Long Term ILC Survivors?

Hi, I am also ILC ER- PR+. I always hear about estrogen, but never progesteron. I was diagnosed March 2004, so I'm almost 4 years survivor, but a have very scary moments. I do not feel like is over, and I'm paniking now over bone pain that is not going any where. Please, excuse my spelling, I'm from Spain, but live in US for las 26 years. It is also hard no having my family around.

LauraGTO



I was diagnosed 3 days before you. My tumor was the same size. I had micromets in one node and ITC's in two others. Mine is ILC also, but pleomorphic and PgR negative; I'm Her2 neg. Like so many of us, I feel that this is not over for me. I'm NED so far, and although I'm this far out from treatment, am only just now starting to feel somewhat like the "me" that began this roller coaster ride. I'm following this thread, too, hoping many long term survivors will post. I'm new to these conversations, and have been reading them and learning so much. I feel lots of support here; I'm inspired by the caring people who come here. Sometimes I feel like it's more than I can endure, other times I feel the love, especially of my husband, and am grateful and comforted.



You've helped so many with your posts on these discussions. Especially me. Thank you.



Gitane

Hi,

Could some one tell me what the "classic type" is???  I have gone to this thread because I need some hope.  Everyone says my porgnosis is good but I feel sort of doomed I guess.  So, I am all for "positive cancer" stories.  I loved the one on here where the woman had ILC 28 years ago and no treatment and she is fine!  I am having treatment of course, but hope to be able to be writing here in 28 more years.  I am turning 60 in December.  Turning 60 was daunting, but 60 with cancer and no breasts (and single) is quite a lot to deal with. 

Thanks!

Victoria

Anne,

I was diagnosed at the same age as your mom. Would you mind telling me how they found your LCIS? I understood it doesn't show on MRI. It was great hearing that your mom has been free of bc for 21 years. It helps us to hear about women who survive this. Hope she continues to do well for many years to come.



ykwas54, I never had the seroma you are describing. Is it under the arm where the nodes were removed? Is it swelling caused by fluid?



Gitane

I am a survivor of three years and I'm doing fine. I will be having a prophylactic mastectomy on my "good" side on June 9th just to avoid the MRI's I'm getting every six months because "there's something we're watching", Guess what - they won't need to watch it anymore:-) My surgeon has told me that ILC has a tendency to jump to the other breast. Planning on reconstruction in November. Might as well get two new ones that match.

I am also training to walk in the Avon Walk for Breast Cancer in New York in October. It's 39 miles over two days. I did it in '06 - about a year after finishing treatment. I really think it helped me get stronger. I live in Florida so there is a lot of training in August and September (20 miles) a day. I figure if I can do that, I'm doing great.

laura,  Your story of the 30 year suvivor made me feel better about my outcome. I was dx almost 5 years with lobular bc. My friend just recently passed away from bc and I was feeling depressed about life. thank you so much.

barb

My sister was just diagnosed with ILC. She developed a lump, had it biopsied Thursday June5 2008 and we just found out it's cancer.

Monday, June 9 2008.

She's had it for quite some time from what we've been able to discern. They've told us it didn't show on the mammograms but she has had abnormal results.

She said it grew within the week. I'm worried. Any help or hope or suggestions? Please let me know what we're dealing with.

We lost our grandma to lung cancer less than a two years ago. We found out she, grandma, had cancer, then four weeks later she was gone.

I'm upset, sad, and frustrated, but I'm also, ready to fight this demon. Any insight on what I'm gonna deal with would be greatly appreciated.

double masectomy, and chemo is in the works.

Thanks will do. I've been kinda lost lately. I don't want to talk to anyone, and I don't know why but I'm afriad to talk to my sister or see her, why??? I've forced myself to call her. The thing is she doesn't call me. She couldnt and didn't tell me, my ma, or her only daughter she had cancer. Why is this? If your thinking, what about dad, our dad was shot and killed long ago. You dont have to respond to my reply. I'm gonna go to the other board u suggested. ty ty. God bless you for responding in such detail. I really the time you committed for me to respond.

love and hope for all

monica

Hi Prairiewatcher.....So sorry you had to join us but now that you have, this is a wonderful site for support and information. I was diagnosed with lobular cancer in January 2006 and after mastectomy discovered I had 12/28 positive lymph nodes. I had 6 months of chemo followed by 25 or 30 rad treatments. I have been on tamoxifen for almost 2 years with minimal side effects since my cancer was strongly er+ (as most, but not all, lobulars tend to be). So far I am fine and I actually have days when I don't dwell on or think about the cancer at all, except that I have to take the little white pill every day! For the first two years I saw my oncologist every 3 months but now it is every six. If you have any specific questions please feel free to ask anything at all.  

Hugs and good wishes flowing your way. Peggy xo

Hello prariewatcher, I was just searching the internet and ran across your post....I am also a lobular carcinoma survivor.....I had 15 out of 36 lymph nodes test positive for cancer; I was entered in a clinical trial at Yale New Haven Hospital after a modified radical mastectomy, had radition, have taken tamox., am currently on Femara and I also did a year of Herceptin prophylactically; my journey started back in May of 1999 when I was 39 years old....and I'M STILL HERE!! ; I have no evidence of disease, all my tumor markers are within normal limits...I hope this gives you the encouragement you need.....please let me know how you are doing

Thanks LindaLou53...It was so very kind of you to bump this up for me. I am a very nervous person and I just need some positive things thrown my way every now and then. My husband keeps asking why I spend so much of my free time on the computer....I keep telling him the girls make me feel better and it is nice to be at a place where people understand your emotions. I keep my fears inside when I am around others...at my oncs they keep saying wow I wish others had your attitude and spunk....but what they don't know is I using hit the car and cry all the way home...I have also kept this from my family...I have 2 boys in college and they don't need to worry until it is absolutely necessary....I again thank you a million times over....

Hi Sherry, I am currently taking Arimidex and Bonefos.  My Onc says I cannot have rads or chemo so I guess, AI's are the only course for me.  Before dx, I was clumping around with what I call  'wooden leg syndrome,' when some part of my skeleton was making a loud wooden leg sound as I walked.  I couldn't isolate exactly where it originated but, as soon as I went to the Dr, with the help of two walking sticks, the sound stopped!  It wasn't because of the meds either as I didn't start taking them 'til 6 weeks later.  I heard the sound again today for the first time.  My Onc told me in Feb that the Arimidex was working as my TM's were down but I have so many aches and pains now, I don't know where to lay the blame, Arimidex or mets.

Sheila.

This forum is just what I needed to read!  I am so happy to hear the stories of long term ILC survivivors who had positive lymph nodes. I It's been almost 1 1/2 years since my diagnosis with ILC and I swear I think about recurrence every single day.My mass was more of a thickening.  No one could ever feel it.  It originally showed up as a "vague area"  on my first digital mammogram and then ultrasound.  It lit up on the MRI, but came back as normal breast tissue on the core needle biopsy.  Thank God for the radiologist who said, "No, this doesn't look right" and recommended the surgical biopsy! I am ER- PR+ and had 6 of 14 positive lymph nodes. The cancer was only in the right breast, but I had bilateral mastectomes, and reconstruction with expanders. I had chemo (AC + Taxol) and radiation on the cancer side. I am 51, but still pre-menopausal, so I am on Tamoxifen. One of my implants failed, so I have chosen not to do any further reconstructive surgery right now and am adjusting to life as a "uniboober", as we call it on the other board I frequent. As if recurrence is not on my mind enough as it is, I have two friends who are currently battling mets.  One to the bones and liver, and one to the brain.  And I often think of the women I know who we lost to BC before I was even diagnosed. Sometimes I feel like more women I know of have had "bad" outcomes than good and that is so distressing.  So it has really lifted my spirits to hear all of your stories!  Thank you so much for sharing them.

Angela

Blondee,  Welcome to the ILC group.  It's nice to read that you are doing so well. 9 years.  That qualifies as long term in my book.

i would love to hear about your stories. You are amazing women. I was found out I have filtrating pleomorphic lobular carcinomas in my right breast and waiting for monday to discuss my mri with the doctor and find out if it has spread anywhere else. Can you give me some feedback on this.