LilyMir Posted January 19, 2023 Share Posted January 19, 2023 Hi all, finally saw my oncologist. Was so surprised she decided I only need scans every 6 months from now on (my lobectomy was Apr 2022, adjuvant chemo Jun-Aug 2022, and started adjuvant Tagrisso targeted therapy from Sep 2022 for 3 years). Scanned (CT pelvic, chest, abdomen) after chemo Sep 2022 and after commencing Tagrisso Dec 2022, both NED. Only had one brain MRI May 2022, was fine. It feels too long with 6 month scans but she was adamant it is best given risks of high radiation doses involved. She is a lung cancer specialist. My head spinning a bit. Happy not to go through anxiety every 3 months but worried 6 months is not sufficient. Anyone else on 6 month scans, less than a year from diagnosis? Tom Galli, LouT and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 20, 2023 Share Posted January 20, 2023 Hi lily I agree with you 6 months is to long to wait my oncologist did the same to me with my lung cancer and brain mets, now after the brain met problem they changed there mind about the lung scan and moved it forward and I had it done this week, I was told the same about the risks involved of to much radiation I'm sure they know what is best so try not to worry atleast you have a bit longer between the scans to enjoy life, if you feel like something isn't right just tell them and they will have to do a scan sooner take care Justin x LilyMir, Tom Galli and Izzy 2 1 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted January 20, 2023 Author Share Posted January 20, 2023 Thanks Justin! I have a number of questions (you do not have to answer any if you are too tired of all of this, I genuinely and completely understand). I am just trying to understand how oncologists typically work on scheduling followups. I probably will seek remote second opinion. We don't have such luxury in BC. In your case, did you just get chemo or surgery plus chemo? Why did they put you on 6 month scans, as opposed to say 3 months, was there no evidence of disease in chest? Did they do brain MRI before/after chemo? They kept you on 6 months even when mets appeared in brain? Justin1970 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 20, 2023 Share Posted January 20, 2023 Hi lily I had radiotherapy and chemotherapy to my lung and lymph nodes I couldn't have surgery I had the first ct scan after treatment at 3 months and then it jumped to 6 months scans because it was stable and they were really happy with the results, The brain mri was done in early September but didn't detect anything, had they done another one when I started treatment it may have been found, I only had another MRI scan when I had the seizure last February, I was told it was normal to do 6 months scans after brain mets and gamma knife because of fluid and swelling,but after the surgery I was told it would be every 3 months for a year I think they should do scans every 3 months for the first year regardless of how good the results are take care Justin x LilyMir and Izzy 1 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted January 20, 2023 Share Posted January 20, 2023 @LilyMir, I relate to your feeling of "What do you mean, no scans for six months?" That's how I felt when I was dismissed into so-called 'active surveillance' after I had to stop immunotherapy. Life had been totally centered around that cancer center, then WHAM, I was dismissed. Very weird feeling! You know this, I'm sure, but all of your questions are useful for comparison only if you are asking someone with a similar biomarker profile or treatment history. I think the difference between medical systems also make comparisons hard. I just graduated to brain MRIs every three months instead of two because things are looking stable. I'm still on chest CTs every 2-3 months, even though I've had no signs of progression. <shrug> Unless I have a lot of questions or confusion, I generally go along with their scan schedules. I do always ask them what their reasoning is, and I find it helpful to review the NCCN treatment algorithms around the time I meet with my oncologist. (The NCCN guidelines are for treatment and scans.) Great idea to consider a remote review of your case. Congratulations on multiple NEDs! Tom Galli, Justin1970 and LilyMir 2 1 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted January 20, 2023 Author Share Posted January 20, 2023 Indeed a very weird feeling @Karen_L, bitter sweet. I obviously am thrilled my oncologist is not too concerned and seemingly assured enough to have 6 month intervals for surveillance (my stage, surgery, mutation and recent scans each played a role I am sure). On the other hand, my history (radiology missing my cancer in 2018) made me lose quite a bit of trust that doctors always make the right call. As a scientist myself, I am very familiar with CT radiation risk so totally feel relieved about reduction of such exposure but my mental capacity to just sit still and wait for 6 months seems lacking I have been digging into the literature, indeed there is a mounting pile of research papers recommending less frequent surveillance (6-12 months!). However, much of it is likely due to dwindling number of effective tools to handle recurrence if it happens, balanced with radiation risk. Will see what else I can find out. Tom Galli, LouT and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted January 20, 2023 Share Posted January 20, 2023 And, @LilyMir,your post has prepared me to initiate a chat about scan frequency at my next visit. So, thanks! Justin1970 and LouT 2 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted January 20, 2023 Author Share Posted January 20, 2023 I was actually thinking of you @Karen_L while I was reading up on frequent scanning. There seems to be a consensus forming favouring less frequent scanning but the reported evidence (of no advantage in overall survival) is poor due to mixed study results, and confidence is only moderate when I dig deeper behind these recommendations. I am no doctor but if you ask me I would have been happier with 3 months is first half of year 1, 4 months in second half of year 1, 6 months in year 2, 8 months in year 3, then yearly until year 5 or 6 but then again this is just my engineer brain talking. My oncologist seemed sincere in thinking 6 months is best for my physical exposure as well as mental health, but then again what if she is wrong- I am afraid there is no answer to this question and it will always be a risk vs. reward balancing act (and very dependent on specific patient case). On the bright side, my oncologist was brimming with enthusiasm that a cancer cure could be becoming within reach, not a pipe dream (she is very involved in research) so a little hope for all of us! LouT, Tom Galli and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted January 21, 2023 Share Posted January 21, 2023 In my case, I've had so much radiation I don't worry about it. I had 30x radiation treatments and have had PET/CT scans at least every 3 months since October 2019. I've just graduated to PET/CT scans every 4 months. Justin1970, Tom Galli and LouT 3 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted January 21, 2023 Author Share Posted January 21, 2023 Hopefully your radiation treatments were focused on tumors @Judy M2Whole body exposure is different and inherent risk is not theoretical. It is a balancing act. I have not heard of PET recommended for surveillance, though once was told it can be done annually but not more than that. Of course every patient case is different. I have a friend who is allergic to CT contrast so only has PET, regularly. Justin1970 and LouT 2 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted January 26, 2023 Share Posted January 26, 2023 Yes, the radiation was focused on tumors but there was some (temporary) collateral damage. PET vs. CT is mostly an insurance issue in the U. S. In my case, Medicare covers PET scans every 3 months. LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
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