Bone scan vs. PET scan

[michelangelina]

Hi everyone, I was diagnosed with MBC a little over 2 years ago, and have been on Ibrance/Letrozole since then. I have had regular PET scans since my diagnosis (first every 3 months, then every 6 months). I have had no evidence of disease since my first PET scan. My onc was going to schedule me for another PET next month, but my insurance (Anthem Blue Cross) denied it as unnecessary--the first time they have ever done that. He has decided to schedule me for a bone scan and CT scan instead. That is probably fine, since my mets were only in the bone. But I was wondering--how many of you typically get bone scans, and how many get PET scans? I am in the U.S. Thanks lovely ladies!

[michelangelina]

Oops! I should clarify that I have had no evidence of disease since my first post-treatment PET scan.

[Red1246 in reply to michelangelina]

That’s terrific! Congratulations! 🎉🎈🙏🏻

[Buster2020 in reply to michelangelina]

Hi. congratulations on your NED on your last scan. I have had two Pet Scans since my diagnoses and am also NED, and unbelievably grateful. I was wondering if your doctor kept you on the same strength of your meds?

[michelangelina in reply to Buster2020]

Hi! Yes, my doctor kept me on 125 mg of Ibrance until just recently, when he lowered it to 100mg. The reason he lowered it was because my white blood cell count started coming in too low every month. If that had not been the case, I would have stayed on the 125mg as long as it kept working. So glad to hear that you are NED--I hope it stays that way for you for a long time!!!

[Wintervt]

Hi,

I typically only have bones scans unless there is progression. I had my first PET scan two weeks ago,

Jade

[Hidden]

Hi michelangelina!

I've had PETs, CT's, or both (at the same time) every 3-5 months since diagnosis 5.5 years ago..And I happen to have thought alot about/asked alot of questions about pros-cons of each. So apologies for the long response, you probably already know all of what's below but maybe others do not?

First I'll note that 0nce or twice docs wondered if insurance would approve the PET, since it's more expensive, but they always did, probably because I have widespread bone mets and things do seem to change a little bit each time (sometimes a little better, sometimes a little worse) so it's easier to justify, I'm sure...

I get scans locally (Dallas) and also sometimes at Duke, which is a major cancer center. At Duke, they have a machine that does a full "diagnostic" CT and a PET in one 10 minute scan. So when I'm there, I don't have to choose.

When I do scans in Dallas, my doc and I have to choose between a PET and CT. For a long time, given the choice, I picked PET because my number/size of tumors was (were?) stable, but the SUV/FDG uptake (? "heat/brightness") is what varied, so I was eager to know about these changes.

So over the course of about 3 years, my CT's would have looked pretty much identical, but through the PETs, we were able to see that for more than a year, everything was "cooling off", then it all started to gradually "heat up". So I liked having this insight...

BUT, more recently, when I'm in Dallas and have to choose, I'm all-in re: the CT. Here's why...

From what I think I've learned, the CT is much better/clearer for detecting actual progression. It's much more accurate for counting and measuring tumors. With a PET-only, they really can't measure as accurately, e.g. since the light/brightness can create sort of a halo that makes the tumor look larger than it actually is.

When I made the change from first-line to second-line treatment, I think I might have made a mistake because that decision was based on a PET-only. In that report, they saw two "new" small spots, which I think of like pin-pricks of light. My doc and I were on the fence and since I had never faced the prospect of progression, I sort of freaked out, as if this was all going to go out of control. I know better now and often wonder/discuss w/ my docs the possibility that those two "new" tumors had actually been there before, and had cooled off during my improvement phase, but had become slightly more active/hot, so that suddenly they showed up/reappeared. If I had had a CT, I wouldn't still have this question in my mind...

So if I were in your shoes, I'd be just fine with the PET denial and CT plus bone scans.

BTW, I've had a bone scan only once, at the beginning...I do wonder about this sometimes.

But I'm going to get an MRI soon because my doc in Duke said something about possibly being able to radiate some of my tumors to delay a change in treatment and they need an MRI to make the decision...

Best,

Lynn

[michelangelina in reply to Hidden]

Hi Lyn,

Thanks for your thoughtful response. I should have clarified in my original message that my PET scans have always been PET/CT scans. I was never really sure how the CT figured into it--I remember reading somewhere that the CT helps the radiologist actually pinpoint where on your anatomy the spots are lighting up. I didn't realize that they even did PET without CT scans. In any case, I agree that PET scans are a wonderful tool, but not always completely accurate. I have had some spots light up in places where it was almost certainly not breast cancer, only to resolve on their own later. After reading your response, and those of the other ladies, I am feeling more comfortable about the bone scan/CT option.

[Hidden in reply to michelangelina]

Hi Michelangelina -

I'm glad you're feeling more comfortable!

Just wanted to mention one thing for you or others...

My scan place in Dallas refers to their PETs as "PET/CTs" but it's actually sort of a PET with a "CT-lite", meaning, yes, there's a CT involved, but it's not "diagnostic" so really doesn't give as clear a picture as a full/true PET with "diagnostic" CT.

I think the most obvious tell-tale sign is if they don't infuse contrast dye...I think (but am not 100% certain) that no dye = not a true diagnostic CT part. The way it's been explained to me (after I probed) is that the CT part is about something related to aligning the images or helping them see where to focus the PET? Not sure, but thought I'd clarify...

Good luck with it!

Lynn

[michelangelina in reply to Hidden]

Thanks for all this, Lyn. Yes, the CT scans I have had with the PET have been with no contrast. The one I will have coming up will be on the same day as the bone scan, and I am going to get the contrast for the bone scan--I wonder if that will also do double duty for the CT scan? It is all so confusing! I have been stable for 2 years so I have not worried about things too much, but I should probably understand all this better in case I have a progression.

[AuntC in reply to michelangelina]

Hi,

I actually just asked my onc what the difference of a PET & CT. He said when you get a PET it always includes a CT. They (the radiologist) overlay them to get more exact readings or results. But if you get a CT it doesn't have to include a PET. A CT takes pictures in slices both vertically & horizontal. He made it a little clearer to me, hope this helps. I've only had one bone scan (Dexa scan) and that was when I was first diagnosed in January. As far as I know it only showed that I also had osteoporosis. This is all still fairly new to me so I ask a lot of questions.

Take care,

Carolyn

[Dianne417 in reply to Hidden]

Congratulations on 5.5 years of longevity! That's a great achievement!

It sounds like you are receiving treatment at cancer facilities around the country, e.g., DF, Duke, and in Dallas. How do you manage that? Are you on an insurance plan that allows you to receive treatment anywhere in the country? How do you coordinate your care between facilities?

[Hidden in reply to Dianne417]

Thanks, Dianne417!

Managing it is pretty seamless and in fact the docs I've seen at the bigger centers are accustomed to being "secondary" to a local onc, i.e. lots of folks travel to get second opinions, consults, treatments but maintain a local relationship. *BTW, I've not been to DF but did receive treatment out of MSK in NYC for a couple of years, before switching to Duke.

I think that nearly any insurance covers "second opinions" and the like. I've never had any issue getting both places through claims. I think they see this a lot with the more serious medical issues.

In terms of coordination, I'll get CD's of scans to provide to the alternate doc, but this is only because my two places happen not to be on the same share site...I think there are a few big ones out there and so many different facilities can view scans, reports, history, across providers seamlessly (after you give permission).

Aside from that, it's easy, and all that's left is the travel part, which is enjoyable anyway...

I hope that helps...

Lynn

[Dianne417 in reply to Hidden]

Thank you, Lynn! This is very interesting! I appreciate you taking the time to explain how you do it.

Best,

Dianne

[Rhwright12 in reply to Hidden]

I was given the insurance speel as well...😂...CT is cheaper 5k...Pet is more like 8k...so it’s more than CT...but u don’t need bone scan with PET.Bone Scan was 22k. So CT 5k plus Bone scan 22k...is definitely more than the 8k Pet but apparently they can’t add 🤷‍♀️😂😱

[Zebra2018 in reply to Hidden]

Thank you for your comprehensive response. My doc also doesn’t like pet scan and says it gives you false outcomes sometimes!

[AuntC in reply to Hidden]

Hi Lynn,

Just curious, what meds have you been on since you were diagnosed 5.5 years ago?

Thanks,

Carolyn

[Hidden in reply to AuntC]

Hi Carolyn -

I started out on Letrozole, then a few months later added Ibrance when it was approved, then swapped out the Letrozole for Faslodex, remaining on Ibrance, almost two years ago. I'm likely looking at another change soon, but we'll see...

Best,

Lynn

[AuntC in reply to Hidden]

Thanks for the info. The Best to you.

[Jac-genova in reply to Hidden]

How have you been faring on ibrance?

[Hidden in reply to Jac-genova]

I've been doing great with it! I attribute years of good living to this drug, which I've been on for more than 5 years, with only very modest, unnoticable to me, progression in my bones.

Are my blood counts low? Yes. But that's caused me no issues except maybe the fatigue (I have probably half of the physical energy I used to).

So I'm a big fan, for sure!

[MacroMom]

Good question. I’m in Oregon. Diagnosed with bone and liver Mets in Oct 2107, have only had CT and bone scans. My onc doesn’t think PET are as useful, perhaps for the reasons Lynn just mentioned. I have CT more than bone scans because the last 2 bone scan reports were so useless; they basically said the same as the CT, but the CT report gave more details. If I started having bone pain again though I’d ask for another scan. (I hate how long it takes though!)

Patty

[Tam-56]

I am on Medicare with AARP supplemental ...they approve a CT scan every 6 months. When first diagnosed 2 years ago, they did a CAT/PET to start before treatment plan

[Biddy007]

I live in the UK ok and I'm on the same medication as you. Also NED for the last 3 CT scans.

I have never been offered a PET scan and I continue to receive CT scans every 4 months on the NHS. Not sure if this is going to be helpful to you, but it looks like we have the same disease same medication and the same monitoring mechanisms in place.

[Fifi313]

I have a PET/MRI done at the same time every 6 months. My bone scan and regular PET were always negative, that’s why my MBC was never detected. Only showed up on a MRI by chance when I was being checked for something else. Never knew I had MBC until then. There really isn’t a particular test for MBC of the bones. What the PET/MRI shows if there is any progression vs the past results. My markers are monitored consistently.

[Valisa]

I am in about the same boat. In Canada, diagnosed Nov. 2018. I have only ever had bone and CT scans. First every 3 months, now every 6-8 months. I am on Ibrance, letrozole and xgeva . I have been reasonably stable .

Best of luck with your testing, wishing good results.

[NShaft]

I was also on Anthem until last month and also had them deny a PET once so had a CT and bone scan instead. My Dr prefers the PET but I've never asked why. That's what I've had from the beginning so nice to compare the tests. Based on what Lynn said above it sounds like it makes sense to have the CT and bone scan at least now and then. It was interesting to get a different perspective. Other than that 1 time Anthem has approved the PET.

[michelangelina in reply to NShaft]

Thanks for your reply. That's interesting that you also got a denial once from Anthem, but not other times. I wonder if it has to do with the medical reviewer in their utilization department.

[NShaft in reply to michelangelina]

You might be right. In my case I had to schedule a little earlier because I was going to be out of town so they denied "because it was too early". However, I needed to schedule early again last month and they approved a PET. You might see if your Dr. can push the issue to get a PET instead if you prefer.

[OceanBreeze3]

I'm in the US/Boston. Diagnosed 14 months ago with MBC. I have a Chest CT & Bone Scan every other 3 months and a PET Scan every opposition 3 months at this point. I was NED 3 months in from taking Letrozole/Ibrance. I have one large bone met in my femoral neck right hip which has since gone away. My Dr conducted both tests which made me feel comfortable that we were exploring everything. I would have demanded a PET Scan since that test will pick up any cancer activity in your body. It turned out, I also had thyroid cancer (very common kind) and I just had my left thyroid removed. If everything still looks good in August, I'm sure that I will move to a 6 month scan schedule, however I will still request a PET Scan as frequent as my insurance will allow, because for me, that is the test that tells all and gives me peace of mind.

[Hidden in reply to OceanBreeze3]

Congratulations on that bone met going away! That's awesome!

[Thatflowerlady]

Hi I was diagnosed 2015 MBC and have Ct Scans every 3-4 months and bone scans every 4-5 months . I live in Ontario Canada . A PET scan has never been mentioned I have been curious but always forget to ask why CT not PET .

[Hidden]

Hi Michel,

I have had a bone scan, PET CT scan and regular CT scans. The bone and PET CT scans were ordered at the very beginning when I was still going through the diagnostic stage. I have never been offered them since. But I continue to have CT scans on a regular basis. I used to have them every three months, but I have recently been moved to every four months. I had the option of waiting six months, but I didn't feel comfortable waiting so long between scans.

Sophie

[mariootsi]

I get CT scans every 3 mths and bone scans every 6 mths.

[Dianne417]

Hi, Michel! In my experience PET/CT scans have been the best for detecting cancer progression, although many trials don't offer them, I think largely because the PET/CT is more expensive than just a CT scan. If you are currently NED (congratulations!) then you are probably fine with just CT and bone scans.

[hdhonda]

Hi Michael,

I had Pet scans at Moffitt originally and Cat scans locally. The Pet/Cat machine at Moffitt couldn't compare with the Cat scan machine locally. It was decided by both doctors that just a Cat scan was better unless there is significant growth. Now, I have Cat scans every three months - two locally and two at Moffitt. I think Pet scans just light up, but don't give a close view and some tumors are too small to light up. I haven't had a bone scan - just a bone density scan. My cancer has spread to my lungs rather than my bones. Hope I haven't totally confused you. Blessings, Hannah

[Beaches42]

I had a PET/CT and bone scan when initially diagnosed (I was metastatic from the beginning). Since then I have only had CT scans with contrast. I’ve mostly been stable the past 3 1/2 years. I had one instance of progression where I had to change meds. I asked why they don’t do PET and my doc at MD Anderson said that CT are able to detect the cancer earlier/smaller and more accurately. They are one of the leading cancer centers in the US. Hope that helps.

[Rhwright12]

CT at 6 months with yearly Bone Scan....Luckily I have lazy/slow to perform cancer. I’ve gone from 18 Tumors to maybe/possibly 3...again they are just not that motivated to decide if they want to be there or not...😂😱😂 (4 years in June)

[michelangelina in reply to Rhwright12]

Congrats on 4 years! "Lazy" cancer--isn't that what we all wish for!

[SMPG]

I have had the same. Bone Scan, CT scan. But, in my case, since I am allergic to the contrast dye used in CT scans, I could not have the dye and the result was not clear. I investigated and found out that PET scans are the best. But, like your insurance, my insurance said it was not necessary. I appealed, and my doctor appealed and finally I had it. And then I had it again (The PET) 3 months after). Again, with opposition from the insurance, with appeals. Now, since there was no evidence of disease, I don't know when I will have the next PET. Also, I heard that Medicare approves PETs with no opposition. But I also heard that Medicare does not cover Ibrance. It is horrible to be sick and have insurances that do not pay for something so necessary

[Meadesmith in reply to SMPG]

Medicare covered PET and I brance for me for 3 years.

[Hidden in reply to SMPG]

Hello!

I'm also allergic to the contrast dye...Just thought I'd mention that what I do is pre-treat with prednisone (three doses on a schedule beginning maybe 12 hours prior?) and benadryl one hour prior to scan.

I have a history of very severe food and drug allergies, but my reaction to the dye was mildly anaphylactic (hives, mild shortness of breath, urgent/severe "digestive issues"). So we decided to just proceed with the pre-treatments in place. Since then, no issues...

Best,

Lynn

[Sjjohnson52]

I typically get PET scans.

[SMPG]

I had the contrast dye once in my life and it caused severe difficulty breathing. I thought I was dying. Since then, no more contrast dye for me.

[Aquadog]

I've been having PETs every 3 months since diagnosis with bones only mets in December of 2016. Had a bone scan, CT. and PET in January 2017. That's the only CT I've had until March of this year. I've been NEAD for the last 2 years so my insurance company (Aetna) decided I didn't need another PET. Went for a CT and bone scan instead, found more damage on my sternum (compared to the first one 3 1/2 years ago - turned out not to be progression). My doc wanted to know for sure so she fought Aetna and won - I ended up going for a PET anyway! Today I'm resuming my old schedule of a PET every 3 months because my tumor markers have been creeping up. It's not unusual, though, to have just CT scans instead of PETs. PETs are much more expensive.

Take care

Susan

[michelangelina]

Is the contract dye used for CT the same as for MRI's?

[michelangelina]

Thanks, Susan! My tumor markers have been stable, but if they start creeping up I am sure my doctor will want the PET scan.

[michelangelina]

Well, I hope I am not allergic to the CT contrast dye. I guess I will find out! I did fine with the MRI contrast.

[Antares12]

I had just bone and CT scans until I had progression to the liver. Now I get PET scans