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Lobular Breast Cancer: Let's share and support each other
Since lobular breast cancer is only 10-15% of all breast cancer diagnoses and now understood to be a unique subset of breast cancer as a whole with different characteristics than ductal breast cancer necessitating different treatments and inherently different risks, I would like to see a separate category under the breast cancer forum so that the most appropriate info is being disseminated for this specific subset of BC. Just a thought.
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Yes, same thing happened to me. First one they found was during my annual mammogram. My local surgeon didn’t call for a MRI. Mayo requested during my second opinion. They found 2 more cancerous spots. Went from a lumpectomy to a full mastectomy with chemo and radiation. I would insist on a MRI if I were you. Ultrasound and mammogram didn’t pick up either of those.
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1 Reaction@tamworth could I ask if this is the same area or on another breast? Thank goodness that you had the breast MRI.
I agree more research has to be done because my mammograms haven't shown anything. I first had ultrasounds done. That is where the first cancer was found. I had both ultrasound and MRI done last year and they were keeping their eye on an area. This year's MRI confirmed the cancer diagnosis. Needless to say I am a little freaked out now waiting for the surgery.
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4 ReactionsThanks marshgirl, I know that for a few years now I have had MRI's done yearly. My mammograms even this month did not show cancer. I guess we have to advocate for ourselves
now and ask to have certain tests done at least for our own sense of well being.
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2 ReactionsI agree @otas. I was diagnosed with ILC last August. I'm coming up to my one year mammogram but my dr is not considering a breast MRI, which is done as a matter of course at MD Anderson and at Mayo. I'm to have a mammogram and ultrasound. Ultrasound didn't even pick up my architectural distortion. Lobular cells lack the protein that makes ductal cells clump (and be felt) I found myself explaining this to a radiation oncologist last week. I wonder if for years they have approached lobular the same way they treat ductal. If they don't catch lobular early, I imagine you end up with stage 2 or 3. (and I could be wrong about this.) It's frustrating. We can't all go to MD Anderson or Mayo for appropriate treatment. I'm beginning to think that physicians simply don't have time to stay up on this.
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2 ReactionsHello Tamworth, I was diagnosed with ILC a couple of years ago, I had a lumpectomy, 5 sessions of radiotherapy & am now on Anastrozole. But to me it has become quite apparent that the approach/treatment to ILC & DLC seems to be the same. It seems there is not enough research done on LBC and therefore the treatment is the same
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1 ReactionAbsolutely!!! Great idea😊
I have just been diagnosed with ILC, and this is the first time on this site. I am 68 and am scheduled to have a
double mastectomy with reconstruction done at the same time.
I had never heard of this type of cancer and am grateful for these posts.
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4 ReactionsThanks for the info. I can get it locally.
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1 ReactionA PET scan is a pretty definitive scan for cancer, in recent years they have started tweaking the tracers to look for specific types of lesions.
You will typically get an IV with a tiny amount of radioactive tracer. Then you will have a rest period before the scan, then you will have the scan.
The specific tracer in a cerianna PET is designed to search for estrogen related lesions. This will give them a better picture of your cancer.
I have had quite a few PET scans and this is a painless scan that provides a giant benefit in cancer.
Can you get this scan locally where you are being treated or will you need to travel?
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