How soon after finishing chemo was your first PET scan?

[AnnClare]

(Some of this is repetition of my post earlier this week, so sorry if you're reading this twice).

I had a CT scan with contrast done 6 weeks after finishing chemo. Onc said everything looked great, including bloodwork. Only thing that showed up were two small spots on my lung which he emphatically and repeatedly stated he did NOT believe was "c." He gave me the option of having a needle biopsy done to put my mind at ease (because he knows I'm a worrier), which I agreed to - until I found out it would take all day and there was a chance of lung collapse.

So yesterday I spoke with my onc's nurse, saying I'd go with option 2, which was to wait until my next scan, which I THOUGHT he said would be a CT scan in 3 months. Yet the PET scan department just called to schedule a PET scan for Nov. 30th.
I don't mind having this done, as I believe PET scans, especially in conjunction with CT scans, are very helpful. My question is this: is it too soon after chemo for a PET scan to be useful? When was your first post-Tx PET scan? I read that if it's "too soon" after chemo (no clarification on what "too soon" is) that you can have false positives. I've read that benign inflammation can cause things to "light up" on a PET scan. Since my onc thinks my lung spots could be just that, I don't want a false positive / reading.

My onc's nurse is supposed to call me on Monday, as both my husband and I recall my onc saying "we can just wait and do another CT scan in THREE months." Miscommunication, especially about my HEALTH, drives me batty. I need to clarify what's going on.

[betsydoglover]

I had PET scans throughout chemo. It's a really helpful test. Sadly less commonly allowed by insurance. Don't think being on or off chemo has much effect on a PET. Make sure you have a good PET radiologist - sorry to throw in that zinger! If you trust your onc, then you should trust her/his choice of radiologist. It helps to have the same radio every time.

Take care,

[BUD2016]

PET scan is a good idea. When a spot showed up on CT scan, our onc decided on PET/CT scan, not biopsy. And it changed diagnosis and course of treatment. To more aggressive + Avastin.

[turtle]

I had a PET scan 1 month after finishing chemo, and after having an abnormal CT. There were no false positives on my PET.

[michelle c]

To answer your question, I have never had a PET scan. I had a CT scan six months after finishing chemo and then one every 12 months. My onc said that there was no point having one sooner post chemo and wanted to minimise radiation from CT scans. I remember my surgeon saying that if my CEA ever went to around 10 with nothing showing on a CT scan then he would order a PET scan. Perhaps your onc decided that a PET scan would be more useful in this case. I am not sure that chemo would cause inflammation in your lungs. Be careful about reading too much on google - sometimes it can heighten our anxiety Best wishes and I hope that the lung spots are nothing of concern.

[AnnClare]

Well, I just got off the phone with my onc's nurse, who said she spoke with my onc, who said I 'must have misunderstood,' that it wasn't an either/or option to have the biopsy vs. scan, that I'd need both.

My husband and I were BOTH there & know what we heard. He clearly indicated the needle biopsy was an OPTION, meant to put my mind at ease between now & my subsequent scan (which, again, he said would be a CT in 3 months, not a PET right now.)

Anyway, I'm scheduled to have the PET scan on Nov. 30th, and will meet with one of my onc's colleagues on 12/5 (because my onc will be out of the office the entire month of December -argh!) I'm still not scheduling the biopsy at this time - I'll wait to see what the PET scan reveals and what the doc has to say.

I'm getting so frustrated with this whole post-Tx monitoring business, and I've just begun. I'm also starting to get annoyed with my onc and the miscommunication. I've really, REALLY felt comfortable with him to this point, but now I'm starting to have doubts. Part of me just wants to say, "Leave me alone - I'll just live my life & take my chances, hoping for the best."

[nomoretacos]

I've never had a PET scan.

My post chemo baseline CT scan showed two spots, one on the liver and one on the lungs which were too small to characterise. My Onc said she was 99% sure it wasn't cancer but maybe they just say that so the patient doesn't worry and said my next scan would be in 12 months then i was discharged. My follow ups will be with my surgeon and i'll be pushing for another scan at 6 months.

I know how you feel, i'm so over everything, I just want to move on with my life, it's so nice to not feel like crap every two weeks

I think its good your Onc is being vigilant.

[AnnClare]

Thanks for your input, nomoretacos. I appreciate any and all insight, experiences, etc.

After discussing today's frustration with my husband, I'm going to cancel the PET scan. Tomorrow I'm going to call my onc's office, see if I can get an appointment to meet with him & discuss in person to clarify exactly WHAT he wants done, when, and why. After his numerous reassurances last week that "everything looks great" and this lung spot is nothing to worry about, and approving my port removal next Thursday, WHY the push for the biopsy? I think something is being lost in the translation here. Regardless, I'm not going to move forward with ANY tests until I get to speak with him face to face, and if that's not until January, so be it.

Thanks to all for letting me vent/rant. I hate how, even after the surgeries & treatment, this shit still takes up so much time and energy. I'm trying not to stress . . . work in progress.