ILC - very slow growing???

jessie123

A friend of mine had ILC and was told by two of her doctors that she had probably had it 7 or 8 years. Her tumor was 2.3cm. I read someone on this board also mention that same thing. So sounds like ILC is very slow growing. Has anyone else read or been told this? If it is true why does it seem everyone has surgery within a month of diagnosis? Seems like we should be given more time to make decisions.

Veeder14

Hi Jessie123,

I was told ILC is slow growing and also difficult to detect because it’s flat not usually a lump you can feel until bigger. Also hard to detect on mammogram and ultrasound. That’s why I had a breast MRI and it showed up at 5 mm size.

I was eager to get it out ASAP however I had to advocate to get surgery sooner than later. I think patients should have plenty of time to consider their options, get second opinions, etc. but if the cancer has spread to the lymph nodes I’d be in big hurry to find out and get those lymph nodes removed, and get treatment.Hope this info helps you.

Meow13

Mine was slow growing but like other types it can be fast growing.

Anonymous

Either slow growing or hard to detect, which means it was hiding from self-exams and screenings like mammograms. That's the nature of ILC.

Claire in AZ

RobinLK

It depends on the type of ILC. PILC is aggressive, as is Triple Positive ILC.

jessie123

Robin LK -- Wow - that's scary. I've been diagnosed with Lobular, but none of the extra's were diagnosed. Will have a second biopsy. How was your lobular found? Did you find a lump or was it mammogram? Sounds like you're doing well now.

Dani444

One of the physicians I work with is a pathologist so I had him look at my pathology report. He did note that mine was considered slow growing. When the final pathology size was determined to be 4.8 cm I did ask him how long he thought it had been there. His answer was years.

jessie123

Dani444 -- I know, that's what I keep hearing. So if we are diagnosed with the slow growing kind we don't have to "rush" into surgery. I see people on this board who are diagnosed and have mastectomies a month or a couple weeks later. It has taken me a month just to learn enough about this cancer to understand the doctor. I need time to make decisions. Also, second opinions are important and that takes time. The facility that diagnosed my cancer wanted to rush me up to talk to the surgeon immediately while I was still in shock. People are taken advantage of that way. I'm using a different surgeon at a different hospital.

Anonymous

jessie123, I waited 1.5 years to get my BMX with immediate reconstruction. I had the lumpectomy as my biopsy, did 5 months chemo and 6 weeks rads, and took tamoxifen while I decided what to do about getting a BMX. I found that I just didn't feel safe relying on scans--and wasn't sure my insurance would always pay for breast MRIs, which is what I would have asked for had I kept my breasts. My PS wanted my skin to recover completely before he did the surgery, and it did--no problems. I stayed small, like a 36B/A since that was what I was before, so it was a fairly easy surgery for him to accomplish and the results turned out nicely.

I also have a tendency to freak out with worry every time I see my MO (every six months now), and knew I didn't want the added worry of getting scans and waiting for the results.

The last MRI I had, post BMX/recon, showed no detectable breast tissue, which still doesn't mean I'm 100% in the clear, but it was sure reassuring.

Hope that helps...

Runrcrb

ILC is typically harder to find than IDC. I found a lump and the follow up MRI found the ILC. “Sneaky” is what my oncologist called it and one of the reasons we did the full treatment of mastectomy, chemo and radiation. I was able to have a nipple sparing mastectomy but it was not 100% certain until my surgeon was in there.

The grade and ER/PR/HER2 status have a lot to do with treatment recommendations snd speed. While cancer for me was a medical crisis it was not a medical emergency. I’m glad that it was two months between diagnosis and the start of treatment as i was at peace with the plan

jessie123

Clair --- that gives me something to think about as I also want a lumpectomy, --- just because I'm terrified of general anesthesia. I don't mind loosing my breast - in fact it may be kind of nice because mine are large and I'm tired of them -- I'm also a widow -- lost my husband to cancer when I was 53. If I can just get over the anesthesia fear I'd have a mastectomy in a minute. As you said the constant monitoring sounds terrible if I have just the lump out.

runrcrb --- Was the lump you found the IDC or the ILC? My second biopsy is in the morning because the original pathologist couldn't determine the grade/estrogen/prog or HER2. My tumor according to ultrasound is just 1.3 cm, however reading this board has educated me enough to know I need the additional tumor information. So I'm still waiting. Once I have the MRI and additional path reports I think I won't have to make the choice -- it may be made for me. Of course I'm still hoping for benign -- praying first pathologist made a mistake. Wishful thinking.

RobinLK

I am doing well and have been NED since my lumpectomy. I found mine and ultrasound, MRI also saw it. There are so many factors with treatment. Lymph involvement, ER//PR/HER2.... omcotype or mammaprint will depend on the prior factors, genetics can also play a role. ILC can tend to not have clear margins with lumpectomy and may require further surgeries. My margins were clean but too narrow. I had a mastectomy as there was not enough tissue for a second lumpectomy. Everyone has a different experience. I have been followed closely due to many different reasons and did not have bilateral surgery even though ILC tends to be in both breasts. There had been no evidence of disease anywhere so that is what I focus on. Every 3 months I go in for scans and follow ups which can really pluck at one’s nerves. However, I am still vertical and facing each day as it comes!

Anonymous

Hi again,

I lost my husband to cancer, too, when I was 37. So I was already scared, and didn't have a lot of trust in my cancer center here...my husband's treatment at that center wasn't the gold standard best, so I actually drove an hour each way to another center in Sedona for all my tx, even radiation.

My BMX surgery was kind of a non-event. I don't remember any pain -- was in the hospital 2 nights but probably could have gone home after 1 night. I only remember having to sleep on my back on a wedge pillow for a few weeks because I couldn't lie on the surgery scars.

I understand the fear of anesthesia. I always talk to the anesthesiologist every single time I have surgery, and tell them my fear of not waking up, and they always assure me that I will, tell me what drugs will be used, and how much, etc. And I always do wake up.

jessie123

Clair -- Bob died in 2002 and luckily I was pretty comfortable with computer research so basically I became completely involved with his treatment. His cancer was misdiagnosed at the same hospital that just screwed up my first biopsy. The hospital wanted to do stem cell transplants, but I said no to that --- I found a hospital that specialized in his cancer in Little rock Arkansas so we went there. After a week of testing they said he did not have the diagnosed cancer. We came back home and his type of cancer was never diagnosed. He had extensive mets in his spine and pelvis so you can imagine his pain. I think I developed PTSD from that - just kidding, but I've never gotten over the horrible experience. I no longer blindly trust doctors. However, the teaching hospital I am now using I do believe to be pretty good. They have a very large cancer center. Had my second biopsy today --- things seemed more professional -- it did hurt a little. Still have to have my MRI -- so I have no idea if I have cancer in the second half of the breast or the entire other breast. You were way too young to experience the death of your spouse. That must have been horrible for both of you.

HeyLady

yes, lobular is very tricky to diagnose I have mammograms every 2 years the last one (March 3018) indicated suspicious reading Ultra sound and MRI indicated all is fine A biopsy showed LCIS, After apppointments with surgeons I opted for bilateral mastectomy with immediate breast reconstruction to prevent getting breast cancer. Surgery was 6 months after LCIS diagnosis, unfortunately pathology report showed Grade2, Stage 1 invasive tumour. Surgeons are convinced it was there 6 months ago and got missed on biopsy, ultra sound and MRI. I’ve learned that lobular is less than 10% of breast cancers.

With no breast tissue the lymph nodes cannot be tested. The cancer clinic refers to me as coming through the back door as most people have a diagnosis then treatment I had surgery then a diagnosis.

My Oncotype score is 14 oncologist recommending arimidex for me Chemo not recommended and as I have no breast tissue cannot do radiation.

The unknown is my lymph nodes it does cross my mind that I should have requested another test before surgery but who knew the lobular was invasive

jessie123

That is terrifying -- They found mine on ultrasound, but they only used the ultrasound on the half breast that I felt the lump in. I'm now scheduled for an MRI, but why not ultrasound both breast first? Maybe ultrasound is too cheap and the hospitals make big bucks on MRI's. My mood is beginning to sour with all these tests and waiting (-: You shouldn't have to ask for another test as the doctors are supposed to be the pro's. However, I am learning that we do need to read, learn and speak up because this is serious. We're just not use to that.

Kstinekd

Hi all. My ILC never showed up on years of ultrasounds nor mammograms. I found a lump. There was a bit of something that showed on an MRI after the lump was biopsied, so they thought it was a 2cm tumor (I had three hospitals look at my images; Sloane Kettering even offered just a lumpectomy bc the tumor seemed small on the MRI). After a bilateral mastectomy they discovered that it was a 10cm tumor. (That is big) In the MRI and in the OR tests, my lymph nodes presented clear, however, when they were analyzed in pathology, two of them had tumors and two had cells (They only removed four). I am the poster-girl for how sneaky ILC can be!

jessie123

Oh dear -- that's also scary. I think I'm becoming convinced to have a BMX. It seems that is what everyone is having even when their diagnosis doesn't seem severe. I also found a lump that ultra sound measured to be 1.3 cm. Do I believe that --- nope - not anymore.

dakrock

Jessie that is so scary.   I just had a mammogram of my left breast and then they took me back for a ultra sound and said no worried only cysts.   I had a mastectomy in February of this year and it was ILC. then 5 months later a melanoma on my face.  I have quite the scar.  They reviewed past mamo and said the cysts were much larger and now they are smaller.  I 'm thinking they are responding to the letrozole that I have been on since December of 2017.  I think this could be ILC in the left breast.    I'm starting not to trust anyone that does these test.

Anonymous

Hi there Jessie,

I have PTSD as a result of being his caregiver and losing him so quickly at such a young age. My family was sympathetic but no help--no one had ever done the hospice path before or had anyone die at home, and so Bill and I made all those choices on our own. I had no role model for any of it. At 37 I was the family role model.

No internet access for us in 95-very few people had any way to research other than a library and what we got from our medical team. I remember when we found out he had been dx as terminal, six weeks after we married, walking into the library and coming out with a stack of books 2 feet high--like grad research.

I look back a lot, now with the information I have, and regret that we didn't do half the things we could have done. We eventually fired his MO because he was so awful, both bedside manner and tx path. I was in a daze for nearly two years, but eventually found a good man--a miracle--and we are going on 20 years of marriage. I guess, being young, I was able to bounce back.

Claire in AZ

princessfluffybritches

talk about slow and sneaky. My mammos never showed anything but some dense breast tissue. I had gone to see a dermatologist about a growth on my thigh and it came back with ILC. Sad day. It's slow growing and my current doc says that's good and not so good. It grows slow. But slow growing don't respond as well than faster growing cancers to the meds.

Luckily my PET scan #2 shows improvement from #1. It's relief but not-know what I mean?

Meow13

princessfluffy.., did you ever have a tumor in your breasts? Did they do a breast mri? My cancer was also slow growing mitotic score of 1.

princessfluffybritches

meow, I believe I have a mass of thick tissue that was not noted to be ca. On mammo's. No tumor. On mammo and mri, it did not show up. But with PET scans it's noted to be slow and believed i've had it for a few years already.

Meow13

oh very different than mine. I had 2 tumors one ilc and one idc.

Bcky

I was so very careful in making sure to get my mammograms starting at 38 yrs old because I had dense breasts. I also had a daughter of my great uncle die from breast cancer when I was 12. I wish along the way that someone had said that it would be better if I got ultrasounds. Ultra Sounds are much more effective in finding BC in the breast. I was the one who found the lump about a week after getting a thorough breast exam by my GP. The pathology said it was two tumors knitted together. DCIS; IDC and ILC. I had been getting mammograms coming back clear all along when in fact I had breast cancer growing in me. The ILC I knew was bad because the Physicians Oncologist assistant looked at me sadly and said we found ILC in one of your tumours. I just have had a hysterectomy and I am ever so glad that my ovaries; uterus; fallopian tubes and cervix were clear of cancer. I read allot about ILC when I was first diagnosed. Every time I have a weird symptom I think that the ILC has arrived to kill me. If I have bloating or diarreah I think it is ILC. Spots in my eyes...I_LC. Memory problems...ILC..Bone aches...ILC My oncotype score was 11. I did not do chemo because the stats said Tamoxifen would actually be more effective at treatment. I did see a chemo onc on first diagnosis that told me despite my low oncotype score that if I did not do chemo I would be dead in 8 or 9 years. I am 4 years NED. The hysterectomy has given me time off from work. It has given me time to reflect and catch up on things. I am reflecting lately on how I was treated during my cancer care. I could think that that oncochemo therapist doctor cared enough to say what she thought or I could think what a stark and unneccasary frightening thing to say to someone. My oncologist said it was my decision to make because my onco type score was so low. Personally I am not sure if I made the right decision. I did not do chemo. I opted Tamoxifen for 10 years and MX; no rads. I made the best decision I could at the time. If ILC comes back to get me I will regret not doing chemo. I get an MRI every 6 months but soon it will be only once a year. I think the MRI is really the only thing to trust in finding ILC before it spreads everywhere. Maybe I am wrong? I had three dear friends die in BC group. I keep feeling like I am escaping the grim reaper. The shadow of cancer is bad enough to be haunted by but ILC really is scary as it grows in sheets like I was reading in this thread,

Meow13

Bcky, I am not sure why you are particularly worried about the ILC. I also had 2 tumors one idc and the other ilc.

My oncodx score was 34, not sure which tumor was selected my tumors didn't have progesterone receptors but were 95% er positive. My tumors were separate and I did not have node involvement. I did four years of aromatese inhibitors. I am 7 years NED. I said no to chemo but I was 53, so older than you.

ILC can be harder to detect than IDC but it isn't anymore deadly. I also have extremely dense tissue so I have mris every year as well as a mammogram. My oncologist told me the MRI is necessary and will spot growing cancer so I continue to get them. I really don't think about the ILC being anymore dangerous than the my IDC.

jessie123

BCKY--- that is what my diagnosis is --- it's not lobular and it's not IDC --- it's called IDC-L or mammary lobular LIKE. The tumor just has characteristics of both kinds of cancers, but is not either. It represents only 3 to 5 percent of breast cancers and the prognosis for that kind is better than IDC or Lobular. I think we might be lucky on this one. I was also first diagnosed with Lobular, but a second teaching hospital diagnosed "lobular Like". It must have more than one name as it is so rare, but I think the medical community calls it IDC-L. I'll try to add a pub-med study on this cancer just published in 2018 on the mixed cancer section of this web site. Mammogram didn't show mine --- ultra sound did. I found the lump myself.

Bcky

Meow and Jessie thanks. I just always thought ILC is more apt to metastisize. Happy New Year Ladies!!!!

IllinoisNancy

HI,

I was dx with PILC in October of 2006. My oncologist and breast surgeon told me pleomorphic invasive lobular carcinoma is just different but not worse than ILC. I have clung to that thought thru the years and happy to say I'm here and doing well. My case is so complicated it would take pages to bring you up to speed with me. I just want you to know that PILC is not fast growing in all cases. Happy New Year!

Nancy

wallycat

Nancy, thrilling to see your post!!!! May you have a wonderful 2019 and more!!! ((((Nancy!!!))))))

beth1965

Jessie I had slow growing turn aggressive. It grew slow for 7-8 years or more and started growing weekly it was crazy. I had large tumor and lots of nodes they operated in under two weeks and then chemo and rads to follow.