ILC - The Odd One Out?

JohnSmith

I created a thread about this, here, but it's already buried, so I'll repost here.

The First International ILC Symposium is official.
September 29-30, 2016
Pittsburgh, Pennsylvania, USA

There's not much detail, but here's what is known so far:
The University of Pittsburgh Cancer Institute and the Magee-Womens Research Institute will host the event.

Chair:
- Steffi Osterreich, PhD (University of Pittsburgh Cancer Institute)
She's the Principal Investigator of the Oesterreich Research Group, which consists of a collection of ILC researchers.
This is the same group responsible for the only ILC Clinical Trial in the US, "Endocrine Response of Lobular BC".

Co-Chairs:
- Nancy Davidson, MD (University of Pittsburgh Cancer Institute)
- Otto Metzger, MD (Harvard Medical School / Dana-Farber Cancer Institute in Boston)
Dr. Metzger was involved in the Breast International Group (BIG) 1-98 trial which compared the Letrozole (Femara) against Tamoxifen for ILC patients.

Patient Advocate:
- Heather Hillier (an ILC survivor, who works at Magee-Womens Hospital of UPMC)

More details will follow...

fizzdon52

Thank you so much John, I appreciate your posts very much, even though I don't really understand a lot of them haha! It's nice to know there are experts who are trying to find out more about Lobular!!!

artistatheart

yes, thanks JohnSmith so much for all that you do. I find it pretty complicated information sometimes too. But still read and reread to pick out what I can. It is good to know that research is moving forward and hopefully picking up pace with the ILC. I found it interesting that my Dad was from Pittsburgh and my maiden name is Magee....I'll take it as a good omen!

614

Dear ArtistatHeart:  I went to 3 MO's.  I went to 3 RO's.  I ultimately had my surgery and radiation in Texas and I live in Florida.  I need to feel that I trust and believe in my doctors.  I found the best MO and the best RO.  I do understand remaining with your current doctor and going to a doctor who is close to home.  Proximity and familiarity are less stressful.  Good luck. 

bc101

Hello all...another Pleomorphic ILC'er here. Just wanted to say how much I appreciate reading this thread and the resources posted here by JohnSmith and others. Really great stuff, although my brain fog doesn't allow me much attention span anymore, I'm so glad you're watching over us. Keep up the good work!

614

Hello BC101 to my fellow pleomorphic ILC'r.  I understand your fear and worry.  I worry all of the time about recurrence and that nothing will be detected on imaging.  Good  luck.

bc101

Imaging? What imaging? If you get imaging during your follow ups, you are one of the lucky ones, lol! But seriously, it IS really scary having had ILC, mainly because it seems most providers do not appreciate how different lobular is. I wish I could say that it get easier the further out you go, but I think for a lot of us, the fear never really goes away.

Best of luck to you, too!

karen1956

bc101....the fear does lesson or at least it is not the first thing on your mind when you wake up and when you go to bed. I am 10 years our from diagnosis. I know that it can come back anytime, but I don't live in fear. I quit taking AI's after only 3 1/2 years as the side effects were too much and affecting my QOL. That was 6 years ago. My oncologist only treats bc and breast diseases. We;ve never really discussed the difference between ILC and IDC or other breast cancers. I think the gals who have imaging are the ones who had lumpectomies or single mastectomy. I had bilateral so nothing to mammogram. Chemo, radiation, oophorectomy and AI's. I gave it my all. It's a crap shoot. Live your life to the fullest. Hugs from Denver, Karen

dtad

karen1956....your story is such a good example of what a crap shoot recurrence is. Why do some recur after throwing everything at it and some don't with less? I have a friend who had a 5cm ILC with 6 positive nodes. She refused chemo because her daughter was about to have a baby. She had a BMX and took an anti hormone for 5 years. That was 15 years ago NED!

gerrib

Hi, Just wondering if any of you can help me with my post umx oestrogen receptor status and Ki67 score. This is a local recurrence in opposite breast.

the oestrogen receptor is weakly positive in 30% of tumour nuclei

progeserone receptor is negative

Her is neg

ki67 is positive in 20% of tumour nuclei.

Is weakly negative oestrogen receptor bad? Something like triple negative? The biopsy pathology diagnosis was ILC pleomorphic type. This frighted me when i looked it up but the surgeon and the onc were not concerned

I was given the option of 4 doses of chemo (A&C) but have opted for just Arimidex. I am 65. I was told that the chemo would increase my overall survival rate by 5%. I really don't want to do chemo. I was node negative. I am having genetic testing to hlep me decide if I should have other breast removed.

I am in Australia. They don't do oncotype testing here.

Thanks

Gerri

stellamaris

Gerrib: I have a similar ILC dx to yours and I am the same age. My estrogen + status is also weak. I was node negative, well, they found isolated cells in 2/3 nodes, but they are considering those cells as insignificant. I think weak ER+ is still better than ER-. My oncotype score was 27 (if it had been 28, my MO would have gone the chemo route). He noted that chemo would have only improved my recurrence stats by 3%, and I am comfortable with not having chemo. I am on the AI Femara for 5 years. I am still waiting to find out if I have to have rads after mu umx on 3/24 (hope not). My MO noted that the AI is a bigger gun than tamoxifen.

Optimist52

Stellamaris, I also had isolated tumour cells in two nodes, and it's wonderful that your doctors have called those insignificant. I've been confused as to how important they are. I have noted 2 nodes as positive on my diagnosis here as you can see but may change it. Also with a 4cm tumour as you and I both have, it increases the stage to IIB with 2 nodes. I'm interested to know more about what you have been told about this. My Oncotype was 22 so no chemo.

614

Dear Gerri:  It sounds like you are almost tripple negative.  The weak positive estrogen is good.  The pleomorphic is bad.  That makes your ILC more aggressive.  Mine is pleomorphic too but I was lucky becasue I am grade 2, not grade 3.  Do you know your grade?  My doctors don't seem too concerned either.  Ki67 at 20 is in the high good range but 21 is considered on the very low end of high.  (Does that make sense?)  Stellamaris is correct.  AI's are better for ILC than Tamoxifen.  I am glad that you don't need chemo.  Good luck with tx.  I will say prayers for you.

Dear BC101:  I was diagnosed exactly 1 year after you.  I will be having mammograms/sonograms every 6 months and and MRI at the next 6 month interval.  I had a double lx, not a bmx so I must continue to have imaging.  Two suspicious areas were found at my first 6 month mammogram/sonogram so I ended up having a MRI as well.  One suspicious area was biopsied but the other could not be biopsied at that time.  I also ended up with a "giant" 8cm hematoma from my first biopsy after my bc tx.  7 different types of benign findings were noted in the pathology report.  I had to wait 6 months for the second biopsy.  It was extraordinarily stressful to wait and wonder.  They called it a "linear non-mass enhancement with rapid washin washout kinetics."  ALH was found in the second biopsy.  I should be having my next mammogram/sonogram at the end of May.  The MRI will be in November.  I think that I would go insane from worry if I did not have regular imaging.  I "feel" lumps all over.  I have extremely dense/lumpy breasts.  (I have had 14 biopsies/lumpectomies (total) in my life plus I had the SLNB too.)

If you are not having imaging, hopefully you are having regular exams with your MO.  I can only imagine that you are not having imaging because you had a bmx.  I wish you the best.

Pleomorphic ILC plus Pleomorphic LCIS causes me tremendous stress, worry, and anxiety.

Good luck to everyone here.

gerrib

Thanks for your replies Stellamaris and 614. My latest tumour was ILC Grade 2. I feel reassured that we are having similar treatment. I was on Tamoxifen for 4 years post my IDC diagnosis in 2011. i wanted to be on T because I already had osteopaenia and high cholesterol. However it didn't stop the development or growth of ILC in other breast or maybe the ILC was there all the time but had to grow to a certain size to be seen on mammo and US, So now I have commenced Arimidex. Hope you don't need radiotherapy Stellamaris, That is one of the good sides of having umx for me.

ShetlandPony

Artistatheart, it seems like the whole time I've known you, you have felt uncertain about your onc's qualifications. Even though a change would mean more difficult logistics, it might really improve your quality of life by lessening the worry and energy spent on monitoring your current onc. My cancer center is kind of far away, but so worth the travel to me.

Leslie13

If cost is preventing you from traveling to a better facility, such as a med school or Mayo clinic, the American Cancer society provides assistance. When I wanted to go to Univ. of Pittsburg, they were going to pay hotel and had links to another group that helped with airfare. It wouldn't have cost me much at all. I found a satisfactory team here so I cancelled my appt. but know they're an option if I need them. I encourage contacting the American Cancer Society if cost is what's keeping you from better treatment.

Since I'm retired, I have lots of time to do research. It's hard to relax with ILC, as we're just now learning about the differences between it and IDC. I use my spare time to read up on it; probably too much time; honestly. And after reading studies, since I'm almost 60, I don't know how many treatments can make it from early research to treatment of choice within 10 years. This cancer is attacking younger women too. I think it's the hormone connection. But it takes a long time to worm through early trials to final FDA approval.

My belief after it all is that the best way to beat cancer is to focus on being happy and having a good quality of life. I was stressed, sick and sad when Cancer took hold, so appreciating my days and making a point focusing on the good in life is the best preventative. I've finished treatment and declared NED so it's time to let Cancer ride in the back seat.

I'm not here as often, however do want to help woman with ILC make successful treatment decisions. Dr's who don't differentiate ILC from IDC suggest ineffective chemo's, and may not make the best Tx decisions. It's important for women to have a place they can come and get answers to their questions

614

Dear Leslie:  Yay for NED!  Congrats.

artistatheart

Shetland, Yes I have had a hard time feeling super confident with my Onc. I think part of that is because I have been so well up until my Dx, I didn't have a lot of experience relating with doctors in general, and therefore feel a bit intimidated. Especially now with such a serious predicament. Between this and work I feel pretty overwhelmed. I haven't had enough time to research and compile questions for her that would give me a better idea of her knowledge base specifically with BC. My counselor at my center, who I like and trust very much, highly endorses her. She told me she was a brilliant and outstanding doctor and an extraordinary human being. I have a week off starting today and plan to get a whole list of questions together and really pick her brain next Monday. Then I think I will have a better idea of what I should do. If I decide to consult someone else the town next to us has a large cancer center I could utilize and is close enough to commute from here. Thanks for caring Shetland, I certainly do not want to continue to feel ambivalent about something so important.

614

Dear ArtistAtHeart:  You must have felt completely blind-sided by being totally fine and then, all of a sudden, you were diagnosed with Stage IV ILC breast cancer.  That is unimaginable.  I wish you the best.  I have heard amazing stories about Ibrance.  Ibrance works.  Hopefully, you will be NED.  I am praying for you.  Work plus a cancer diagnosis/treatment is totally overwhelming.  I am glad that your MO is well respected and that she comes highly endorsed.  It is also good that there is a cancer center in close proximity to where you live. Good luck at your appointment with your MO and enjoy your week off. 

lulud471

Having a colonoscopy Tuesday due to GI symptoms. Do you all think that the medical people need info on ILC, so they know what to look for? If so, anything official I can print out? I'm just worried that they won't know the weird ways that ILC can present and won't see it for what it is. Thoughts?

fizzdon52

lulu I've often wondered that myself with the various tests I've had. Surely they would know, but how can you be sure? Maybe you could ask your Doctor just to reassure you? One other thing I've always thought about is if it does spread, does it still present like lobular breast cancer, with long spider like fingers? I must ask my Oncologists next time. Good luck with your colonoscopy.

lulud471

fizz, I asked that same question - does lobular mets present like it does in the breast (spider like fingers) - and was told yes it can.

warriorwannabe

I have my 1st appt with the MO this Thursday and feel like the Lion on the Wizard of the Oz (and the MO of course is the Wizard). My BMX had clear margins, my ILC was multifocal 4.7cm with lymphvascular invasion. My ILC is ER and PR positve My SNB showed micro mets so no other lymph nodes were removed. Surprise - I had a super small IDC in other breast so I was wise to choose the BMX. Im terrified of chemo. Hell, I dont even want Tamoxifen. Wish me luck Thursday!

lulud471

best of luck to you warriorwannabe! Keep a warrior spirit when you can!

artistatheart

Thank you so much 614. Yes, it was a shocker to say the least. I still feel fairly well, I ski and bike ride for now. I am terrified for the day all of this will not be possible. I am a fiercely independent woman and can't stand being pitied and a patient. It's a whole new role I never thought I would find myself in, (this early in life anyway). I just hope and pray that luck helps the AI Meds keep me going for a very long time....I actually had to stop Ibrance as it made my liver enzymes elevate. I hope to see if I can return to it at a lower dose someday. Now I am on Faslodex which is a very easy med. So trying to enjoy the good days while I can. Best of luck to you too and I hope your Tx kicks cancers Butt!

614

Thanks.  Good luck and best wishes again to everyone here.

clj57109

Well surgery was on April 11th, I had left breast mastectomy and 4 lymph nodes removed. Directly after surgery my fiancé was told my lymph nodes were clear. Today I had a call and found out with further testing 3 out of 4 lymph nodes were positive for cancer. I am waiting for the pathology report to be able to describe the characteristics. This is very disappointing news for me. I was hoping that they were clear as stated but of course no such luck. I now have to return for surgery on the 27th of this month to have more lymph nodes removed and tested.

sueinfl

I am so sorry, clj. I had the same results after my bilat w/immediate recon back in 2010. Initially, clear sentinel nodes. Woohoo! Until, two days later after they had been stained and micromets were found in two of them. That's the b*tch about lobular. It takes staining which takes two days to verify either positive or negative. A double shock to the system since I had 6 rounds of TAC prior.

I wish there were a way to do the sentinel nodes first when lobular has already been found during initial biopsy. Then the surgeon would know to do a more thorough job of tissue removal and whether more nodes were needed for removal.

This is just another bump in the road, clj. I hope they make a complete genetic inventory of the cells to determine the next best course of action. Wishing you strength and peace through this.

Sue

614

I am so sorry regarding your sentinal lymph node results.  I wish you the best.  Good luck.

MFalabella

I am 44 and diagnosed two weeks ago. I am overweight, at 5'6 and a non smoker. I drink occasionally.