PET Scans

[Gramat]

Good morning. Anyone had PET scans spaced reduced from twice to once yearly after reaching 5 years NEADS? My oncologist, who has always supported the importance of PET scans, suddenly comes up in consultation with risks of radiation being higher with PETs than CTs.

[bikebabe]

never had PET scan in 5 yrs of cancer treatment but my spine mri and ct scans with contrast are 3 monthly. I have stage 4 stable.

[Onedayatatime60]

In Canada I have never had a PET Scan. I asked Onc. He says there is limited evidence that routine PET scans in asymptomatic, stable MBC patients improve outcomes compared to clinical follow-up and standard imaging. ( I am now on every 6 months CT and every 3 months MUGA)..

He said minimizing unnecessary radiation also a factor, and it is true that it is more radiation than CT

[fancydog]

My first two yrs w/MBC I had only PET scans every 3 mon., then when NED for a yr changed to CT and Bone scans every 3 months, now I have bone scans every 6 mon and CT every 3. Last yr when a mass showed up near a kidney we did a PET which showed that it was indeed cancer. I am on Medicare and a case has to be made by my ONc to get one covered, but CTs are better at identifying a mass while it is still very small. As mentioned the amt of radiation exposure with the PET is of concern.

[1711JPD]

This article appeared a few days ago on my news feed. Have saved it to show my onc at our next appointment.

scrippsnews.com/health/new-...

[TammyCross in reply to 1711JPD]

Yikes. That article said that excessive CT scans are causing some cancers.

I have had PET/CT scans every three months in the 6 years I have had mbc. Each time I have been NED, my oncologist switched them to six months, and each time she waited six months, the PET/CT has turned up progression. I don't know what is to be done about it. My tumor markers indicate when there is reason to be concerned, and then I have a PET/CT that confirms it. Is a PET/CT worse than just a PET or just a CT? I assume it carries the risk of both. They give different information, though. The CT, as I understand it, shows whether there is something, a shape and size, and the PET indicates whether it is likely cancer as opposed to some other inflammation.

On Monday, I am having a biopsy, guided by CT. During it and after, they will do additional CTs to make sure they got it, and then to see whether they have introduced air into my lungs (oxymoron, isn't that what lungs are for? but I gather this is a serious problem), a pneumothorax. They will continue to do CT scans or x-rays to determine whether a pneumothorax has grown or disappeared. Jeez. Lots of radiation! I always thought that the breast cancer in my left breast might have been abetted by x-rays of my left hand when I broke it twice. They had me hold my hand in front of my chest. I didn't start asking for a protective apron until I was initially diagnosed with bc.

[1711JPD in reply to TammyCross]

I know what you mean, although my MBC journey is shorter than yours (4 years in January). I stopped getting PET scans in favor of CT and MRI (for my liver inly mets which were successfully zapped by the interventional radiologist). Have been NED for 2 years. I’m going to discuss article at my next appt on 4/29.

My best wishes to you and all of our sisters on this rollercoaster!

❤️❤️❤️

[Discocat]

Hi

Not quite there but almost...I'm 4yrs from start now. As others also have said ...I too have never had PET scans.

I originally had full head to toe MRI to get a base line of tumors...

Was having 4x per year CT and 2x per year nuclear Bone scans ...both with contrast...for the first 2yrs...now have 6monthly CT and bone scan 1x per year....

From next appointment in end of April I will see onc every 6mnths only....and also have Zometa IV around same time too.

[Jrostar86]

My oncologist has only used annual ct scans to monitor. I have only had two pet scans, at initial diagnosis and when I had signs of recurrence (that were true) 6 years ago. Hope this helps!

[Lilywallytootsie]

My oncologist orders cat Scan without contrast every three months. He uses the cat Scan and blood work to determine if I need additional testing. So far 🤞 and 🙏 , I haven't needed additional testing. Blessings,Hannah

[love2golfwell]

When first diagnosed in October of 2020, I had a CT scan, Bone scan and MRI. When I moved to Florida I told my doctor I did not want to do a CT plus a Bone Scan and asked if I could just do a PET/CT scan. She said as long as insurance approved it, I could. Originally I did PET/CT scans every 4 months, then it moved to 6 months for a few years. Now I may have to go to every 3 months since there was a small progression in December and I needed some radiation to clear it. I just read the article about CT's potentially causing cancer because of the frequency and high doses of radiation. I assume that PET scans have even more potential. I am concerned about this and am going to ask if I can go back to 6 months or even to every 4. Also, I go for a mammogram every year, adding more radiation. Every time I broached the subject of how all of this could affect me, it was pushed aside by my oncologist saying it would take 10 to 20 years of exposure to cause problems. After reading this article, I am not so sure about that. Hope you get some answers. Sending hugs and prayers.

[Ara31]

Hi, I got the diagnosis of de novo MBC (bones only) 4 yrs ago. In the first year I got CT scans from head to pelvis every 3 month, because it was stable disease I asked the oncologist whether it would possible to do the CT scans every 6 month because I am also afraid of the radiation. I am still on NEAD with CT scans every 6 mth now and skeleton szintigrafhy every 12 month. They never offered me a PET scan. I live in Germany.

[Batiksforme]

if you haven’t had any new signs of cancer that seems pretty often. I’ve had MBC for 9 years and I’ve only had 2 PET scans. My oncologist only does it if my CT scan shows something new. That doesn’t mean he’s right but I think twice a year is excessive. It’s hard on your body and keeps it from getting stronger to keep you healthy.

[Gramat in reply to Batiksforme]

I am allergic to ct contrast hence why the PET.

[Batiksforme in reply to Gramat]

Oh well then maybe every year is good for a PET scan. Maybe a 2nd opinion. Hang in there.