Fill Out Your Profile to share more about you. Learn more...

Lobular Stage IV Imaging Issues - I Know I’m Not Alone

Options
kbl
kbl Member Posts: 2,680

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

  • charlevo
    charlevo Member Posts: 1
    Options

    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.

  • kbl
    kbl Member Posts: 2,680
    Options

    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.


  • kbl
    kbl Member Posts: 2,680
    Options

    Bumping up. I’m sad to see only one response. I know there are many of us out there.


  • nkb
    nkb Member Posts: 1,561
    Options

    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.

  • kbl
    kbl Member Posts: 2,680
    Options

    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.

  • sunnidays
    sunnidays Member Posts: 153
    Options

    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?

  • kbl
    kbl Member Posts: 2,680
    Options

    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?



  • kbl
    kbl Member Posts: 2,680
    Options

    Bumping so I can keep this active.

  • sunnidays
    sunnidays Member Posts: 153
    Options

    kbl, I have been on Zometa for 2 years

  • kbl
    kbl Member Posts: 2,680
    Options

    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.



  • kbl
    kbl Member Posts: 2,680
    edited February 24
    Options

    It’s been a year since I started this post, and it didn’t get much traction. I know lots of people have problems with the imaging for lobular, so I’m bumping again. I am now on Orserdu and have not had imaging in seven months. Why bother? My tumor markers have dropped, so that’s what we’re counting on.

    Sadly, nkb from this thread has passed away.

  • cyathea
    cyathea Member Posts: 330
    Options

    Sad to hear we lost nkb.

    I have something small in my liver (5 maybe 6 mm). Might be nothing, but it showed up on a PET/CT and an MRI. I would feel more encouraged if the MRI was clean.

    It’s so hard to make life decisions when things are “up in the air” with what will happen next with treatment. I would love to change my work situation because what I’m doing now is super stressful, but I need health insurance and changing anything right now seems like a rash thing to do.

    kbl — it’s encouraging to see you’re still posting. You are doing good work for those like me who haven’t been posting much lately.

  • kbl
    kbl Member Posts: 2,680
    edited March 3
    Options

    @cyathea It’s good to see you here. Thank you so much. Orserdu seems to be working for me at this time. I hope to be on it for the long haul. I hope whatever the PET and MRI sees turns out to be nothing. Are you going to monitor or switch meds? I’m so sorry your job is so stressful. Is there any way you can go out on short-term and have your insurance to have a break?

  • cyathea
    cyathea Member Posts: 330
    Options

    @kbl I have to wait. 🥴 The lesion is too small to biopsy so my MO will do another MRI in 4 months to see if it grows or changes.

    The work situation is now on hold as well. I want to keep working and supporting my clients. They bring me joy and I love working with my team. It’s just a couple individuals that making life really awful. I’m sure everyone has to deal with this from time to time. I just need to take things a day at a time to get through this rough patch.

  • mavericksmom
    mavericksmom Member Posts: 1,119
    Options

    Hi @kbl and @cyathea I am new to this thread, but not to BCO. I have dealt with breast cancer for 21 years. My second diagnosis was with ILC in Dec, 2019. I am on Letrozole again after my third dx (IDC) in Aug of 22, but that is not what concerns either my MO or me, it is the ILC!

    I had both breasts removed (not at same time as I wanted) and I am on the Letrozole. Nothing but reconstructed breast examinations. No scans, no blood tests, other than my routine tests from my cardiologist. No tumor marker tests. My tumor was just shy of 2 cm, so not huge.

    I had a bone scan done last summer due to bone pain, which I still have. It didn't show anything.

    I hate the feeling of waiting for symptoms to show up. I try not to worry about it, but after being blindsided by cancer three times, I can't help myself.

    I never had a PET scan. I should say I was treated by three different teams of doctors at two different hospitals.

    My Onco testing was 23 for the ILC but I wasn't given chemo due to being over 50. I can't help but wonder if I am alone feeling that if I stop worrying about ILC showing up again, it will.

    Thanks for letting me vent!

  • kbl
    kbl Member Posts: 2,680
    Options

    @cyathea The waiting is so hard. I will be thinking of you as you wait. And I’m sorry there are a few bad apples at work making it so difficult for you. I hope you can find some resolution so your stress level doesn’t go through the roof.

    @mavericksmom I’m also sorry you’re having to think about metastasis with others not really listening to you. MRIs of my spine did show mine, and bone scan shows absolutely nothing for me, even though it’s in bone and bone marrow from head to knees. If you want my advice, complain again about where the pain is and ask for an MRI. If it comes back with no cancer showing, that would be a good thing. CTs don’t show it for me. Keep complaining of the pain until they okay the MRI, even if you don’t have any at the moment. It will give you some peace of mind. Sending hugs.

  • claireinaz
    claireinaz Member Posts: 679
    Options

    ILC recurrence showed up in CT scan. Bladder/ureter, etc. Then MRI revealed more, and PET scan too. Right now I am getting my 3 month scans done next week, but insurance won't pay for a repeat PET because, quote, there is no bone involvement, so I will have a bone and CT scan. I'm told that an FES-PET is the gold standard for finding/confirming ILC but my MO wouldn't order one for the dx and I doubt BCBS will pay for it since they wouldn't pay for a standard PET.

  • kbl
    kbl Member Posts: 2,680
    edited March 14
    Options

    @claireinaz Hi. If I’m not mistaken, you are on Faslodex. An FES wouldn’t be an option right now. I would feel okay if CT scans see your cancer. They do not see mine, so it’s not a good indicator. Have you had a blood biopsy to see if you have any mutations? Please keep us posted on your CT and bone scan results.

  • claireinaz
    claireinaz Member Posts: 679
    Options

    kbl, yes, I did have the blood test as you mentioned and I do have mutations, which the lab told me means that I have options if current tx doesn’t work. Whatever options those are, I’d like not to know for awhile because I am hoping femara and verzenio are going to work for a long time.

  • kbl
    kbl Member Posts: 2,680
    Options

    @claireinaz I understand. I hope you get a super long time as well. It’s actually good to have mutations because it opens up lines that wouldn’t normally be available. The drug I’m on because of a mutation is working better than any I had been on to date. I also hope it works a really long time. 💕