Question on CT Scans for long term Stave IV survivors

Jayne

Hi everyone, to any the long term survivors on this site, what is the follow up plan for your CT scan schedule post NED? I thought I was having my last one in November but this new Oncologist believes in doing a full 10 years of follow up of scans from the date of my last occurrence. He says this is reasonable given the Stage of the cancer. Just curious what others are hearing. If I think back on the number of scans I've had since 2005, it's frightening but I guess having one more won't matter much.

JaneA

I was dx October 2014 - last treatment Sept. 2015. I am still having scans twice a year. My oncologist hinted that she might go 7 years out from last treatment so that would put me through 2022. I still have labs drawn every 3 months. I had rectal cancer - I have never had a colon polyp. I've had 2 colonoscopies since the end of my treatment, and both were clean. I had APR surgery so my sigmoid colon and rectum were removed. My colorectal surgeon has put me on every 5 years for colonoscopies now as he believes that I am at "normal" risk for colon cancer.

There probably isn't a right or wrong answer. I didn't have any liver mets - just one lung met that they used SBRT radiation on. My oncologist wants to follow my lungs a bit more because SBRT for lung mets was relatively new in 2015 - she wants to look for late effects of the radiation. Hope this helps.

Jayne

Thanks, Jane. So it seems like 7-10 years is the advice we're receiving. I'm glad to hear things are stabilized for you as well!

Teachertina

My scans are yearly unless something shows up. My journey started in 2006. I’ve had 2 recurring issues and this week my scan found another small suspicious area in the lung that has already been a problem before. My recurring cancer is renal cell carcinoma. My oncologist said it’s a half inch and too small to biopsy so another chest ct will happen in 3 months to see if it’s growing. Then radiation or surgery. Wait and see, again. Just glad we are catching things early! I’ll keep scans going to keep me going! My surgeries took one kidney, my spleen ,one lower lung lobe, and 20 percent of other kidney. I’m glad I came with spare parts! I’m like an old car with a check engine light that keeps coming on! I’m a 14 years and counting survivor. I just keep going into the shop for repairs! I know this is how it’s going to be for me from now on but that’s ok. Scans can be your friend, keep getting them and do the maintenance that’s required to keep your engine running! Best wishes to you!

T-Birdie

First congrats on your survivorship. Everyone's journey will be different depending on the health and any underlying conditions. I am 7 years clean from stage 4 colon cancer that moved to my liver. I had 3 years of blood and CT scans every 3 to six month at 5 years clean I have the CT scans once a years and my colonoscopy was at 5 now every 3 years until 10 years without any situations.

Blessings to you.

SurvivorSusan

My last treatment for stage IV colon cancer was 2010. My oncologist went to scans every two years after 2015. Then I had a new and entirely different type of cancer appear in 2019 (esophageal cancer - squamous cell type) and recurred in 2020. So I'm back to getting frequent scans but I had been told that I'd go to scans every 5 years after the 10 year clear mark.

alivenwell

I was diagnosed in 2012 and NED in 2014. I had at least 3 CT Scans during that timeframe. I suppose another CT Scan would be a good idea after ten years. I did colonoscopies and one CEA Marker test. If a friend did not push me to get the first colonoscopy, I would not have known cancer was in there. CT Scans pick up cancer tumors that are the size of a grain of rice.
Good luck!

LiveWithCancer

I have a friend who was diagnosed stage IV small cell lung cancer. She crossed her 10 year anniversary and shortly thereafter, her cancer took off and she passed away a few months ago. She isn't my only friend whose lung cancer took off after the 10 year anniversary ... and it took their lives when it did. Good for your oncologist for wanting to keep an eye on your NED status!