Long Term ILC Survivors?

apuget

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.

apuget

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.

Gitane

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

ykwas54

I had ILC, stage one, lumpectomy, 3 nodes light up and removed radiation, (33 treatments), taking aromasin, and am now on my 2nd anniversary. Had a surgery in August to remove a seroma that wouldn't go away.  Now a new seroma has taken it's place.  Anyone else dealing with this? Mostly, I don't think about the cancer at all, but sometimes, when I feel pain from the seroma, I do tend to get a little nervous!

victorious

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

Anonymous

victorious--there are two types of ILC--the classic ILC and pleomorphic ILC; it's a difference at the cellular level and PILC is said to be more aggressive. My positive bc story---My mom had ILC with negative nodes (I'm assuming it wasn't pleomorphic since that wasn't mentioned anywhere in her path report)--lumpectomy, radiation, tamoxifen, and is now a survivor of over 21 years without a recurrence! She was 57 at diagnosis. I was diagnosed with LCIS almost 5 years ago, taking tamoxifen, am very closely monitored by mammos and MRIs and am doing very well.

Anne 

Gitane

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

sjandtj

I am a 2 year survivor of invasive lobular 1 node envolved !  went with a lumpectomy , chemo and rads.  I am on femara after trying everything else!!! 

I still have sever fatigue even after 2 years but I am cancer free!!!!!!!!

sfj

mediamaid

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.

bshep50

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

bshep50

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

Anonymous

Gitane - I'm just now seeing your post...sorry...yes...our dx's are similar. I hope you're still doing well...fingers are crossed for you. Thanks for acknowledging me...I wish I had more time to help all the girls here. Be tough...be happy, b9!

barb - Yes, it's always great to hear long term ILC survivor stories. Take care...and like I said above to Gitane...be tough...be happy...b9!

azia519

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.

nash

Azia, sorry to hear about your sister and your grandma. You'll get tons of info and support on these boards, though.

The most important things to find out are her ER/PR and HER2 receptors. Almost all ILC are ER/PR+, HER2-. These receptors affect the type of treatment she'll receive. Women who are ER/PR+ get hormonal therapy (HT) such as tamoxifen or an aromatase inhibitor (depending on menopausal status), and HER2+ women receive Herceptin along with their chemo.

If your sister's lymph node biopsy is negative (this will be done at the same time as her mastectomies), the onc can order Oncotype Dx to be run on her tumor. This test looks at the DNA of the tumor and gives a score that puts the patient in a low, intermediate or high risk of recurrence category. The category also gives direction as to the type of therapy to pursue--women in the low category have tumors that will respond well to HT and not as well to chemo; women in the high category have tumors that will respong more to chemo than to HT. Women in the intermediate category are in a grey area, and the onc will use other factors (tumor size, grade, age of patient) to determine whether or not to do chemo. 

You said in your post that chemo is in there works. Not to second guess the oncologist, but just to make you aware--there's been a recent trend in breast cancer treatment to consider HT alone as opposed to chemo/HT. The researchers are finding that chemo doesn't help as many women as originally thought, and that HT may be the way to go in more cases than orginally thought. As ILC is generally ER/PR +, and in some cases highly positive, the HT vs. chemo/HT issue is an important one. 

As far as what to expect going forward, I would suggest reading the Surgery board. There is a Chemo board and a Hormonal Therapy board as well.

In addition, there is a board for Family Members, where you can meet other sisters of patients.

I was diagnosed June 7 of last year, so your sister is almost exactly a year right behind me. I'll tell you that the year was rough, but doable (I had a lumpectomy, chemo, radiation and am now on tamoxifen). During this, in February, my mother died of bc (she had a much more aggressive tumor, and was on active treatment for 5 1/2 years). So I know how hard this is on the family. Good luck to both of you!

azia519

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

prariewatcher

hi, this is my first attempt in trying to join a talk forum online or anywhere. I think we have similar diagnosis. I have lobular cancer, with 11 out of 17 positive lymph nodes and ca in the fatty tissue outside the node area. I believe I am a 3b or 3c. I have just finished my chemo and am suppose to be fitted for radiation but have had trouble with seromas and infection in the area of the surgery. I see my oncologist again today to discuss these problems. please write if you want, i am so looking for encouragement, persons with like diagnosis, and survivors.  prariewatcher

PeggyDixon

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

Gitane

Hi prariewatcher, I wrote a message to you, then when I tried to send it I got a message that the site was not working. Obviously it never was sent. So here I am again. I, too, am sorry you are dealing with BC. I am sure it is a good feeling to have chemo behind you, now. The after effects of your surgery are not fun. Seems like the chemo takes away our ability to fight off those infections. I had cellulitis after my SNB and then shingles after chemo. YUK! The drugs were able to clear it all up; the infections were a small price to pay if the treatments saved my life. Here's hoping they can clear that up for you quickly so that you can get on with your treatments and on with your life. Hopefully you are feeling O.K. and the treatments are not too awful. If you read stories on this site you will soon learn that the people here are wonderful. They are real and they care. We couldn't ask for better help in our daily lives with BC. I am approaching the 3 year anniversary of my diagnosis, July. I'm on these boards from time to time and learn from the others. If you can come back and write to us, we'd love to hear from you.

yogamary

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

LindaLou53

Bumping this up for JudyO.  Lots of ILC survivor posts here too. 

JudyO

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....

AussieSheila

Hi Ladies, I'm not sure whether to post here or not, so here goes.  I was dxed, at age 48, in April, 1995 with ILC, had modified mx, 32 nodes removed, 2 positive, followed by 4 cycles CT, and five years Tamoxifen.  Every thing was fine until mid 08, when I was getting hit by bone pain which I thought was caused by arthritis.  My GP told me this was the cause of all my pains for the last five years. 

I accepted this as I was 61 by then and assumed it to be normal, age wise.  Now, I am being treated for Bone mets to skull, arms, ribs, hips and knees.  I have suffered pain in these areas intermittently during the last few years but when they all kicked in at once, it was more than I could endure.

I am now stage IV but my bm's can be controlled for quite a long time to come.  So, I hope to still be around for at least another ten years.  I did get a good long run the first time around and maybe I will get my 'three score years and ten' yet. 

I also know, through my local cancer support group, of quite a few people who have had 21-30 yrs since first dx.

Sheila.

AussieSheila

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.

AussieSheila

I didn't have rads the first time around but did 4xCT, plus the Tamoxifen x 5yrs. 

One day, when I was at the hospital for a check-up, some time in the first year, I heard my surgeon and the Oncologist out in the corridor arguing about how it was a waste of time doing all these follow-ups on patients. Apparently,  they wouldn't find any new lumps etc., during a 5min consult, as they were always found by the patient or her GP. From then I only had a yearly Mammogram & US and eventually forgot about the BC in relation to it ever recurring.  When I thought I had arthritis, it just didn't occurr to me that the pain was being caused by mets so I was quite shocked, to say the least, when told what it actually was.

Sheila.

angeljoy

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

Hi all! In June I will be a 9 year ILC survivor! Each day is a gift!

Gitane

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.

Anonymous

Angela - Welcome!

Blondee - Wow... 9 years! YAY! Good for you - and thanks for sharing it with us!

walk58

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.

nash

walk58--there is a thread on pleomorphic ILC on this board--cut and paste the link below into your browser--

http://community.breastcancer.org/forum/71/topic/700759?page=1