How often and what do you have for imaging checkups?

[LilyMir]

Hi friends,

How often do you get imaging checkups and what imaging do you get (chest/abdomin? CT?, contrast/no?, PET? Brain MRI? etc). 

My oncologist started to tell me she does not want me exposed to too much radiation and contrast and that 6 months is enough for contrast CT, no need for repeat brain MRI. I don't buy it and prefer a repeat MRI for my brain after Chemo is concluded as well as 3-4 month max between contrast CT. I am not sure about value of asking for PET followup.

Am I being reasonable? I realize contrasts and radiation carries risk, but risk of missing recurrence until it causes symptoms scares me much more!

[Justin1970]

Hi lily 

I agree with you 6 months is to long I have been told mri brain scan and ct scan are not being done for 6 months but I've had a few problems in waiting for scans, they missed the brain mets by not doing another mri before I started chemotherapy and radiotherapy last October and by February it was to late as the chemotherapy wouldn't cross the blood brain barrier, so had 2 mets treated with gamma knife after suffering a seizure I've had some more activity relating to the gamma but I was told it's nothing to do with cancer but it clearly was related and I'm now back on a course of steroids and anti seizure tablets have been upped, I'm going to push for 3 month scans if I can as it's worrying things will progress without anyone knowing again, I don't think it is worth leaving things to long when we are already vulnerable so I would say the risk of scans out weigh the risk of cancer getting worse, I think you are being perfectly reasonable in wanting everything you can done, hope everything goes well for you and your feeling ok after your treatment,you have to do what you feel is right 

Take care Justin x 

[LouT]

LilyMir,

I never had brain mets, but after my lobectomy the first set of scans (w/contrast) was 3 months (I was diagnosed at stage 1a).  Then for the first two years after that it was every six months .  My pulmonologist wanted to move me to annuals after the first three scans (total 15 months), but I had wisely added an oncologist to my medical team (thanks Lungevity family) and he pushed for 6 month scans until I reach the two year point.  On Monday I go for my first annual scan w/o contrast and I must admit that my scanziety is "on the meter".  This is the first time I've been a full year without a scan.  My main point though is that my oncologist agrees with you on frequency although I can't speak to the MRI.  Once I was diagnosed, I already considered myself a "cancer risk" before scans so I was more comfortable with the more frequent scans up to two years.  Push as you feel necessary.

Lou

Edited August 17, 2022 by LouT
made an error in my timeframe for 6 month scans.

[Rower Michelle]

Hi there, 

These are excellent questions that come up frequently.  The answers vary by stage, lung cancer sub-type, and insurance.  Being that you're in Canada; the monitoring guidelines are likely designed by the Canadian National Health Service.  Your oncologist might be reluctant to talk about the reimbursement protocols, however, I think it's important to ask to see the guidelines that are published.   If you can; a second opinion is always a good idea... however it might not change the answer. 

Here in the US, there is no absolute standard and that's why so many people like us have questions.... 

I have Stage IV ALK Non Small Cell Lung Cancer with no brain mets.   I receive a chest CT with contrast twice a year; and a brain MRI and Chest/Abdomen/PelvisCT twice a year.  So every three months have some type of scan; just depends on which one.   I have an alternating schedule.  

PET scans are not typically used for routine monitoring; generally only if there is disease progression noted on the CT.  

Since brain and liver mets are most common with lung cancer; it's spot on to be concerned.  Unfortunately insurance dictates what type of care is received and when. 

Michelle 

 

[Tom Galli]

Lily,

As you read about my frequency, be mindful that I had 5 recurrences after supposedly NED treatments so that pattern likely dictated things.

I had two practitioners ordering screening scans, my medical oncologist and thoracic surgeon and both physicians received results and collaborated on the findings.  The surgeon ordered scans to check the condition of 2 bronchopleural fistula surgical repairs that occurred after my right lung was removed. I had a total of 3 stent insertion and removal procedures performed by a rigid bronchoscopy, and CT scans and X-rays were used to determine if stents remained in place.  These treatments overlapped my chemotherapy and during my stent phase, it seemed I was getting some kind of scan every other month. The last stent procedure happened after my CyberKnife curative therapy, and in fact, the stent was removed when my thoracic surgeon and medical oncologist reviewed the status of the CyberKnife therapy and finally pronounced me NED.  During chemotherapy, I always had a CT scan at the midpoint of chemotherapy treatment, then 3 months after chemo was complete. A PET scan was always performed when a CT scan showed progression and results were assessed before a new therapy was started. I had a brain scan during my initial diagnostic work-up, another one after my 3rd recurrence and then a brain MRI 10 years after diagnosis.

After my 5th line of treatment (CyberKnife), my oncologist started me on a quarterly CT scan. This pattern continued for 2 years. When quarterly scans showed NED, my scanning frequency changed to one CT every 6 months. That sequence held for 2 years. Then screening was an annual CT for 5 years. I had no PET scans during this period and the aforementioned brain MRI at 10 years after diagnosis. Note all CTs were diagnostic grade not low-dose scans. After 5 years of NED, CT scans were ordered every other year, and I had a medical oncology visit twice-a-year. After my pronouncement of "cure" 2 years ago, I now have a low dose CT scan without contrast every year and one medical oncology appointment yearly. In fact, my low dose CT scan is scheduled for September 8th!

My medical oncologist and I discussed the threat of medical radiation. He viewed the threat of undetected metastatic lung cancer as significantly higher and I agree. His view was he needed to find what would kill me, and my risk of metastasis was so much higher than the risk of damage by medical grade radiation. Even given the constraints of medical insurance, my doctors had the ability to order procedures tailored to my unique need, and I am grateful for that. I was fortunate to have had all my treatment while covered by a feature-rich medical insurance policy that was part of my employment benefits. There were questions raised but these were easily fielded by my medical oncologist given my recurrence history. Now retired, my insurance is Medicare, but I am fortunate to have Armed Forces "Tricare for Life" coverage that picks up everything Medicare doesn't cover. I also have complete Veterans Administration medical coverage because I am a service-connected disabled armed forces veteran (disabling conditions not cancer related). So, even in retirement, I have many avenues available to help pay for medical procedures. To my knowledge, Medicare never questioned my screening scan frequency. 

Stay the course.

Tom

 

[Pstar]

Hi Lily. I was diagnosed with LS SCLC. I had a brain mri with contrast before I started 30 days of radiation. I then had a chest ct with contrast one month after completing chemo and radiation. I am scheduled for chest ct with contrast every 3 months. I also enrolled in a study where I get brain mri with contrast and chest/ abdomenial ct with contrast every 3 months for year one then mri, chest/ ab scans with contrast every 6 months.

[catlady91]

My mum has a scan every 4 months. Her oncologist said that she could scan her less often but she said she wants to take extra care of my mum. 

[Judy M2]

Since October 2019, I've had Medicare-authorized PET/CT scans every 3 months. I've also had 30x chest radiation. My primary doctor has just put me back on annual mammograms after a 2-year hiatus. 

I'm Stage IIIB and have never had a brain MRI. 

[LilyMir]

Hi Judy M2, seems almost  everyone is getting contrast CT, not PET/CT, from my polling.

Did you ask specifically for PET/CT or is that the practice in your Cancer centre?

By chest radiation, I assume your mean good old 2D chest X-rays?

Thanks!

[LouT]

LilyMir,

I just had my first annual scan and it was w/o contrast.  So was my last scan (my final 6-month scan).  So it depends on the case, the doctor and other factors like initial disease stage, etc.

Lou

[Judy M2]

My oncologist is a general oncologist in a community setting, not a thoracic oncologist at a national cancer center. His standard practice is PET/CT scans every 3 months, and Medicare covers them. I think I've only gotten one CT scan with contrast and that was while I was in treatment to check my response. 

My radiotherapy treatments (nothing like Xrays) were 5x a week for 6 weeks, concurrent with weekly chemotherapy infusions. 

[Karen_L]

The only thing new I can add is that MRI involves no radiation, per my radiologist.

I have CT with contrast every three months and they monitor my creatinine levels for evidence of kidney problems from the contrast. A kidney specialist I consulted said she is not concerned given the results of kidney-related blood work.  I have brain MRIs every two or three months as followup to gamma knife for brain mets.