Hi Everyone,
Your feedback/advice would be greatly appreciated. Here is a brief history:
Mid-June 2014 - Diagnosed with "Stage 3" colon cancer, met with surgeon for pre-op advisement which was that a total colectomy was needed/best. The following week, a surgery was scheduled and the tumor as as many lymph nodes and cancer was removed as possible. Post surgery only small intestine and rectum remained, and so the small intestine was attached to rectum and Dr. said it was air tight. Following surgery, a hospital stay was needed to recuperate and to regain
bowel functions and walking ability. After that, approximately 2.5-3 weeks of rest away from stress and barking/meowing pets was taken. Then a 6-month chemo therapy program was started, with 5-FU and leucovorin. Towards the end of the chemo therapy, it was determined that the treatment was taking its toll and the oncologist eased back on the leucovorin. After chemotherapy ended in early January 2015 (3.25 years ago), quarterly blood tests, bi-annual CT scans,
and annual colonoscopies were performed for 2 years. When the 3 year mark came (the time starting from end of chemotherapy), the oncologist said that 85% of the chance of recurrence usually occurs during the first 3 years and she was happy with how things were going, so blood tests could go from quarterly to bi-annually and CT scans could go from bi-annually to annually. The surgeon said the colonoscopies looked clear for the past 3 years and so colonoscopies could
be every 2 years instead of yearly. The CEA results were good and nothing was noteworthy about them from 10/2015 thru 10/2016 or 1/2017. CT scans looked clear and so did colonoscopies. Then, there was an uptick in CEA noticed that could have started either 1/2017 or 4/2017, when CEA rose to 2.1 and then 3.0. For 6 quarters since then, it's been only going up, by higher amounts than just one-tenth, two-tenths, or three-tenths of a whole point.. more like nearly a whole point
or sometimes a whole point. This was obviously concerning, as previously the CEA would bounce up and down by fractions of a point, now for 6 quarters only going up. The only exception was when the oncologist ordered 2 CT scans a month apart from 3/18/2018 to 4/18/2018, when the CEA stayed at 5.5, but the following month on 4/18/2018, it turned to 6.1. The oncologist had a threshold of anything above 6.0 requiring ordering an early scan, so a CT scan was ordered and
performed last Saturday (4/21/18) and the oncologist just called with results today (4/24/18). The Radiologist said after the scan that the scan may or may not need to be redone because there was breathing occurring when holding of breath was needed, but the oncologist said the scans were clear and usable. She said there is a 1x3cm mass in the abdominal region, on the right side. She didn't say it was by any organ and scans of her chest and pelvis showed clear (only scans of
chest, abdomen, and pelvis have been ordered for the past CT scans). She said the surgical board would meet tomorrow and review the scans to advise on what the next course of action should be.. whether a biopsy or another/different scan. They don't know if the mass is cancer, benign or malignant at this point. She said she would call back tomorrow afternoon after the surgical board meets to review the CT scans.
She says she doesn't know what the surgeons will do because it's "so small" but will get back to us tomorrow afternoon by phone. I'm not sure how she can say it's small if 3cm is over one inch already.
The oncologist was asked if the last CT scan from August 2017 (7-8 months ago) should have also picked up the mass, she said it should pick up if it's a millimeter or larger (think that's what she said, or was it 1cm), so it wasn't seen somehow. She said the spleen looks clean but didn't mention the other organs that I recall.
Here are questions to which advice/feedback would be greatly appreciated!:
1. Should the previous CT scan have caught what is by now a 1x3cm mass?
2. Could she be wrong and the latest CT scan from last Saturday (which the Radiologist said had too much breathing going on) have been compromised causing a false positive?
3. Would CEA rise over the past 5-6 quarters straight, maybe due to this mass, mean it is definitely cancer or would CEA rise for non-cancerous masses forming?
4. Would you say 1x3cm is considered "small"?
5. What do you recommend as next courses of action?
6. What do you think the surgical board's assessment be tomorrow after they review the CT scans? Or what ought they be?
7. What other things should be done? What other questions should be asked?
8. For some reason this oncologist set CEA above 6.0 as threshold for action. But it seems this message board indicates any CEA value over 4.0 or 5.0 would be actionable?
9. How fast typically do masses form? Or how long would it typically take for something to grow to a size of 1cmx3cm?
Really worried and hoping it's something benign or something that could be resolved with shaving bits of the liver, as it seems some with colon cancer and have gone NED only to see some sort of recurrence have had successful surgeries to remove something from their liver and have continued living for like 10 years+. The scariest thing would be that it is located somewhere inoperable.
Please let me know if you have any valuable feedback or advice on this. Thank you kindly in advance!
Below is the CEA history:
10/31/15 - 1.9
1/26/16 - 1.6
4/30/16 - 1.9
7/28/16 - 1.9
10/29/16 - 1.7
1/28/17 - 2.1
4/29/17 - 3.0
7/29/17 - 3.1
11/1/17 - 4.2
2/6/18 - 5.5
3/5/2018 - 5.5
4/2/2018 - 6.1