Just diagnosed with ILC

michele--no real words of wisdom, but some of hope.  My mom had ILC many years ago (lumpectomy, radiation and tamoxifen) and is now a survivor of over 22 years without a recurrence! I have LCIS and just finished my 5 years of tamox and am doing well.

Anne

It would have helped me in the early process as I remember it, 

1.    to have a mentor, someone who had been there

2.    to accept that there is a lot about breast cancer that the professionals don't know.  Get second/third opinions, from the best doctors you can, and then trust yourself to be able to judge what's best for you

3.    to accept that it takes time to gather the information, and that the picture changes as the information comes in

4.    to not be afraid of emotions,  the roller coaster ride is amazing

5.    to find people who understand to talk to, and talk a lot, or keep a journal, or both

6.    to understand that my mind will distort or forget the facts.   Record conversations with the doctors and keep copies of every document 

7.    to ask questions.  Write down questions ahead of time, no question is too trivial or dumb!  If you don't understand the answer, ask it again!

8.    to put my needs first.  This is not selfish.

TIA - Hang in there! I agree with the others... the more you know the better you will feel because you will have a game plan. Best wishes to you...keep us posted.

Welcome to the boards, Kathy. Wow-- it's really rare to have a false MRI! Especially on a big tumor. How did you end up getting diagnosed?

One thing that really helped me through chemo was posting on the "Chemotherapy--Before, During and After" board, on the thread for women who were starting chemo the same time I was. You might want to check and see if there's been a thread started for women starting chemo in February '09 yet. 

Removing the other breast is a personal decision--the negative MRI is a bit disconcerting and I would think that would weigh into your decision heavily. 

Kathy,

Did your final pathology after surgery indicate your tumor was just lobular or mixed ductal and lobular same as biopsy.  The reason I ask is because path from biopsy before surgery indicated invasive ductal and pathology after surgery indicated  infiltrating mammary carcinoma with ductal and lobular features (both ductal and lobular).  They also didn 't think I had positve nodes before surgery due to imaging done but after surgery I had one positive node.  I think lobular in the nodes is harder to detect in imaging and I suspect my node was lobular, although path was only done on tumor in breast.  I had a bi-lateral because I agree that lobular is sneaky and my good breast ended up with atypical lobular hyperplasia (ALH) so it probably would have cooked up the same thing since I had been diagnosed with ALH on my cancer breast the year before.  I had been beating myself up because I had a clear mamogram and ultrasound the year before when diagnosed with ALH but did not have an MRI and then I was diagnosed a year later.  I thought that an MRI would have picked it up earlier but maybe not.  Nexty year mammogram was still clear and ultrasound picked it up after much searching.  Current imaging does not work well at all on dense breasts and for lobular.  It gives me peace of mind knowing I don't have to worry about the other breast. 

Hi,

I was just diagnosed with ILC. I am 43. I was very shocked as only microcalcifications showed up in mammography, the stereotactic biopsy showed that the calcifications were benign, but the surgeon wanted to remove the calcifications to be safe for the possibility of future DCIS. Then, whoa! I was diagnosed with ILC. And, to make matters worse, the more I read up on it and talk with the doctors the more confusing it gets. They seem stuck in this path of Lumptectomy -> Radiation -> Estrogen blocker. Whenever I bring up masectomy, or testing the gene CDH1, I get a weird backlash as though I have spoken words of, well, blasphemy. I kid you not. To make matters worse, I feel like I want to punch someone and cry at the same time. I am getting a PhD and graduated from Ivy League universities and my questions appear to evoke a sense of "Geez, why would you ever mention masectomy. Just play nice with the path we are talking about." When I ask about survival rates, they tell me it is equivalent with masectomy versus radiation; yet, they suggest not getting masectomy. When I tell them I do not mind the thought of it if it saves my life, one doctor said, "I have never had a single woman tell me she wouldn't mind that option." "Why?" I inquire. "Because of body image issues." When I ask if women crumple and kill themselves or something from their body image post masectomy, the response is, "Why would you ever want to have a masectomy?" "To  save my life or stop it from invading my other breast or ovaries or stomach."  

I'm very tired as there was a lumpectomy right before the diagnosis and am still recovering. The more I read, the angrier I get because I realize my questions are relevant. Has anyone else had this experience? Could you please recommend a good surgical and medical oncologist in the Southern California region who can speak with patients in a manner that is at least respectfully informative? The other day the medical oncologist looked at me when I questioned about the efficacy of radition therapy and said, "Don't worry, you will not become radioactive. You will be able to be around other people." It made me want to scream, to cry, to wonder how in the hell anyone survives this from sheer and simple lack of dignity. They reassure me I am at one of the top breast cancer centers. Someone, could you please let me know valid information about ILC. Sources, etc... The path you followed? I am waiting for an MRI scan next week, then a sentinel lymphnoid biopsy to see if it has spread. Right now they have staged me at 1a, but they do not know what is going to happen.

Thank you in advance for the simple idea of sharing this with others who know what it is like to go through this and any suggestions on having at least an adult conversation about my own body.

Cali:  I saw 4 different docs in my pre-surgery consultations.  Two think I should have a bi-lateral mastectomy and 2 think lumpectomy.  Given my history (see post directly above this one) I'm opting for bi-later mastectomy without reconstruction.  However, they all agreed I need radiation, which is one reason I'm putting off reconstruction until a later time.  From what I've been told and read, radiation is a no-brainer with positive nodes.  My docs aren't giving me a choice.  Talk to your main oncologist again, or ask to speak with a radiation oncologist.