Pet scan v CT scan

[WTLS]

For those who are survivors, I’m being told that doctors don’t use Pet scans for uterine cancer detection and follow up. I have Uterine Carcinosarcoma Stage 2, Grade III. My first CT showed a suspicious lymph node near my lung; the radiologist who read the CT noted probably benign but needs to be monitored. My understanding is that a Pet scan is better for detecting smaller tumors and cancer cells. My insistence on a Pet scan has caused some friction in my relationship with my oncologist. Any guidance is appreciated. Thank you!!

[Merma Moderator]

Hi there,

PET AND CT scans are used in uterine cancer. I get both done every six months. Perhaps a second opinion would help. Is it an insurance issue?

That being said, I had a lung nodule that never lit up and started doubling in size for a couple of years. One time, it mildly lit up. They biopsied it and it was fine. Three months later, it really lit up and it was malignant. From the time it was noticed in the first scan to the time it became malignant was about 8 years!

Best wishes.

[WTLS in reply to Merma]

Thank you for the insight. I’m hoping to get more direction and information from MD Anderson where I am seeking my second opinion. Were they able to treat the cancer in your lung successfully, I hope. Prayers gif hood long term outcomes for you.

[Merma Moderator in reply to WTLS]

Thank you for the prayers. The lung nodule was treated with SBRT - a very targeted radiation. I had no problem during the treatment period (Feb. 2024) and have no problems since.

My cancer is known to recur. I am always going to be on some drug or another. ALL of the recurrences (four since 2015) were found by PET/CT scans and CA125 is not a good marker for me. Therefore, we agreed on PET/CT scans every six months. After a recurrence, we do every three months for a while and then go back to the original schedule.

[Maryjnotblige in reply to WTLS]

I went to MD Anderson in Houston for a second opinion and I'm glad that I did. I've been getting PET scans every 3 to 4 months for the past 21 months. Uterine cancer, metastasized to abdomen and liver.

[WTLS in reply to Maryjnotblige]

Thank you. MD Anderson is excellent. I’m awaiting insurance approval to be seen there. Prayers for your continued recovery and no recurrence.

[Broccoli2]

My oncologist switched me from CTs to PETs after my CA125 jumped up and nothing showed up on the CT, and I've been getting PETs ever since. If nothing had shown up on the PET, they would have ordered an MRI. I think that's usually how it goes, up the ladder. Very interesting to me that Merma gets both. And it is often an insurance issue.

[WTLS]

Thank you. I’m having my first PET scan on Tuesday. Prayers for your continued recovery.

[Bootz2023]

Hi - sorry you are dealing with fighting for tests. I am 3 years out with a Stage 2 Grade 3 endometrial cancer. I was given CT’s most of the time. Pretty much every 3 months for the first 2 years. I did have a CT that showed an enlarged iliac node in my abdomen. I was very anxious about it so I went for a second opinion and requested a PET. I did get the PET which turned out fine so not sure if my oncologist was maybe correct in suggesting we redo the CT in 3 months. I needed the peace of mind. I am now doing CT’s once a year but seeing the oncologist every 3 months. Also the good news from the second opinion is the oncologist assured me that I was getting the right treatment from my current oncologist. I forgot I did have another PET about 4 months after finishing my treatment. I have been told by a few people that recurrence is often found during internal exams by your oncologist.

It’s so much to think about. I do feel if you want a PET it is worth figuring out a way to get it. I have learned to advocate for myself so I don’t just worry about something in silence.

Take Care!

[WTLS in reply to Bootz2023]

Thank you so much for the insight. Prayers for continued recovery and no recurrence.

[Oranglover]

hello I have had a PET/CT scan every 6 months since I finished radiation in august 2023. It is my understanding that will continue fir the next couple of years

[WTLS in reply to Oranglover]

Thank you so much for the insight. Prayers for no recurrence and continued recovery.