Multiple PET scans

[pollymacchili]

Anybody out there who has had multiple PET scans? Like more than 3? Apparently the “dose” accumulates over a lifetime and am getting conflicting info re: how many is max...I’ve had 5 in last two years...in most recent nothing lit up at all. Centers for Medicare say 3 is allowed lifetime limit; my insurance company says no lifetime limit....h.m.m.m, ?

[Barbteeth]

I don’t actually care at my age and with a terminal illness

Barb xx

[Hidden]

Hi Pllymacchili! I've had more PET scans than I could count. Estimate is...15-20?

While I've certainly lived longer than I thought, so maybe I'm insensitive to the cumulative effect, but the diagnostic value is so great for me, given the circumstances, that I really don't think about the potentially bad effects.

I do hope you get it sorted out for your own situation..

Best,

Lynn

[AvidBooklover]

I have had 5 PET/CT since March 2019. Last one was Aug. With no changes doctor said the next would be in six months.

[Aquadog]

I've had three or four PET scans a year since 2016. The only time my insurance refused one was in 2019 when I'd been NEAD for more than 2 years, then I had a CT and bone scan instead which revealed damage on my sternum so they had to give me a PET anyway.

[Maludagui in reply to Aquadog]

Exactly. This is mine same case.

[mariootsi]

I had PET scans every 3 months during my first dx with my first onc. For 2 years. Now it's CT and bone scan every 3 mths.

[Rhwright12]

I think this is a topic that few Oncs want to discuss. I was told by my Imaging center that it’s 25 with CT scans. But I’ve changed Centers so I guess I get to start over. But I am around 15... I changed to 6 months scans because of this. Kind of like they don’t know the risks of Zometa beyond 3 years and here I am at 4years+...😱😂😱To some extent we are all in a clinical trial we never signed up for...🙈

[Lisa-n-AZ in reply to Rhwright12]

Zometa, my Mayo doc stopped my Zometa treatments. They said 6 is all I need. Both my spinal tumor are stable.

[Lisa-n-AZ]

Hello, I have had 15 PET scans (every 90 days) , but with the cancer coming back in my liver we have moved to CTs and MRIs every 60 days. Hope to get control and move back to every 90 days.

[jersey-jazz]

Yes, in answer to your question. I have had three in the last fifteen months and am scheduled to have yet another one, #4, on 5 December. It all worries me, as well. Where did you get your info?

[caw517]

I’ve had PET scans every 3-4 months for the last 4.5 years. The only time my onc spread them out further was during the time of covid quarantine. Hope this helps.

[Marieleb]

I have had a PET scan every 12 weeks since July 2018 but I am in the Uk so things might be different

[lynnhbtb]

I've probably had 5-6 in my life. Haven't really been counting. But if the cancer doesn't get you, I guess the radiation from PET/CT/Bone Scans will must be the theory. I guess at this point in my journey, I'm with Barbteeth. I'm not too worried. It's like a possible side effect of chemotherapy is leukemia because of the effects on white blood cells and their death, but it's been worth it to have it because I'm here and quality of life is pretty decent, if not perfect. FWIW

[SusieIM]

This is a good question about pet scans. Wonder if anyone has input on this, I've had several.