Brand New Diagnosis ILC and PILC

SSBNewbie

I just received the results from 3 core biopsies on Thursday which unfortunately confirmed that I have ILC in both breasts and a bonus mass in my right breast that contains ILC and PILC.

I have been seeing Drs in my smallish city and I'm feeling as if they are treating this as the run of the mill IDC, so first thing tomorrow I'm going to be on the phone with a clinical research facility in a nearby larger city. The breast surgeon that I saw on Thursday gave me the cancer news and told me that he was going to send me first to an Oncologist to do chemo prior to surgery because the mass on the right is too close to the chest wall and he can't get clean margins unless he shrinks it first with chemo.

I have learned a lot reading here and I now know that ILC doesn't alwasy respond well to chemo and I don't know why he doesn't even want to do an exisional biopsy prior to sending me off for 6 months of chemo.

Right now my emotions are running between terrified, positive and back to terrified, but reading here is making me feel like I can do this

Icietla

Welcome, SSBNewbie, and my sincere condolences. You have come to the best place on the internet for information, true understanding, and support to help you get through this. (((Hugs))).

Since your tumors have already been biopsied and diagnosed, surgery to remove just the tumors would be lumpectomy surgery rather than excisional biopsy surgery. Does this make sense?

Yes, an emotional roller-coaster with fear and hope. We have been there too. You are right -- whatever it takes, you can do it!

Icietla

Here are some links to ILC section threads that may have helpful information__

https://community.breastcancer.org/posts/search?utf8=%E2%9C%93&search_builder%5Bkeyword%5D=neoadjuvant&search_builder%5Bauthor%5D=&search_builder%5Bsource%5D=forum_71&search_builder%5Bdate_range%5D=&commit=Search

Anonymous

Welcome to our group of over 100,000 women who have all done this/are doing this, as you've noted. It's one of the worst--and perhaps best upon reflection--thing that ever happened to me (my dx). I learned about my own inner strength in the face of a lot of long-term abject fear about what was/would happen to me--still feel it at times, which is normal, and I hope you'll be able to gather strength from all of us. When I realized how big our bc.org group really was, I took such heart in that, and the info and encouragement here was invaluable. You CAN do this and we are here to provide strength, hope, and love.

Hugs

Claire in AZ

toomuch

I think seeking a second opinion is a great idea. It's true that there are fewer complete responses neoadjuvant chemo in ILC tumors then IDC but there are women on this board who's tumors shrunk significantly. There is also some evidence that ILC tumors respond to neoadjuvant Letrozole. A link to an abstract is below. Take a deep breath and then move forward slowly until you have a plan that you are comfortable with. Come back here for support and to let us know how you're doing.

https://www.ncbi.nlm.nih.gov/pubmed/21870129

Jkay775

Hi. Is ILC hard to diagnose with a Mammogram amd having extremely dense breasts?

SSBNewbie

Thank you for the info and support!

Jules707, in my left breast the 3D mammogram detected the ILC. I had a bit of a strange situation as I had an area of concern at the bottom of my right breast very close to my ribs that didn't show up on mammogram. I asked the radiologist about the spot and she looked at itwith ultrasound and thought that it was concerning. Core biopsy determined that it was ILC.

I'm waiting for results of an MRI that I had yesterday to find out more about the mass and I have an appointment with a second opinion breast surgeon on Friday.

YATCOMW

Jules707.....my ILC was not seen on mammogram or sonogram......and yes I was told I had dense breasts.....only because I felt something and asked to have it biopsied am I alive today. My tumor ended up being 8cm and I had 17 nodes filled with cancer. Go with your gut!

SSBNewbie

I finally got results from my MRI on Monday. The results show that the tumor on the right, which is the largest tumor and the one one that didn't show up on the Mammogram or Ultrasound, is 2.9 cm and is invading the muscle. There is no further clarification as to which muscle. I have an appointment tomorrow with a different Dr. at a more well-known treatment center, so I'm sure that I'll get some answers tomorrow, but right now I'm feeling a panic creeping upon me.

The tumor is at the 6 o'clock position and can be palpate, so I'm not sure if the radiologist was referring to the chest wall or a muscle below my breast.

vlnrph

Work on taking some deep breaths. Usually helps me calm down (and even sleep, sometimes)

Is there someone going with you to the appointment tomorrow? That person should take notes or record the conversation so you can listen again later.

Get a third opinion if you're not comfortable with the first couple. You CAN get through this!

WGraf

My tumor was located at 6 o'clock R breast. Not a great angle for the tumor but visible LN.Initial DX ILC but after BMX came PILC and LCI. I mention this bc during my DIEP reconstruction last month I had to have my 4th rib removed and the PS noticed a LN that was as large as my tumor it was removed and came back with cancer. I was told it's not common to have the LN in the sternum be +. Usually bc they are hard to see since muscles are not usually dissected off the ribs and ribs removed for reconstruction. I was told how lucky I was this was even found. When I went to RO last week I asked about it and he most general radiologist don't look there since it's fairly rare to have + nodes. I asked him if he would be able to see it on my MRI and he said let's pull it up...well it was there plane as day and the initial radiologist missed it. He said that the image on the screen was either a very enlarged lymph node or an aneurysm. Obviously wasn't the later. Either way it should've been investigated and it was missed My MRI was done 16NOV16 and surgery 12JAN17. I'm so worried it's in more nodes now. So I would just make sure that your radiologist have checked the LN around the sternum if you are getting an MRI...IMO. I start chemo on 3/2/17. My ONCDX came back at a 31. Not sure if it would have been so high without this + LN and I would have not done chemo and this would have just spread. I'm a nurse by training but firmly believe in advocating for ourselves in this journey.

Lindakb

Hi there! I was diagnosed with ILBC in January of 2017 and waiting for a mastectomy feb 21, 2017. I'm er+, or+ and her2- like you. I'm stage 2a and grade 2. My tumors are 2cm and I feel like I've been waiting forever to get to surgery that they've probably grown since then. Had intermittent pain since biopsy of tumors. Also have a sentinel node with a tumor. Must be1cm since a pet scan doesn't pick up something smaller I'm told. How are you dojnf

SSBNewbie

wgraf, I will ask my BS to ask her Radiology Department to look at my MRI again. This breast surgeon is at my second opinion facility.

My largest tumor is in the 6 o'clock position as well. Our original plan was to do surgery first (bilateral mastectomy with reconstruction) and then hormone therapy if my OncoType came back low. She reviewed my case with her Oncology Dept (3 Oncologists at a teaching hospital/NCI facility) and they had reviewed my mammogram from 2014 and had noticed that the radiologist at that time had noted that I had peeling on my right nipple that appeared to be psoriasis. The 3 Oncologists agreed that they would like a PET scan prior to surgery to make sure that the 2014 findings weren't actually the beginning of the large (2.9 cm tumor on the right) and that nothing is going on in the rest of my body. Kind of scary, but I guess I have to appreciate that they are being proactive. The 2.9 cm tumor was pretty stealth as it didn't show up at all on my mammogram, I had to ask the radiologist doing my diagnostic ultrasound to take a look at it.

Lindaakb, We seem to be in very similar situations. I was diagnosed at the end of January. I don't have a surgery date yet. I delayed the process a bit by deciding to get a second opinion at a NCI research/clinical facility after my local Drs. kept expressing how "complicated" my case was. I have ILC in one breast and IDC in the other.

It was a good decision to get the second opinion, but I have put myself in a longer period of testing and waiting for test results. I'm still having some pain in my biopsy areas, but it seems to be less frequent that I have shooting pains ripping through my biopsy sites.

Kaylay775

Hi ladies. What are the classic symptoms of ILC? Meaning what prompted you to see a dr since they do not show up on mammogram or ultrasound?

Chris13

I had two months of anastrozole before my mast and Diep. The BS said the tumor(s) had shrunk during this time. The wait was because lobular is supposedly slow growing, plus I had a major international trip planned, and a well known doc to do the Diep had to be scheduled. The oncotype on the tumors came back low, as expected with lobular, although I had one node involved (they were surprised). No chemo, according to tumor board when the oncotype came back low.

worriedmomma

Hi Ladies, I read your post and feel your courage and strength and admire you all from afar. I was told after mamagram and ultrasound that I have very dense breasts and extensive 'thickening' down my right breast through my armpit area and cystic masses throughout both breast. I left the breast centre with a repeat mamagram in 6months... that will be May 1st....... can't help but worry.....

Optimist52

Kaylay, good question. I was lucky I suppose to find a lump both times with my two diagnoses. Nearly 12 years of annual mammograms and ultrasounds failed to find second ILC. Also I had an inverted nipple and daily itching with the second one. These symptoms also didn't get the medical attention they should have. It definitely showed up on MRI though.

SSBNewbie

I felt the lump in my right breast and went in for diagnostic mammogram. I was shocked when they found cancer in my left breast and not my right. They did ultrasound immediately after my diagnostic mammogram and I asked the radiologist about the lump on the right, which turned out to be a 2.9 cm ILC.

I had an MRI last week and the tumor on the right was very apparent.

cucumber

Hello, I mistakenly did chemo for my ILC and it ruined my life, did not change the cancer or prevent new cancer from occuring. I am coming up on 2 years out from chemo and am no where near my previous levels of well being. Only 2% of ILC respond to chemo. The post chemo MRI showed no tumor, but it was all still there and then some at surgery. ILC can hid from scans and give the impression it has responded to chemo when it has not. Good luck!