In the PET SCAN world, I’m curious, what happens when one spot shows an increase in avid/activity, but everything else shows stability or even decreases?
My scans have been stable and favorable this past year (praise Jesus) after starting letrozole/ibrance 16 mos ago for bone only, lobular, ER+. I have mostly “sclerotic” lesions, but do have a few bone Mets show a little estrogen activity. They scan me with the new FES pet scan which measures estrogen since I’m lobular.
This month my scan showed everything to be good except one spot which had a .9 increase (going from 2.0 to 2.9).
has anyone else had this happen?
Thank you! 🌸
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Gardengirl345
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Curious if they are comparing the FES scan with the PET scan(s) to measure the increase? I have been looking at getting a FES Scan (lobular as well) but my current treatment center does not have one. Do you mind sharing where you are being treated?
I’ve had three FES scans now so they are only comparing to those at this point. I began FES last summer when it was first approved. My lobular cancer hardly shows on regular PET. They almost missed diagnosing it because it shows nothing on nuclear Med bone scans and almost imperceptible on FDG pet. But these sclerotic lesions were caught on ct and mri, so we knew. I live in the atlanta Georgia area so I do have access to the FES. My dr feels like it is a game changer for tracking lobular hormone + cancer.
Are you having them done at Emory Winship? My treatment is done through Northside in Gwinnett. However I am looking to possibly switch to Emory. I went for a second opinion back in Dec last year (2022). At that time the treatment regiment was the same as the Northside Onc. I very much appreciate you taking the time to discuss. To this point I have only had CT scans. Having CT tomorrow due to some nausea and acid reflux (which started 2 day after starting radiation). Onc stated that is a common symptom with liver mets. He dismissed the fact of having an endoscopy. Said he has never heard of lobular spreading to the GI tract. Although I brought articles from MD Anderson, Cleveland Cancer Clinic, and LBCA (Lobular Breast Cancer Association).
yes, Emory winship. I love my doctor. She strikes the perfect balance of being positive and hopeful … but also careful and cautious. I was at Piedmont for first stage 1 dx in 2011, then to northside, but moved over to Emory last year with the MBC dx. If your dr said they’d never heard of lobular in GI areas, I would encourage you to move on with drs. That’s ridiculous. We KNOW that’s where it goes AND it’s hard to see in those areas. You’re right, all the articles + research discuss this as possible. My dr encouraged me to get my regular colonoscopy. Instead of endoscopy, she wants to try the new ctDNA blood test which is another more sensitive way to track lobular cancer. Not invasive. I’ll start that this summer. Just to be sure. Lobular is so tricky. Am I allowed in this thread to share drs names? I’m not sure the rules on that, but I’d be happy to do so. Xoxo
I am not lobular but that sort of thing happened to me when I was on Ibrance. With a small increase like yours my onc would wait until the next PET to see if it was a trend. I had radiation to 2 spots that were “misbehaving “ and stayed on Ibrance.
I don't have lobular, but see a similarity in your experience to mine.
My scans have been stable or better for the last 4 years, which are the first 4 years for me. My onc actually said at my appointment in 5/22 that I was "doing incredibly well on Tamoxifen for 3+ years and counting" (at that time it was 3 yrs 2 mos) and that everything was "stable and behaving itself."
Then my onc moved to Canada, and I have had a series of crazy obstacles, that were out of my control, to getting to my next out of town scans. So, way overdue for them I had them mid April. Nuclear Bone scan (as I was diagnosed at the same time with BC and MBC ...only in spine) and CT.
My new onc says in my appointment that there was progression in my tailbone...and I said,"What?!!" How can you have progression in a spot you didn't have before? I looked on my appointment notes and summary from 5/22 and found that radiologist had said that there was new spot on tailbone then!! But, my onc had given me a great...best ever report!! My TMs were still in normal range, and only one is slightly above normal now. I have to believe that my original onc didn't think it was a big deal. I did break my tailbone 7 yeats ago, and it has bothered my on and off since then. Then in March I reinjured it. My new onc thought it a possibility that tailbone break and reinjury was the cause of uptake, so she took my case to a tumor board for their opinion. At my follow up appt this week, she said that the tumor board thinks it is progression not injury or arthritis. Most or all of my bone lesions are sclerotic. What does that mean?
One rib and my skull are said to now have spots (though hard to believe this as well, due to all that happened), but not concern to onc. I have not believed that it was progression, and wanted to wait for another round of scans to confirm (or see evidence of not having or reversal) before switching from Tamoxifen, which I have tolerated very well with few and mild side effects to something unknown to my body with very bad side effects. I am very sensitive to all medicines and often require smaller doses than average person.
To go with your question Garden Girl, I have asked myself and onc, why just tailbone? Though, something in my appt this week made me think she was slipping in L4 into progression talk ...though she only said tailbone last month...both appts are going from same scans, though blood tests were done at end of April appt.
So sorry. This kind of stuff! Uugh. I was on tamoxifen for 10 yrs after stage 1 in 2011 and did fantastic. Totally forgot about cancer for 10 yrs. So I understand the desire to stay with that Med. Mine however came back 10 yrs later even tho I was told I had less than 1% chance of reoccurrence .no one saw it coming. So frustrating. I too had a dr who always told me “you’re doing great! You’re my star patient!” I was kind of lulled into thinking I’d beat it completely. So when it showed up on a random CT scan we were all floored. Most of my lesions looked sclerotic as well. Two radiologists first dx them as “healed mets.” That’s kind of what sclerotic means. It’s good!
I’m on letrozle/ibrance now and tolerating it but it’s a bit tougher. But am Mostly doing well. The dr got back to me about my one spot having uptake increase and she said we would just watch it, it doesn’t necessarily mean anything. So that’s our plan. I’m also adding the ctDNA blood test which is a sensitive way to monitor cancer activity. It’s new. It’s better than TM apparently.
Maybe push for that? Before you up and change all meds? I suppose it comes down to how much do you trust your dr. My first dr didn’t believe I had MBC since my prognosis was so great after stsge 1, I had to switch drs when things got real.
Thank you so much for your long and thoughtful response!! That is good cutting edge info about the new blood test...I will push for that. Best to you too!! I will respond more later. 😊
Hi! My dad is going through something similar right now. He was started on Ibrance, Letrozole, Lupron in June of 2022. PET Scans in September 2022 and January 2023 showed complete resolution of bone mets (NED). His scan last week showed uptake to the right chest wall (where his breast cancer started in May 2022). The SUV max of 1 lymph node is 5.6 the other two are so small (less than 2.5 uptake). The plan is to keep him on Ibrance and letrozole and re-scan in 2 months.
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