor, other specialists) should
be seen for specific follow-up care.”
In fact, at least here in Minnesota at the breast cancer
care centers we went to, NO ONE made any kind of concerted effort to create a
clear SCP. Certainly doctors were discussed. Certainly treatments were
discussed. But as an example of how...relaxed the post-treatment plan was, a
year or so ago, my wife received a post card (or an email, I forget which)
advising her to GET A MAMMOGRAM! I commented acidly, “There are no more mamms
to gram...”
What do you do about getting an SCP, then?
“After your main breast cancer treatment is done, it’s
important to focus on what’s now most important: your good health... [You need
to] bring it up at your next appointment. Ask your ONCOLOGIST the following
questions, ‘Can I get a survivorship care plan in writing that explains all the
medical issues I need to consider and tells me which screening tests I need and
when I should have them?’, ‘Which doctor should I see for each medical issue?’”
If the oncologist recommends that you see a specialist – a cardiologist for
example – and you’ve never seen one before, you may want to ask for a referral
to a specific doctor. If you don’t understand something, ask either the
oncologist or the nurse practitioner/nurse/physician’s assistant to explain it
to you.
“It’s also a good idea to talk to your primary care doctor about
your SCP and ask which parts of it she or he will be responsible for...Because
the idea of SCPs is relatively new, you may have to advocate for yourself to
make sure you that get a written plan.”
Perhaps this is something you can think about. Maybe it’s
something we can do, even though it’s been nearly three years since the chemotherapy ended. If there WAS a SCP, I don't recall ever seeing it and no one really took the time to tell me that it was something I could hold on to and carry with us.
My wife suggests: a CHECKLIST of things that need be to done/talked about (explaining CLEARLY what "survivorship" means (sounds like what the family does after the breast cancer patient DIES!), ports, lymphedema, breast implants, plastic surgery, compression garments, places to get the garments, plastic surgeons IN INSURANCE NETWORK, surgeons who do breast cancer reconstruction, nutritionists, help lines) someone at the hospital who explains everything; someone to actually LISTEN...) Want to add anything?
Image: http://about.medstartr.com/wp-content/uploads/2013/06/MCP1.jpg
My wife suggests: a CHECKLIST of things that need be to done/talked about (explaining CLEARLY what "survivorship" means (sounds like what the family does after the breast cancer patient DIES!), ports, lymphedema, breast implants, plastic surgery, compression garments, places to get the garments, plastic surgeons IN INSURANCE NETWORK, surgeons who do breast cancer reconstruction, nutritionists, help lines) someone at the hospital who explains everything; someone to actually LISTEN...) Want to add anything?
Image: http://about.medstartr.com/wp-content/uploads/2013/06/MCP1.jpg
No comments:
Post a Comment