Why are tests so unreliable????

Sundanceh said:

Hey Valerie
All of us, our doctors included, put way too much emphasis on the tests and the results. We should begin to think of them as a "possible indicator" - not the absolute, died in the wool, truth. Because, alot of times, the tests can be misleading. There is a thing called "False/Positive."

The tests are just that - they are a tool - and unfortunately, the best tools that we have available in the year 2010.

I've really learned over the last year, especially, that alot of my tests have been flat out wrong, or against what we think they should be.

Examples:
Pet Scans show uptake to the spots in question - surgery reveals benign growths.
Sometimes PET shows a mass - but the CT did not see it.
CEA levels are normal, way below normal, and yet Cancer running rampant inside your body.

Just to name a few...

I've learned to just use these as a measurement - and when we watch and wait and we see growth, then we ready to action.

Biopsies are always good, but even those can be "hit or miss." I mean the technician might miss the area entirely, depending on tumor size - and right now, yours are still fairly small.

And I've had biopsies tell me nothing, and yet I had an active 9cm tumor in my liver at one time and it was cancer. Alot of times, it's just really hard to know what is the hard truth of the matter. That's why they scan us so much, because they are really not too sure either.

The old adage: "If you don't expect too much, you won't get let down."

The best thing we can do is what you've been doing - stay diligent - make a call if you feel you are not hearing what you need, or you suspect something might be wrong. You're on top of this, and you're calling the ball, so here's hoping to finding some more answers, even though it may take a biopsy or waiting for another scan cycle.

Thanks for posting and I look forward to hearing your story on this latest development.

-Craig:)

Every cancer patient should
Every cancer patient should understand the benefit of tumor boards and push for them when there is not a clear cut dx or and treatment plan. Its too important to be just a option, its part of receiving improved care and increase in seeing the entire picture and all available options.

Virtually all patients with cancer are diag nosed in the primary care setting, and the
majority (78 to 80 percent) receive all of their cancer care in community hospitals.
The initial evaluation and treatment decisions are the most critical in the outcome for a patient with cancer; but cancer is a systemic illness that can rarely be detected, diagnosed, and adequately treated by one physician. The tumor board of a community hospital offers a multidisciplinary patient-oriented conference that can lead to
improved care of the cancer patient and to improved education of the treating physicians.

The primary goal of a tumor board is to improve the care of the community's cancer patients through the exchange of information among participating physicians. It
is extremely rare for an individual physician to see enough patients with any given
problem to form his own data base as to the appropriate steps in diagnosis and manage
ment. The meeting of the tumor board at which time local specialists are able to share
their expertise which is based on their own experience, as well as a knowledge of the
current literature is a environment in which the primary care physician can take
advantage of the expertise of his colleagues, expand his data base, and improve
the care of his patients

Tumor Board members include pathologists, radiologists, medical oncologists, radiation onc, surgeons, nurse onc, and other specialists.

The tumor board provides a formal structure to assure that communication lines are open and that each member of the medical community can benefit from the expertise of others.
In this way, the tumor board contributes to the education of physicians. A discussion of individual cases, in terms of diagnosis and management, leads quite naturally to a review of cancer management principles. Although the tumor board is clinically oriented, participating physicians are encouraged to share their knowledge of the current literature, as well as of ongoing clinical trials that might be available to local cancer patients.

http://onlinelibrary.wiley.com/doi/10.3322/canjclin.37.2.88/pdf