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Is anyone else foating adrift?

son of hal
Posts: 117
Joined: Mar 2011

That's what it feels like since there really isn't anyone directing my care. I haven't seen my oncologist in almost two years and my surgeon has been doing my scan requests the last year or so and said he'll continue for now but he's a VERY busy guy. My GP is clueless and just goes along with whatever I say. Here's the thing. When I finished my chemo back in Aug. 2010 I started looking for another oncologist (it was a hospital system issue) but couldn't find one I liked. My onc at the time got wind of that and stopped contacting me. I was done with chemo and my surgeon started taking over scan requests for his own surgery prep. Now that I'm done with surgery I don't know who will track my progress. How often should I get scans and bloodwork? I've had to request CEA the last two blood tests because surgeons don't track that stuff. I don't know if I should keep interviewing oncologists now or just wait until / if they are needed. The last scan I had was before surgery about 9 months ago. In three months (at 1 year between scans)would I just ask my doc to request a scan, and who would evaluate it? It's all very confusing. I guess I'm at the helm but I'm not sure where I'm going....
CJ

tanstaafl's picture
tanstaafl
Posts: 1302
Joined: Oct 2010

Depending on where you live with respect to insurance, there are naturopathic doctors specializing in cancer that *might* be useful for basic support. Otherwise finding the most informed supportive doctor for basic orders and oversight is important as well as specific disciplines, like surgery and radiology.

Hal, do your CT/MRI scans come with the radiologist's reading printed out? We rely most on self directed lab tests like CBC, CEA, liver enzymes, INR, calcium (lots of vitamin D), ESR plus others that have been far more sensitive *so far* than CT. We assiduously maintain a large bag with complete records ready to go, and I maintain a spreadsheet of monthly blood lab results. I feel the frequent blood labs will likely be better at early detection given my wife's history and consistent biomarkers when directly analyzed with papers in the medical literature.

Last surgery last year, I mentioned that we were still looking for some magic oncologist that we could talk to profitably on a continuing technical basis. One surgeon, said he was looking a long time too, but gave up already and supports a lot of his own patients on "chemo forever". So we get ongoing support from about four doctors (alternative med/internal medicine MD doing a lot of alt cancer work, CRC/oncology surgeons, radiologist) and any others as needed right now. I do a lot of footwork, home study and research.

If anything pops up, we'll interview several doctors from all relevant disciplines as necessary.

smokeyjoe
Posts: 1428
Joined: Feb 2011

I think I'd try and get on board with another oncologist, someone who can interpret your scans and bloodwork...although it's awesome your surgeon is following up on your scans. Surprised your surgeon doesn't know of a good oncologist to recommend, in his practice you'd think he is in contact with several dealing with other patients. Tans why do you monitor calcium in lab tests (I may have asked this before)....this is an additional test I see my oncologist ordering on my blood tests, it's an extra along with the CEA. This one still mystifies me.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

You need to have someone who is monitoring your progress. Like tanstaafl said, "finding the most informed supportive doctor for basic orders and oversight is important..."

Having a (good) oncologist is very important unless you have the resources and time to do all of the legwork yourself. Many don't. I had my brother help in the beginning and I got hooked up with a very good oncologist who I'm happy with. If you "wait until/if they are needed" that could be too long.

A better situation is to head off any problems by monitoring your health and taking care of things before they become a problem...
I would look for another oncologist.
Good luck, they are out there...
-phil

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