Just received my Pet Scan results
Hi everyone, I have unfortunately been on this site for 9 years now. Diagnosed with early stage in 2015. Then had a recurrence in 2022. Yesterday I had a follow up Pet scan and the indication says "New hypermetabolic abdominal, pelvic, and thoracic lymphadenopathy, presumably reflecting metastatic disease." I briefly spoke to my oncologist and he said there are several lymph nodes that are lighting up as well as some fluid around my lung. They are scheduling a node biopsy and going to drain the fluid and test that as well. I am kind of freaking out here just reading that. Has anyone had scan results like this and have it not turn out to be MBC?
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@mvspaulding, we're so sorry you’re going through this. The wait for results can be truly terrible, but only the biopsy and fluid testing can confirm whether it’s metastatic disease. Until then, we're thinking of you, and keeping our fingers crossed for benign results.
Sincerely,
The Mods
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@mvspaulding The testing phase is a very scary ride, and nobody can't know yet, but we're here for you.
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Thank you - maybe the part that is the worst for me is telling my kids once again news like this.
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Hi, all these tests and pathology reports are scary as heck. I had cancer in 2011 ER+PR+Her2- and the only tests I had were a mammo, biopsy and MRI. This time, 13 years later, my surgeon started with an MRI and then my oncologist moved on to Bone scan, CT scan, PET scan, Tumor Markers, Genetic Testing and another MRI. The CT showed enlarged lymph nodes in my abdomen. Those results got me a trip to the PET scan and the Pet scan showed activity in those lymph nodes. I then had to wait almost 5 weeks for a biopsy which in turn showed nothing of interest. No cancer. Perhaps those nodes were doing their job the same time the test was taken. So yes, it can be nothing. I'm guessing when we have had a recurrence they are hypervigilant. I think I was told or read their was a greater chance of mets then a local recurrence. I'm curious, how can you have a left lumpectomy if you already had a left mastectomy? Wishing you well on the tests and hopefully they are simply working nodes.
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hi I pray that you are right and the nodes aren’t cancer. I think that the fluid in lung could also be a lasting side effect of radiation. I did have a double mastectomy first time around. There is about 5-6% breast tissue leftover after that. I’m the lucky one who got a new recurrence in that little bit of breast tissue in my left armpit. They already got me scheduled for this Friday for node biopsy and thoracentesis. Thanks so much for your response.
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I hope your biopsy and treatment went well last Friday. Having this crap come back is awful. I wish they had some better stats on recurrence so we would be better prepared. So many posts I read talk about recurrence rates and they really don't realize they are talking about distant recurrence, not local or regional. I often hesitate to bring up this information since they are dealing with cancer for the first time and sometimes it feel wrong to correct someone. Who knows.
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@mvspaulding thinking of you during this time, keep us posted!
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hi all. Unfortunately the biopsy on lymph node came back positive for cancer. So I am now considered stage 4. Met with my Dr yesterday trying to understand how this happened when I was on Verzenio/exemesthane. He said that the cells can mutate and become resistant to the drugs you are on. So he is testing me for the ESR1 mutation and if that’s positive I will move to taking a drug called Orserdu. Im just so mad and upset, just feel like no matter what I do this is going to get me. I’m trying to stay positive that this test and new drug will work for me. As we did catch it really early. But I just saw my CA27-29 marker test came back and it’s really high. So that’s scary.
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Mvspaulding, I'm sorry you have joined us in stage IV but you have caught it early . I was dx stage IV 11 years after stage 1 node negative bc cancer (oncotype 23 so completed chemo , rads , surgery and 6-7 yrs on femara.
Your onc is on top of it - also should test you for the pik3ca mutation along with the ERS1 mutation.
I've been on ibrance / fulvestrant for 5 years now and doing fine . I have a new, 9 mm spot lighting up but the oncologists don't consider it progression yet, scans next week. We understand that it's overwhelming . Better treatment is always in trials and coming up for us .We are here for you ! I've learned so much from the stage IV boards. No one understands our reality like those of us with the dx .
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thank you. It’s so scary right now but I like hearing stories like yours where you are doing well.
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