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
-
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.
0 -
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.
0 -
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.
0 -
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.
0 -
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?
0 -
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?
0 -
Bumping so I can keep this active.
0 -
kbl, I have been on Zometa for 2 years
0 -
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.
0 -
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.
0 -
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.
0 -
@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?
0 -
@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.
0 -
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!
0 -
@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.
0 -
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.
0 -
@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.
0 -
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.
1 -
@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. 💕
1 -
My mom had 3 PET where nothing lit and 2 CT scans. First PET was NED. Subsequent PET did not light up but showed bowel wall thickening, mild acites, and hydronephrosis. So imaging didn’t help. Her diagnosis was found through colonoscopy and pathologist report says it is adenocarcinoma with breast origin since it is ER/PR+, HER2-.
@kbl how was your mutation determined? What tests can we ask for to determine mutations?
Wishing you all successful treatments for a very very long time.
0 -
@anthony_ng119 I’m sorry the imaging issues happened for your mom as well.
The way my mutation was found is through a blood biopsy. I had one in 2020 with no mutations found and again in 2023, with the ESR1 mutation found. I have no genetic mutations. My mutation was caused by Letrozole.
Please keep me posted on how your mom is doing. Thank you.0 -
It’s unclear at the moment how much my ILC shows or not on imaging. Nobody agrees. The original tumor was missed even though I was having routine breast MRI, but not because it was not showing. I saw it myself (after the fact) while it was still small. It was just ignored as being part of my fibrocystic breast. I actually found the lump, two years later, and on the MRI ordered then it was huge and unmistakeable.
Since then, I’ve had several clear FDG PET, U/S, Xray and CT. I’ve also complained more than once about two spots on my spine that occasionally felt bruised when I would lean back on a chair, and they would bang on my back and say if that doesn’t hurt it’s fine. (That even happened two days before I was told I was metastatic IN my spine.) No follow up on MRI ever.
Six months ago, routine CT showed something on the vert, but that was also written off as “just arthritis” even after I asked how do we know it’s not cancer. Sometime between then and now, T6 fractured unbeknownst to me. Another routine CT this past April showed the fracture, and a slightly shadow of some sort on the vert indicating it was not arthritis. Follow up MRI, to my shock, unequivocally stated it was in almost every vertebrae (though I just found out yesterday they didn’t actually mri the whole spine so there might be more). But FDG PET one week after MRI shows only four spots, all bone. One MO says PET is significantly underestimating the amount of cancer (apparently is believing the MRI) but refuses to order FES as it “will not really add much.”
I am to have a bone scan next week to “see if that’s a better way to follow my Mets.” I have repeatedly asked how we can know it’s bone only (if the PET is erroneously seeing only four out of a billion places in the spine, how do we know it’s not also missing things in the organs), but basically they say it’s unimportant as it won’t change treatment. I was told that the good news is that we CAN see some of my Mets (because in some people nothing ever shows), and so we can follow those that we can see, and assume that if treatment is working there, it’s working wherever else there might be Mets. I pointed out that knowing there’s only four as opposed to a billion (if PEt were right) would matter as it would make me oligometastatic and we could zap them with curative intent and then maybe play whack-a-mole after, to give me more time.To confuse me even more, it was also mentioned that the problem is going to be that I can’t go by pain as an indicator if treatment is working because one of the two drugs I’ll be taking has a slight analgesic effect that could mask any pain (and I don’t have a whole lot anyway), AND because it’s going to be hard to figure out what is Mets pain and what is osteoarthritis in my spine which I do have. So is the doctor who tells me the PET is right, and a lot of the other stuff on MRI is actually arthritic inflammation correct? Or the doctor who tells me the PET sucks for ILC and my spine is actually riddled with cancer? Who/what do I trust. Leave it to me to not only get cancer, but to get a cancer that imaging can’t even see so we have no idea how much is there.
Edited to Add: And let me just say to any doctor reading this now or in the future…… to refuse an imaging option like FES that would show ILC, and to basically shrug and say “it doesn’t really matter” is just cold and a little bit heartless in my opinion. I am more than my treatment. More than my cancer. Knowing what my body is doing so I even FEEL more in control in this horrible horrible disease, or at least know what’s there or not, that counts. That matters. A Lot.
2 -
@kmom57 One way they could verify what it is for sure on the spots they’re not sure of is to do a CT guided bone biopsy. They could pick a spot they aren’t sure of and biopsy it to see. I know that’s an invasive procedure, but it would be definitive. The other thing about the FES is it is the only thing besides an endoscopy that was able to see my stomach mets. I don’t scan right now and haven’t had a scan since July of last year. It’s just not worth it for me because of not seeing anything on CTs and FDG PET sees none of my cancer. I’ve gotten to the point where I have to go by how I physically feel. I’ve never had any fractures and have had the same amount of back pain throughout whole 11 years. I totally understand your extreme frustration. One thing I definitely would say is listen to your body, and if you feel in your heart something isn’t right, make them listen. If they don’t want to listen, it may be time to find someone who will.
0 -
KBL the biopsy is a good idea. Unfortunately, this new MO doesn’t strike me as the type to be open to suggestions. I may be wrong as I’ve only had one appointment, but that’s how it appears. I’m trying to get in with MDA. I just don’t know how long that will take or if it’s too long to wait or if I go ahead with what they want me to do or what. It’s so confusing. I made the wrong choice on who to believe 4 years ago, apparently, I’ve now found out and I don’t want to do that again.
0 -
Here is the other thing, KBL. I was doing some research. The idea that lobular is “rare” and that’s why there is less research is a fallacy. There were something like twice as many new cases of lobular expected last year than either Her2+ or triple neg. And that’s where all the research is. Why? And what can we do about it? It’s too late for me, but I still want to do something about that, for my daughter and all those other women out there who do not need to end up where we are, any more than we should have ended up here. I don’t know what but I want to do something.
1 -
Thank you @kbl. I'll ask the onco if we can test for mutations. My mom has been on anastrozole since completing chemo/radiation years ago. Wondering if that caused any mutations.
1 -
@kmom57 Lobularbreastcancer.org is a really good site. The Lobular Breast Cancer Alliance is working hard to change things up for lobular patients. I don’t see a problem for you getting to see Dr. Mouhabbi. I know many in the Lobular Facebook group have seen him and love him. He is a scientific advisor for the LBCA.
Can you remind me of your treatment?
1 -
@anthony_ng119 Its definitely a good idea since the AIs cause the ESR1 mutation.
1
