Where do I begin ??

ganzgirl2010

In march of 2013 I was dx'd with a variant LCIS..my left breast was loaded with it, pretty much covered all of it. I had LX for 7cm tumor, no treatment after..absolutely nothing. Then, this past July I was dx'd with Invasive lobular cancer..the first place that I was going to said my tumor was 5cm. I went to a well known cancer center here in Boston for a second opinion. They re examined my tissue from the first hospital and said the tumor was .15cm's. I questioned my BS and she confirmed it was 5cm's. I had a bmx in August, the pathologist now said it was .15cm's. Why do they keep changing there minds ?? My mo said I don't need chemo or rads (yayy) BUT Im scared to death that they are missing something because of the confusion about the size. I cant help it but I find myself constantly worrying that the aren't doing enough and about mets. My back is killing me and I cant help but think..did it spread to my back ?? ILC is not as common as IDC so there isn't much info about it online. Im not scheduled to see my mo again until February. I just feel like Im being blown off..cut my boobs off and sent me on my way. Any advice or suggestions would be greatly appreciated. Thanks ladies

P.S. Oh I forgot to mention they found LCIS in my right breast as well during my bmx

dlb823

ganzgirl, do you have actual copies of your pathology report(s)?  That's where I would start.  I would want to see it in writing, then look at the actual report(s) with your breast surgeon and/or second opinion docs, to clear up whatever the misunderstanding might be if it still concerns you -- although if you've had a BMX and no chemo was recommended, it sounds like you're in the clear now. 

As far as the back pain, the rule of thumb is to report any pain that lasts more than 3 weeks.  So if you haven't been moving furniture or doing something else out of the ordinary that could have injured your back... and if the pain persists for more than 3 weeks without improving... then you need to report it to your onco and ask about having a PET or CT scan to see what's causing it.  Chances are you don't have mets, but the fear and worry can be debilitating, so getting it checked out is the prudent thing to do to ease your mind and move forward.   (((Hugs)))   Deanna

bevin

Ganzgirl, I agree with Deanna. Request a copy of the pathology report. You can also request copies of all of your medical records, the surgical interoperative report, the doctors notes, copies of all scans and radiologist reports from any of your exams. I always keep copies of everything. Some offices charge a nominal .10 cent per page, others don't. It depends on the hospital and office.  Just a suggestion to get full copies.

Good luck. And I echo, if you're uncomfortable with any information, or lack there of, remember the doctors work for you. You pay their salary and you deserve to feel like your questions have been answered.

Let us know how you get on.