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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 03:17PM

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 24, 2019 03:46PM ShetlandPony wrote:

Faith, regarding which one trumps when you have both ILC and IDC — I remember one of the medical professionals who spoke at the first ILC Symosium in Pittsburgh said that with both, he would monitor/treat as ILC. I imagine that is because ILC may be more picky about treatment and can met to the usual places plus others.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Apr 24, 2019 04:54PM Mavericksmom wrote:

Thank you Robinblessed!  I needed to hear that! ((((cyber hug)))) to all of you!

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Apr 24, 2019 05:47PM Meow13 wrote:

Shetland, good to know I think I was given AI drugs mainly because I was menopausal also because I had 1 tumor ILC. My oncologist said his biggest concern was my pr being 0%. My er was 95%.

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Apr 24, 2019 07:46PM rrshannon wrote:

Interesting read. My first BC 15 years ago was ILC and I also had GI issues I had a precancerous polyp removed 3 years ago. I am now past do for my colonoscopy as they wouldn't let me do it during my chemo for my current IDC. Hoping to recover from my recent surgeries soon so that I can get my colonoscopy done. Also interesting to note I had precancer removed from endometrium and fallopian tube during my hysterectomy.

BRCA Negative. Dx 7/2/2003, ILC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 7/11/2003 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 7/23/2003 AC Radiation Therapy 10/30/2003 Dx 12/11/2018, IDC, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2- (FISH) Chemotherapy 1/17/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/15/2019 Lymph node removal: Right; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right) Hormonal Therapy 5/10/2019 Femara (letrozole) Surgery 6/17/2019 Reconstruction (right): Tissue expander placement Surgery 9/23/2019 Reconstruction (left): Fat grafting, Saline implant; Reconstruction (right): Fat grafting, Saline implant
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Apr 24, 2019 11:01PM - edited Apr 24, 2019 11:02PM by ShetlandPony

Rrshannon, with that history I would ask for a broad cancer panel of genetic testing, beyond just BRCA, one that includes Lynch genes among others.

Meow, I agree that an aromatase inhibitor was a good choice for you. Not only because it was ILC, but because negative PR can suggest resistance to Tamoxifen.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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May 17, 2019 10:03PM Mavericksmom wrote:

I had the entire fat pad removed due to a failed sentinel node biopsy when I was first diagnosed with breast cancer.

My question is, with my recent recurrence 15 years after first DX, what is my node status? None were removed this time because the whole pad was already removed

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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May 17, 2019 10:09PM Meow13 wrote:

Did they say what happened? Why did the biopsy fail?

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May 18, 2019 11:00AM Mavericksmom wrote:

hi Meow!  I don't know why it failed.  My breast surgeon never once told me that it could fail. That was in 2003. I had a 1 cm IDC.  Sentinel node biopsy was rather new at the time and when it failed, for whatever reason, my breast surgeon reverted to the gold standard which was removal of the entire fat pad. Mine contained 24 nodes.  I immediately got lymphedema in my left arm.

My medical oncologist at the time, whom I really liked, told me that when the pathologist removes the fat pad, they just cut the many nodes in half and check for cancer.  He said there is a much more thorough examination of sentinel nodes because there are only a few to look at. He told me that even though my nodes were found by the pathologist to be negative, that cancer could have been present but missed.

From what I read since, the hardness of the lymph node, makes me think that a pathologist has a suspicion even before examining the sample whether or not it is cancerous. Even so, they can't be sure until they look at it under a microscope. Again, that is just my feeling, I don't really know.  2003, while almost 20 years ago, seems like a life time ago.  So much has changed.  I had chemo because I was pre menopausal at the time and my cancer was a cm.  Back then, there was no OncotypeDx test. If the tumor was over a cm they recommended chemo.

Again, I am annoyed at my BS that did my recent mastectomy because when I asked the question about my node status, he just said to be sure to tell my MO that no nodes were removed. I only saw my MO once so far, but will see her again in June.  I don't remember if I even mentioned that to her. Since I went to a cancer hospital, not just a hospital with a cancer unit, I thought things like that would be in my report and that they would be highlighted somehow for the other doctors in the team to be aware of.  I guess I expected too much.

I am cancelling my appointment in July with the BS because, while he is a top rated surgeon and very nice to talk to, he completely dismissed my desire for a bilateral mastectomy and I felt pressured by him to do things his way.  Also, I know when I had breast cancer the first time I only had to follow up with either the MO or BS, not both.  I really like my MO even though I only saw her once so far, and I am still doing follow ups with my PS, or should I say, the PA from that dept. I don't know how much longer he will want to see me for follow up visits, but since I had problems with wound healing, I will keep seeing him until I am completely healed.

Again, I know there are other nodes in the area of the breast, but I don't know where the cancer would travel if there were no nodes in the arm pit?

The first time I had IDC, this time it was ILC and while not a lot larger, only 1.4cm, I am more concerned this time. They also found areas of LCIS in the mastectomy tissues. 




Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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May 18, 2019 09:00PM - edited May 18, 2019 09:00PM by Meow13

Good for you, the choice should be yours not the BS. I am sorry to hear about the entire fat pad being removed especially when there was no cancer. It might be possible to have lymph node transplant surgery to correct any lymphedema. Not sure I completely trust any of my doctors. I am happy that I didn't have any complications. The only thing I might do differently if I could go back is taking the AI drugs.

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May 18, 2019 09:20PM Mavericksmom wrote:

I agree Meow, I too wish I had taken Tamoxifen that was offered to me in 2003*. That said, my BS in 2003 kept making a big deal about my tumor being so tiny. She kind of mocked me for having chemo because it was just 1 cm, but the MO had reasons to believe I should have it, and they made perfect sense to me

I’m actually glad you said you aren’t sure you trust your doctors because sometimes I wonder what is wrong with me that I feel that way about my BS.

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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May 18, 2019 10:31PM Meow13 wrote:

Always good to get another opinion.

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May 19, 2019 08:06AM Texas357 wrote:

I lost confidence in two MOs, but loved my BS.

First MO was not interested in discussing any lifestyle or diet advice I had read on the American Cancer Society websites. He also didn't read my chart carefully before my visits.

Second MO was insisting on my getting annual chest x-rays just to monitor, even though that's not the recommended protocol and ILC is not as likely to recur in the lungs first. In fact, she's never discussed any of the information I found about ILC, which prompted me to start this thread. I had to find it on my own.

Twice, I've gotten one-size-fits-all approaches by my MOs. I just switched to MD Anderson's survivorship program. But we have to be our own advocates and continue to educate ourselves.

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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May 19, 2019 10:03AM robinblessed54 wrote:

Ladies, unfortunately ILC doesn’t get the funding it needs because it fades into the background with IDC. It is sneaky and is missed so often. Mine never showed on a mammo and a miracle of God was, I felt it! That just doesn’t happen normally. The radiologist said she couldn’t believe I felt it. I chose the BMX for that reason, get this stuff out of me and anything that could get it!

I have IBS-C and polyps so the intestinal aspect makes me nervous. Keep being vigilant and get the care we all deserve.

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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May 21, 2019 01:58PM Mavericksmom wrote:

I have been on Femara one month, so far so good!Smile

Anyone know what kind of testing is appropriate for ILC?  I know mammogram, assuming  ultrasound too.  I can't have a breast MRI.  Kind of concerned that my "virtual colonoscopy," which is a special CT scan of the colon with same awful prep, showed two hazy areas in my mesentery.  Hope that isn't mets. I am going to ask my MO in June.


Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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May 21, 2019 06:33PM BevJen wrote:

I'm not positive that the docs even know what tests are best for ILC -- or whether all radiologists even focus on the fact that ILC is sneaky and can image differently. Recently, I have had CT scans and nuclear full body bone scans; PET/CT scans (recommended by a doc at MD Anderson); and an abdominal MRI. The clearest for ILC mets was apparently the abdominal MRI with contrast -- some stuff showed up on that that had not shown up on the other tests, or that showed up more like "shadows" on the other tests. Not sure that any of them clearly show ILC that well. If anyone has any other ideas on scans, I'd like to hear them as well.

Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 8/1/2019 Ibrance (palbociclib) Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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May 23, 2019 06:22AM Mavericksmom wrote:

I have an appointment with my MO in June. I would like to go to it with a list of important questions and the one that concerns me the most is recurrence in the intestines and mesentery and how to screen for that other than colonoscopy.

Also, my ILC was not seen on my mammogram, only as an area of suspicion on ultrasound. I really want yearly ultrasounds of my right breast. I can’t have a breast MRI. It’s frustrating not to have standard routine testing specifically for lobular cancer.



Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Jun 1, 2019 01:12PM Cin17 wrote:

I met the radiologist who caught the ILC in my right breast when I had an ultrasound on my healthy left breast a couple weeks ago. She was surprised to find out it was cancerous, had thought it would be benign but was doing due diligence when she flagged it. Thank heavens!

Thank you for sharing the OP link, this is great information. Now, just need to find a way to spur more research into ILC

Dx 2/4/2019, ILC, Right, 3cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 3/14/2019 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant
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Jun 2, 2019 01:24PM GlobalGal wrote:

How about ILC in the neck lymph nodes and nowhere else?

Imagine my ENT surgeon's surprise at finding de novo metastatic breast breast cancer in my neck's 3 central lymph nodes following a complete thyroidectomy for papillary thyroid cancer (3/20/19). 

Since then, however, I've had no other diagnostic confirmation of breast cancer (PET scan, breast CT, MRI-guided breast biopsy, breast ultrasounds, 12 years of annual mammograms). Due to a scarcity of surgical lymph node tissue, only basic tests were run (no FISH or mutations identified); it "appears" to be lobular on the pathology report (which has been reviewed by several pathologists).

None of the doctors at our HMOs breast cancer center have ever seen this kind of presentation, nor have their colleagues consulted at larger cancer programs. 

So far, I am a "diagnostic enigma".

GlobalGal

***



Dx 3/2019, de novo stage IV metastatic breast cancer with metastases to 3 central lymph nodes in neck following complete thyroidectomy for papillary thyroid cancer WITH NO PRIMARY BREAST CANCER IDENTIFIED (so far) and NO OTHER METS (so far); diagnosed at age 65

ER+ (88%), PGR+(2%), HER2-equivocal (not enough remaining surgical lymph node tissue for FISH or mutations testing), KI67 borderline (15%)Type of Breast Cancer: "Possibly lobular" (ILC)



Surgery: None

Radiation Therapy: None



Chemotherapy: None



Targeted Therapy: None



Hormonal Therapy: 6/03/19 Anastrozole



Other Cancer Treatment: Radioiodine Treatment (RAI) for papillary thyroid cancer scheduled for June 19, 2019



Other Diagnosis: Severe osteoporosis prior to cancer diagnosis (treated with one-time Reclast infusion in 2017; improved bone status to osteopenia on 12/18 bone scan)




De novo stage IV metastatic breast cancer with metastases to 3 central lymph nodes in neck following complete thyroidectomy for papillary thyroid cancer WITH NO PRIMARY BREAST CANCER IDENTIFIED and NO OTHER METS (so far) Dx 3/20/2019, Stage IV, metastasized to other, ER+/PR+ Hormonal Therapy 6/4/2019
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Jun 2, 2019 03:29PM jessie123 wrote:

GlobalGal --- Oh, that is just terrible -- so scary!. I'm going to take your post to my surgeon when I see her on Tuesday. She performs just endocrine and breast surgery -- so has done many thyroid surgeries. She's at a teaching hospital and has been involved in clinical trials. I'll let you know what she says.

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 4/14/2019 Whole-breast: Breast
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Jun 2, 2019 06:06PM GlobalGal wrote:

Thank you, Jessie! I would be very interested to hear what your surgeon has to say.

Kind regards,

GlobalGal

De novo stage IV metastatic breast cancer with metastases to 3 central lymph nodes in neck following complete thyroidectomy for papillary thyroid cancer WITH NO PRIMARY BREAST CANCER IDENTIFIED and NO OTHER METS (so far) Dx 3/20/2019, Stage IV, metastasized to other, ER+/PR+ Hormonal Therapy 6/4/2019
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Jun 6, 2019 07:05PM jessie123 wrote:

GlobalGal -- I am so, so, so sorry -- I forgot to take your post to my surgeon. I had it out, but I get so nervous before visits I just forgot to put it into my purse. I'll see her again in mid July so will put the post into my car now so I won't forget it.

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 4/14/2019 Whole-breast: Breast
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Jun 8, 2019 06:10PM robinblessed54 wrote:

General question: I just got my results of my CA15-3 test. Had it 6 months ago and going in for MO appt in July. Mine keeps creeping up every time. I have gone from 20.6, 21.6 and now 22.9. I know I am within the range, but as you all know, you can't let it go sometimes. Sad

As we have all been discussing, I have intestinal problems and have had 7 pre-cancerous polyps removed 2 years ago. My MO says I worry too much. Well, I don't think she has walked in any of our shoes. :( Can any of you tell me what your scores are and how your MO handles it? I also have Monoclonal Gammopathy and have all kinds of tests for that every 6 months too. Oh the joy of cancer, the gift that keeps on giving.

Thanks,

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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Jun 20, 2019 09:16AM mtks wrote:

I’m not sure where to post so I came here for direction and support.

I have had a bilateral mastectomy with reconstruction in 2010. 9 years ago.. In February of this year I felt in the shower a lump in my right breast area, by the top/sideof implant-close to pec muscle. Prior to this I have been so tired with some bone and muscle pain in my lower legs, mainly left. Then gradually other breast area, groin and neck. My oncologist ran a blood serum test-ANA MULTIPLEX W/REFLEX 11 AB CASCADE. ANA CHOICE (R) SCREEN POSITIVE. DNA (DS) ANTIBODY 52H He said i needed to see a Rheumatologist. After educating myself on this blood work, i find that some cancers are a result of this test. He insists to have rheumatologist check it out first. I have these symptoms: Very tired!, cough,generalized lymph node swelling, nausea, bone pain (NOT JOINT PAIN), headaches during the night that are similar to a BAD hangover with throat and neck pain, sweating at night, and now pain in my rib and above naval area. I sound like a mess. Anyone have any thoughts for me or experiencing similar issue

age 53 at DX/ Onco score 17 Dx 8/31/2010, ILC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jun 20, 2019 10:05AM - edited Jun 20, 2019 10:07AM by light1candle

Hi mtks So sorry that you are feeling so bad right now. You are doing the absolute right thing getting that new lump checked out. I think you must be asking if your systemic symptoms may be related to a recurrence or spread of cancer and I have no answers for that. I do think your doc was right to refer you to a rheumatologist, however. As a lupus patient I know that a positive antinuclear antibody test (ANA test) is a common finding in many autoimmune illnesses, but can also appear in people without these diseases. But the fact that you had positive anti double-stranded DNA antibodies is even more telling - many lupus patients have these particular auto-antibodies and few people without autoimmune disease have them. Lupus and similar autoimmune disorders can cause many of the systemic symptoms that you describe so I think a consultation with a rheumatologist is likely a good idea. Also, you mentioned that you had implants? I am no expert on this, but I have read that some women experience autoimmune problems from their body's reaction to their implants.

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
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Aug 28, 2019 10:26AM windingshores wrote:

I had an autoimmune reaction to my breast cancer, which is extremely rare and called "paraneoplastic syndrome." However, I already had a diagnosis of lupus. I would see a rheumatologist but docs should also be aware that an immune system with a predisposition to attacking itself, can react to cancer with elevated autoimmunity. The anti-DNA is much more significant than the ANA and is almost always associated with lupus, as far as I know.

Dx 2/2015, DCIS/ILC/IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery Lymph node removal; Mastectomy: Right Surgery Mastectomy: Left; Prophylactic mastectomy: Left Hormonal Therapy
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Sep 17, 2019 03:20PM mtks wrote:

Hi, Rheumatologist ruled out autoimmune diseases and sent me back to oncologist.. just wish i knew what test to ask for,,my oncologist uses the CEA tumor marker instead of the 15-3??what marker test does anyone’s dr use when ordering labs? Exhausted! Uf

age 53 at DX/ Onco score 17 Dx 8/31/2010, ILC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Sep 17, 2019 03:49PM robinblessed54 wrote:

My MO yses CA15-3

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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