weisssoccermom wrote:I basically had the same as W & W (except my 'biopsy' was a full thickness excision) and I only had a CT chest/abdomen/pelvis every 6 months. I may be cynical here, but I highly doubt that you would get your insurance company to pay for an MRI every 3 months. Like the newer W&W, my protocol was not 'standard of care' so I had to jump through some hoops to get covered. Still, the insurance companies work off of what doctors/panel of doctors have recommended as the 'standard of care' follow up and an MRI every 3 months is NOT standard. Now, if there was a reason to have one that often, that might be a difference but since the implementation of ACA, insurance companies have to justify their costs, etc. so they are even more tight with their approvals. Still, everything they do is based upon what doctors approve of.
I agreed to the following follow up when I said no to the LAR surgery (had chemoradiation, excision and more chemo)
every three months: either a flex sig OR a rectal ultrasound (they alternated)
Every 6 months: CT scan - chest/abdomen/pelvis (I wouldn't accept anything less than those three body parts)
The above was for the first two years.
I'm honestly trying to remember what year 3 - 5 was but remember that I still had blood work every 3 months which eventually got stretched to every 6 months
I believe my CT scans were still every 6 months until about year 3.5 - when they were stretched out to every 9 months (I balked a little about that one)
By year 4, the rectal ultrasounds were stopped but I still had a flex sig every 6 months.
First colonoscopy was one year out from my excision: I had a benign polyp so follow up was at TWO years (standard). After that, I went to THREE years and assuming no polyps (either benign or precancerous), I went to the FIVE year plan. Even so, my surgeon wasn't willing even at FIVE years to let me go that long. Every 2.5 years I had a modified flex sig in between my scopes.
Honestly, the surveillance was a pain but I didn't want the LAR surgery and I was wiling to do whatever I needed to. I'm now 12+ years out from my diagnosis and I think my surgeon has finally agreed to stop the flex sigs and just go for the full scope every five years. My GP now does my blood work but since the CEA was never a good indicator for me (0.5 at diagnosis even with a big tumor), we dropped that as well. I still get a full CHEM panel as well as a CBC, Vit E and thyroid every year at my physical. At five years, my insurance company said no to any more CT scans but said that IF a chest X-ray were to show something they would approve the CT....seriously???
Good luck with your surveillance.
lakeswim wrote:Hi Weisssoccermom. Thanks for all that info and details. I had TNT (chemo upfront and then chemo/Rad). I don’t believe additional chemo is part of W&W protocol (but I agree that chemo should be part of equation before W&W!).
I’ve aiways been a healthy eater (stopped eating red meat when I was 18) and my husband is a vegetarian (so we eat healthy!) and I was always very fit so who knows what caused my cancer. I believe it may have been inflammation from my diet (given I had leaky gut 2x) which is why I’m particularly interested in dietary changes to avoid further inflammation.
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