ILC Tumor Size

FLpinwari --- you are one of the lucky ones. Congrats to you for having all the testing needed. You should be the standard in care, not what we got.

Kelly - good for you for pushing the envelope and taking the jump. Sounds like you were trusting your intuition and it served you well.

I'm not bitter. God has given me a something here and I'm just figuring it all out which might take some time but I'm sure I'll get real value out of it. 

I worry about the young women coming our way. I understand the number of younger women, in early child bearing years, being diagnosed is increasing exponentially. How do we get upstream to put the word out??

Hi,

My ILC was only 1 cm, clean nodes, oncotypedx was 9 so I was told no chemo.  I had 34 radiation and 4 years of tamoxifen before it reappeared in the same breast, in the same area but only this time it showed two tiny areas on the skin.  This threw me into Stage III, 20 weeks of chemo and a BLMX.  I don't understand how chemo was of no value to me in 2006 yet when the exact same kind comes back in the exact same area....it required chemo.  As a matter of fact I had to have the chemo before my surgery.  Cancer drives me crazy and I really don't think anyone understands it.  None of us are safe but we must live our lifes as if we are.  I can't tell you how many times I look at my chest skin and wonder when it will pop up again.  I'm not trying to scare you....I'm just saying that sometimes the small tumors are worse then the big ones.

Nancy

Hi CML,

My BS pushed the SNB and Lumpectomy since mine was so small.  You couldn't even tell I had surgery 6 months after it was over.  The little bit that showed up on the skin this time looked like the tiniest pink misquito bites.  I never dreamed it was ILC again.  They removed as much skin as they could off of the left side and filled it in with my back skin which is so much lighter and healthier than my old skin.  I have spent way too much time in the sun and have damaged the breast skin on both sides. My BS said that sun doesn't hurt or cause BC so I can continue to be outdoors.  At this point after going through a lumpectomy, 34 rads, 4 years of tamoxifen, 20 weeks of dose dense chemo, a double mastectomy and now 5 years of Armidex.....I am ready to do anything and give up anything just to be healthy. Sorry this went on too long...it makes me feel better to talk about with you ladies who are the only ones that understand:)

Take care,

Nancy

Thanks for your story Toomuch  - I'm so sorry you had a hunch you should take action but no one backed you up. That's worse than my case. I was pulled into the group think and it didn't really dawn on me that these experts could be wrong. They totally spoofed me and themselves. I've brought forgiveness into my life lately so I can move on. They will never acknowledge the harm they did to me but at least I know "they know."  

I had 3 grossly cancerous lymph nodes (2cm largest) and angio lymphatic invasion which is why I"m having chemo -- they're giving Chemo to me for the blood and lymphatic system invasion and not the ILC. They've moved on to worry about mets.

I conferred with a psychic recently (someone with a proven track record) who told me I would have a recurrence in my abdominal area/focus on ovaries but not to worry that it too would go into remission. Funny thing is when I heard I had angiolymphatic invasion and ILC is known to head for the bones and peritoneum first, I felt a cold shiver when the psychic said abdominal area. She didn't have any clue what type of cancer I have.  

I don't listen to the Doctors as much anymore...I now trust my instincts/intuition and learn as much as possible about downstream risks and then make plans of action. My friend was also told she didn't need an ooph/hysterectomy but she didn't trust them and found a Doctor who would perform the ooph/hysterectomy for her. She went on her gut feeling.  She told me recently she has no regrets about it. 

 Hugs,

Kat 

I was 37 when I was diagnosed. I had had enlarged lymph nodes on that side 4 years earlier but BS didn't want to operate, said it was too mobile & had gotten smaller (after I had had the premed & was all set to go). Hubby found lump 4 years later in my breast. Lumpectomy showed multifocal ILC in extensive LCIS(13x35mm) with lymphovascular invasion. Mastectomy followed showing further area of ILC & IDC 4.5 x 3.5cm.One of the lymph nodes was 3cm full of cancer along with 3 other smaller ones.

The scary thing is mammogram & US were ambiguous. Mammo didn't show & US had only a small hypoechoic area. Also biopsy came back benign. I'm so glad I went ahead with lumpectomy anyway.

I have kind of lost faith in these tests now. Now my TM's are climbing & nothing shows on scans (X-ray, US,bone scan, MRI & CT) but that doesn't give me peace of mind after the last episode!

I've decided to start a new regime just in case- Zoladex & letrozle (having already done AC, radiation & tamoxifen first time around). Onc says I will prob be on these indefinitely. I would kind of like to have my remaining breast off too (not really, I would really prefer 2 healthy breasts!) b/c I don't trust the scans to diagnose a new BC in it, but I would have to pay for it myself...Can't really afford that!

I would love to just 'move on' too, but at the mo it's v hard to put it behind me... 

I would also like to know why this type of cancer cannot be diagnosed before it is so big. I have had a mammogram every year, No family history of cancer and yet here I am. I had a mammogram May 2010, had a regular yearly exam in Feb and the doctor examined the breast. I mentioned that one side felt thicker but he couldn't feel any difference. Then a few weeks later nipple started retracting and skin pulling. June 6 was diagnosed with breast cancer and the tumor was 3cm x 5cm. Because I am only a B cup BS decided I should start with chemo, followed by mastectomy, radiation then 5 yrs of pill. Have had 1 chemo treatment and that resulted in an allergic reaction. I have another chemo treatment on Thursday with ardimycin and cytoxan. Praying this treatment goes better.

Dear KT:

 It strikes me that you were so young at diagnosis.  The connecting theme among most of us with lobular is that the ILC tumors do not show up on regular mammography.  This appears to be especially true for younger women.  I suspect that if I had had digital mammography for my screenings, my tumor would have been found a year or two earlier.  I think we all have to advocate for the newer technologies for ALL women, especially those younger than 50.  Best wishes to you.

Hi, I was diagnosed last year at 41. The biopsy said ductal carcinoma, I opted for a bilat mx  and reconstruc, just had the feeling it was best. When the pathology came back it showed both ductal and lobular. The lobular was hiding in back of the ductal and never showed up on mammo ultra or the biopsy. Glad i followed my gut and did both, so i completley understand what your saying about following your gut!! good luc to you all

Well here's another story.  I'm still so mad at my doctors.  (have all new drs. now.  In 2006 had nipple discharge, saw family doctor, had mamo and ultra sound  all neg., I just knew something was wrong.  My mother died at 46, grandmother died at 56 breast cancer.  In this day and age I just new i'd catch my diag early, I have worked in the medical field for 20 plus yrs., started having mamos at the age of 26. I'm now 52, diag at 50.  Well I said heck with Family doctor and went to my gyn, she did manuel check and went over all my tests, just kept saying all is neg., could not feel anything, discharge just a clogged milk duct.  Well i wanted to believe that,  but i just knew something was wrong,  to make a long story short, I had 4 mamos in 2 yrs, thinking something would show up, in July2009 had neg mamo, even the radiologist called me and said everything was fine.  In late nov. the nipple inverted and i finally got a biopsy, yep ILC all through the L breast,  I was beyond upset.  had BMX, chemo, radiation reconstruction,  I am doing good now, all tests neg.  but god with all these stories,1 mri could have saved us all from so much treatment.   Before my mastectomy, I saw a surgeon for a second opinion, he had all my mamos and walked in the room and said Debi  I'm glad to tell you, all mamos are neg.  then I told him about my biopsy,  he could not believe it.   My daughter will never go thru this./  God bless us all,  I know I tried to catch this bitch early!!!!

How many ILC ladies are on tamoxifen?  MO wants me to start it in a couple of weeks and I just don't know...

Fl warrior - I've been on tamoxifen for almost 3 years now.  It's not too bad for me at least.  You can always try it & if the side effects are too bad for you, you can always stop taking it. 

Hi Katarina,



I was dx this spring, breast size A cop, and had mastectomy. I have to have complete chest wall radiation which in my case is likely to mean no reconstruction possible -- but yours was large too and it sounds like implants. Are you having future radiation?

Beth i understand that altho ilc is the second most common bc it only represents ten percent of bc. Why couldnt we have just won the lottery

What an interesting thread.  A regular mammo did find something, then on to a digital mammo followed within minutes by US.  Initially, it was 1.2cm.  On from there to a biopsy which showed it to be Pleomorphic ILC then to a Breast MRI which said 1.7cm. The left breast, with the tumor, also showed numerous cysts.  The right breast showed multiple cysts as well, just not as many. Even the MRI said only the one tumor and cysts on both sides although it kept getting poo-poohed about the cysts.

Given the true risk of it going to the other breast, I chose bmx.  Some thing in the tone of the BS when he gave the options caused concern at lumpectomy with rads.  After surgery, pathology report showed it at 1.8cm.   Turns out there as ADH and PASH in the right side and in the left there was ADH along with ALH in multiple separate spots.  That, along with the BS expecting the initial tumor to merely be the tip of the iceberg in terms of size, considering that it's ILC, is why he didn't allow immediate recon.  He truly expected that rads would be needed along with chemo.  He also felt there was something brewing in at least the left side in those cysts and was glad I chose the bmx so I didn't have to keep going through this over and over.  Thankfully, both nodes from SNB were clear.

There is a small family history - Mother had Stage 1 BC at age 62/63 treated with lumpectomy/rads/tamoxifen and is alive.  I was told there isn't enough family history of the significant cancers to warrant brca testing.  However, now my Sisters have at least two close relatives and will have the testing as well as some Cousins.  My Son does not wish to have testing, says will deal with it if he ever gets BC.  At least he knows what to look for and how to do self-exams, as he's a Nurse.

Just the other day I saw the Tech who did my US and Biopsy.  We discussed all that had transpired since then.  When I told her that I knew during the US certain images showed me that I had BC, she pulled them up and went straight to the two images I'd seen.  So, they knew and just couldn't say anything. They all knew, from the Techs to the Radiologist who read my mammos and US to the Radiologist who did the biopsy.  

Just another story for this strange thing called ILC.  Right now, waiting for appt with Oncology to learn if chemo will be needed or just HT.  Also waiting on an appt with PS to discuss options.

To me, the dx wasn't horrific since I really already knew in my mind and heart.  What was terrible  was the core-needle US guided biopsy.   OMG, that HURT.  Even the injections for the SNB to me weren't as bad as that.

Okay, I'm done droning on now.  Thanks for listening.

Sally

  My ILC measured at 2.7 cm on my mammogram and ultrasound, but on MRI showed as 6.5 cm with satellite tumors. My BS wants me to start treatment to reduce the size of the tumors before surgery. Has anyone been through this and what kind of treatment did you recieve? Will I also need treatment after surgery?

Thank all of you for sharing your personal stories and your support.