ILC and Mets

Kleenex

Hi, ILC ladies!

I have an upcoming appointment with my oncologist - I see the actual doctor herself only once a year, and the PA at the other six-month appointment. Last time I saw the doctor, I asked about in what body locations ILC would spread if I ever developed mets. I remember she said immediately and quickly "bones, brain" and another location that escapes me. Since then, I've read that actually ILC mets to different places than IDC - perhaps abdominal locations? - and not necessarily to the bones or brain. Does anyone have a link to official information about this?

Also - has anyone had luck finding an oncologist who "knows about" ILC and/or sees it as being different from IDC?

tifan

Hi, My oncologist told me that ILC is most likely to spread to the bones, gastrointestinal tract, and "female parts" (although I think he used a more appropriate medical-sounding term for female parts of course).  He said he wanted me on Zometa due to the fact that it is more likely to spread to the bones, and thought I should have a colonoscopy before age 50, just to be safe.  So I feel as if he has taken the time to learn about ILC, he is the sort of dr who is curious, I think, so I don't know how many ILC patients he has, but I am very happy that he seems to have some specific knowledge about how ILC is different than IDC.

nash

Kleenex, here's a good article on ILC mets:

"Metastatic Lobular Carcinoma of the Breast: Patterns of Spread in the Chest, Abdomen, and Pelvis on CT"

http://www.ajronline.org/cgi/reprint/175/3/795

In general, I've heard that brain mets are more common in triple neg and HER2+ patients than in ER/PR+, HER2- patients, which is what most ILC girls are.

I had a baseline colonoscopy at age 40 b/c of my history of ILC.

Kleenex

Sounds like there's a colonoscopy in my future! Yee-haw! Who orders that? Oncologist or gynecologist? I don't really have a primary care physician. Prior to BC, I had a cervix that would whip up freaky cells now and then but nothing else wrong with me, so I mostly just saw the gynecologist. Now I mostly see oncologists...

IllinoisNancy

Hi Kleenex,

I had a colonoscopy in 2002 and my GP had ordered it to see why I was having bad stomach aches.  Ended up I had a gallstone the size of a golf ball.  My husband is a golf coach so I blamed him, ha ha.  Anyway, I have always heard that ILC can go to any of the normal places such as brain, bone, lungs and liver and in addition to those places the stomach and female organs.  We are just so lucky that the docs have to check EVERYTHING on us.  I'm hoping all works out well for you!

Take care,

Nancy

llanabeth

I was diagnosed with ILC in January*ish* and am getting results of a bone biopsy this coming monday, there was no organ involvement, just activity in my bones for which a CT Scan with and without contrast, an xray, a MRI and a Bone Scan were not able to say for sure if it was mets.

The activityis in my pelvis, femur and spine.  Still hoping on some sort of Arthritis or Paget's.

Kleenex

It always annoys/horrifies me that they can't seem to use any of these screening technologies to REALLY see what's going on inside. I hate that to see inside, they have to GO inside. A bone biopsy doesn't sound like a lot of fun - I hope it wasn't too bad, and I hope that you just have Arthritis...  Was the activity found as they were checking you prior to surgery? I had a bone scan and a CT scan after having breast MRI's done before I was scheduled for surgery - allegedly to make sure everything else was okay for surgery but I do realize they were casually looking to see if it appeared to be anywhere else.

I hope you get good results on Monday!

Coleen

Gitane

Tamara,  Unbelievable that none of the scans and tests can tell your doctors and you what you really need to know.  I've read that often on these boards.  I know nothing about bone biopsies from personal experience, so I can only wish that yours is uneventful and painless.  Even more than that, I sincerely hope that it is nothing to be concerned about. Hugs!

konakat

Hi Kleenex -- I'm an ILC girl with mets.  It first went to my liver, then bones, and most recently brain.  It seems that BC, regardless of type, goes to the same body bits.  Lungs is another one, but so far mine are fine. 

matic22

Hello dear ladies!

I just want you to know that from my medical experience I have not seen a single patient with ILC that mets would show up in brain parenhima. I have seen triple negative and HER-2 positive lobulars that went to meninges, but not to brain!!!!That is different spread!ILC is really a different type of cancer biologically, recently many studies are being done on ILC, also it should be known that the new grading system is being done, becuase the B-R-E grade system is not suitable for lobular.As far as other parts of metastatic spread of lobular is concerned I have many patients with bone metastases, also liver, but also many of them have peritoneal carcinosis and pleural effusion.So it is really not a rule in terms of which organ would be metastatic.I think it is better not to think so about this metastatic spread because it means you have no life,if you think all the time about when and where it will spread , you have no real life.-And remember-what we think, we get or we are!::!!

I also believe a breast cancer patient with lobular histology needs to have a very good hormone therapy(if hormone dependent) and also zoledronic acid(according to nowaday studies) to prevent those dormant tumour cells to spread somewhen in the future. I think it is good to take  antihormonals at least for 9 years if node positive ILC (recent studies).

Take care and kind regards from Slovenia:)=

MATIC

Gitane

Hello Matic,  

This is such a coincidence that you posted here.  Just one hour ago I watched a program on television about a violin maker in Slovenia.  He was amazing, and I got to see a great deal of the town where he lived and hear the music and language of Slovenia.  I thought about you.  Then I came here and there was a message from Slovenia.  I ask you, what are the chances?!  

You know, Matic, I know focusing on cancer is not good for me.  However, I wonder if it is reasonable to ask a cancer patient to not think about cancer, and cancer coming back.  Is it possible?  Has your mother achieved this?  Have your patients?  It's one thing to know it's the thing to do, but it's very hard to do it, at least for me.

Sometimes I think if I were around people with more experience of life, older women who have "seen it all" in their lives, I would be able to talk to them, spend time with them, and get more perspective.  My husband's aunt had breast cancer 30 years ago; she's 85 years old now.  I got to meet her and talk on a trip we took 2 years ago.  I told her about how my life changed with this diagnosis.  She said that it was very early times, that I would adjust, that she remembers the feelings but they are gone now.  Of course she survived, so that would help!  She and her husband have first-hand experience of war, and have seen death many times.  She told me to not work at getting past it, just let the feelings come.  I would move on in my own time, when I saw the futility of my worry.  I'm amazed at her zest for life.  Anyway, she helped me.  

When I asked my oncologist what to expect if it metastasizes, he said, "ILC goes to the linings of things", then gave some examples.  It seems that my pleomorphic ILC is not like most, low ER level, almost no PR, yet slow growing.  Does that make me an almost triple negative?  It's very interesting that triple negative and Her2 positive may behave a bit differently.   I will keep taking my Femara even after the 5 years are up, even with the low receptor levels.  How many infusions of Zometa, at 6 month intervals, is considered the best now?  Does one start on an oral bisphosphonate after stopping Zometa?

As always, your posts are full of excellent first-hand knowledge.  Thank you for coming here and helping us keep up with ILC. I hope you don't mind such a long post.  

With the kindest thoughts for our friend and oncologist in Slovenia, and her mother, too.

Gitane 

matic22

Hi dear Gitane:)

I am very pleased to hear that about violine and Slovenia:))now you know what language we have:)it is difficult isnt it?:)

Well, I had once a big discussion with my mum about cancer and livnig beyond cancer and have to say I believe she really has gone through this.So, I am glad it is so alike.-Sometimes we discuss about those days in early 2004 when she was diagnosed, but that is not good! 

I think that everyone that has had cancer needs to go through diagnosis, becasuse it if comes back, it just comes, and then you will bottle that again and not every day.

my patients are very variable, some of them think of cancer, some of them not.

I suggest that you live a real life, with love and respect to yourself:)

I think your lobular is not triple negative, triple negative would be ER 5% or low, PR 5% or low AND HER_2 0.

I believe Zometa is now considered to be given at least 6 times. so for 3 years on 6 months period. for prevention of metastatic disease.

As far as now is known it is not given oral bisphosphonate after stopping Zometa.

I hope this helps.

I will keep in touch.it is always so great to hear you are doing well, my lobular ladies:)

Kind regards from warm Slovenia:)

Matic

YoYo44

Hello Matic,

It is nice to hear from yu again, I have read many of your posts and I always appreciate your expertise.  There are so few Oncs who really differentiate ILC from IDC and actually having you here on this forum is greatly appreciated.

I am curious about the new staging system.  Do you have any references to this?  I know there are issues with staging ILC so I am curious what is considered significant for ILC.  But then again, I am also curious what the intent and purpose of it is since generally ILC is still treated like IDC, which is the clinical gold standard for treatment.  Anti-hormonals are emphasized but chemo is still largely the same, and not many ILC ladies would forego chemo.  I am hoping that soon treatment for ILC will be more focussed on specific makeup.

All the best

Yo

Gitane

Thank you, Matic.  I will listen to your wise words!  G.

susaloh

Now here´s my story:

I´d read that ILC can spread to the ovaries so I was always relieved when my Gyn had a quick look at them while checking my uterus lining, which she used to do every 6 months because of possible side effects of Tamoxifen. I asked every doctor I came across (at least 5 or 6 including my sister) whether I should not have my ovaries taken out, just in case, and all of them said, no way. Well, then my gyn for once skipped the uterus checkup, since I´d been switched to Arimidex and we had trouble with that and tumor markers were rising. I asked, shouldn´t you have a look like you normally do and she said, next time. Well, next time was in Febuary and what did we see the very moment she started the u/s? A large perfectly round mass behind my uterus, they couldn´t tell what it was. I was transferred to the University breast center and another 3 doctors looked via u/s and came to no conclusion. But they took it out the next day, and it turned out to be a 8 cm met of my ovary or of what was left of it. The other ovary still looked normal but was also tumorous. Very very unusual, they said, for bc to metastize first in.  Only my sister finally looked it up and said, that indeed ILC did go to the ovaries sometimes. So much about special knowledge about ILC.... 

rreynolds1

I was advised to have my ovaries removed so I have an appt with my gyno later this month to discuss it.  I'm 59 so I really won't miss them.

Roseann

Kleenex

Oh, Susaloh - I'm so sorry about your sneaky tumor! How awful to be looking regularly and then to look away and have one pop up!

I hate that they don't know most of the time why we get this, and they're not sure who might experience a spread or to where, and they don't deal with ILC separately...

JannaC

Wow,  I had one ovary removed when I was 30 because of a benign tumor.  I still have one ovary.  I'm 58, but my doctor has prescribed the E-ring for dryness.  Is that wrong?  There are some patients having their ovaries removed and yet I'm taking Femara and using an E-ring. Also, I had an oncotype of 19 but still didn't do chemo, just radiation.  Crazy? 

karen1956

Had ooph 3 1/2 years ago....just sent in Rx for estring....gyn talked about it last year for vaginal dryness/atrophy....onc is okay with it.....I am currently taking a respite from AI's after 3 1/2 years of enduring side effects....

My onc only treats BC patients, so I'm confident in his knowledge.  He has not recommended Zometa as I am on Actonel and he feels that the oral biophosphonates provide good benefit....at least it has as far as bone density.....he too has talked about staying on AI's for 10 years (instead of 5), but the side effects have been so bothersome.  I've been off the Aromasin for 4 weeks now and I see a difference especially in the area of mood and cognitive functioning....also joints aren't as sore.....still have other side effects....hoping over the next 4 weeks more will subisde...not sure what I will do when I see my onc again the middle of May.....I really don't want to go back on the AI's but I know he is going to want me to...but QOL has to be worth something.  I guess my head is in the sand....but I realize that I do put myself at increased risk for mets without the AI's...but then again, I know someone with mets that developed on AI's....so no guarantees!!!  After I was Dx, I joked that I was getting the "blue plate special"...bilat, chemo, rads, ooph and AI's and be followed by my onc for the rest of my life.....At 4 years out I am still on a 3 month schedule, but since he gave me a 2 month reprieve from the AI's, there will only be 2 months between these two appt....wonder what the next schedule will be...guess it depends what I do regarding the AI's.....oh well....

Lisa123456

It doesn't look like zoledronic acid (bisphosphonates, "Zometa") works well to prevent recurrence (see A trial looking at zoledronic acid to try to stop breast cancer coming back (AZURE) ).

Anonymous

Here's another treatment that I've been following lately. Metformin, commonly used to tx diabetes, shows promise in whacking recurrence of certain kinds of bc (hormone +/her-2 neg). It seems like it helps recurrence in those who have comorbidity with diabetes, but I've found that it seems to help recurrent patients even those without diabetes.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC450444...

jojo9999

I have been interested in this research as well. Does anyone know how metformin works for diabetes?

KayaRose

hi all, thought I'd jump in on this very interesting thread since my cancer is also ILC. I have just had my first shot of Prolia. It's given for osteoporosis but clinical trials has also shown it to help prevent spread to the bones. It's given twice a year. Like everyone else, I'm willing to try anything that has the potential benefit of stopping the spread of this awful disease. Has anyone else's Doctor recommended Prolia?

I've also read about metformin and am interested in taking it. I believe because it helps control glucose levels it may help prevent spread. Glucose seems to feed cancer cell growth. Anyway, that's what I got out of reading several articles. My MO won't prescribe it for me so I'm going to try my PCP.

I'm also trying to convince my doctors to remove my right breast. My MO does not feel it's right to remove a "healthy" breast. But I want it gone. I just had a mammogram and ultrasound and was a nervous wreck. The radiologist said I have extremely dense tissue. Have you had both breasts removed? Any opinions about it one way or the other?

Thanks everyone

JohnSmith

I'm also curious about Metformin.

There's a dozen 'open' clinical trials evaluating Metformin against all types of cancer.
We discussed some of this in the Metformin thread: "Metformin-Anyone on this trial?"
In breast cancer, our best hope at a conclusive answer is this trial: "A Phase III Randomized Trial of Metformin vs Placebo in Early Stage Breast Cancer".
Interestingly, this Phase 3 Metformin trial "completion date" was slated for Dec 2016. BUT, it has been extended (again!) to July 2020. This is extremely disappointing as we were hoping to have trial results by early 2017 and assuming the results were positive, our Oncologist would add this to the therapeutic mix. (Combination therapy, despite the potential for increased toxicity, is our current best approach at blocking numerous cancer pathways.)

As noted in the other thread, Dr. Watson, awarded the Nobel Prize for helping to discover DNA's structure, thought that Metformin would be more useful for Triple Negative subtypes. Who knows? At age ~88, he personally takes Metformin daily, based on his belief that is has protective effects against cancer.

Off topic. For those on Facebook, an ILC group has been established.
Feel free to join: www.facebook.com/groups/Lobular

lulud471

Hi everyone, I've had hip pain for the last few months and went to oncologist who ordered bone scan. Since it's ILC, I know it can be sneaky & if it is bone mets, may not show on bone scan? If results of bone scan are clear, should I ask for MRI or something else to confirm no mets? If he doesn't seem open to the idea, should I present some type of research showing that MRI finds ILC better? Sorry if I'm not making any sense!

Anonymous

Lulud471, let us know how it goes. I have INTERMITTENT hip pain on my left side, it's called tronchater bursitis, probably brought on by my AI drugs that I take, which cause sporadic joint aches, plus wearing the wrong shoes to hike in. I think it's more serious if any pain we feel is chronic, doesn't go away with a couple of advil, and gets worse over time. Mine did not.

mary625

i have been on Metformin since ending neoadjuvant chemo. I just finished the last of six Zometa treatments...I could not get on those until two or so years after treatment as its pretty new. I know that I am an n of 1, but I am about to celebrate 5 years. Onc is not going to mess with my chemical cocktail at this point.

Leydi

Interesting thread! Metformin is a medication for Type 2 diabetes as it works by reducing insulin resistance, which means the body's cells resist opening to receive the glucose in the blood when the insulin comes knocking. It is not typically used for Type 1 diabetes as their primary issue is lack of insulin, not insulin resistance.

I do have Type 2 and was originally prescribed metformin by my GP. I took it for a couple months and then was doing so well with controlling my blood sugar with diet that I stopped taking it. I think I will seriously consider re-starting metformin once I am past chemo. I'm already going to be starting tamoxifen and AC-T treatments at the same time, I don't want to add one more thing to this course right now!

The main side effect of metformin is stomach upset and diarrhea. If you decide to ask your doctor about it, know that the extended release formula is usually much better tolerated. Also, you can and should start with a smaller dose and once accustomed to it, then you can increase the dosage. A starting dose is 500 mg once a day and this can be increased up to 2000 mg per day (often split between morning and night). I do not know what dosage the cancer studies are using, so that would need to be researched.

lulud471

Bone scan shows no evidence for bone mets! Arthritis only! But it showed arthritis almost everywhere so why is only my hip hurting?! Who knows.

stellamaris

Hi Kayarose, I have been prescribed Prolia. It was based on my bone density test that showed osteoporosis/osteopenia. I was told by my MO that it was needed to offset the bone thinning side effects of Letrozole, as well as the trial that showed it reduced the rate of recurrence. I will get my first shot after my vacation, since I don't want to risk side effects when I am away. My doctors also wouldn't take my 'healthy' breast. I just had my stage 2 balancing reduction on my good breast. they will do a pathology on it, which is the only sure way to know it is clear. Sending best wishes to all

Nopoli

Kaya Rose, I was diagnosed with stage 1 ILC this year after I had a prophylactic mastectomy of my right breast. At the same time, I had a mastectomy to remove what they thought was a 3 cm lesion in my left beast (nipple to chest wall). Images of the left (us, 3D Mammo and MRI were showing a large invasive cancer but 2 biopsies showed high grade DCIS and LCIS, hyperplasia, sclerosis, you name it). So they didn't know what we were dealing with. Final answer would have to come after surgery.

I had had extremely dense breasts with stable calcifications (BiRad 4). The 3D Mammo showed nothing on the right side, but the MRI showed a lesion which the BS was not worried about at all--a fibroadenoma, they said. Because my Mom passed away from recurring, two primary metastatic breast cancers, I opted for prophylactic on the right.

Post surgery, the findings on the left were 6 cm of grade 3 DCIS, LCIS and cancerization of the lobules, embedded in a large sclerotic (benign) lesion, less than 1 mm margin in at least 2 spots, suspicion of micro invasion, isolated tumor cells in 1 of 3 nodes (highly ER positive; PR 10%; HER 2 -ve).

What's more relevant to your question, on the right side they discovered a 0.9 mm Grade 2 ILC, highly ER and PR +ve, HER2 negative. Followed up with axillary dissection on right side: 0/14 nodes. Yay! I was smart (in decision) AND incredibly lucky. I've seen way too many stories of stage 3 and stage 4 ILCs at original diagnosis. Oh I had also had a PET-CT scan no contrast, and there was mild uptake in left side but not on right ILC side.

Because Oncotype scores were in the low spectrum on both sides, no radiation or chemo were recommended (1 RO, 3 MO opinions). Only Tamixifen.

Insurance covers prophylactic mastectomy by law. Your body, your choice.I hope the long details are helpful. Good luck.