Did your ILC sneak up on you?

YearoftheHat

Hi ladies!  I am reading all these posts and am seriously starting to question some of the things my surgeon has told me.  She actually told me that ILC does not spread to other parts of the body; only very rarely and she's been doing this for over twenty years!  After the chemo port is placed I may not have to see her again.  I may sound bitter but I am glad not to have to deal with questioning her so much anymore.

Anyway, my ILC was very painful which I guess is quite unusual.  I had a bilat. mast. on Dec 1 and woke up feeling like the sickness was finally all out of me - no pain from the lump.

My lump was discovered by my gyno during an annual.  I have to admit, I was not doing self-exams.  If I had it would have been unmistakable.  I had been having the pain and for some reason, cancer never entered my mind.  I'd had a clear base line mammo at 35 and another two years before this visit.  I thought right away it was probably a cyst.  I just felt so young and healthy.  I was really wrong.   

I went in for a mammo a few days after the lump was found.  The tech saw this huge mass then shuffled me out the door with an air of "don't call us, we'll call you".  I was in pain and was starting to get scared.  I called the place and asked why they didn't do anything more and was told to just wait.  Then I called my gyno's office and expressed my concern.  They also said to wait.  Well, I arranged immediately to go to a different place the next day where they would do a biopsy on site.  They got the results to me in two days which was great.  Lo and behold, it was malignant.  Luckily, I was able to meet with a surgeon that afternoon.  My gyno's nurse was quite testy with me for setting that appointment up before the Dr could see the first office's mammo report.  The first office sent me a letter ten days after my visit suggesting I have it looked into further.  I was very upset about all of that.  My gyno is well liked by many, nevertheless, I have found a different one.

I had a lumpectomy about two weeks later.  A week after that my surgeon finally called back with the path report and my ILC was multi-focal so she suggested a mastectomy.  During my recovery I still had a lot of breast pain where the lump had been.  After another two weeks I had done research and met with surgeons and had decided on my reconstruction, but I had to wait a little more than two weeks from then for the surgery.  My mast. wasn't done until two months after my diagnosis.  Is that a long time?  I think with the holidays it was hard to get anything done sooner but I was disappointed it wasn't given higher priority.

It also took my BS over a week to call with the mast. path report.  They had cut the lump in half during the lumpectomy so it's a good thing they went in and got the rest of it.  She didn't even realize that after the report came in, but I saw on the report that the position of the lump was the same as where they had removed the first one.   

Now I am healing and waiting to start chemo in Jan.  I met the onc last month and the lobby of that office was one of the busiest places I have ever been in this little city.  It was jamming and they rushed me in and out of there.  I feel like I am being run through a cancer mill.  Actually, I am sure I am being run through a cancer mill but that seems to be the standard.  At 20K a pop is it too much to ask for some individualized attention?       

I have gotten through everything OK so far and am gearing up for chemo, but I just feel like a number in all of this.  

Nancy

Mykidsmom

Nancy - I am so sorry about all that you have gone through, but it does sound like you have been a wonderful advocate for yourself. Keep on sticking up for yourself. And, yes, you definintely deserve some personal time and attention. Best wishes for a better 2009! - Jean

YearoftheHat

Jean,

Thanks for reading my long post.  I am looking forward to the day when this is all over and done with and in the meantime, I just try not to be afraid of it.  Thanks a lot for the support!

Nancy

sue_blue

Nancy, It does all happen so fast, especially since it's so emotionally shocking. Be sure to read the thread on how to prepare for chemo. I found all the advice and suggestions to be particularly helpful. I have been seeing two oncologist, one locally and one at a university medical center. This all seems so routine to them, but it really rocks our world. Try to have someone go with you to your appts. as I found it hard to take in everything they said to me. I'm about 6 months out from the end of all the treatments, except for the tamoxifen, and it still occupies a lot of my thinking. I've found these boards to be a huge support and source of information. 

checkum

excuse me while I vent a bit....

Yes - my ILC did sneak up on me.  I have gotten really confused and tired of all of the little references that are made by professionals about ILC.  So far everyone has told me that this is the "sneaky" one of all of the subtypes.  My first surgeon told me that this cancer was the one that you often see malpractice claims filed on.... this made me think that he might be just a bit paranoid about this. 

It also aggrivates me that many don't know alot about ILC other than it gets lumped together and treated like IDC.  So than why is it a differentiated subtype ??

 I have had a total of 5 different proffessionals all tell me that my profile is really "grey" - so grey that my cancer has not even been staged by the pathologist or the onc.  Should the tumors (of which they found 5 be added together for size or not??  I guess there is different thinking on this.

One thinks that the first surgeon cut up the tumor in pieces so that it is not truly multi-focal..

One thinks it didn't show on the MRI and one says it did.  One says it didn't show on the Mamo and one says it did.... and so on and so on.

I am scheduled to talk to my onc tomorrow (I am truly hopeing that somebody can give me the straight scoop).

All I do know is that on September 1, I felt great with the exception of a weird pain in my left breast.  On September 15 after a sonogram, Mammogram and 2 biopsies my world changed into a nightmare.

Is ILC painful - some say no - I say yes.

Does it spread within the body --- who knows?

Does it tend to be multi-focal ---- sounds like it does.

Does it tend to mirror itself in the "good breast" --- again, who knows?

Does it deserve more attention and understanding - I vote YES!

HensonChi

checkum....your story sounds as crazy as mine.  

1. Found lump under my arm and told it was a cat allergy...did surgery and they said oops it is cancer and it is in 1 lymph node.

2.  Had mammograms, 2 ultrasounds, 2 breast mris and they still found nothing...they said I had an unknown primary which scared me to death.

3.  Switched from my community hospital to a big one called Rush in Chicago.  Had to redo all the tests and more.  Finally Doctor does the ultrasound and I hear him say..."I got it".  It was in the breast.

4.  Pathologies from the 2 different hospitals (underarm and breast) don't match so it is still an unknown primary. 

5.  They said me for a 5th biopsy and it is on the thyroid.  Not cancer.

6.  Doc finally receives the first tissue from the community hospital to retest it...the small hospital had everything wrong.  Thank God it is a perfect match and I can finally get the right chemo.  Not only is it ILC but it is her2+++.  

7.  Believe it or not I had one wrong chemo and finally I was on the right path in the middle of July.  I am now well into radiation but it has been about a year from the first surgery...a lymph node under my arm to get me to this point. 

8.  I believe in second opinions after all this mess...hospitals and pathologists do make big mistakes, and whenever I hear about someone's cancer spreading during treatment I wonder if the tissue doesn't need to be retested.  Hospitals are not perfect.  I recommend getting things checked by a big research hospital to make sure it is right! 

checkum

Wow - Henson your story is just as crazy.  I am going to schedule an appt in Boston.  I am just hoping that I can get 2 opinions that are somewhat in sync...

The only scan that picked up my cancer and got attention was the ultrasound.  There was still difficulty with the sizing - but, it definitely showed it. 

checkum

Is it me - or is ILC a type that doctors just don't know that much about.  It seems to really cause frustration.

sue_blue

Do any of you ILC ladies have any enlarged lymph nodes, yet? I have some that we are watching. Most of the time I am OK with that, but sometimes I get agitated. They are on the bc side and where I had the nodes out. I've just found them in the last couple of months, the US didn't show anything other than normal nodes, but this ILC is sneaky.

nash

Welcome to the new girls. Wanted to say that it infuriates me when the docs say inane things like "ILC doesn't metastasize". Of course it can metastasize, and it often spreads to unusual parts of the body, like the ovaries, peritoneum and bone marrow. I have a cousin who has ILC mets to the intestines. I point this out not to scare anyone, just to make people aware, and to emphasize how important it is to do what we are all doing here--educating ourselves about our disease, since the docs often haven't put in the time to learn about an unusual subtype of bc and end up giving us misinformation.

Gitane

New ILC ladies are always welcome here.  I am struck by how much you are all advocating for yourselves and asking important questions.  Above all I am encouraged that you aren't just taking the professionals word for things, but are investigating and getting other opinions.  It is hard to accept that we need to do this, but we really do if we want information to help us understand our choices and make wise decisions for ourselves.  Your health is worth all the hard work required to get what you need in the health system.  Let me say, also, that I admire your spirit under the stress of this diagnosis. 

Nancy:  You are to be congratulated for working through the roadblocks the way you have.  I really admire that.  It's really frustrating when you feel like you have to drag every bit of information out of the people who are there to help you.  It's even more frightening when you think you aren't getting the care you need.  

Susan: A pet scan or a biopsy might let you know sooner what you are dealing with.  I don't like hearing that people are "watching" things if there is a way to get an answer.

 Checkum: ILC doesn't get the attention that IDC does, that's for sure.  Doctors are somewhat less able to tell you what treatments will work, what the results might be, etc.

Survivor07

Hi everyone! Diagnosed with ILC in October. And yes...mine snuck up on me as well. Had a clean mammogram in June and then this "mass of tissue" appeared in October. I'm lucky, though, I have a great doctor. He handled my first bout with breast cancer (DCIS) in 2001. Had a mastectomy but no radiation or chemo-lymph nodes were clear.

This go around, though, is a different story. In his office on a Wednesday...back on the following morning for a needle biopsy....and get this...he personally walked the biopsy to pathology because he wanted the results NOW! Had the port put in the following Tuesday and then started chemo the following Friday. And yes...all kids of scans and tests in between.

My first complication came after my third chemo treatment-developed a blood clot in my left arm. They blamed the cancer (which thickens blood) and the fact that I have a port. Said it's not too uncommon. Sent me home with a daily, injectible, blood thinner-Fragmin. STAY AWAY FROM FRAGMIN!!! Those shots made me sicker and sicker until I went back to the hospital with severe dehydration, nausea, and extreme vertigo. Switched to Lovenox which is A LOT BETTER!!!

When I was first diagnosed, a couple of my lymph nodes were "swollen" and were being watched. After 3rd chemo, though, my Oncologist said she couldn't feel them!

Still a long road ahead (yes, I'm Her2+)....but I guess any road is better than no road??? I really enjoy reading about everyone-it's hard to find someone who actually "understands" what we're all going through. Thank God for this board!!!

Susan

Gitane

Susan, Welcome to the ILC group.  It sounds like you have a doctor who is really on top of things and taking good care of you.  That means so much as we go through this whole breast cancer marathon.  Good, too, that you were able to find a blood thinner that didn't make you so sick.  Even better that your lymph nodes are responding to the treatment.  What an experience this is.  It turns our lives upside down. Sharing our stories helps us all to know that we are not alone in this.  I hope you will come back whenever you feel you want to to share with us.  We'll be doing the same.

mattscot

hi Susan... sounds like you are doing neoadjuvant treatment before any surgery ... correct?  Are they doing this for breast conservation??  Have they given you  the paremeters of what they think the tumor size is ... and ER,PR .. how was your Her2 defined?? (ICH/FISH...)  ...Her2 positive is less common in lobular.... My Her2 status is now considered borderline (tested negative in oncotype, slightly positive in Fish and borderline in ICH).I am now getting chemo plus Herceptin (TC plus H) treatment 2 next week.

It is great that they see a response to chemo...   Hang in there..

Seabee

Susan--

Just a few questions to clarify.  Since you had a clear mammo in Junw, where did the "mass of tissue" appear in October?  On another mammo? If so, why a second mammo so soon? Or was the mass palpable?

And if you are doing chemo before surgeryt, what regimen are you using? The change in the nodes is a good sign. How is hte mass responding?

susaloh

I didn´t really want to write my story here once more, as time goes by I would rather like to leave it behind .... but today it´s all come back to me in a rather ironic way - today I went to a birthday party at my friend's house - imagine a house crammed with friendly people and good food - who is standing in the kitchen, enjoying a nice cup of coffee? The gyn, who not only let my ILC grow under his nose  (see my story here (posting of Feb 5, 2008)  http://community.breastcancer.org/forum/71/topic/699650?page=1#post_812913) but when he finally couldn´t overlook it any longer, recommended the wrong treatment! I was a typical case for neoadjuvant chemo - not to save my breast, but at least to shrink the tumor from it´s unbelievable size -but he wanted to operate me straigt away - my life would have been a different one, if I had followed that route! I would have had to live with the knowledge of a huge tumor plus all lymphnodes affected - but never knowing, how well it would react to chemo!

I had said hello before I recognised him, but then did my best to thoroughly ignore him. Well, seeing him there did somewhat spoil my afternoon - I didn´t realise, how vulnerable and angry I still feel about this story. Will I ever truly leave it behind?

Susaloh

saint

I am so sorry for everyone who faces this beast & doesn't feel "well-cared-for!" I have one suggestion for getting the care you want & DESERVE:

Do NOT be a good patient!!! Make a lot of noise; ask questions;  do research (they tend to respond when you seem to know what you are talking about.) If your doc still isn't listening call him/her by their first name! How "disrespectful is that? (they call us by our first names & it tends to make them listen!) When all else fails you may need to make a rep for yourself in your tx center as someone they want to handle quickly & efficiently. It sux to have to be a bit*h, but I got mad enough that it came fairly easily & once I got the rep I have had to be NOTHING but pleasant & I DO get the tx I want!! 

In my experience & listening to the stories of other bc sisters ALL cancers are inscrutable! I think some tend to be more so than others & we just pulled the short straw with ILC! A good doc admits that they do NOT have all the answers. I hold that medicine is not a science but an art! Don't settle for mediocrity. Like ANY profession there are docs of all stripes! So find yourself a really great artist & not just a background filler! Search for an onc & staff you trust & will work with you as your team members & be your own best advocate.

May the new year bring great discoveries in this field. 

Be well & stay strong 

sandogger

I recently found out I have ILC which is 7.9 cm and was never seen on any mammo.

I found it while showering and just thought it was a cyst, since I have had them before.  However, things started to change radpidly and I had pain, which I had been told by a Dr. that meant it was NOT cancer.  The changes were that the lump was getting bigger really quickly and that my nipple turned inward.  I went to reg. OB/GYN who thought it might be IBC and that was very frightening to me. 

I went for a diagnostic Mammo and was immediately sent for the the ultrasound.  They were alredy telling it was cancer before I had some core needle biopsies.  I havd a total of 24 core needle biopsies over two days, on both breasts, as the right side had a suspicious spot on it from the breast MRI.  (The lump was on the left side.)

I then went for a CT Scan, bone scan, MRI, guided ultra sound biopsy and echocardiograms.

After reading all of these posts, I don't think I saw anyone else who is having chemo first, as I am right now.

This has been a very nasty surprise and very scary.  I hope I survive this unexpected disease.  My mother passed away from Ovarian Cancer 2.5 years ago.  Nobody in our immediate family had any cancers, but some uncles and aunts did have other cancer.  I also have a cousin who has had breast cancer.

Why does this get SO big before anyone discovered it?  I found it and that may have saved my life, but I am just beginning all of the treatment and cannot have any surgery until I complete chemo.

saint

HUGS sandogger! You WILL survive!

I did not have chemo first as I was dx'd over 8 years ago & that was not hwo they did it then, but it is my understanding that chemo first is the way things are done now. Things keep changing & it's cuz time teaches what works! Don't loose heart! We are all here for you & we are just a bit further down the road.....we'll try to let you know what's up ahead.....

Be well & stay strong 

Gitane

Hi sandogger,  My ILC was treated with chemo first.  I asked for that because I wanted to know if the chemo worked on my tumor, it did. I think it is done more commonly now.  You have probably discovered reading here that our type of cancer isn't usually found until it is larger.  Sad, but true.  It isn't found as easily as the more common IDC because it doesn't have the same pattern; it's diffuse rather than a solid shape, and it doesn't tend to leave the calcifications seen on the mammograms.  We are a little further down the road, but not exactly experts.  Usually someone here is able to give answers to questions and support when you need it.  You are in the middle of the barage of testing, poking, prodding, and general chaos that seems to accompany our beginnings on this journey.  Please come back and visit us if you think it helps you.

Survivor07

Mamo was clear in June, but then I found the mass in October.  It had grown that big that fast.  I think it was something like 8 x 12 cms -- my doctor was pretty freaked out.  We did a second mamo the day after we found it.  The mass still didn't show up "that much" on the mammogram--but it did on the MRI.  I think now it's down to 6 x 8.

Gitane

Survivor07,  It's great to hear that you are responding to the treatment.  I hope you are feeling O.K. physically and emotionally.  You are so fortunate to have such a caring doctor working with you.  Sending positive vibes!

sandogger

Thanks so much for the support.  I go for my second chemo on the 7th.

It is all very scary at this point.

sandogger

Thanks for the kind words.

carlajane

i'm new here...seeking information...i too was stunned when i was diagnosed with ILC...i knew something was there...went to my primary care doctor...she couldn't feel anything but sent me to get a mammogram...it was inconclusive...the ultrasound showed it at 1.4 cm at the widest margin...biopsy results followed with surgery...surgery found it to be 3.4cm...now i'm wondering how much better i would have been to have chemo first...as it is i start treatment january 14...what is the normal treatment for this?...all of my areas have been "gray" except for size...onco test was a 27...my treatment is 4xAC followed by five years of femara...i'm nervous because i have no idea if any cancer cells left will respond to this...i had bilateral masectomy on november 24...thanks

Gitane

carlajane,  If there is one thing we all learn with time it is to not look back.  AC is a powerhouse combination.  Femara is also considered one of the most effective endocrine treatments.  The best news is there is no evidence of spread through the lymph nodes, a very, very good sign.  With a bilat-mast, and the treatments you are getting you are doing everything possible.  

saint

Carlajane----big hugs--we are here for you!

It is natural for you to be afraid & wonder what is going on in your body YOU are curable!!! I second Gitane's post-you are being as aggressive as you can be! YOU WILL SURVIVE, hon!

Be well & stay strong 

Hawaii808

My ILC also snuck up on me.  I went to my Gyn in August and she did a routine check and felt nothing.  Just before annual mammogram in November I felt a mass in my left breast.  The mammo showed an abnormality.  I had to wait another month to get an ultrasound.  The ultra sound indicated that I needed to have a needle biopsy.  From that point on, everything moved rather quickly.  I received my dx then met with an onc, had a CT scan, PET scan, an Echocardiogram, had a port inserted and will now start chemo tomorrow.  I am doing chemo before surgery.  Both my onc and BS feel that because my tumor is quite large, its the best way to go.  They say that the chemo will shrink my tumor enough so that I can get a lumpectomy.  Also by doing the chemo first they can tell if its working or not. I'm doing 4 DD AC and 12 weekly placlitaxel.  My onc said that with the path report of my tumor that I was perfect for this treatment.  She was even excited (whoopee!)

I was also very shaken up with my dx and to also learn that my tumor was so large.  I mentioned to my onc and BS that the because my tumor was so large that it couldn't possibly be good.  However, they both said that they have found that its not always the size of the tumor but the chemical makeup of the cells and how it is treated that matters.  They have found that some tumors that were as small as .5cm had a reccurence after 2 years whereas tumors that were quite large were treated effectively and they saw no occurrence 10-15 years later.  That put some of my fears to rest.  I also did some research on ILC and learned that this cancer tends to be slow growing and is generally slow to move outside of the breast.

Well ladies, lets hope that we all have good outcomes. 

saint

Just to clarify:

Your docs were correct to encourage you with info about size. Mine was stage 1 but 3 years after tx I was dx'd with extensive mets sites! My friend was stage 3 & is still NED after almost 6 years!

But what makes a cancer slow (or fast) growing is NOT where/what kind of bc it is but it's grade-how aggressive the cells are. Some ILC is slow growing & others are not---it's all a crap shoot! Info is power!!

That being said- we are in this soup together & we'll all be here for a LONG time to share, God willing!

Be well & stay strong 

Beevv

I presented with a benign lump and flat nipple..all tests showed up negative but because of the thickening of the skin mydoc recommended lumpectomy and there hiding behind lump was ILC! I have learnt to go with a GUT feel....I have to say female BS are more responsive to what we say/feel. I have xperienced both! Don't stop looking until your satisfied.