Just diagnosed with ILC

Racy

Momine, I may be wrong but I didn't think cysts could become cancerous.



My scans revealed lots of cysts for years before my BC diagnosis and noone ever suggested this was a problem except that they obscured the view of my breasts.

Momine

Racy, as far as I know cysts can indeed develop into cancer. Friend of mine had to have fluid drawn from her cysts annually and eventually they found cancerous cells in some of that fluid. However, she had a family history and I am sure plenty of cysts never become cancerous. But the docs certainly wanted to check mine.

Galsal

Thanks.  I'm seeing the Moffitt Cancer Center here in town for a second opinion overall this Tuesday morning.

beth1965

Family Doctor says he has never seen my type of cancer in over 40 years. I did not think ILC to be that rare.

Racy

Beth, I think it's about 15% and rising. My BS said 25% of his patients have it.



It is supposedly more common in older patients. I was 48 and I am guessing you are 46.



Hopefully you will get a specialist with knowledge of this cancer. Let us know how you get on.

suzieq60

Beth - I was 57 at diagnosis and was even rarer being HER2+ve and hormone receptive - very rare indeed. What is your status regarding HER2 etc?

beth1965

Maybe the lower % of ILC is why my doc never saw this before. Yes i am 46

I am not sure yet about my status. All i know is that BS/Oncologist said from tests i have ILC with 9cm tumor and just did MRI and they said take out all nodes. I am have BMX + NODES ON 1 SIDE FEB.2ND.  I AM thinkimg they will be able to tell me more soon.

I am not sure what to ask to get those results- HER2 ETC... as i am still figuring out what all those things are. I am DX 2 weeks now and still learning.

mary625

Beth--it takes a little longer to get the results on hormone receptors back from pathology, but if you were diagnosed two weeks ago, they should have them by now unless they do things differently where you are.  I would suggest calling and asking them if you are ER/PR (ER=estrogen and PR=progesterone) positive or negative and if you are HER2neu (pronounced hair two new, I think) negative or positive.  Being positive on ER and PR is a good thing because that means that you may be eligible for hormonal therapy after surgery and other treatments.  That will help with preventing recurrence.  I think I read somewhere that most ILC is hormone positive, but don't quote me on that.  HER2neu negative is the best result.  HER2neu positive is a more aggressive type and requires an additional drug called Herceptin.  Getting the call that I was ER+, PR+ and HER2neu negative was the best news possible after the diagnosis.  There are also some other results from the biopsy that you should get as well.  I usually get all of my test results in writing and am trying to save them in a file, although I lost quite a few by mistakenly giving them to the MRI technician while under the influence of valium and nerves!

suedustin

Am new-had a lumpectomy a week ago.  Stage I--  waiting for the final path report.  Supposed to take a pill and not radiation.  Swollen breast but no pain.  

Racy

Hi suedustin and welcome to this good place. Radiation is standard with lumpectomy for invasive breast cancer. Did you refuse radiation or was your diagnosis Lobular Carcinoma In Situ (pre-invasive cells)?



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