Whats your ILC story?

Rdrunner I am sorry too.  In many ways I feel that the health care system failed me.  I trusted my faithul mammo's and gyn appoitments.  Nobody told me I had fibrous breasts, which makes immaging difficult.  If I knew I would have asked for an ultrasound or MRI.  Your decision to go for the MRI is a good one!  An MRI is the only immaging modality that truly detected all of the lobular and activity in my breast.  I think the info. will guide the surgeons when I have surgery tomorrow.  Also, you are lucky to have all the scans.  I was refused all scans except a bone scan which I begged for due to leg pain.  It sounds like you are in good hands.  Hang in there...

Regarding history - my Mom's brother also has leukemia and my Dad prostate cancer.  My BRCA results are not in yet but no family history of breast or ovarian cancer.  This disease is a tricky beast!

Wendy

Cleta, welcome, and sorry that I don't know any Romanian, although your English is perfectly fine.

You will find that many women with ILC opt for a bilateral mastectomy, if the affected breast has to go anyway. I am one of them.

Dear Momine, Dear Gitane,

many thanks for your nice words! This means a lot to me! Romania is a small country, I could not found any another woman with ILC, and now I realize that I am not alone!

Next week I will meet my sourgeon and I will ask for BMX. Hope to be possible, because here, medical standards requires conservatory surgery!

Hugs!

Dear Ladies,

 I could not have bilateral mastectomy, due to Romanian Medical Rules. It is forbidden to have bilateral without a clear evidence of disease.

 So, I am now five weeks after surgery, still with one drainage tube, still productive, waiting for complete recovery and radiotherapy.

 After surgery my ILC tumor had only 2.5 cm ( 3.6 cm prior to chemotherapy), and only 3 nodes out of 23 were positive.

Good luck to all of you!

Hello Cleta,  

I'm so glad you came back to let us know how you are doing.  I remember wanting that tube out.  It shouldn't be long now.  I had chemotherapy similar to yours and it did not kill all the cancer in my breast either.  It seems that is not unusual for ILC.  We will be thinking of you.  G.

Betty, I saw that too, and I was quite surprised. When I was diagnosed, the docs all seemed to think that contralateral risk was higher with ILC.

That said, they could find nothing bad in my left breast on either mammo, CT or ultrasound. Once they lopped it off, however, the path showed LCIS and pre-cancerous changes of various kinds as well. I asked my surgeon if he thought it had been the right thing to get rid of it and he nodded gravely.

I wish I would have been given the option for a prophylactic mx, so worried what about what may be lurking in there, but my surgeon just said there isn't enough evidence that ILC puts me at higher risk of contralateral bc and after chemo etc any risk of recurrence is very low. And now there is no more follow up as I am three years past dx it's a bit worrying. All other literature clearly states that ILC has a higher risk of being contralateral especially if it was multifocal/multicentric like mine.

http://www.mdanderson.org/newsroom/news-releases/2009/researchers-identify-risk-factors-for-contralateral-breast-cancer.html

Hi all~ I'm so glad I "stumbled" across this board too.., I didn't realize it existed.  My ILC, like many others, was a "thickening" of the breast that I first noticed.  Due to an extensive family history, they fast-tracked me through and I was SHOCKED to hear the news.., after all I have AFLAC! (you've seen the commercials with the duck, yes?) 

Though I knew I would ultimately have a double mastectomy (I tested positive for the BRCA gene), I chose a "reverse-path" of treatment (my request) and had chemo FIRST.  I was slated to have 12 Taxol's but 1/2 way through, the oncologist sent me for an US (to make sure the tumor was shrinking).  Low and behold, the US showed the tumor LARGER than initially measured. YIKES!!! The chemo was halted and off to the operating table I went (for a lumpectomy).  WOULD YOU BELIEVE that the US was waaaayyy off in measurement?!??!?!  The surgeon thought he was looking for a 6.5 cm tumor (initially 3.5 cm at time of diagnosis) but the pathology came back with a 2.5 cm mass and clear margins!! So it HAD shrunk, after all!  Fast forward - I resumed chemo and had my last 4 dose-dense AC treatments - which landed me in the hospital with neutropenia, but that's another story. 

I had my BMX last July 5th and TEs placed.  They were the Sientra double-chamber.  I really liked the concept of the double chamber and I didn't start to dislike Sientra until I went in for a fill one day (in August - the school year had begun) and my PS found the fill port turned on its side.  Yep!  My TE had rotated itself into my armpit.  No wonder I was so uncomfortable!  Needless to say, he swapped that one out and we scheduled the exchange for December (after Christmas & over my winter break - school schedule).  After having had the exchange, I'm still trying to find my new boobs.  I think they're smaller than what I started with (which was only a large A/small B to begin with.)  They are Sientra 425? something or other (I don't have the 'i.d. card' nor do I want it since I'm not keeping these).  My next follow up appt with the PS is March 29th and if I haven't found 'em by then, we'll be talking about scheduling ANOTHER exchange.  I'm not trying to be greedy (or voluptuous) .., but after all that I've been through..., well, you know the story. 

So to my ILC 'sistas', Thanks for listening!  I know it's a lengthy one (& maybe too much detail) but it amazes me when I think about what I was going through last year at this time.., and how far I've come!  I encourage us all to ADVOCATE, advocate, advocate for ourselves!!! We are entitled to 2nd opinions.., to ask questions.., to receive answers.., to research and educate ourselves.., and to make the BEST decisions we can based on the information that we have at the time! 

Please take care and NEVER beat yourself up for cancer.., it's doing enough harm already!  Truly, C2

Hi everyone ~ I joined your board about a month because I had a little scare . . . It's benign, thank God.

Now I'm here for my sister. She had ILC 10 years ago. Went through chemo, radiation, etc. Although the cancer had metasisized to an area in her mid section/abdomen (not sure exactly where), she was said to be cancer free a year later.

So now, unbeknownst to me, she has been throwing up a lot for the past month, especially after eating fatty foods. Her boss was finally able to convince her to go to the ER (I live in a different state), and she's been in the hospital now since last Thursday. She had a colonoscopy which showed a "blockage". She is in surgery right now as I write this to remove this blockage.

I just got off the phone with my dad who told me that she also had an MRI that showed two "bone lesions". I'm sure my sister has withheld this information from me so that I wouldn't worry. I'm already convinced that her "blockage" is cancer. I am freaking out that these bone lesions are cancer too and that they are going to find her whole body revenged with cancer. She's a strong woman and I know she can fight, but I'm so scared that she is going to be one of those people you hear about that go in for a tummy ache and die a few months later. She's 50 years old.

Has anyone here had their ILC metasizied to their bones or colon? What should we expect? HELP!   :-(

Hi y'all ..Like many before me I stumbled upon this site while looking for answers...I'm a 53 year old wife, mother, and grandmother...and am owned by 2 dogs, 2 cats, 2 chickens, and a multitude of fish...a few months ago one of my dogs began acting odd towards me, she followed me, barking, whining and at times actually crying tears, I thought she was ill....finally I noticed that each time she jumped on me she placed her paw on the same spot on my breast. There I found an area that felt different...mammogram showed nothing was there, US showed nothing was there, but yet I could feel it..On 1/15/13 I had an US guided core biopsy, I should have know something was up when the US technician commented that the lymph nodes look okay. On 1/30/13 I was told that I have ILC, with DCIS thrown in too. BS recommended lumpectomy, until my MRI results came in...it showed other areas of concern so he changed his recommendation to mastectomy ...I chose to have bilateral mastectomy which was performed on 3/12/13, no reconstruction. On 3/27/13 I returned for the second post op appointment thinking I would be rid of the remaining staples, and be sent to the oncologist, instead I was told that he didn't get clean margins, so tomorrow 4/2/13, I'm having additional tissue removed, and skin grafted from my thigh on to my chest to close the incision. The pathology from the sentinel node biopsy showed 200 cancer cells, according to the surgeon that's nothing to be concerned about, easy for him to say they aren't his lymph nodes, I don't want ONE cancer cell anywhere....Right now I have no idea what course of treatment to follow..I will see the oncologist for the first time on 4/9/13..I don't know my stage, my grade, + or -, Who tells me those things? What questions do I ask?

And to add to my stress I have NO insurance, so instead of searching for answers to my health questions I've been searching for financial options. I feel as if my health is suffering, and that I'm being treated differently than someone who has insurance.

Thank you for listening...Any information you can share will be appreciated

Gramwe,



Click on the too of the page "breast cancer.org" and in the search box type in UNINSURED. a bunch of kinks will appear and you might find some useful info.



Pat

Hello y'all ....I've taken a few days off of cancer..my brain was in overload, as were my emotions. Tuesday's surgery went well...I did have a lot of bleeding on my chest that required a trip to the BS for a bandage change, and orders to not move...so I've been confined to bed and bored out of my mind..thigh stitches are itching....ok enough whining...Tomorrow I see the BS.. Tuesday the oncologist ....so I'll know more and undoubtedly be back here to read more...

C-squared Thank you for the link and the hugs...I am from South Carolina..hence the hey y'all ...spring had finally arrived making being still, inside all the more difficult...normally I'd be outside planting veggies, flowers, and wading through the pollen, instead of looking out the window...

Pattysmiles Thanks to you also for the link you posted...lots to think about ....lots of questions too....when will you be having your next surgery? I'm sorry you have to go through another one...

Oh good grief I hear my lawn mower running...my DH is not licensed to mow our yard....running to save my budding flowers before he beheads them...

Patty~  I hope your weather is coming the Chicago-way!!!  Rumor had it that we are expecting SNOW this Friday!!!  Can you believe it???  SNOW!!! 

Come on over for a visit!!!   Do you like Chicago?  Crazy weather GUARANTEED!!! 

No snow for us. We have an inch of pollen and its still coming down. Tomorrows rain will make for yellow puddles.

Sure wish I was allowed outside to sneeze and scratch my eyes. Still on the no duty list waiting on the skin graft to take root. Maybe next week! Also waiting another 2 weeks for oncotype DX. All this waiting is agony. Thank goodness for Ativan.

Pattysmiles, I admire those that have a talent for cake decorating. The few times I've attempted it, it looked like my grandson was the artist.