PET-CT scans after node recurrence (and while on Verzenio)?
Hi everyone. Looking for some advice from all you wise, brave folks.
I had IDC 18 years ago; ER+, PR+, HER2 neg/double mastectomy/chemo/tamox/negative sentinel nodes. A year ago was diagnosed with an aggressive axillary node recurrence; surgery to remove 8 nodes, 4 pos, 4 neg. Went on letrozole, had radiation, now 9 months into 2 years of Verzenio.
Here’s my question: my oncologist doesn’t believe in scans to check for distant recurrence; says they don’t help outcomes compared to just waiting for symptoms to show up. But 2 other oncologists I consulted last year (at my doc’s recommendation — long story) both said they would recommend annual PET-CT scans for me for at least the first few years, on the theory it’s better to find bad stuff early.
That makes sense to me; I’m scared and I don’t want to have any regrets that I wasn’t proactive enough. (Of course, that new study came out last month saying radiation from too many CT scans can cause cancer…)
Anyone out there getting regular scans to check for distant mets? Any perspectives appreciated!
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@peggy_m I'd get a second opinion at a major cancer center. This doesn't sound right to me.
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Peggy,
This has been a point of contention for some time. There is a long running theory (forgive me as I have no actual data) that finding mets early does not increase survival time, even with tx, you just know about it longer. I pretty much think this was my situation. My bone met was an incidental finding. No pain, no symptoms but it would have appeared years after initial tx had it not been found accidentally.
There have been challenges to this theory, and logically they make sense, but I don’t think there overall agreement on this. I was treated with rads to that initial single bone met. Is that what gave me a 13 progression free run? We will never know 🤷🏻♀️.
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Thanks @tougholdcrow; good advice. One of the docs who told me she’d do annual scans is at MSK (their LI satellite); the other is at NYU Perlmutter in Brooklyn. Can I ask, did you have a full-body PET-CT when you were initially diagnosed, and what led you to get the restaging scan 6 months later?
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@exbrnxgrl Yes I know that debate well. No study seems to exist showing scans/early detection/treatment increases survival. But one doc has said to me that the studies that show no benefit were done years ago, before current advances in imaging/scanning technology. (And I guess not to mention advances in treatments.) She says “we need a new study.” She also said she’d rather find something early, when what she called the “disease burden” is low, instead of waiting for it to be high enough to cause symptoms. Sounds like this is what happened to you. You said initial bone met was an incidental finding — was it on a scan for another purpose? And do you know you had 13 progression-free years because you were having regular PET-CT scans during that time? How often? (Sorry to pepper you with questions — but your perspective is really helpful.)
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Hi Peggy,
I agree that studies need to be done, particularly on the newer targeted therapies. I recently started Ibrance, a drug still in trials when I was dx’ed. It’s still under patent so no generic. Thank goodness that Medicare basically covers it if you have Part D. It might be the most valuable thing in my house 😂
Why I had a PET had nothing to do with my stage IV de novo dx. I was starting to enroll in a clinical trial that required an echocardiogram, which revealed fluid around my heart . The fluid turns out to be idiopathic but unchanged in years…and what’s that spot on your femur? And you also have a complete pneumothorax of the right lung. Rushed to ER, hospitalized for a week, three chest tube insertions, total nightmare. Finally biopsied the femur spot and it was a twin to my breast tumor. Had radsx15 to the spot, tried all the AI’s. Never had chemo. Had PET scans , initially, every three months, then six months, nine months , then a year. However until my recent progression my treatment “light” never changed. I kept switching AI’s to mitigate side effects. My story is definitely unusual and no mo would likely recommend it today ( remember, no Ibrance, Verzenio, etc. back in 2011). It worked without rhyme or reason for 13 years.0 -
@peggy_m I had a nightmare situation. I was diagnosed with a 2cm breast tumor with spread to lymph nodes, confirmed by biopsy. That set off a bone scan and a CT scan, and then because there were possible findings there, I went on to a PET-CT. I was misdiagnosed at that point. My oncologist did not think the findings on the scans were worrisome, and instead sent me immediately into 5 months of chemo with surgery to follow. After the 5 months of chemo, I had another PET-CT, just in case, and the oncologist still argued that the findings were not cancer, but I was alarmed by the report and asked for a biopsy to rule out metastasis. The onc agreed and lo and behold, I did indeed have spread to my bones, and it had been there all along. So, I could have avoided chemo, although I do wonder whether the agressiveness of the treatment might have helped in the long run. Anyway, I wish I had gotten a second opinion at the outset, and I have now moved on to a top cancer center.
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And that is why this disease is still a mystery in many ways. I had very non-aggressive tx and was progression free13 years 🤷🏻♀️.
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@exbrnxgrl So glad your “treatment light” worked for you for so many years; all the best in your next chapter. Thanks for sharing your story. I am getting the sense, from this thread and others on this site, that’s it’s pretty odd for someone like me (regional recurrence with 4 positive nodes, aggressive mamaprint) to not be getting more monitoring than I am. I am on Verzenio and get routine bloodwork (not circulating tumor cell tests) every couple of months, but I’ve also seen posts from people who had disease spread while on that or another CDK-4 inhibitor. It’s the uncertainty of it all, and all the questions/options/mysteries that have been the hardest to deal with.
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@tougholdcrow Hate that you went through that misdiagnosis. Good for you for pushing for a biopsy. Your story reinforces just how much of this process falls squarely on patients’ shoulders. There is more than enough fear and worry that comes with a BC diagnosis, without the added burden on us to spend hours on research, seeking second opinions, etc etc etc. But the message I am taking away from you both is to listen to my own instincts — because my doctor’s aren’t necessarily right. Thanks for sharing, and best wishes ❤️
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@peggy_m If I hadn't finally gotten the stage 4 diagnosis, I would have had surgery, which would have delayed treatment. So, it is important to nail down the diagnosis. I think there is some mystery to it all, but the less the better.
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i am a 2 time breast cancer and 4 time endometrial cancer patient. I only wish I would have had the knowledge and sense to insist on getting a PET scan after I was diagnosed with cancer a 2nd time. My first breast cancer diagnosis was in 2017 and first endometrial cancer was in 2019. The endometrial cancer returned for the first time in 2021 and that is when I insisted on having a PET scan. I currently have a PET scan every 3 months for two reasons, I have a gene defect that makes you more likely to get cancer and I am now battling cancer for the 6th time. My radiation oncologist and I have agreed that I need a PET scan every 3 months until I make it for a year without having a cancer recurrence, at which point we would switch to PET scans every 6 months. To date I have not made it a year without a new cancer popping up and continue on the 3 month PET scan plan. Please get yourself a second and even a third opinion and find a doctor that believes in PET scans. The minimal risk of cancer from the PET scan radiation is warranted when you are a cancer patient whose cancer(s) keep on returning. Cancer treatments like chemo and radiation can also cause us new cancers down the line, so a doctor not wanting to give you a treatment because it can cause you to develop a new cancer is hogwash. Good luck to you.
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