Hi! I moved recently which of course means new oncologist — I have been NED with bone only Mets since 2017 and have had PET scans only; my new oncologist is doing a CT scan on me instead of my routine (albeit 8-9 months) PET. I’m wondering if any of you have had this issue—my other oncologist kept up with PET scans when I moved to her from another place because she said comparing apples to apples is always best. Do most of you get PET or CT/does it matter? Have any of you switched scan modes and did it “make a difference” … I’m not sure what I’m really asking — just feels uneasy changing what I have been doing now for 6 years ….thanks for any thoughts/insights.
PET scans to CT scans : Hi! I moved... - SHARE Metastatic ...
PET scans to CT scans
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TwithBC
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Congrats on 6 years of good health! I switched oncologist and went from PET to CT, with my new oncologist, citing the same reason. Every change is nerve-racking in this. But this one doesn’t have to be. New imaging changed nothing. Just a different mode to follow. And while every case is different, most of my MBC friends get CT as well. Good luck!
... but this one doesn't have to be... THANK YOU for replying! Sounds good; I'll keep nerves at the same level as usual, then 😉
I too started with PET scans but then my oncologist switched to CT scans. I suspect pet scans are more expensive. I never asked why he switched. Ct scans are easier to do. I feel confident in them so far. I see my newer oncologist tomorrow. I am going to ask her which is most accurate. 😊
CT has advantages as do PET scans. I would like to have an ocassional PET, but my doctor discourages it. PET scans are definitely more expensive. One disadvantage of PET is that it lights up inflammation as well as cancer. It's hard to distinguish. I had a PET scan that showed a large mass with a SUV of 13.2. I think my doctors were convinced I was a short-timer. One oncologist insisted it could be inflammation. Three years later I'm still here and doing fine. So I guess a lot of this was inflammation.
8.8 cm mass in chest wall
Oh my word!! That’s crazy! (Nice photo btw) 
My doctor took it for me while explaining my poor prognosis.
CTs are easier -- YAY. so yay (PETS were getting very "old" and cumbersome; CTs sound like a welomced change).
Hi, I also have MBC to necks bone since mid 2018. I only had pet scan once on October 2018 along with MIR and CT scan, after that initial pet scans my oncologist told me sometimes pet scan has falls alerts so he continued with mri and Ct scans every 6 months. Fortunately I am still fine. This year he ordered only Ct scan. I am on IBRANCE 100, faslodex and xgeva every six months. Which bones are affected in your case? Hope this helps
Sima
.. yeah it does help--thanks for responding; I had 2 on femur, 1 on shoulder, an L3, and a rib tumor back in summer of 2017; 11 months with letrozole (no ibrance) my tumors stopped showing up on scans...but that means more time only, one day a scan will show up somehwere....
Congratulations on your great results so far in this journey. I have never had a PET scan but I have gotten CT's(CAP with IV contrast but no oral contrast) and bone scans every 3 months since May 2018. In my opinion PET scans are overkill for most people's surveillance of MBC and are very expensive and time consuming. Many people will not agree but that's my opinion. I hope you continue with your great results. Take care.
ya know PETS absolutely seem overkill--totally agree; so I'm feeling the CT switch is a good thing. yes -- I agree for sure. It will be so nice to take a break from the process -- someone above said the CTs are much easier--GREAT!
I’ve never had a PET scan but sometimes I have to go to that department because the CT scan department is full up. Last time I asked the breast care nurse why I couldn’t just have a PET scan as I’d be there anyway but she said a PET scan doesn’t help for my kind of cancer mets. I have a CT scan and a bone scan every six months.
… interesting! I never heard of PETscans not picking up on certain MEts … yikes.
I had a crash so I had a CT scan in an ER just after hearing stable disease from the oncology CT scan… onc didn’t believe that I had processed si he ordered a PET scan 2 days later to confirm… it showed NO spread to my liver… but turns out it had spread and looking back one year at all the scans, my onc told me actually the ER doc and that CT scan was correct… lobular cancer is just hard to see in scan…
oh my gosh! lobular so crazy!
me either until then. But it’s required for lobular cancer I think.
I'm so happy. that you have been doing well for 6 years, that is inspiring. When I was first diagnosed with MBC lobular, I had a CT scan, a bone scan, an MRI and a bone biopsy. It was a lot to take in. When I moved to Florida, the doctor said I could just do PET scans. The first PET scan I had with her actually picked up a very tiny lesion that was not spotted on the original scans. I was able to have it radiated and it has not been spotted since. They actually do a PET/CT so I get the glucose for the PET and an oral contrast for the CT part. That way they can see the organs, too. Almost 3 years into this and so far so good. The prep is a bit of a pain, with no carbs and no exercise the day before, but if it works that's fine.
PET/CT with contrast! Okay that’s amazing because you are getting the true CT simultaneously (my PET was PET/CT but no contrast so was always noted that the ct is not used for diagnosis but for aligning the body for the scan. You must to a fancy place to get your scans
I'm hoping what I am doing is the right kind of testing. When I have the PET/CT they inject the glucose first and then I have to drink a cup of a lemony flavored liquid which I am assuming is an oral contrast. When I had my first PET scan here in Florida, they just injected the glucose, I did not have to drink anything. I am thinking this is better. When you had your PET/CT did you just get the glucose injection? Also, so far my insurance has been covering these. I used to get them every 4 months but now they are every 6 with bloodwork every 3 months.
... JUST the glucose--that's why I say its amazing that you also get a CT contrast! I have honestly not heard of this. I feel like if nothing changes (moving/different hospital/different insurance)--you just keep keepin' on with what has always been; its when you disrupt that when they "update" things and sometimes deny certain scans etc....BEST to you!!
When I was first diagnosed Stage 4, my oncologist was with M.D. Anderson and never mentioned a PET scan. He only ordered CT's and bone scans every 6 mos. Hope this helps! I think M.D. Anderson is at the top of the cancer treatment providers in exc ellence. I only changed because we moved. The new doctor ordered a CAT scan and it showed inflammation all over, but I think now that it was due to me passing a kidney stone, I was so very sick for 2 or 3 days and then I passed it at which time the next day was the CAT scan. Now, yet another new oncologist, my third, and I have been going since November and my CA numbers are steadily coming down and he hasn't ordered ANYTHING other than standard bloodwork cancer patients get. I'm taking Ibrance 100 mg. Just saying how they are like day and night in their differences. Viva the difference in my case because I really don't like being messed with. I am only posting to sow the huge difference in oncologists and their ordering of tests, not to be critiqued. God bless you and heal us all in Jesus name, amen!
So helpful thank you so much for responding. It really is so amazing the differences! I’m wondering why I have gotten PET/CT for like 6 years now wow. Overkill like another member already said. I’m feeling so much better now — MD anderson is for sure “the best” along with that other one … Sloan Kettering… thanks again.
you're welcome! <3
I’m in the same boat. Been getting biannual Petscans for 5 years. So far NED. Going to The James now and am scheduled to get 3 scans in one afternoon. Chest CT, Abdominal CT, and bone scan. I’m a bit nervous too🙏🏻🙏🏻💪💪💕
Totally—same thing. Thinking of you. Let’s consider this a change of scenery 💪🙏
I've done that -- I think you'll be fine.
congrats on 6 years. I am at 4 years and have never had a pet scan only ct and bone scans.
I've had both PET and CT scans. I had Pet for the first two years then CT for the next 3. She orders chest, abdominal and
bone every six months. I've been responding to Ibrance 125, faslodex and Xgeva. The last scan said my mets (ribs, spine) are healed and the spine is stable since 2019. I've had no side effects except for my eyelashes falling out. My 5th anniversary is in October. PET scans are way more expensive than CT.
so great (not the eyelashes thing) ... can't wait until October for you!
Same here. I've been stable on 125 mg Ibrance + 2.5 mg Letrozole for over eight years. I used to have PET scans regularly alternated with CTs, but more recently just CTs. My oncologist says that insurance has new guidelines and that they no longer authorize PET imaging unless there's evidence of something suspicious. He says we'll monitor with CTs and only ask for a PET if a CT report identifies something suspicious.
My oncologist says that insurance has new guidelines and that they no longer authorize PET imaging unless there's evidence of something suspicious...I am thinking this is the deal for my situation; when you move and change oncologists seems they "catch you up" on the latest insurance things; in Colorado Springs I was in this groove where all I did was send a request to my GP saying it was time for a scan per my oncologist...and it was done. anyway.
All of these comments are very encouraging. I have Mets to my L3, one tumor, back in December 2020, and hip bone. I have been stable. I get CT scans every 4 months. I have never had a pet scan. Oncologist says CT is best for my lobular breast cancer. I also get bone scans every four months.
I keep hearing that CT is for lobular --and then bone scans; I wonder if I will also get bone scans with the new CT regimen...BESTBEST BEST to you!!
I'm a long timer with lobular MBC, bone mets from time of initial diagnosis over 19 years ago. I've had both CT and PET scans, but I don't remember frequency of either over those years. I've made a point of learning all I can about BC, MBC, treatments, etc by reading and attending comferences (NBCC, MBCN, SABCS), One thing I've heard often is that how we feel (what our bodies are telling us) is most important, followed by scans then way behind those, TMs. I got over 9 years from Faslodex after almost five years from Letrozole. I've met quite a few women who have also gotten more time with Faslodex after than with letrozole, so I think you are off to a great start, plus you have had so few bone mets....all very promising for you!
I had a CT scan, MRI and PET scan when I was first diagnosed in March of 2019 with MBC in my liver. I have abdominal MRI's every 5 months. My oncologist said that CT scans are not as good as an MRI in my case. She has not mentioned having another PET scan. Good luck to all of us in this journey.
I have lobular metastatic breast cancer and have been on letrozole and Ibrance for seven years with NED. Every six months I have a PET/CT with FDG as the tracer.
So happy you have been on this protocol for so long. I have that same cancer and have been on those meds for almost 3 years and doing well so far. I get a PET/CT with FDG as well as an oral contrast as tracers every 6 months since I have been NEAD and my tumor marker has been low. I would love to get 7 years out of this!
7 years! yayyyy and more yayyy. super yay. may the next PET/CT look just like the the last one!
I have never had anything but Cat scans plus bone scans.But I noticed from all these replies that most of you get it done every six months.I have them every 3 mos at Moffitt. I wonder why mine are so often. I was first diagnosed with breast cancer in 2016 .Had a double mastectomy but no other treatment until it metastisized to liver and bone in 2018. I have done : Taxol infusions,Anastrozol,IBrance,Xeloda, Verzenio+Tamoxifen and most recently Fulvestrant because my cancer had progressed in my liver and was now found in my stomach lining after being stable for almost 2 years.My oncologist took a position in a different state so I will now have a new one I meet tomorrow.I had only met with her NP so far. She spoke with Dr Lee who then decided to have my original breast tissue re-examined to decide what treatment would be best now. She will have those results when I meet her tomorrow. I pray that maybe I can just continue with the Fulvestrant because I am feeling really good right now.👍
I’ve only had PET scans I’ve often wondered why some Dr prefer PET others CT.
My first onc did pet scans. My new onc does ct scans. So far so good!
how long were you with first onc compared to new .... about how many PETS did you have vs CT -- NOT totally important -- sorry just curious.
Every 3 myths. Bone scan every 6 months.
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