Lobular Stage IV Imaging Issues - I Know I’m Not Alone
Hi, everyone. I was thinking about starting a Facebook group for those of us who have so many issues with imaging. I got some feedback from others that they did not want me to start a separate group, so I am starting a group here.
Below is my post on Facebook so that you can get a sense of the imaging issues I've had.
Please feel free to write any issues you have with imaging, as well as questions that maybe some of us will have had experience from. This is a huge problem with lobular, and I want to advocate for us.
Post on Facebook:
“I know I'm not the only one here where much of the imaging doesn't work. FDG PET scans don't work, CTs don't work, bone scans, nope. The only thing that sees the extensive cancer in all of my bone and bone marrow from skull to femurs are MRIs. The only thing that shows it in my stomach are endoscopies. I know I can't be alone.
Edited to add FES PET showed all of it, even in my stomach. I'm on Faslodex, so I can't have one now.”
Comments
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Thanks for starting this group.
I was diagnosed July 2019 with extensive mets to the bones. I had a mass near my left chest wall that they were able to biopsy and found it was ILC. (ER/PR+ HER2-) I’m not convinced imaging is showing the mILC because my tumor markers (which are pretty reliable) have jumped significantly but nothing has changed on bone or CT scan. I’m on Faslodex so no FES for me right now.
I’m hoping to learn from others and become an even stronger self-advocate with what I learn here.
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Hi, charlevo.
I appreciate that you’ve come here to tell your story.
Can I ask if you’ve ever had an MRI other than a breast MRI? I’ve found MRIs of my spine are the only thing that works for me. Also, are you having any symptoms? Have you ever had an FDG PET scan to see if it works for you? It didn’t for me, but it does for some.
Tumor markers work for me as well. What I hate is when they are moving in the wrong direction, it’s like you have to wait for symptoms to start.
I was on Ibrance and Letrozole for two years, but my stomach symptoms started again, where I couldn’t eat and was losing weight. I told the doctor I wanted to switch meds, and it was the right decision for me. I am not advocating a switch if you have no symptoms, but I trusted my gut when I knew things were progressing without evidence on an image.
Please keep me posted as to how you’re doing.0 -
Bumping up. I’m sad to see only one response. I know there are many of us out there.
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MRI is the only modality that showed cancer in my breasts- all US and Mammos negative- had lumps eventually that surgeon didn't mind and palpable axillary lymph nodes- finally had a biopsy which was positive and demanded an MRI to make sure it wasn't bilateral --> it was!
PETs show my cancer-->had a CT with contrast in recent hospitalization and it didn't show anything that wasn't on PET--> I guess if needed (if things didn't make sense TM wise or symptom or other lab wise) I could have an MRI at some point--> but, so far I haven't. I have never had to drink anything for CTs, just the contrast.
This may be a new topic for many-->lots of insurances don't allow PETs.
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Nkb, thank you for contributing your story. I’m glad you were able to get breast MRI. I wish I knew the reason why it shows for some and not for others.
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Mine showed up on the bone scan and CT scan, I have never had an MRI because I have severe agoraphobia and would have to be semi-sedated to have an MRI, none of the tumor marker tests work for me, my oncologist said they don't work for everyone, I am on a schedule of bone and CT scans every six months she also asked me to stop Zometa after the last infusion as she believes it can cause kidney issue with long term use, I said yes but now I think I should have has a discussion with her regarding this can you go back on it if you need too?
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sunnidays, thank you for sharing. I’m sorry you have the issues with the MRI and tumor numbers. Another way not everything works. How long have you been on Zometa?
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Bumping so I can keep this active.
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kbl, I have been on Zometa for 2 years
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I’ve been on since 2020. I can’t remember which month I started it. At first it was monthly and now every three months. I keep having things on my CT report about my kidneys. My numbers have been fine. This time it says there is mild fullness. At one point on a CT the radiologist said I had hydronephrosis, but I had a renal scan and all was fine. It’s such a pain.
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