ILC - JUST GOT THE NEWS VIA TELEPHONE

I had 2 tumors the biopsy said ILC. Then after surgery and detailed pathology 1 was IDC.

I am sorry you are at the worst time the not knowing and before treatment. If you need anti anxiety meds you should ask for them. They help me get through the first couple months. After 4 months I was moving on.

I hope you get better news after MRI and more data.

This is my first post.  I have been reading others for awhile.

I just got the ILC diagnosis last week.  Today I had the MRI and have met with the breast surgeon.  Next week, I am already meeting with the oncologist for a new patient visit.

It is so amazing how life can change so quickly.  My mother also passed away from breast cancer and I have always had this fear in my heart and now it is real.  I truly understand your fear, the worry, and the many questions.  I don't have many answers as I am new to this, too.  But I can offer my support through this forum.  

It looks like we are beginning this journey at the same time.  I wish you the best in the coming week.  Are you in Texas?

Welcome NY2TXbaby and one4bemi

You have joined a group of kind and knowledgeable individuals here at BCO.  

We can understand that the information and decision making process can be daunting.

The main here does have lots of reliable and easy to understand information including:

Getting your pathology report

Treatment for ILC (which has information on both local and systematic treatment)

Questions to ask your doctor about your diagnosis. 

Keep us posted!

The mods

NY2TX, take a deep breath, and know that you have come to a wonderful place for advice and support!   

I was first diagnosed with ILC when I was 49.    It is always a shock to hear the word 'cancer', but you will get through this, and life WILL return to normal.

My Mom, too, had breast cancer, in 1976, when she was 68.     Not nearly as much was known then, but she lived a long full life,  - she passed away a month short of her 99th birthday!

Take it one day at a time right now.  It is a lot to deal with, but you will find the way, and we are here to help!

Hugs (from another 'kitty person'  

Hi new ILC ladies!

I, too, was diagnosed with ILC a little over a year ago.  Here is what I have learned along the way:

1. ILC is slow to grow
2. ILC is a sneaky sucker and rarely shows up on routine mammograms
3. ILC typically does not present as a round lump; it is more of a thickness
4. Don't be surprised if additional tumors show up in the final surgical path report
5. Cancer sucks.....

I am learning that there are many phases to cancer.  I thought the early tests, waiting for results, and final diagnosis were the worse....anything after that is a cake walk.  To a degree that is correct.  Once you have a treatment plan in place and moving along, things in general are a lot easier to deal with.  But what I was not prepared for and I don't see anyone talk about is really the hardest part of all ..... the mental part of cancer (the reason for #5).

The initial treatment is complete.  Surgery is done.  Chemo and/or radiation is over.  Reconstruction finished.  Now it's just the day to day maintenance to keep the cancer from coming back.  And every time you have an unexplained rash, pain, cough, etc, you wonder what's up.  I've been instructed to act like a paranoid old women and contact my medical team about every little thing.  UGH!  This from a woman who rarely gets sick and only goes to the doctor for the annual well-woman check up.  Hate it!  And I hate that cancer is always on my mind.  My oncologist says it takes time....for some years.

I have a friend at work - 7 years with no evidence of recurrence and cancer is still in the back of her mind.....every day.

Bottom line - take care of you...ALL of you!  The physical AND the mental.  Go to counseling if you need to, take medication if necessary.  Can you beat this?  Most definitely!  Is it fun?  NO!  But.....look for the bright side of cancer.  Many women come out the other side with stronger relationships, healthier lifestyles, perkier boobs, new friendships, and a new sense of self.  You got this! 

Don't hesitate to PM me if you have specific questions.  I will answer where I can.

Thank you for the encouragement and also for expressing one of my biggest concerns, that this thing will always be here looking over my shoulder.  I am still grieving my life as a healthy person.  Saw medical oncologist today and such a downer though she was very kind.  Now I have appointments to see radiology oncology and plastics before upcoming surgery.

These last few days have been so emotional.  I, too, cry several times each day.  Just when I think I am accepting the diagnosis and the plan, I fall apart.

By the way, there seem to be a few ILC ladies in Texas.  I am in central Texas also.

ny2tx.  I just Want to give you some encouragement here.  I to had invasive lobular ten years ago with a hockey puck size tumor attached to my chest wall and also they found more smaller tumors during surgery. I figure I had this cancer at least ten years before diagnosis. Surprisingly I am still here to talk about it . I learned as much as I could and try to eat better and excercise. I do think these things do make a small  difference. 

One thing I did learn; I really have slowed down to smell the roses. I try to not get stressed and even leave my clean freak house messier these days. I will opt out of floor scrubbing to enjoy a afternoon with the extended fam. I do take one day at a time and although I think of cancer often I don't let it rob me of my life anymore. Maybe tomorrow it may come back or not. One thing for sure is that I have all these wonderful BCO girls to help get thru. You can to. 

When you go to doc don't worry if you have a silly question. Ask and push for answers. Take a friend with you because you will be to stressed to remember any of the conversations. Keep posting your concerns as we are a huge family with loving arms that have been there and done that before.  

what a great idea tell the friend with a big mouth so everyone will know!

Hello to all the newbies sorry you have to join this "elite" club. I also have ILC..my stats are below. I was (and sometimes still ) a mess. I had myself buried when I was dx'd this past July. But..having had the surgery very recently and now Im at the the next stage of treatment, the fun part..recon, which involves getting bi weekly fills of saline until my skin is stretched to the size I want to be. Then exchange time

It does get better ladies I PROMISE. Ask anyone on the august sisters thread, I was absolutely miserable from the pain and anxiety but I finally turned the corner over the last 5 or 6 days ! And it will all work out for you too ! Trying to stay positive is the best advice I can give. Im not saying it's easy. The surgical pathology report is what will decide your next step as far as treatment. As someone above said ILC is  "sneaky" cancer, it rarely shows up on mammo or u/s and sometimes it doesnt even show up on mri's ! ILC forms in a line not a lump like IDC. Think about a line you would draw with a pencil..thats what ILC looks like when it forma. ILC represents only 10% of BC cases so there isn't a whole lot of info on it.

Again..so sorry you find yourself here but you are in good hands ! This site has been a life saver for me thru this journey

I sweetie, cry and get that out it is only human for us, we all here know what your feeling, been there, but come here often we are here for you,"you can do this", once all is place it does get better, and please take it from a 20 yr Survivor(Praise GOD) Hope is what got me thru along with my family support and my Faith, I was only 42 yrs old and getting ready to marry, my 2nd husband I pryed for, and while making wedding plans. You can do this, we are here for you. msphil(idc, stage2, 0/3 nodes, L mast, chemo and rads, and 5 yrs on tamoxifen)chemo: adriamycin, cytoxin, 5 fu, rdas 7 wks, 5 days a wk

Dear NY2TX,

What is the definition of getting through look like to you?  Imagine that.  Imagine yourself as the person who is getting through it.  If you can imagine it, you can do it.  It's a type of meditation.