Newly Diagnosed ILC

Anonymous

Newly Diagnosed ILC

Anonymous

Oh my gosh, where do I begin.....

I went for my yearly mammogram as I have done yearly for the past 10 years on Dec 26.  I was called back on the 27th and told they needed more pictures.  At that time, the radiologist said something looks suspicious and called my doctor.  My doctor said I had better go see a surgeon..... SEE A SURGEON....YIKES.....I saw the surgeon on Dec 31...Happy New Year!!!

He said there was something there but to not be alarmed as 80% of nodules were benign.  He said I needed an ultrasound which I had on January 9th.  From there it has pretty much been a blur.  Jan 11 mamatome needle biopsy, January 15 diagnosed ILC left breast.    MRI on January 17 which showed another tumor, so I had a MRI guided biopsy on January 24.  Here I sit waiting for those results. I am scared because I have read that ILC is so tricky.   I JUST WANT THIS THING OUT OF ME......

I have been praying to god each and every day asking god to give me the strength and courage to face this beast.   

Anonymous

Hi Nancy,

You did good...you actually started a thread! You will get lots of help here.

I'll start...yes...ILC is tricky, and often, it's multi-focal. I had two tumors...both undetected on 5 consecutive years of Mammos. Get copies of all of your written reports, biopsies, ultra sounds, etc. This will help you manage your treatment and will enable you to educate yourself about your specific diagnosis.

Hang in there...

Anonymous

Nancy---this is the hardest time, when you don't have all the results yet and you don't know what is going to happen.  Once you get a plan in place, you will start to feel more in control of the situation. My mom had ILC with negative nodes; had a lumpectomy, radiation and tamoxifen and is now a survivor of over 21 years with no recurrence.  She is an inspiration to me and I hope can be for you as well.

Anonymous

I know I might be jumping the gun, but being type" a" I am trying to feel like I have some control in this situation.  Before another "possible tumor" showed up on the MRI, the next step was a lumpectomy and a sentinel node biopsy.  Now that there might be two tumors in different locations, do you think this is the same plan, or do you think a mastectomy would be done in place of the lump?  I know I will find out on Monday, but I am trying to prepare myself.

Thank you

wallycat

A blur is the best way to describe how you're feeling.

I joined the club in 2007 .

About the only words of wisdom I have is not to guess and second guess and anticipate...

it will be what it will be.  Once you have all the facts, you meet with your medical team and get their opinions added to what you feel is right in your gut.

Some gals post that the MRI under guessed their tumor size and some over-guessed.  They thought mine would be much smaller than it actually was.  I have a twin sister (fraternal) who had the same area of her same breast light up on the MRI and her biopsy was b-9...so my point is you cannot anticipate anything.  Wait to get the facts and then address them.  It sure saves a lot on anxiety and stress (boy I wish I could take my own advice sometimes!).

Best to you.

This board has been a god-send to me and to many.  I am sorry you've joined our ranks, but we welcome you!

trigeek

Hey Nancy,

. 

Mastectomy or lumpectomy.. this is such a personal decision ( if they leave it up to you)

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I can only share my personal experience:

5 years clear mammo, and ultrasound(yes I insisted on US every year not that it helped !!!)

This year the beast said 'BOOOO haha.. I had been hiding in here all the time'

So I chose to have bilateral mastectomy although my surgeon had offered lumpectomy for the affected breast. My mri was clean except the 1.8 cm(which ended up being 2.5 )tumor. However after the surgery we found out that the tumor was multifocal throughout the breast and 2 lymph nodes were +. The other breast was clear, went as collateral damage.

.

Do I miss my cute little ( A-) breasts -- YESSS I MISS THEM SOO MUCH.

Will I miss going into the mammogram machine again HELL NO !!

. 

Would I make the same decision if I knew what I know/feel today : YES FOR SURE.

.

But this is me, it is up to you to make an informed decision which I am hoping that will be aided by your doctors. 

.

When I was waiting for my surgery date I was tempted to chop both boobs off and call 911 to sew me up I was soo anxious ! Please do not do that and try to enjoy doing things that you might need to give a break from while you are recovering, go out.. do sports ( if you do)

. 

Hang in there !

Aylin

Anonymous

Nancy - I think that most multi-focal ILC situations - require a Mastectomy. But this is NOT TRUE - 100% of the time. Prepare yourself for this, but hope for less. And even if you do have to have a Mast. it's not the end of the world. I have had both breasts removed, I'm doing fine, I'm a changed person, but I'm a happy person. This whole experience has made me want to help others. You will accept your situation and you will face it, and you will fight it. I'm glad you found us. We're here for you 24/7...not only here at the ILC thread, but at the Illinois Girl thread as well...take a deep breath, and remember...this is just another chapter in your life. The next chapter will be better!

Sandyilc

Nancy- I had a similar experience, being diagnosed with ILC on my 2nd mammogram ever (I'm 42) in my left breast.  Went through ultrasound, needle core biopsy, MRI, and determined the best option for me was a bilateral mastectomy with expander reconstruction.  The margins were deep, which is where ilc is tricky, so a lumpectomy wouldn't have gotton it all.  A friend of mine is a pathologist and was happy I took this route too.  I'm kind of a "get the job done now" kind of person, I have two young children and don't want to have this effect them hopefully more than once. I was node negative but er/pr ++ and am considering an oopherectomy as my periods have not stopped (after four rounds of chemotherapy) and I'm not a big Tamoxifen fan.  My oncologist is very supportive of whatever I decide which is great, I've actually had a pretty positive breast cancer experience so far!  Best to you, I know that it can be scary, but take it one step at a time and rely on those who have been there and know their job...the most important thing is to get rid of the cancer however you can!

Sandy

IllinoisNancy

Hi NancyLA,

I'm IllinoisNancy and I know exactly what you're going through.  I found out I had ILC in Oct 06 and the world was a very scary place.  The women on the site have been wonderful and guided me through the treatment.  I am proud to say that I had a lumpectomy, 33 rads and taking Tamoxifen with no problems at all.  I feel great and everyone tells me that I've never looked better.  I am still scared everytime I get an x-ray, blood test or mammogram but somehow we all get through it.  I had the oncotypedx test which ruled out chemo.  I think you should look into that also.  I go to one of the top breast surgeons out of the Susan Komen Ctr in Peoria, IL and she didn't even entertain the idea of a masectomy.  She said that ILC is not treated any differently than IDC.  She said doctors used to tell their patients that but it's not true any longer.  I had MRI's on both breasts prior to surgery which showed that I didn't have any other tumors.  Good luck and keep checking in with all your BC sisters on this website.

Take care,

Nancy

paige-allyson

My ILC was detected on a routine mammogram and I was shocked to be called back, etc., etc. I went back and forth re: lumpectomy versus mastectomy. MRI settled it as there were 2 other areas. They turned out to be LCIS but the actual ILC tumor was bigger than it had appeared on both mammogram and mri- 3.2 versus 1.7.  Mine as you can see was node positive but a lot of women here have no nodes. I am fine with the mastectomy and no reconstruction choice. I'd wait and see how the other biopsy is. I had that option (guided biopsy) but didn't take it because like you I just wanted the thing out of me and couldn't/wouldn't play the waiting game anymore- it's the worst. Allyson

Anonymous

had my lumpectomy and sentinel node biopsy on wednesday.  surgery went  well. when i woke up i did not know where i was and i asked if i was in hawaii???  .... that must have been the morphine.... they asked if i was in pain and when i said yes within a minute the pain was gone....i asked if i could have some to go please ...sadly, they said no to the morphine but yes to some other pain meds.  i took them wed and yesterday but stopped today as i do not want to become a drug addict.....once i beat this cancer thing i do not want to end up at the betty ford clinic with brittany for prescription drug abuse.....      i have been pretty much sleeping for the past two days but wanted to let everyone that i am ok....well, that is a matter of opinion....:)  anyway, i will get the results of the lymph nodes and the tumors on tuesday and then hopefully all is well and then 6 week of radiation 5 days a week.    preliminary, the lymph nodes look clear...so please keep up the praying .......i think it is working.   thank you all for being there for me.  my words can never fully describe how it has meant the world to me.  

Anonymous

Nancy - You're doing really well! You "sound" good...glad everything went so smoothly. Now you can proceed to the next step and before you know it, you'll be a rad grad, and then spring is right around the corner! Fingers, toes, everything is crossed for NO POSITIVE NODES. Keep resting though, and take it easy. No snow shoveling! LOL 

Krogers

I was recently diagnosed am scheduled for a bi-lateral mastectomy + lat flap + expanders. Visited 2 different PS who recommended lat flap but am also worried about what the side effects are : numbness in back, losing range of motion. Anyone have more knowledge of this? Both people I know who have been through the bi-lat mast + expanders (only 1 w/lat flap) had IDC. Is there a different treatment for ILC? Is lat flap absolutely necessary?

Anonymous

My surgeon just called.......6 Lymph nodes tested ALL CLEAR.

2 Tumors removed...ALL CLEAN MARGINS..

Today is a GREAT DAY!!!!!!

Thank you all for your prayers.

Lynn12

That is wonderful news Nancy! It's such a great thing to have the cancer out of your body! YAY!

Anonymous

OH NANCY! That's F A B! I am so happy for you. You are dancing with NED (No Evidence of Disease)...NED's a great guy! LOL We ALL LOVE NED! Woo Hoo for You!

Krogers

Nancy...



What a fantastic story...so hopeful and gives me strength to hear soooo many success stories!



May you continue to HEAL...



Much love...



In Him,

nash

Yay, Nancy! Happy pathology dance!

Kroger--you were asking about lat flap. ILC girls have the same reconstruction options as the IDC girls. The surgery options are partially driven by your body type--if you're very thin, usually lat flap and implants are the only options available.  I'd suggest posting on the Breast Reconstruction board to get input on lat flap + expanders.