Glad to find my group

Shary--we are here for you. I also had Bilateral Mastectomy. No recon yet. If you have any questions about the surgery, feel free to ask us here or go into the surgery forum here. Sometimes though the threads are so long for the groups having surgery in a certain month, so if you want to ask a specific question, come here. Most people with ILC seem to have either uni or bilateral mastectomy. As you reference above, this sneaky type of cancer just has to go.



I also had no family history and was 49 at diagnosis. Just turned 51 today.

just a note of inspiration-----my mom had ILC many years ago; had lumpectomy, radiation and tamoxifen; she's a survivor of over 25 years with no recurrence!

Anne

Welcome Shary and Happy birthday Mary...

Shary go to the top of screen and click on "my profile" then go to your diagnosis nd that is how you put your stats in. I travelled for just an hour to my breast surgeon and plastic surgeon. There were several times during my chemo that I wished I didnt have to go the hour for my tissue expander fills. I did radiation and chemo in my town. I would not have made that trip for radiation or chemo. Is there anywhere closer that has oncology? Hopefully you will only need surgery. Healing hugs to you.

Hi Shary,  Welcome.  You seem to be making great progress in making your treatment plans and lining up your doctors.  That is a very long drive for you.  Hopefully you will have lots of support and a stand-by driver, too.  Keep us informed.  Best of luck with all the BC stuff you are living with right now.  We are here to help.  Warm Hugs,  G.

Welcome to the ILC's, Shary. Sorry you are joining us, but happy we are here together.

Gavin is adorable! 

Hi Shary, and welcome! I was DXed 2 years ago, just before turning 48. I also opted for bilateral and I have no regrets. My surgeon asked me to hold off on recon for 2 years. In retrospect, I am glad I did. It has given me time to think it over, research etc.

The year of treatment was not exactly the best time ever or anything, but nor was it anywhere near as bad as I imagined it would be. I am a year and a little bit past active treatment, and I am really OK as well as probably in the best shape I have ever been in.

Hi all
Just curious of those who have made it through surgery, reconstruction, and, Chemo.

What were your greatest milestones? Was it getting your pathology report back after surgery, was it awaking after surgery, was it a time during treatment or recontruction, etc.?

The pleomorphic part scares the bejezzus out of me.  My cancer had been growing in my breast and mammo and ultra did not identify a year ago.  Then I almost had a lumpectomy which would have entirely missed the nasty pleomorphic ILC.  

The bone scan before surgery found something unusual on my skull.  Docs checked out the scans and decided to watch it.  THAT too scares me.  Hard not to go to what iffs.

But my biggest concern is the not being prescribed chemo.  Maybe that was because no cancer was found in my lymph nodes.

Radiation starts August 20 with 25 treatments over five weeks.  Regrettably, my plan requires me to go to radiation cancer center that is an hour drive each way.  And I am the breadwinner with my own individual business.  No work, no income.  No income, no insurance.  No insurance, no treatment.  So, I really do have to work long days in order to get my radiation as well as my income.  Thankfully, I love my work.

How do you all get through this?

HollyBoo,

I also did not have Chemo and my MO explained it was because I did not have the ILC in my lymph nodes. The radiation was done on my lymph nodes in my underarm region for protective reasons, just in case,, but they (the MO and the RO) felt that would be sufficient with my stage and grade of cancer. ILC is a particularly stealthy and incidious form of BC and my doctors are particulary cautious in my treatment and have warned me that I, too, need to be vigilant and very proactive in my own future treatment and follow up now that my initial treatment is finished.

I just had my first 3 mo. follow-up checkup (after the initial 1 mo.) and my oncologist said I was doing excellent so that made me feel really good. I am having some issues with the Arimidex hormone therapy I am taking but I will not take any chances and NOT take it....way too important to keep recurrence at bay.

I am glad to be in a ILC forum as I believe we all understand our peculiar demon a little better than others do...I was a little dismayed when I learned more about my kind of breast cancer and it's personality! Good to be with you all...looking forward to lots of fun conversations together.

God Bless Everybody in this "Journey We Did Not Choose".

And, Holly, PS: We get through this one day at a time...with a little help from each other....you will make it and we are here for you!