Aqx99 wrote:I had my first post-treatment CT on Tuesday and got the results today. NED!! ... My oncologist is going to look over the scan herself and go over it with me at my next office visit.
O Stoma Mia wrote:Aqx99 wrote:I had my first post-treatment CT on Tuesday and got the results today. NED!! ... My oncologist is going to look over the scan herself and go over it with me at my next office visit.
Congratulations on your NED status. Good news!
What I would like to suggest is that you use your next meeting with the oncologist to clarify what, exactly, will be the steps taken for surveillance over the next 5 years.
Since you will probably be seeing your oncologist only once every three months or so from now on, it's important to know what the overall plan will be. You can prepare a list of questions in advance of your next meeting.
Some of the questions might be:How often will CT scans be done? Ultrasound scans? Chest x-rays? PET scans? MRI scans? Who will decide which ones?
How often will tumor marker tests be done? Which ones? CEA? CA19-9? CA125.? Others?
How often will comprehensive blood panel tests be done (e.g., serum chemistry, CBC, etc.) ?
When will my next colonoscopy be scheduled?
What exactly will they be monitoring, and what will they be looking for as critical warning signs?
What should I (the patient) be doing in the mean time to minimize future problems?
Which doctor will be in charge of the overall monitoring program? The GP? the oncologist? the surgeon? Note: If your reversal is in January 2018, then it will be the surgeon who will be having the last contact with you, and the oncologist will be essentially out of the picture, unless other arrangements have been made. If you have post-reversal problems, then who will be the primary contact doctor? Who is in charge of controlling your overall followup, including both the cancer-related issues and the LARS/QOL issues?
These are important questions to ask because once the formal followup period starts you be on your own and not be seeing anyone in particular on a regular basis except for once every three months or so -- and a lot of things can happen between one quarterly meeting and another.
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At the end of treatment, some major cancer centers have a formal hand-over procedure whereby a followup medical team is formally identified and a surveillance program explicitly mapped out and put in place, but at some of the smaller clinics or rural hospitals this is not the case, and you are essentially faced with setting up a kind of Do-It-Yourself surveillance.
You can also download a copy of the Colon Cancer Survivorship Form from the link in the post below, and it will give you an idea what some of the tracking options are-
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53128&p=419697#p419697
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Colorectal Cancer Survivorship Care Guidelines
http://onlinelibrary.wiley.com/doi/10.3322/caac.21286/full
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