After several annual scans, then...?

[MBinOregon]

Hello all,

I've been away.. eh, quite a while now that I'm thinking about it.  Frankly, on purpose as I have PTSD from my diagnosis and all the treatments afterwards that I went through pretty much on my own, so it re-traumatizes me to constantly be expose to the term "cancer" and the sad stories, etc.

Anyway, I digress...  I hope those who happen to remember me are still doing fantastically ❤️🙏

A question for those of you who have been on this journey 10+ years.  How many years of annual scans did you do (or are you still doing annual scans?) and what was your next step?  Did you do 5 or 10 year scan?

Last week I had an annual scan which came back NED again, so thankfully.  Later that same afternoon (the result/report came out a couple of hours after the scan, so I almost always know by the time I meet with my doc in-person or on the phone), my doc said "... your initial treatments ended 2018 and I feel we should stop with this one or at maximum one more annual scan and stop the surveillance scan."  I was NOT prepared for that.  Was I happy? absolutely, but I thought you go from 3 months > 6 months > every year > then 5 or 10 or whatever.  So I mentioned that (shouldn't we do 5 or 10 years rather than stopping altogether?) and he said after 5 years, the research doesn't support the long term surveillance scans as the likelihood of false positive increases.  So he told me "let's do one more and you can think about it." 🤔🤔🤔

As much as I don't enjoy the scan and the reminder, AT LEAST the annual scan gives me the... umm.... assurance??? of whew, ok, I'm ok... you know?

So I was wondering what everyone else is doing with their scan - how many annuals have you done or did you do before you were graduated to the next step and what was that next step for you, 5 year or 10 year scan?

Thanks much. 

MB

 

[edivebuddy]

Well I don't know what your oncologist think ls is science but the NCCN recommends a lifetime  of annual low Dose ct scans for stage 3 and above lung cancer survivors after 5 years. 

You can coordinate between the oncologist and your  gp to take over to make it more convenient. 

 

[Tom Galli]

MB,

Good to hear from you!

I'm entering my 21st year of surviving a lung cancer diagnosis (progressed to Sage IV after thoracotomy). I'm still having yearly scans. I had 4 recurrences after supposedly NED treatments so it was prudent to have a lengthy and frequent post-treatment scan period. At about survival year 10, I graduated from 6-month interval scans to yearly scans. At year 17, my scan type changed to low-dose CT without contrast. My September scan was NED and I'm scheduled for a September 2025 scan. Why?

My medical oncologist doesn't have study data on recurrence for long-tenured survivors. Few of us attain that status, but I know more than a few long-term survivors who've had a recurrence. So without data, scanning to catch a recurrence early makes good sense for me. I'll likely continue with yearly scans for the rest of my life. It is a small price to pay for my peace of mind.

Stay the course.

Tom

[LouT]

I wouldn't support any doctor saying that long-term annual scans are not recommended.  In 2019 I was diagnosed at stage 1a and my treatment was surgical.  To this point my scans have been NED and my oncologist has made it clear that we would do this for the rest of my life.  He clarified that after 4 years he was less worried about recurrence from the original cancer, but more concerned about the fact that since my body has already produced cancer (twice, colon then lung) it might do it again.  So perhaps literature does indicate low incidence of recurrence from original cells, but some of us have a propensity toward cancer (my mom, dad and many relatives died of cancer).  So whether from original cells or new cancer cells (both can be called recurrence) I believe an annual check seems like a prudent thing to me.

Lou

[Karen_L]

Hi MB,

When my oncology radiologist suggested we could go from every 6 months to every year I asked her if she had lost her mind. Then I sweetly added, "No thank you." 

I like @edivebuddy's nod to the NCCN guidelines.  It's about as much certainty as we're going to find....

[MBinOregon]

Thank you all so much for your inputs.

When the doc (who's a radiation oncologist, btw.  I was always a little confused why he was the one ordering the annual scan and meeting with me, not the medical oncologist.  But since I liked the doc, I just went with it... until now) said we should stop the scan, immediately my gut screamed and naturally I've been doing a lot of researching into this in addition to asking this forum and it turned out my gut feeling was (as it always has been) once again right.

I'm going to go see my med onc to see how he feels about annual scan for life and if he agrees with me, then I'll go back to him, otherwise, I'll find myself a new doc because, as someone wise ( @Tom Galli, ahem 😉) wrote a long while ago, it's "fee for service" - I mean I'm on my 4th medical oncologist, so I should know 😝

Thanks again, everybody ❤️

MB

ps. I'm so so so happy to see you guys are doing well - @Tom Galli and @LouT