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Topic: Did you know this about where ILC recurs?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Apr 18, 2019 12:17PM

Texas357 wrote:

I found this on the Fred Hutchinson Cancer Research Center website. It's something we should all know, and not a single doctor in 10 years has told me. ILC not only has a tendency to recur later than other breast cancers, but it tends to come back in different locations in the body than others.

Lobular's metastatic spread is also unconventional. While ductal spreads to the liver, lungs, bones and brain, lobular tends to go to the bones and ovaries or enmesh itself in the gastrointestinal tract, the abdominal lining or the tissue around the kidneys and ureters. But lobular survivors aren't always aware of this oddball spread pattern. Nor is it common knowledge among the primary care physicians who care for them years after treatment. This is especially problematic because lobular leans towards late recurrence.

"Several women in our [ILC] group had mets to the GI tract and the ovaries and never knew it was possible to spread there," said Pate. "Lobular patients often have terrible problems getting diagnosed because imaging can't see the mets or their doctors misdiagnose their symptoms. Patients need to understand their disease so that if they're having persistent issues with their ovaries or abdomen, they can advocate for themselves."

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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Apr 18, 2019 12:51PM KBeee wrote:

Good information. Mine is IDC, but my mom was lobular, so I appreciate hte knowledge to pass along.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Apr 18, 2019 03:27PM robinblessed54 wrote:

Texas357, this is so interesting to know. ILC, the great deceiver and sneaky cancer. I have polyps that were precancerous that developed 3 years from my last colonoscopy which was clear! I have to have another colonoscopy now every 3 years. I have IBS-C and tons of intestinal problems. No ovary problems, but that is scary. I also have MGUS, the precursor to Multiple Myeloma.

Robin


Dx 9/2/2014, ILC, Left, 1cm, Stage IB, Grade 1, 0/5 nodes, ER+/PR+, HER2- Surgery 9/25/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 10/15/2014 Arimidex (anastrozole) Hormonal Therapy 12/30/2014 Aromasin (exemestane) Surgery 3/5/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 3/14/2015 Femara (letrozole) Surgery 12/21/2016 Reconstruction (left): Nipple tattoo; Reconstruction (right): Nipple tattoo
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Apr 18, 2019 06:10PM Ihopeg wrote:

Hi. happened to me. Had stage 3 ILC in 2006. Er/pr + her2 neg. was watched for 12 years and now it has gone to my brain spine and pelvis. Thanks for sharing!
I Dx 11/11/2006, ILC, Right, 3cm, Stage IIIC, metastasized to bone, Grade 2, 19/20 nodes, ER+/PR+, HER2- Surgery 11/28/2006 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic ovary removal Chemotherapy 1/6/2007 Chemotherapy 1/9/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/29/2007 Breast, Lymph nodes Hormonal Therapy 8/18/2007 Femara (letrozole) Dx 10/5/2018, ILC, Stage IV, metastasized to brain/bone, 20/21 nodes, ER-/PR-, HER2-
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Apr 19, 2019 01:58AM Meow13 wrote:

I have been having stomach issues and I also have to have colonoscopies every 3 years due to polyps. I am also bothered by pain thst comes and goes in the hip. Salonpas seem to relieve the pain. What testing should be done for the intestinal problems?

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Apr 19, 2019 04:38AM Mavericksmom wrote:

Texas357, Thank you for posting this article! I had it sent to my email address so I can read it over again and reference it! Such great information!

I'm refusing an AI. I went to a cancer hospital to be treated. My ILC was a recurrence. I feel the MO I saw has no time for me to ask questions. I met with her once, found out I didn't need chem, told to take Letrozole and spent most of time talking about the horrible side effects, and I had to sign a paper stating that they told me about all the side effects. I was told when to start the meds and given a lab and doctor appointment 4 months later. She wanted me to start taking huge calcium/Vit D pills. Told me to call if I had side effects. Of course prior to the time she wanted me to start the AI I asked her 3 questions and it took her three weeks to get back to me. Too late as I already decided not to take the AI and I had cancelled my appointments

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Apr 19, 2019 05:02AM Texas357 wrote:

Prayers for strength and hope, Ihopeg. Mavericksmom, you have to do what you feel is right for you. I have learned that letrozole is the standard course of treatment for ILC now. I took it for 7 years. I had side effects at first but those gradually eased off. I would have continued taking it another 3 years except that it caused osteoporosis, and I was forced to stop. After a couple Prolia injections, I'm back to osteopenia.

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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Apr 19, 2019 05:43AM claireinaz wrote:

I did know about this particular spread. I don't know what we can do about it, other than to inform ourselves and be ready to hit our docs with the information if something serious arises and demand testing.

Texas 357, Letrozole is standard tx for ILC? Can you share the research article for that? I've never heard it.

Claire in AZ


9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Apr 19, 2019 05:55AM Texas357 wrote:

Claireinaz, an oncologist at MD Anderson Cancer Center told me a few weeks ago that hormonal therapies (i.e. Letrozole or Femara) are now preferred over chemotherapy. He told me that had I been diagnosed today instead of 10 years ago, I likely would not have had chemo.

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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Apr 19, 2019 06:11AM dtad wrote:

Texas...yes that is true, but only with ILC. 15 years ago my dear friend had ILC 5cm and 5 lymph nodes positive. She refused chemo because her daughter was having a baby. She did take an aromatase inhibitor though. She still is NED but that was before we had this new information! So it really makes sense now.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Apr 19, 2019 06:16AM Texas357 wrote:

Dtad: Yes, that's the point. Those of us affected by ILC need to know that our cancer behaves differently than other forms. This is far from a one-size-fits-all disease.

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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Apr 19, 2019 06:20AM - edited Apr 19, 2019 06:20AM by dtad

No I get it! I Was just trying to say that without knowing it my friend actually made the right decision...

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Apr 19, 2019 06:25AM Texas357 wrote:

I agree. That's a wonderful story and I'm thrilled that your friend is still NED! Those of us who have taken an aromatase inhibitor need the reassurance that those drugs work!

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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Apr 19, 2019 06:41AM NoteRed wrote:

Maybe you are right about ILC and chemo, BUT when there are nodes involved chemo it is recommended even now and I believe that's the right thing to do in order to kill every cancer cell running around.

My cancer was 80%ILC and 20%IDC (thats why we found it when it was about 1 cm).

My MO told me that the staging has changed also.

Dx 2/2/2018, ILC, Left, 1cm, Stage IIA, Grade 3, 7/17 nodes, ER+/PR+, HER2- (SPOT) Surgery 2/22/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy 3/26/2018 Taxol (paclitaxel) Chemotherapy 6/28/2018 CEF
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Apr 19, 2019 08:22AM claireinaz wrote:

I did know that ILC responds less positively to chemo than others; also knew that ILC is a good candidate for AI therapy. My oncologist, because of my + nodes and risk status, highly recommended chemo and I was on board.

I was wondering why Letrozole is preferred over Arimidex or Aromasin (since I began with Arimidex and it was awful, so switched to Aromasin per my MO).

I probably wasn't very clear in my above post.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Apr 19, 2019 11:19AM Mavericksmom wrote:

I'm so torn as to what to do.  I had IDC, 1cm, grade 1, 0/24 nodes (my sentinel node biopsy failed so I had my fat pad with 24 nodes in it removed) I had chemo (there was no OncotypeDX back then, it went by size with 1cm as the cut off point) and radiation.

I thought I was cured! I lost my oldest sister to cancer, when she had her nodes tested she was positive for both IDC and non-Hodgkins Lymphoma. 

I believe I found my 1.3cm ILC because my sister was looking out for me from above.  I saw a new gynecologist for a regular check up, hadn't seen one for over four years due to a really bad experience.  This doctor ordered a diagnostic ultrasound. I had some pain deep in my breast, but I had been told that cancer doesn't cause pain, so I wasn't worried. It wasn't seen on the mammogram, only on the ultrasound.  I had a biopsy done at a cancer hospital and it was positive for ILC. 

I chose NOT to take Letrozole (or any aromatase inhibitor) for many reasons that apply only to me.  I had chills when I read the article Texas357 posted.  For a few minutes I thought again about taking the Letrozole, but then realized that my original decision was right for me. I appreciate knowing the information because now I must be extra vigilant when it comes to recurrences. I plan to meet with my gastroenterologist to see if there is anything more I can do to be proactive with respect to cancer in the intestines or mesentery.  My new gynecologist, who I really like, will keep checking me for ovarian cancer. 

While it is upsetting to know there are even more places ILC can metastasize to, ignorance, when it comes to breast cancer, is not bliss! This is why I am so thankful that Texas357 shared the article!

Someone mentioned being treated at MD Anderson in Houston. That is where my sister was treated, and sadly, where she passed away. They were absolutely wonderful to her and her family! It wasn't the breast cancer that she died from. She was successfully treated for both the breast cancer and the lymphoma, but got a third cancer, MDS, from treatments she received for the other two.  It is super rare to have that happen, but even when it is way less than 1%, it still means it happened to someone.

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Apr 19, 2019 12:57PM MexicoHeather wrote:

Thanks. Interesting post.😀

Dios es Amor. Dx 10/1/2016, IDC, Right, 3cm, Stage IIB, Grade 3, 3/17 nodes, ER+/PR+, HER2- Surgery 12/4/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Right Radiation Therapy 5/9/2017 Whole-breast: Lymph nodes, Chest wall Surgery 10/9/2017 Prophylactic ovary removal Surgery 12/5/2018 Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 19, 2019 07:39PM robinblessed54 wrote:

claireinaz, yes I have heard both things; Letrozole is best AI for ILC, right from my MO and chemo doesn't do much for ILC from several studies. My tumor was 1.2cm, and my first MO said I could have chemo if I wanted to, but I said no! He was horrible and was very rude and blunt. I change right away and have a caring MO that I trust. She admits that ILC is unpredictable. I was put on Arimidex and Aromisin by first MO with HORRIBLE side effects. I switched MO's then Letrozole and I have NO side effects other than dry everything. I can live with that. My tumor could not be found on a mammogram either. I actually found the lump which I was told was almost impossible by most people. They didn't find it until I had the diagnostic ultrasound and core biopsy.

So now we wait an see what my next colonoscopy shows next November. I have so many intestinal issues that I am constantly working on my insides. Smile

In order to have any regular bowel movements, I must take Benefiber and Mira Lax twice a day. But it works and that is what my GI doctor told me to do. I don't know which one of you ladies mentioned the left hip pain, but that is my story too.

All we can do is trust in the Lord and do the best we can everyday. God Bless you all and Happy Easter.

Robin


Dx 9/2/2014, ILC, Left, 1cm, Stage IB, Grade 1, 0/5 nodes, ER+/PR+, HER2- Surgery 9/25/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 10/15/2014 Arimidex (anastrozole) Hormonal Therapy 12/30/2014 Aromasin (exemestane) Surgery 3/5/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 3/14/2015 Femara (letrozole) Surgery 12/21/2016 Reconstruction (left): Nipple tattoo; Reconstruction (right): Nipple tattoo
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Apr 21, 2019 06:34PM vlnrph wrote:

Yes, I knew this. There is a rare genetic mutation in CDH-1 whose carriers are more likely to have ILC and gastric cancers. My metastatic disease appears to be from my ductal tumor, not the lobular lesion.

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Apr 21, 2019 06:50PM Meow13 wrote:

I don't think I was tested for cdh-1, I had 2 tumors one ilc and one idc.

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Apr 21, 2019 07:24PM jessie123 wrote:

I am so tired of researching, but I have one more project --- to choose an aromatase inhibitor. I'll need to look again, but have you noticed on the stage IV page most of the people are on Letrozole? Then when I go to the regular aromatase board most of the people are on Arimidex. My MO said he uses Letrozole and Aromasin and when I asked why he said because his patients seem to have less side effects with those two drugs. Why do most doctors use Arimidex --- are their drug rep's nicer (-: I did read somewhere that Aromasin has a steroidal component. I also read that Aromasin causes slightly less Osteoporosis. I've got a lot of reading still to do -- am just getting started. And one last thing -- remember when they say that an aromatase inhibitor reduces reoccurrence by 30% they are not talking about 30% of 100 --- they mean your own individual risk factor. According to my oncotype score my reoccurrence rate is 6% with the drug --- that is considering the 30% reduction because of the drug. So if I don't take the drug my rate goes up 30% to 9% reoccurrence rate or chance. That is NOT much!! Since I already have osteoporosis in my hips this decision will be difficult for me. NOTE --- Beesie clarified the reoccurrence statistic for me on another thread a couple of days ago.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Apr 21, 2019 08:13PM vlnrph wrote:

As a retired pharmacist (and former drug company rep!), I can tell you that all the AI meds are now available in generic form which means there is no longer any active promotion by their original manufacturers.

However, since Arimidex/anastrazole was the first one on the market, old habits die hard and so it remains the most popular because doctors have had the most long term experience with it. You can tell by the ending -zole that it is more structurally like letrozole, brand name Femara, than the steroidal exemestane=Aromasin.

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Apr 22, 2019 02:21AM ShetlandPony wrote:

Maybe another reason is that at least one study compared Tamoxifen to the aromatase inhibitor letrozole (Femara) and found letrozole to be superior, particularly for ILC. It seemed that a subset of ILC may be de novo resistant to Tamoxifen. If I remember right this was a sub analysis of BIG 1-98.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Apr 22, 2019 03:48PM FaithAndTrust wrote:

good thread.

Note red how has staging changed according to your MO? Thanks


Dx 11/2014, ILC, Left, 1cm, Stage IIB, Grade 2, 2/8 nodes, ER+/PR+, HER2- Chemotherapy
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Apr 22, 2019 03:54PM FaithAndTrust wrote:

meow 13 I too had lobular with ductal.

How do you know which one trumps which when it comes to a category you belong to..? If we are mixed and have recurrence which area is it likely to go to?

I read somewhere that mixed lobular and ductal is less likely to recur than ILC alone but not sure about this..??

Thanks in advance for any info anyone can provide.


Dx 11/2014, ILC, Left, 1cm, Stage IIB, Grade 2, 2/8 nodes, ER+/PR+, HER2- Chemotherapy
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Apr 22, 2019 04:32PM Meow13 wrote:

Faithandtrust, my oncologist seemed to not be concerned that I had one ILC and one IDC, he treats them the same. He is noted as a top Seattle BC oncologist that is up on all the latest research. I recently asked him what the recurrence probability is now that I am on my 8th year. He said less than 10% for my case even though I didn't do the recommended chemo. He believes my case was most likely to reoccur in the first 5 years. But I think the risk of a new primary is slightly higher than someone who never had cancer.

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Apr 23, 2019 06:50AM claireinaz wrote:

I tried to find comparison of exemestane and other AIs re: treatment of ILC -- long ago I thought I remember finding a research article that in effect said they were all (within a .% or two) effective, which comforted me. I couldn't find it, but did find a lot of research that treating ILC is more effective when using an AI compared to rx'ing Tamoxifen but most of us know that already.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Apr 23, 2019 09:16AM Hannah1962 wrote:

hi everyone, I’m responding mainly to Mavericksmom - wow that doctor pushing the letrozole was obnoxious. I realize you have plenty reasons to refuse the letrozole (your own reasons not posted or shared). However, some of us (like me) are on letrozole and experiencing NO discernible side effects. If you ever decide to give it a try you could probably figure out within a month or two if it’s a problem for you - unless your concern is something like bone loss that might show later.

Justthought I would mention it.

Hannah

Dx 12/7/2018, ILC, Left, 1cm, Stage IB, Grade 3, 0/1 nodes, ER+/PR-, HER2-
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Apr 23, 2019 07:09PM karen1956 wrote:

Thanks for sharing this information. I had an oophorectomy after finishing chemo and rads....was not aware of the GI track, but was of the common areas for ductal - bones, liver, brain. My oncologist still sees me every 6 months. I'm 13 years old and hope NED continues to be my friend.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Apr 24, 2019 11:47AM Mavericksmom wrote:

Hannah, Thanks for your post.  Right now I feel like a terrible person.  I didn't think my doctors cared what I did. I was (still am) petrified to take the Letrozole. Then, about an hour ago my MO called me, "just to talk."  She listened to me and my reasons for not taking the drug.  She assured me that if I had a really bad reaction that I could stop it and we could find something that would work better. She told me that even if I didn't take the AI, that she would want to see me every three months for follow up visits. 

So, I am going to "eat my words", I seem to do that a lot since I found out about my recurrence.  I told her I will start the Letrozole tomorrow. 

It helps knowing that you are doing well on Letrozole!  Thank you!  

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Apr 24, 2019 12:30PM robinblessed54 wrote:

Mavericks, I am on Letrozole( after trying the other 2 first), and I have no horrible SE. When I changed my MO, she wanted Letrozole because it works best for ILC. Glad your MO listened and assured you she would look out for you. I hope you continue to fight the fight for your best health.

Blessings, Robin


Dx 9/2/2014, ILC, Left, 1cm, Stage IB, Grade 1, 0/5 nodes, ER+/PR+, HER2- Surgery 9/25/2014 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 10/15/2014 Arimidex (anastrozole) Hormonal Therapy 12/30/2014 Aromasin (exemestane) Surgery 3/5/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 3/14/2015 Femara (letrozole) Surgery 12/21/2016 Reconstruction (left): Nipple tattoo; Reconstruction (right): Nipple tattoo

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