In the last year, my oncologist said he wasn't going to order PET scans any longer. I know that some insurances (I have Medicare) are limiting the number you can have. I asked if that was the reason, and he said they're not recommending them now.
I've had extensive bone mets for 6 years and for the first 3 years got PET/CT scans every 3-6 months.
I'm now just getting a CT every 6 months. Prior to that I was getting a PET/CT every 6 months bc I've been very stable. PETS have been helpful in showing activity, which is an important piece of the puzzle.
Has anyone else dealt with this issue?
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luckysmom13
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Hello my friend- I had a pet scan recently after having just a CT scan showed stable disease but then I was in a car accident and the CT scan I had for that showed spread to my liver! My oncologist didn’t believe that was true so ordered PET scan and told me it wasn’t spread… so lots of scans in just one month! It can’t be good for you to have too many… but not good if insurance company’s start limiting us!
I am seeing at Lumbardy Georgetown. They have not suggested pet scans for a while now. I do have CT’s and bone scans. What my ecologist told me when joining is for 40 some years, is that he’s seen too many wrong results from pet scans and they prefer the other two. Also pet scan Has more radiation and the two above. Personally I wouldn’t worry about it,. I’ve had breast cancer for 25 years now and stage four for 5. It’s not going well for me right now, but there still great figures
interesting how the various imaging tools used to monitor the mbc vary from practice to practice. i live in western MA and my treatment is at a mid-sized cancer center that is also assoc with Dana Farber in Boston. i was diagnosed with primary BC in 2013 and mbc in 2017. i have only had 2 Pet Scans the entire time....and both were done back with the primary diagnosis in 2013/2014. i was led to believe it is the high cost of Pet Scans, along with other testing diagnostics that are just as informative, for 'their' reasoning for not doing Pet scans routinely. pretty sure it is more to do with the cost/money?
so where i go, they do Ct Scans and head to toe Bone Scans every 4 months. and occasionally an MRI if something warrants 'a closer look'.
my guess is that it may be a new policy of the facility you go to and not your oncologist that is driving the decision and he/she is being close-lipped?
the Bone Scans have been good at picking up any new bone mets. maybe you could ask your oncologist about them? i too have medicare.
I have never had a PET scan. Or at least it was called something else. Keep forgetting about it. The cat scan is reliable though and usually picks up any changes. I only get these now and not the bone scans. I guess because the activity is my lungs.
I get PET scans a few times a year. It showed the cancer in my stomach lining to be in remission. My rectal is a bit active so my oncologist changed my Piqray from 300 to 150 mg. I take it at 7pm and have less side effects. If it wasn’t for the scan we would not know. Go for the best oncologist you can find. Mine is retiring and I’m researching my next one. He recommended one and I’ll try her first. I also have an oncologist at Memorial Sloan Kettering. I recommend emailing them for information and perhaps a second opinion. You are worth it. My mother in law said “if you are not good to yourself, who will be”. Take care. Reenie, Rochester NY
Hi Reenie,It’s interesting that your oncologist let you take 150 mg of Piqray. I was trying 300, 250 and 200 mg and had an allergic reaction to it. Then my oncologist told me that 200 is the lowest dose. How are you doing on it? Are your Mets stable?
The cancer in the lining of my stomach is in remission and my rectal cancer is stable. Waiting for my 27-29 test, which I have done every two weeks to see where we are at. Thanks again Reenie
I have been having PET scans every 4 months for the past year and a half. I am on Medicare but have a good secondary insurance that covers them, at least for the moment. I asked to do these instead of having both a CT and a Bone Scan as I thought that the radiation from a PET would be less than the combination of a CT and Bone Scan. Also, my veins are very small and they always have trouble getting the IV in, so I did not want to have to do two tests with IV's. My doctor said PET scans are fine and so far have shown stable mets.
I’m relatively new to this, but my onc is getting me a FES/PET Scan as a baseline , he then said we would do contrast CT/ MRI’s every 3 months then at 1 year do a FES/PET again. I’m using Northwestern Medicine.
Good morning! My first four years after diagnosis I had PET scans every 3 months and a bone scan once a year. This last year I've been getting CT scans every 4 months or so and a bone scan once a year. It was def my insurance company that decided I'd not be getting any PETs, but I'm hearing this protocol more and more so I wonder if it's becoming the new standard of care.
There is a new PET just for ER+HER2- that is much easier than the PET/CT that I get every three months. No fasting, no contrast dye. I had it once, then they realized that, because I am in a clinical trial, I had to get the old, regular kind of PET. The one time I had the ER+ PET, they said they had to wait for the "special" radioactive isotopes to come in from New Jersey (I am in NYC). It is a better diagnostic for ER+ than regular PET.
I am 4 yrs since dx, and have always been followed with PET scans for the body--the one using FDG. No CT or bone scans. A CT scan does not show progression in the bones. I had one brain met on dx (and nothing in the body except the primary tumor) and they follow that with MRI's of the brain. I have been at three different clinics in my city, and am now at an NCI designated cancer center. I also suggest that you get an opinion from an NCI designated center or a BC or MBC specialist. Best to you! Kay
I am having the same experience and I am on Medicare. I have primarily been getting PET scans for 7+ yrs.Every 3-4 mon. Last year I had a single lymph node in my chest begin to grow, it was slow growing and watched with PETs for over a yr, when it hit 5 cm a surgical biopsy was done and it had my same receptors. I had radiation to it and that took care of it according to 2 subsequent PET scans then in Jan of this yr my Onc ordered another PET and Medicare denied it only stating that I had reached my 3/lifetime allowance.( I have had 21 PET scans in my MBC life) She said she felt fine about doing a CT and Nuclear Bone Scan which I had in Feb and was clear. My Onc says that if I present with a suspicious area she will jump thru the bureaucratic hoops to get Pets for me. But ugh that was one long day at the hospital getting all the requirements done for CT and Bone scan!
I have dealt with this issue, and was told by my dr. , " they are too expensive".....well its my choice and as long as Insurance , Medicare and regence pay, I'm doing them every 6 months. My co pays are not cheap, but knowing exactly if my cancer is contained, growing, matasisized some where else, is worth it.
I am on Medicare and Regence Blue Shield/Blue Cross as my advantage plan. I have been having PET/CT's every six months for the first 1 1/2 years after diagnosis and for every 3 months for the last 1 1/2 years now. The PET was denied with my first oncologist 3 years ago, who never bothered trying to get it pushed through. I changed oncologists right after that and my new doctor has not had any problems getting the PET/CT's approved straight away. That's not to say things may change of course. My last PET/CT was 4 weeks ago. Regence does insist on having an approved reason for the PET/CT's and my doctor has gotten them approved based on my markers going up every month for over 1 1/2 years now. Nothing has shown up yet on any of the PET scans or the MRI I had 2 weeks ago......I hate this disease...... I hope you can get things sorted out so you can feel at ease with your treatment! Take care!
Hi, in my opinion if you are able to, it would be beneficial to change to an oncologist who is a breast cancer specialist. In my home town the oncology centre is the newest on the island with the best scanners, which are used liberally. They do PET scans there often but the oncologists are all general, without specialisation. I travel an extra hour to go to the capital city centre and have a specialist oncologist there. At my centre they did extensive initial investigative scans, including 3 MRIs.
I never had a PET. My follow up scans so far have been CTs.
I’ve heard many negative stories of the other centre…where they rely more on their machines than anything else…they seem to roll out the same treatment to everyone…mostly radiology based…without differential recognition of cancer type.
Now of course this might only be true of my countries situation….but as a neutral private oncologist we know phrased it “ Fools with new tools are still fools”😀👍 Best wishes Zoe xx
I had a bone scan at diagnosis have not had another for 2 years. I get CT with contrast every 3 months.. in the uk. I am happy to keep my radiation down as low as possible and will ask to extend this to every 4 months if I continue to be stable. CT is for liver mets, but they look at my hip and chest mets at the same time.. bone mets generally move slowly anyway.
I was told by the female breast surgeon when I went for second opinion that she would order a PET scan but it would probably be denied and then she would do a CT scan. She said the CT scan was really just as good and could give her the information she needed. So I have been having CT scans every 3 months for the past five years now.
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