Pet scan: My husband had a pet scan in... - Lung Cancer Support

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Pet scan

Lehdedi profile image
21 Replies

My husband had a pet scan in august and we asked the oncol when he would have another one and he looked at us as if we were crazy. Is this not something that is done to help see progress or regress?

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Lehdedi profile image
Lehdedi
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21 Replies
BrigidK profile image
BrigidK

I have only had one pet scan in 2 years of treatment. Many CT scans and MRI’s.

bigjohn104 profile image
bigjohn104 in reply toBrigidK

I had 1 pet scan and from henceforth they ordered a CT Scan for next month!

Lehdedi profile image
Lehdedi in reply toBrigidK

Maybe we will ask about a CT scan.....

gibdonnalee profile image
gibdonnaleeCommunity Superhero in reply toLehdedi

Yes, a Pet scan is a very expensive test. Usually it is done once and Cat scans from then on every 3 months or so. In fact, I am having one on the 23rd. Blood work is usually every month, that also gives the doc. something to go on. Hope this helps you .

Debby1125 profile image
Debby1125

I too only had one PET scan but several CT scans as follow up. PET scans are super expensive so I think they use them to see where action is and then can use CT scans to follow the places that lit up in a scan. Don't let doctor look at you like your crazy. Ask him for an answer.

Lehdedi profile image
Lehdedi in reply toDebby1125

Thanks

ThePurplePlace profile image
ThePurplePlace

I have only had one PetScan which was done that the time of my original diagnosis (for staging) back in March of 2015. At my Cancer Center they do CT Scans as my follow up and for surveillance scans and that seems to be the standard of care at many hospitals/centers. It is not unusual to only have one PetScan, but it's not like a new patient would automatically know that, so I'm kind of surprised as how your "doctor" reacted -- I would NOT be happy about that. They should realize that you are brand new to this and will have lots of questions? It's very common for new patients to ask these questions and I can still remember asking my Onc when I would have another Pet. She then explained that her standard follow up is dong via CT Scans (Chest, Abdomen, Head and Pelvic). It really depends on each Oncolgist, but is very common to have follow up by only CT Scans (although some do Pet Scans too or a combo Pet/CT Scan). My exception is that I also have Brain MRI's as I originally had a brain tumor and they see the brain better on MRI than on CT scans. We do a Head CT Scan every few months and an MRI at least once or twice a year. The longer I remain clear, the more they space out the MRI's --- I can see why you are not "thrilled" with this Oncologist! Hopefully, things will work out...

~ Lisa

bigjohn104 profile image
bigjohn104 in reply toThePurplePlace

Me too when they put the sugar solution to see exactly where the cancer is!

Lehdedi profile image
Lehdedi in reply tobigjohn104

whats sugar solution?

Lehdedi profile image
Lehdedi in reply toThePurplePlace

Thanks for the info....so helpful

Lehdedi profile image
Lehdedi in reply toThePurplePlace

Thank you so much for the info. I don't know why he didn't just explain to us about cost and that it is used for staging and that doing CT instead would give him the info he needed for our continued care...some of these physicians have been in this business so long they forget about us that are new to this...

PegD profile image
PegD

My onc prefers to use PET/CT because I have a ct contrast dye reaction.

Denzie profile image
DenzieModeratorVolunteer

Standard of Care for most types of cancer is one PET at diagnosis. The PET scan just tells them where metabolic activity is. It doesn't render an accurate picture of the details. A CT gives a much better picture of size and details like spiculation PET scans are extremely expensive and insurance companies will refuse to authorize payment for them following the initial exam.

I'm hoping more and more drs turn to the PET/CT that Peg mentioned. I had one to scan for bone mets before repair to my vertebrae.

Spainy profile image
Spainy

I had to fight for even one PET after surgery for staging, and it's common practice. Aetna insurance denied it several times even after consultations with my doctors. I disputed and appealed their decision and they finally allowed it one year later! I now have CT scans 2x year. I was so disappointed in Aetna and changed insurance companies. Sad we have to fight for health benefits we pay a lot for while we're scared to death and fighting for our lives. Good luck.

ThePurplePlace profile image
ThePurplePlace in reply toSpainy

Interesting I have Aetna too and have never had any scans Pet, CT or MRI denied and I have my CT Scans every 90 days. Insurance should NEVER regulate our health care, they should cover whatever we need, as long as it fits medical criteria and is the standard of care. I admit, I do not LOVE Aetna, but happily have not had an issues with scans. Other services and claims yes, but once we appealed, we always won. Sometimes it almost seems like a "cash flow" game to allow them a longer time frame to process and pay the claims! So unfair and the last thing we want or need to be worrying about when we are battling Cancer! Grrrr!! I wish we would change, but we have our coverage through my husband's employer that the only plans they offer are ALL Aetna plans and none of them are great -- High deductibles, co-pays and so on -- we also have to fund an HSA to try and help pay my deductible and co-insurance. Again....any hassle in living with Metastatic Cancer...!

Lehdedi profile image
Lehdedi

Thanks everyone for your help

bigjohn104 profile image
bigjohn104

The pet scan they did on me was 1st part plain the 2nd the injected through an IV a sugar dye solution because apparently cancer shows up through this better and where. Ask your oncologist staff they know, mine was a few spots on my upper right lobe!!!

pmsusan99 profile image
pmsusan99

Pet scans usually one covers neck to ankle and reveals areas effected. Cat scans usually every 3 months MRI not often. All depends on tumors, nodules, status. Your entitled to ask any questions and receive a reasonable response.

JRuthI1946 profile image
JRuthI1946

Ask to see the PET SCAN. IT WILL BE IMPRESSIVE AT THE LEAST. THE TUMOR LIGHTS UP. I BELIEVE THE TUMOR HAS TO BE MORE THAN MICROSCOPIC TO LIGHT UP.

katherineNED profile image
katherineNED

I've had multiple PET scans. One at diagnosis over 3 years ago, one after chemo and a few more after radiation. Last month I had a PET and CAT scan on the same day. I questioned this as I thought I should get one or the other and it was explained that each one has different details in the images. My PET is only slightly more expensive than the CAT scan. I've been getting CAT scans every 3 months since my recurrence. I wish I didn't get them as frequently as the radiation from these procedures is very high. It's a catch 22... get radiation from these procedures and be on top of the cancer or limit the radiation and take a chance on the cancer coming back or spreading :( Do not be afraid to question your oncologist and if they continue with the bad attitude, go to another doctor. Your husband's life is too valuable to have to worry about someone not giving you the information you need.

Lehdedi profile image
Lehdedi in reply tokatherineNED

Thanks for the info..We need all the advice we can get

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