Searching for people with Invasive Lobular BC

I had ILC , I had two areas biopsied for calcifications and neither had ILC but another area (called incidental finding) was ILC - 3.8mm- I did have oncotype testing - score of 1.

Because of its sneakiness- contralateral condition I had a bilateral masectomy. ILC sucks

take care to all-

chocolate

Hey, don't forget us really special HER+ve lobular girls - there's not many of us

Sheila and Mom,

Thank you for the kindness and sharing your exeriences with me. It is all so new to me. As for people I can talk to I have people that have said "if there is anything they could do to let them know". But, what can they really do? How can I talk to people, I somewhat know, about this, when they haven't been through it themselves. I appreciate all the offers, but I don't know what to tell them I need. I am just waiting for answers, oh, and my insurance refused the MRI.

I have my MD apt Thursday and a apt with a surgeon on the 5th of May. How can I be sure I have the right MD or Surgeon for our type of cancer. I know the surgeon is supposed to be a good breast surgeon...anything else I should be looking for?

I feel like I need a vacation from all this, but even if I went on vaca this would still be with me.

Robin

Dear Robin, hang in. The beginning of this epic is so hard, but as these wonderful women have written, once you have a plan, things will fall into place. As someone said to me, 'this will be a crappy year and then you will move on.'

I have also heard that there are some advantages to ILC, such as that it can be slower growing. Everyone is different. Go visit several oncs and choose the one with the most experience, not necessarily the nicest,ironically.

Incidentally, an MRI is key w lobular. I had two tumors, the second one picked up only on the MRI.



We are here for you,

Shari

I think, looking back, the main thing I would ask people is not to talk about cancer unless I do first, and then not to presume anything or give advice.  For example, people who say, you'll be fine, or think positive, or tell tales of someone they knew who died from cancer, are not helpful and cause us much anxiety.  They need to listen and empathise when we take the lead and talk about our situation.  Otherwise I'd thank them for their concern and let them know they can help with babysitting or running errands or taking us to the cancer centre if they are the ones we'd choose to do those things. Then they might want to go for a shopping trip, movie, night out, picnic, just normal things.  I loved talking to people in a normal way, having a laugh, keeping busy in those early days.  It helped me forget for a while.

Robin, you might get answers on the surgery section of the forum. Try reading through a few threads as I expect most americans are in bed now.  Being in Australia I can't answer those questions as it's different here.

Some doctors know how to jump through the hoops better than others when requesting insurance authorization.  Two internists were unable to get MRI authorization for me (I changed doctors along the way), my GYN swore she could get it approved but I see her out of my network and they refused.  Finally the breast surgeon whom I had seen the year prior for a biopsy got it through.  I don't know if the information was simply presented in a different way or because it was ordered by a breast specialist rather than an internist or ???  So, I think the paperwork has to be filled out just so and you need to find a doctor who is determined as you are to get the MRI.

Hi Robin. I'm in Canada and under public health insurance, MRI's are usually provided only on an as need basis and not for fishing expeditions.

My surgeon though ordered an MRI for me "in order to plan the surgery". I assumed it was because I had ILC and was having a lumpectomy and he wanted more information in order to ensure clear margins (something more difficult to do with ILC). He did tell me that he consulted with the radiologist personally to better understand the tumour position. We also knew from a fine needle biospy that I had at least one positive lymph node and would require node dissection so that might be a part of the reason.

I had a chest MRI so both breasts were included. The MRI found several hot spots, including pulmonory nodules, but though scary to me, nothing seemed to be of concern to anyone except for an "incidental" finding of an mediastinal cyst which required a follow up CT but after I had surgery. As they had to do the chest CT anyway they also included the abdomen which led to more "incidental" findings of no clinical significance such as, a malrotated kidney.

So now I quite understand why here in Canada (or in British Columbia at least),  I only have annual mammograms for followup testing for breast cancer and not MRIs as is common some parts of the USA. Not that more tests are not provided as required...I had an ultrasound on my good breast after my first annual mammo check.

Hi Robin. I'm in Vancouver too and also had a lumpectomy. This was done at the time because core biopsy showed non invasive ductal BC. Turned out to be ILC and I needed to go back for sentinel node biopsy. Had I known it was ILC, I still don't think I would have had mastectomy as my cancer was small. I am a bit nervous that mammogram could miss this cancer if it recurs since it seems many ladies in the U.S. Get MRIs as follow up. Had an MRI last year to look closer at a small lesion which was biopsied and found benign. It did lead to some follow up tests to look closer at my liver as I have a cyst on my liver as well. Once you have had BC there are always lots of follow up tests. I'm sorry this is happening to you. I was totally freaking out when I was diagnosed but was lucky to have a best friend who had been through treatment in 2002. I think she saved me from having a total breakdown. Try to take it one step at a time. You will get through this.

Dear Robin, I am just feeling for you since I was where you are now, 9 months ago. I. Can also see that you're not sleeping much. I live in israel which is about ten hrs ahead of you, when most western hemisphere residents are asleep, so feel free to PM me, too.



I had a mx of the left breast only since there were two tumors, remote from each other which would have left a breast with two large holes, difficult to reconstruct. At the time of dx, I was so overwhelmed I opted against immediate reconstruction. Though I don't love being assymetrical, I've gotten used to the prosthesis and even have some pretty mastectomy bras. Not a soul can tell the difference when i am dressed. I am now researching reconstruction options and am glad I can do this in a calmer, more orderly way. I learned that I am a person who can't do a million things well at once and I needed to tackle this cancer sequentially. First deal with whatever I had to do to fight the disease and then reconstruction would be my reward in phase 2. This suited my personality. Might not be good for everyone as you have to be prepared to go home from mx unreconstructed.



Re the MRI, robin, this is where you might want to try and get people to help you. ILC patients must have them and your ins co should back down if they get the right letter or phone call. You may want to call some BC advocacy groups to ask advice on this one or ask a friend to help you call them. Last option is to beg, borrow or steal the funds and pay for the test privately (if the fight takes too long) and then fight for reimbursement afterwards. Your job now is to save your life and get the best possible care for yourself. There is a thread on this site about ins issues which might be helpful. Also agree with Loreen that you need to get your pcp to refer you to an onc. Seems awful that you need to fight when you are feeling so weak and vulnerable, but perhaps this is where friends and employers can step in to help.



Wishing you hugs and best wishes, shari

Sheri,

Really thank you, you are very kind in your statements.

Ana girl,

Did you have a choice in lumpectomy or BMX?

Ok, I know a bit more. A very nice RN coordinator at Good Samaritan's cancer care unit (this is a place newly opened in the last 2 years) she called me yesterday. She was of the same opinionthat we all are MRI for lobular is very important. She found out that my pcp was referring me to a MD Daniels an oncologist and before I had an apt with this doc she sent over an order for her to sign for an MRI. Yesterday I had an apt with my pcp and I requested another surgeon, someone closer to me in Puyallup. The next day (today) the coordinator called me. She had already gotten the ok for the MRI from the insurance co and made the apt for me with imaging and made the surgeon apt for me for this next week rather than two weeks out. This lady (Donna Banks) is on the ball and a mover and shaker. She called me today while I was out visiting my horse, so she heard all the animals in the back ground. She said she had never heard barn animals in the back ground before dogs, kids, cats...but never sheep and goats. I through that in, in the hopes of making everyone smile ; ).

As for the technicalities of my cancer I will try to fill in a few gaps.

I am est + and Pogest + and I am Her2 -. I guess They will know stage etc after surgery.

Thank you all.

Robin

Angie,

I love my little (not so little) girl. She has just turned 5 on the 15th of Apr the same day I got the path report. She is a beautiful sorrel and white registered American paint and she sports a medicine hat and fine blue eyes. I try to see her daily and spend time brushing, walking, exercising and spoiling her. She lives at my friends property where she is being boarded, which conveniently happens to be about a 1/4 mile from my own home (I have about 2 acres she has 10). She has sheep (wool) and a few angora goats along with her 2 horses and she boards 2, one of which is mine. Her official horse name is "Crazy Blue Daisy" but her barn name is Calico sometimes I call her Cali. I plan to bring her to my house for Easter Sunday to "mow" the lawn and get lots of attention from my family. She loves her horse treats but not peppermint, she spits that out, LOL.

Robin

In 1992 I had my first child and decided not to breast feed. I was given a drug called Parlodel to dry up my breast milk. Has anyone on this board diagnosed with ILC/LCIS taken this drug?

When I had my second child in 1996 I was expecting the same drug. The nurse said Parlodel was no longer given due to health risks. I never asked what the risks were. I wonder if it was for breat cancer.

Btw, my signature is incorrect, my oncotype score was 22. Does anyone know how to change the signature?

Hello ladies, I think I'll jump in this thread 

Having had to go back for revision of margins (no test had detected a second tumour on biopsy of the first one), the pathology reports says IDC with ILC features...would anyone know what they mean ?

Sheila:  You are so very right about NORMAL, exactly the way I feel

To the Canadian Sisters:  I live in Qc and I am insisting on having both a MRI and a mammogram rotating yearly.  There are new guidelines from the radiologists about BC detection using MRIs.

Thnaks for reading me:)