ILC - The Odd One Out?

Katrina,

My mets were found from tumor markers then had an MRI that showed my abdominal mets quit clearly.  My doctor had been doing PET scans every 6 months then yearly since diagnosis 4 1/2 years prior.

I did have dense breasts that I felt pretty good about.  No saggy old lady breasts for me.  I didn't understand that it was not such a good thing.  I had a mammogram and gyn exam about 3 months before I discovered the large mass myself.

I am both ILC and triple positive. Not very common. It does feel lonely when it seems you are the "odd woman out." I am seeing more ILC DX on treatment threads these days. Not too many triple positive, grade three though. ILC is "supposedly" the slower growing, "old ladies" cancer.....NOT....

I posted on the triple positive thread, but didn't really feel it was a good fit for me. I don't think there were any other ILC ladies on there. 

Robin, it's SO good to hear from you! Maybe we'll even find a few more with this unusual dx. I hope the slow-growing part is true, especially since I have mets.  The tumors in my liver started out about 10cm and shrank over 80% with the first two cycles of chemo. I hope they're very slow to grow back...or better year that I get to NED and stay there. 

I know what you mean about not fitting anywhere. Hopefully, we'll find a few more ladies. 

Trish

Hi Trish, 

Thank you for posting and sharing your story. So glad your tumor is shrinking!  I've heard a lot of good things about the new drugs Herceptin and Perjeta that have only recently appeared on the horizon. Sounds like you are getting good care.

Keep us posted!

Hi all, I haven't posted on this thread in awhile, it's been such a busy time. After all the research, reading, learning, thanks in a big part to these boards, my tx plan is in place. I have stage 2, grade 1 ILC. We know of at least 2 involved lymph nodes, but no mets. On March 14 I will start neoadjuvent therapy with cytoxan and taxotere avery 3 wks/6 rounds. After that, I will be having a lumpectomy and axillary lymph nodes removed, followed by radiation and 10 years of femora or tamoxofen. I'm still trying to wrap my mind around the next 8 months of my life, but I guess it'll be alike the last 1, a day at a time. The initial thought was Adriamycin but for me the idea of that drug was the scariest part of this whole thing. My dad died at 59, brother 46, mother 74 all died from heart disease. My other brother, fit and active had triple bypass at 56. I had a cardiac cath 7 yrs ago which showed moderate CAD. My recent MRI showed my CAD plus renal artery calcification. I was so fearful of being cured of BC only to find out my heart would be mush. We just have lousy genes. With all this in mind, I think I feel comfortable with my decision. I'm so thankful to all you ladies for providing me with much of the info I needed to figure this all out. I felt prepared and informed by the time I got to my MO appt. My husband couldn't understand why I couldn't just "wait to see what the Dr. said" I said would you drive into a car lot and then decide what kind of car you wanted? NO… you'd do your research and find the best fit. I think he got the idea after the appt.

Diem, earlier you asked me if we have a family hx, I do not have any sisters, my mother did not have BC, however, both of my grandmothers, 2 of my mom's sisters, and one of their daughters all got BC, all in their 50's. The cousin was in her 40's.  I had BRCA testing about 7 years ago and it was negative but my oncologist says they're more advanced now and she'd like me to have another.

There were many posts earlier about atypical hyperplasia, I had it in my uterus in my 30's and had it removed. Related?? who knows.

Trish and Danishgirl, my thoughts with you both, hoping for NED reports in your futures.

SoCalMom…. we're gonna get through this.

Best of luck to all you ladies, thanks again for all the great info, I've got 1 more week of "normalcy" wishing you all the best.

Genny, my dx same as yours but I had more + nodes.  My lumpectomy was my biopsy so that happened first.  And I had Adriamycin because I knew personally I could handle it and I wanted it all. If my oncologist could have given me more chemo I think I would have asked for it   

Anyway, the hyperplasia in our girl parts might be estrogen driven...I had two fibroid surgeries 1 in '97 with 6 removed and 1 in 2009 with 87 fibroids removed. That last # isn't a typo.  Fibroids are estrogen driven, and so is my ILC--I was about 110% ER+  !  Let us know how it goes for you. Chemo wasn't as bad as I had thought and neither was rads or even my BMX with recon.

Claire

bc101,

I've been on the A/A combo since 11/30/13 with 2 weeks off twice for mouth sores,  My MO lowered the dose from 10 mg to 7 1/2 and have really had no issues since.  I'm really hoping that the combo shrinks those darn mets.  

I think being triple positive is good because they have more options with meds.  I  was on Herceptin for a year because the tumor in my other breast was IDC triple positive.

Trish,  I'm so sorry your cancer came back but glad you are doing well on chemo.  Hoping for NED.

Good luck, karma, prayers, vibes etc to all you ladies who are dealing with this scary stuff.  MaryAnne

Trish, i will keep you company with your dx! I had ILC, triple+, too.  Have not posted in this board for a long time.  Been taking a break from bc talk since i finished my treatments but glad to see this thread.  It will take me a while to catch up.

Genny,  We've had several german shepherds over the years.  They are great dogs.  Since we've moved to Florida and our last GSD died at age 13, we got a standard poodle who doesn't shed.  My daughter and son in law just moved in (while their house is being demolished and rebuilt) with their 2 schnauzers, a mini and a giant.  Our house is a zoo, but so much fun.  I really don't have much time to get discouraged.  Did I mention my 1 1/2 year old grandson and my daughter is expecting a girl in July?  Happy days!  MaryAnne

Genny, great pictures. I confess that all through treatment, the thing that kept me going was that my dog would be all confused and sad if I died  Yes, I have a loving daughter and a loving husband, but I figured they could reason it out or something. The dog? He would just be sad.

Diagnosed December 2002. Stage 2A. 2 tumors in left breast. One was 1.8 cm and the other was 3.2 cm. Missed by mammogram but due to suspicious sighting in sonogram a biopsy was ordered and hence: ILBC. Surgery in February 2003 for left breast mastectomy. 13 lymph nodes removed and all negative. Vascular system also negative. CT revealed no mets. Precautionary chemo:  4 chemo (Adriamycin/Cytoxan) 4 chemo  taxol, then 30 radiation treatments.  1 year of tamoxifen, followed by 5 years of arimadex then 3 years of aromasin. Diagnosed metastatic to gastric wall July 2012.

its just my opinion but i think KI67 depends on which bit of sample they test, I had two pathologies done, KI67 was 95% on one and 25% on the other! 

Genny,  Your little granddaughter is beautiful.  What a head of hair she has.  My little grandson's is almost invisible.  

Emma is a beautiful GSD and the little guy looks like an adorable stuffed toy!

Momine,  I feel the same way about my dog.  He seemed so sad when I had recurrence.  He is at my side when I'm home and in my bedroom when I'm out of the house.

Annette U,  I don't think I had a Ki 67 test because with 19 pos. nodes there was never a question of my treatment or maybe that test was not available 5 years ago.

vgreco,  Progression is a real shock I know.  My mets are in my abdomen too but mostly around my colon and lower part of my stomach.  I'm on A/A combo and presently have no side effects or pain.  Will have a CT later this month.  I hope you are doing well.

My onco was 13.  My Ki-67 was 9 and dropped to 7 after 7 weeks on tamoxifen.

Good Luck with your cold caps tomorrow too!  I am 6 months PFC and my hair is crazy with new growth plus all the old hair that hung on for the ride!!!

greenarch, I am on the original, name-brand femara and have been for almost 2 years. I find that the SEs come and go and there doesn't seem to be much rhyme or reason to it. Like you, I find it mostly bearable, but annoying. In general, if I take good care of myself - exercise, food and sleep - it is either lighter or else I am just better able to shrug it off. Either way, it helps.