How often should I do PET scan?

[hopeoflife]

Hello everyone,

I have stage 4 metastatic breast cancer (ER,PR+, HER2-). I have been taking tamoxifen and kisqali since 02/2022. I did a baseline PET scan in March this year. My oncologist wants me to do a PET scan every 3 months. Is that really necessary? Do you have any insights as to how often should a PET scan be done to monitor progress/remission? I am worried about accumulated radiation toxicity and cost.

Thank you!

April

[Adele_Julia]

Hi April ! I get a PetScan every 3 months and my insurance approves that interval. I too think about radiation toxicity but I haven’t seen anything that says don’t go so often. I personally look forward to the PetScan mainly to keep an Eye on what’s working. I’d rather catch any suspicious progression sooner rather than later. That’s just me and yes I do get scanxiety at times. The last couple of months my tumor markers have plummeted well below the normal range being on Piqray so I’m anxious to see what the “picture” looks like in my body ! Heart hugs and Blessings !! Julia

[hopeoflife in reply to Adele_Julia]

Thank you so much for sharing, Julia!

[Hidden]

Hi hopeoflife (I like your name! ).

I read your prior posts and it sounds like you have only bone mets, so hopefully my response will be especially relevant (but long, I expect...apologies up front!).

I've had bone mets for 7.5 years. Did PETs or PET/CT's (meaning fully diagnostic CT, too, in combo) for the first few years. I asked for this specifically because I liked to read the numbers on the PET (SUV uptake/FDg avidity/something similar) because it showed improvement as they fell for the first couple of years and then alerted me to a worsening as they rose afterwards. All while the *number* of mets remained stable.

So this was more concrete trend info than I would have gotten w/ CT's.

But a few years in, I switched to CT's. I'd gotten used to the bone mets, didn't feel like I needed to see how "hot" all the mets were, and was more focused on *counting and measuring*, which - from what I understand - the CT does more accurately.

Since PETs measure light vs. background, it's "fuzzy". The docs do some calculations and I once read a study that showed that after having different docs review the same PETs, they arrived at different answers in some very large % of cases.

CT's btw, give about 10...whatever unit of measurement is used for radiation...while a PET gives you about 25. So that was def a consideration, too, since I realized I had and would hopefully continue to have many years of regular scans.

In my experience, a doc wouldn't ever recommend a change in treatment based on increased numbers on a PET...they'd recommend it *possibly* with an increased number of mets (and *maybe* with increased size, but I'd be inclined to push back on that). So the PET info was *interesting*, helped me project into the future, but wasn't "actionable" in any way beyond what a CT would show.

So you might want to consider CT's, as an alternative...

With regard to frequency...Early on, I did scans every 3-4 months, but later would get a break, as long as 7 months, I think, if my tumor markers were stable. Again, it took some time to get here as my doc had concluded that the markers (plus Alkaline Phosphatase/LDH) were accurate for me (they're not for everyone).

I appreciate you raising an excellent point about considering long-term exposure to radiation, especially as so many folks are living so long with this disease...Man, I'd hate for *diagnostics* for one type of cancer to *cause* a different type!!

I hope that helps!

Take care, be well...

Lynn

[hopeoflife in reply to Hidden]

This is so helpful and encouraging. Thank you for the great insight, Lynn!

[Aprilfoolz1]

Hi Hope, I got my stage IV dx 11/2019 and started the quarterly scans. So, I am 2.5 years in and right now I agree with Adele_julia and want to have qtrly scans so we can pivot quickly if anything pops up. I started with quarterly petscans . About a year ago that switched to a petscan / Ct scan so it is two scans (one after the other ). I was told it was the new standard of care in 2021 or something like that for my cancer center . My insurance has never questioned the scans. LynnFish has excellent points and I do appreciate seeing people such as LynnFish doing ok for 7.5 years- really gives me hope. I can imagine if I continue to have stable or NED scans at some point they might consider spacing out the scans. I used to worry about the radiation exposure but ...have to balance it with my fear of progression / changes in treatment . For me, my tumor markers have never been elevated so scans are how I was dx and how we will keep up any changes. I also agree with Lynn that I don't think my MO would make a change just based on a scan but would then hope to biopsy whatever changes showed up and then analyze that info.

I have my scans on Tuesday ! Definitely have scanxiety but also want the info - MBC is a world full of ups and downs, it seems !

[mariootsi in reply to Aprilfoolz1]

Good luck Tuesday ! Hope for good results!

[hopeoflife in reply to Aprilfoolz1]

Best luck Tuesday on your scan! And thank you for sharing your journey with me.

[Tam-56]

HopeoflifeI receive a CT scan Chest/Abdomen/Pelvis every 6- 8 months. I have been stabe on Ibrance/Letrozole for 4 years. Initially had a CT/Pet scan as a baseline for diagnosis but now only have additional scans if symptomatic.

Hope you continue to do well on your present protocol. Relax, scan technology has come a long way in reducing exposure...we have enough anxiety dealing with the disease.

Be well and enjoy your summer!

[hopeoflife in reply to Tam-56]

Thank you! I hope you continue to do well on your regimen as well!!

[Thatflowerlady]

I have a CTscan & Bone scan every 3-4 months.

[hopeoflife in reply to Thatflowerlady]

Thank you!

[Silver126]

I have a PET/CT scan every four months and markers/ blood tests every three weeks , but I’d like to ask LynnFish something more about alkaline phosphatase, since my values have risen through the last two years and my oncologist told me it is due to treatments. All other liver enzymes are instead on a normal range. I have developed since November two small liver mets. Thanks 🙏

[hopeoflife in reply to Silver126]

Thank you for sharing!

[luckysmom13 in reply to Silver126]

I have bone only mets and my alk phos is mildly elevated. The elevation is consistent with bone mets.

[Silver126 in reply to luckysmom13]

Thanks for your answer! The thing I don’t understand is that when I was diagnosed it was in the normal range (I had only one small met in L4). Now that my bones are apparently NED it’s raising constantly and is about 190. I’m confused 😐

[Mardy72]

Hi, I get a PET scan every 4 months. With any scan or MRI I put a folded washcloth over my eyes so to minimize the anxiety. I can handle any scan when I do this.

[hopeoflife in reply to Mardy72]

Thank you for the tip! I was so nervous the first time when I did my PET scan. Hope next time will be easier for me.

[Hidden in reply to Mardy72]

I do facecloth/eye mask (w/o metal...velcro closure), too, and def helps, but what *really* helps is a fistful of Xanax!

[Pbsoup in reply to Hidden]

Me too on the Xanax! Especially if it's an MRI.

[Andersl]

I have the same stage and type of cancer as you.

I have a PET scan every 3 months, and because I've had brain mets in the past, a brain MRI every 3 months too.I'm in the UK.

[hopeoflife in reply to Andersl]

Thank you for sharing! I hope you continue to do well!!

[morty87]

I take Letrozole and Ibrance and fortunately have been stable since 2018. I had bone mets in my spine and hip. There was one lesion on my brain that gamma knife zapped. I have CT and Bone scans every 6 months. Actually I have scans tomorrow, and I am hopeful I am clear until December when we will do scans again.

[hopeoflife in reply to morty87]

Best luck on your scans tomorrow! I hope you stay clear till December and beyond!

[morty87 in reply to hopeoflife]

Thank you so much! Blessings to you as well.

[hopeoflife]

Thank you all so much for sharing your journey and insights with me! I feel encouraged and hopeful after reading your replies. I am grateful for your kind thoughts and support. I hope y'all stay well and have a wonderful summer!

[AutumnLove]

I have heard ladies and Gentlemen aswell using Melatonin before Scans to help with Toxicity. So I done some reading on it and have found substantial evidence to back it up..Just thought I'd mention it!😊

[luckysmom13]

I jokingly say Fire me up! What's the radiation going to do, give me cancer??

I've questioned timing and type of scan for monitoring as well. My original Med Onc was ordering PET/CTs every 3 months for a couple of years after diagnosis. It picked up a small progression on Tamoxifen and I switched to Verzenio and Faslodex. The new drugs have worked so well! The scans were spread out to 6 months and stayed consistent. In the last year I've just gotten a CT every 6 months.

For several reasons I switched to a new doctor and she has no specific interval. She says it depends on how I feel. I would be more reassured having a CT every 6 months though. However, friends who are treated at a prestigious cancer center get PETs every 3 months.

[hopeoflife in reply to luckysmom13]

Thank you for sharing your journey with me!

[kellylinkane]

the insurance eveturally will approve for only CT scan if you are stable