This log should encourage everyone to get copies of their CT Scans, MRIs, octreoscans, GA68 scans, and all reports on scans and procedures and test results. You will often find things that your doctor doesn’t mention. In the past, when I was with an HMO, my oncologist never went over the radiology reports with me and there were a number of things that I needed to know as well as things she should have known but did not pick up on.
I reported on the positive results of my meeting with Dr. Liu in the post Stability, Carcinoid Cancer 2016-10-27. At the time, we did not have the actual written radiologist’s report. It is worth understanding that with chronic disease like neuroendocrine, we get many scans and radiologists typically compare previous scans to the present scan. In this case, October’s scan was compared to the scan from October last year (2015).
That radiology report about the CT scan came to me in the mail Saturday and I was amazed and very happy to read it!
- Neuroendocrine cancer – No lesions found in liver (Dr. Liu and I did find a lesion in our meeting and that had not grown, not sure why the radiologist did not) but the previous report had shown 5 or 6 very small lesions. They have shrunk to invisibility!
- Urinary bladder, kidneys, ureters – all normal. This is important because I have struggled with urinary bladder cancer recurring for about three years now.
- Everything else – normal! Still no sign of the primary tumor. Wish we knew where that little bugger is!
This is HUGE!!! From six visible lesions to one is unexpected, the monthly Sandostatin LAR injections (and of course my good living, Hah!) must be effective. Of course caution is in order, this is a radiologist that has never seen my scans before. Also, even lesions too small to see can start to grow again, in fact, it is said that the primary tumor generates microtumors that seed everywhere else.
But this is an even better CT scan report than I thought at the time of meeting with Dr. Liu. I am certainly really happy and ready to go forward with hope.
All of you who have our disease: Get copies of your scans and reports about scans and test results. At least try to read them. It will teach you things and may have good news.
May we all have the best possible outcomes,