Cadence of CT/PET scans

[JoshK]

Question on scans - how often do you do a full-body PET or CT scan? The reason I ask is this: My mom has been getting CT scans every 6 weeks since her radiation...more than normal just to monitor any potential side-effects from the strong dose of radiation to her lungs (e.g. pneumonitis). Next one will be in 2 months and then they'll move to every 3 months as normal. So far, everything is clear - NED for 1 year in April! She also has a brain MRI every 3 months.

However, what really worries me is I just found out these are lung-only scans (except of course the brain MRI). The doctor said PET scans will be only once per year (and the last one was a year ago but the next one won't be for a few more months because they don't want to expose her to so much radiation from a scan just 6 months after her radiation treatment). Doctor said that's "what's recommended." No full abdominal CT scans are planned.

This worries the hell out of me! I don't want to wait for symptoms to present themselves and then do a scan and realize...oops, her liver is covered with tumors! Or, oops adrenal mets! I always wondered how people figure out one day that they have multiple mets suddenly, and this seems to be the answer...they're getting scans, but not of their whole abdomen.

Any feedback or advice?

Thanks!

[Rower Michelle]

Hi Josh

I’ve been wondering about the same thing!  I’m getting the results from my 16 week CT scan today which was of the chest only. My ALK peer mentor gets abdominal CTs in WDC.  I’m going to ask about that today.  

I did ask my onc about the PET scans & he has no plans for one right now unless there are clinical changes in the CT.  

My Mom is an endometrial cancer survivor in NJ & gets a PET every six months.  So I suppose there is wide variance on the scans.  (Mom has Medicare & Commercial Insurance)

I did ask a friend of mine who is the General Counsel for one of the big insurance companies over lunch & her response was chilling:  insurance companies do not want to pay the imaging costs. A CT is about $5k & a PET is over $8K.  

Often times the insurance company will require a CT scan before a PET can be done to justify the cost.  This is frankly silly as it actually increases the cost of care. 

My dream is for better patient rights when fighting cancer.  The insurance companies have far too much influence over our care.  

So glad to hear your Mom is doing well! 

Michelle

[Tom Galli]

Josh,

I've had only 1 full body scan in 15 years -- a PET scan done last year.  During my diagnosis process, I had a chest CT, a bone scan (that was likely full body but just looking for mets in bones) and a brain scan.

I talked to my oncologist about scans and areas of concerns.  He told me that lung cancer has a pattern of metastasis that normally, generally, usually is confined to organs and bones in the abdomen and the brain. Therefore, scans of these areas are typical.  

Stay the course.

Tom

[Rower Michelle]

Just back from the Onc, he said exactly the same thing.  In the CT of the chest he gets a picture of 90% of what he's looking for which is the liver and adrenals.  My oncologist thought the abdominal CT wasn't necessary.  

[Leo]

Josh, I was diagnosed NED Jan 23 2018 (PET/CT Skull-thigh) and was set up on a 3 month schedule. My 1st 3 month surveillance testing (April/18) was also a PET/CT skull to thigh). 2nd three month surveillance test (July/18) was CT -Body (Chest, abdomen, pelvis) as was my 3rd three month surveillance test (Oct/18) . This was followed on Nov 3/18 with a PET/CT due to an area of concern-I was again cleared as NED following a biopsy of that area but new area of concern was noted as a monitor item. On January 21 another PET/CT; followed by an EBUS. Biopsy from EBUS found small local recurrence (same area as original treatment) PET/CT and Brain MRI confirmed no regional or distant METS and clear Brain. Currently back in treatment - Chemo/Immune Therapy followed by targeted radiation (as needed) - 

From Jan/18 to Jan /19 I have had 4 MRIs to Brain (all clear) 

So I have never just had CT of Chest during my surveillance testing 

 

 

[JoshK]

Hi All, 

Thanks a lot for your responses.

My concern is that these scans are NOT of the abdomen, much less the whole body. Unless I misunderstood her doctor, they are of the lungs only - not other organs like liver. Upon reading the report, it does only talk about the lungs, whereas the previous ones she has had mention other abdominal organs.

So, that is what concerns me. Has anyone heard of this - a lungs-only scan - or is it likely I misunderstood?

I will probably give her doctors a call next week to discuss this and some other matters, because so far I don't feel very settled.

Thanks again.

[Leo]

 I have not heard of just doing the lung CTJosh- They suggested a lungs only scan to me very early on, on the basis I had had a full response.  I said no. Pet/CT would be preferred but Whole Body CT (lungs, abdomen and pelvis) was the minimum unless they had other testing to cover the other primary organs given the rate of recurrence. They acquiesced. 

PS - I did have difficulty in May/18 and they gave me a CT Angiography (checking for embolism), a lung CT and it only assessed the lungs and Brain MRI but I was having specific symptoms/side effects that lead them to these specific areas, (cough, congestion, balance issues & nausea. I ended up on steroids for 14 days for pneumonitis and mild brain inflammation from PCI. 

As a patient I would not be comfortable with a lung only CT, certainly not this early in the surveillance testing cycle.

Hope this all turns out in you favor. At a minimum I would want commitment of 1 more year for whole body scans. 

[JoshK]

Thanks Leo - the key point is that there does seem to be a lungs-only scan based on what you're telling me since that was suggested to you.

Let me take this forward with my Mom's team.

[06211219]

I am beginning to wonder why they aren’t just giving my husband a PET scan. He has had numerous mri’s for the brain and apparently ct scans for the lung only. He has had some symptoms for the past few months that honestly made me feel like it spread to his spine or bones and when we spoke to his dr he said”oh those symptoms are from chemo”, like he says all of the time - nevermind the fact he stopped chemo over 2 months ago. Well on Thursday he had his 4th immunotherapy treatment and finally I guess because his calcium levels are high and he has lost over 20 pounds in one month (90 since diagnosis 5 months ago) now the dr is taking me serious. When I asked well I thought you ordered a ct scan to check for that he claimed a ct scan won’t show if it spread to bones or spine!!!! So now WE the patients have to ask the radiation oncologist to order an mri of his spine when we go to get his brain mri results on Tuesday. My point in all of this rambling is the dr’s and insurance companies seem to only be about themselves, and money. When I asked about just getting a PET scan he said it wasn’t necessary. I really don’t understand, my husband is getting worse by the day so let’s just send him for individual scans every other week. And I guess I just want to understand why when there are symptoms, they don’t take the family serious?? He is stage 4 SCLC, they know this has a propensity to spread to bone etc. It was already in his brain when diagnosed so why wouldn’t they check?? He only seemed concerned that with the chemo the lungs were stable. I am beyond frustrated and just over all of this. 

Anyone have any experience with this type of situation?

sorry for the rambling.

[BridgetO]

Has your husband considered asking for a second opinion? Preferably one by someone not associated with present doctors? I think a second opinion is a good idea when people hve uncertainty or lack of full confidence in their doctors or their treatment.

[06211219]

This was the second opinion.

[BridgetO]

Oh Dear!  A third opinion maybe?

[Rower Michelle]

One of my team mates got four opinions before she found an oncologist that would meet her needs.  

[06211219]

This is the second opinion. Just wanted to know if it was normal to have not had a PET scan. Or do they typically wait til they see other symptoms before they start checking for things? He started having very specific pain in his lower back and jolts in his arms and hands and fingers - I truly thought at that point it spread - but his doctor as I said in the post blames every symptom on chemo - and I finally had to call him out on it at that appointment Thursday. 

 

Thanks for your suggestions.