PET scan clarification: Are the indicators cancer specific?

Posted by jemma17 @jemma17, Apr 18, 2022

Hi! I have metastatic breast cancer and metastatic neuroendocrine cancer. My breast cancer has really taken center stage in the last couple of years. My last pet scan had several spots of "uptake" that I suspect may be neuroendocrine. Does anyone know if the indicators used are cancer specific or work for all types?

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Hi @jemma17, and welcome to Mayo Clinic Connect. I moved your question to the Breast Cancer group (https://connect.mayoclinic.org/group/breast-cancer/) and the Neuroendocrine Cancer (NETs) (https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/).

I'm also inviting @trixie1313 into this discussion because she has both breast cancer and NETs.

Now to your question about PET scan activity uptake and readings. I believe you're asking if the activity or uptake can show differently for different cancer types. In other words, can it indicate whether it is breast cancer activity or NET activity? It cannot.

People often assume that anything with uptake is abnormal. However, this is not always true and can cause unnecessary alarm and concern. Interpreting PET scans is a highly specialized skill and requires an experienced professional who understands all the variables and intricacies. The interpreting radiologist must also take into consideration any findings on CT, MRI, or other imaging tests.

Jemma, when will you be talking to your cancer care team about the results of your PET scan? What type of NETs do you have?

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I don’t want to confuse the topic but…………maybe in the future they will. They now have a PET than can only pick up prostrate cancer. We had to wait 6 months for my husband to get one and you cannot get them everywhere yet.
I told him then that I would love it if they could come up with this in breast cancer. A girl can dream right?
Did you get this from a patient portal (mixed blessing) posted result?

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@colleenyoung

Hi @jemma17, and welcome to Mayo Clinic Connect. I moved your question to the Breast Cancer group (https://connect.mayoclinic.org/group/breast-cancer/) and the Neuroendocrine Cancer (NETs) (https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/).

I'm also inviting @trixie1313 into this discussion because she has both breast cancer and NETs.

Now to your question about PET scan activity uptake and readings. I believe you're asking if the activity or uptake can show differently for different cancer types. In other words, can it indicate whether it is breast cancer activity or NET activity? It cannot.

People often assume that anything with uptake is abnormal. However, this is not always true and can cause unnecessary alarm and concern. Interpreting PET scans is a highly specialized skill and requires an experienced professional who understands all the variables and intricacies. The interpreting radiologist must also take into consideration any findings on CT, MRI, or other imaging tests.

Jemma, when will you be talking to your cancer care team about the results of your PET scan? What type of NETs do you have?

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My PET scan was interpreted for my breast cancer recurrence. Everything was explained to me as part of my breast cancer. However, I have had moderately agressive islet cell tumors removed from my neck, ovaries and had a section of my small intestine removed. There is also a growth on my hip which was dx as NET. I was just wondering how they were certain that all of the new uptake was from the breast cancer and not NET. I didn't quite understand how the PET scan could or couldn't differentiate. Thank you for your response!

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@auntieoakley

I don’t want to confuse the topic but…………maybe in the future they will. They now have a PET than can only pick up prostrate cancer. We had to wait 6 months for my husband to get one and you cannot get them everywhere yet.
I told him then that I would love it if they could come up with this in breast cancer. A girl can dream right?
Did you get this from a patient portal (mixed blessing) posted result?

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No, I didn't. I am just going over paperwork and trying to think through it and my office visits after the stress of the situation has worn off a bit. 🙂

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@jemma17

No, I didn't. I am just going over paperwork and trying to think through it and my office visits after the stress of the situation has worn off a bit. 🙂

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Jemma, when will you be talking to your cancer care team about the results of your PET scan?

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Hello @jemma17

I wanted to let you know about some previous posts and information on Connect about NETs, breast cancer and an article by a Mayo radiologist about the results that can be obtained by the PET Scan. Here is a link to that post, https://connect.mayoclinic.org/comment/297623/

As @colleenyoung mentioned, @trixie1313 has both breast cancer and NETs. Here is a discussion that she began which addresses some of the issues that you bring to this discussion,

https://connect.mayoclinic.org/discussion/fdg-pet-scan-vs-68ga-dotatate-pet-scan-for-neuroendocrine-cancer/

When is your next appointment with your oncologist @jemma17 ?

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