Contradicting scans, is it because I have ILC

melmcbee

In December I had a Ct chest and it showed sclerotic lesions in t-spine, so I did a mri of t-spine and it said it was likely metasteses. I then did a bone scan which showed no cancer. So I just assumed that I was ok. Well the mo wanted me to do a ct abd and pelvis so i finally got that done and it us 2 pages of lesions in my spine that some if them are benign bone islands but there are newer ones that the report says likely metastesis. I have also had a 30 pound weight loss. I have no idea if these lesions are big enough to biopsy but I know that doesnt sound fun. Has anybody with Ilc have experience with contradicting scans. Thanks in advance.

trinigirl50

Hi

I don't have experience of your issue but I belong to a FB group of ILC breast cancer women. I remember one woman who said that the ILC doesn't really show up on bone scans but the CT scans were better. You can post your question there. There are some very 'scientific' minded ladies there who are a fount of information on those topics. https://www.facebook.com/groups/Lobular/ Good luck.

lekker

My understanding is that it isn't the type of cancer so much as the type of bone met that dictates whether or not it shows up on a bone scan. Some cancers cause sclerotic bone mets (where bone is growing) and some cause lytic (destructive) mets. Breast cancer is known to commonly cause both kinds. Bone scans are generally good at picking up sclerotic lesions so it's interesting that yours aren't showing up. I think when you have contradicting scans like you do with a high suspicion of mets, you either try to biopsy or start to treat and see if there's a response. Unfortunately you're not guaranteed accurate results with any one scan which is why it's not uncommon to sometimes have several different ones. It's like my palpable breast lump showed up on ultrasound but not mammogram

melmcbee

well my oncologist is still on vacation, however I did get to talk to radiologist that read my last ct. He showed me several small lesions in my spine and pelvis that he felt were likely mets. He didnt think I would be growing that many bone islands at my age. He said they are too small to biopsy and to follow up with cts. He also said they were too small for the bone scan to pick up. As far as my mo goes he is now out of network for my insurance company. I am going to try to go to MD Anderson which is in network but in another city. I dont know what to do because without the biopsy then I wont know how to treat it. Im taking arimidex. I dont even know if I am now stage Iv. Thanks for any advic

Freya244117

Hi Mel,

ILC can be a pain to dx. In my experience, I get the pain, and then about 3 months later it shows up on the scans. For me an MRI shows it earlier than a bone scan. For the record, the bone biopsy was a painless procedure, just felt a bit of pressure and that was it.

melmcbee

Thanks Freya. What is the first treatment fore bone mets. Will my arimidex work.

Freya244117

If you were taking Armidex when it progressed to the bones, then it means the drug isn't working and you would need to try another one. I stayed with AI's for a while, and used rads for pain relief as my mobility was severely affected and patches and other drugs did nothing for the pain. The rads was usually a 5 or 10 days treatment and I had great results with it, usually within a few days.

I would still try other means first, as too much rads can cause problems down the track with your bone marrow, especially if done around the pelvic area.

melmcbee

Thank you Freya. I unfortunately havent taken the arimidex consistently since the begining. Im not missing a pill now. Thanks agai

MGNewYork

I'm Stage 2 ILBC. Passed bone Scan Ct showed multiple lesions on Thoracic Spine. MRI shows multiple Lesions on Thoraric Spine... but they are calling it a differential diagnoses because I have cancer and they can't say for sure if it's Osseous Mestatic disease but that it looks like it and that further testing should be done. My doctor called last night said the Oconotype DX test came back very low. And that I will not need chemo. He said Radiation, Tamoxifen and we agreed on a biopsy for one of the lesions seen on MRI. My questions are has anyone heard of this...chemo being pulled off the table because a DX score was so low enough and estrogen positive. Also I had 2 lymph nodes that tested positive.

melmcbee

I just wanted to post an update. The radiologist that does spine biopsies said my lesions are too small to biopsy. Im to wait 3 months and do anither scan. Thanks