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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: finding those sneaky mets

Topic: finding those sneaky mets

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

Posted on: Oct 12, 2011 12:15PM

kristinpianista wrote:

Hi,
I have a question for you lobular types. How have your mets been discovered? I myself have no breast tumor, no tumor markers either, but extensive mets in my bone marrow and colon. My cancer doesn't show up on scans and has evaded most routine imaging. At the moment, we are trying to figure out if I have growth in my small intestine, which seems to be especially hard to track.

Do we just sit around and wait for some nasty thing to happen? I had an intestinal obstruction once and it's not something I'm anxious to repeat....

Thanks, Kristin

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Oct 12, 2011 03:43PM nash wrote:

I had a cousin with ILC mets with a similar situation as you, although she did have a primary tumor and extensive nodal invovlement. Her intestinal mets were discovered as a mass during a routine pelvic exam.

Nothing ever showed up on her scans, even her PET. She did have high TMs, though, and the onc also ran CTC (Circulating Tumor Cells) on her, which registered the mets.

How did they find your mets? Was it b/c of the intestinal obstruction?

Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18

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Oct 12, 2011 09:11PM JudyO wrote:

I have a friend who has ILC mets with a similar situation. She had stomach problems and had problems with bruising. She went to our local providers then headed out to the Mayo Clinic. They didn't even dx the breast cancer mets. She finally had exploratory surgery at our local hospital  and they found cancer all over in her abdomen. Stomach had some and her spleen was the cause of the bruising. Nothing ever showed up on scans.

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Nov 16, 2011 11:57AM rakulynda wrote:

My original ILC was dx 8 years ago.  Last year I started having trouble eating an entire meal and over a period of 6 months, lost 50 pounds.  PET and CT scans showed "something" going on in the abdominal area but an abdominal MRI and upper GI endoscopy revealed cancer inside and surrounding my stomach.  Mets to bones too.  My only symptom that mets were attacking me was early satiety.  ILC is a sneaky form, showing up in unexpected places.  Fortunately, my original tumor showed up as a definite lump and was easily detected on the mammo and ultrasound.  My only advice:  stay in tune with signals that your body is acting strangely and have them checked out.  After all, BC is supposed to go to bones, brain, liver and lungs, not stomach!!

Dx 9/2002, ILC, 2cm, Stage I, Grade 2, 0/1 nodes, mets, ER+/PR+, HER2-
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Nov 17, 2011 11:49AM wallycat wrote:

I have nothing to add except my heart-felt sadness that any of us endures this.

Posts like these scare the heebee-jeebies out of me.  I swear I am starting to walk around like a hypochondriac!!

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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Nov 17, 2011 11:54AM yorkiemom wrote:

Wallycat, me too! I have ILC, probably stage 1 (will know for sure after surgery next Tuesday). Mine was found on a mamo. Although I know they are hard to detect on mamos (I feel VERY lucky), I thought MRIs would catch them. Horrifying thought that they might not! My onc recommends MRIs and mammos every alternating 6 months. I HOPE this is enough to catch any more cancer cells! 

Life is what happens while we're making other plans.

Dx 10/18/2011, IDC, 1cm, Stage IIa, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Nov 17, 2011 03:02PM wallycat wrote:

I just emailed a copy of this thread to my onco.

She said ILC mets like this are VERY rare.  Lovely....again with the stats.

If you happen to be the unlucky one, you are 100%...ugh.

She said shes been doing this since 1991 and has not seen one case.  Some comfort, but not much.  Sigh.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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Nov 17, 2011 03:23PM kt1966 wrote:

I totally agree Wallycat. I feel quite paranoid sometimes. Especially at night- during the day I'm busy enough to forget usually, and the sun is shining and life is great..

I've just had a scare with rising tumour markers (vague symptoms like SOB, GERD, cough, rt side rib/back discomfort...) but NED on scans. Since starting a new drug regime the markers have come down (from 387 down to 135). But I still wonder...(CA15-3 normal is 40 or less!) The cough & SOB & GERD have gone...

I'm sorry that you are dealing with mets Rakulynda- is your new treatment dealing to them?

How are you getting on kristinpianista?

I hope you are both feeling well. 

Age at Diagnosis: 37

Dx 12/11/2003, ILC, 4cm, Stage IIIa, Grade 2, 4/10 nodes, ER+/PR+, HER2-Surgery 12/16/2003 Mastectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)Chemotherapy 02/25/2004 Adriamycin, CytoxanRadiation Therapy 05/26/2004 ExternalSurgery 10/08/2013 Prophylactic Mastectomy (Left)
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Nov 17, 2011 03:30PM yorkiemom wrote:

Wallycat, thanks for getting that info from your onco. Even though ANY chance of cancer cells being undetected by screenings is terrifying, it's reassurring to know how rare that is. 

Life is what happens while we're making other plans.

Dx 10/18/2011, IDC, 1cm, Stage IIa, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Nov 17, 2011 03:43PM IllinoisNancy wrote:

I don't think we will ever feel comfortable with ILC.  My first dx was found by a routine mammogram and was only 1 cm in size with nothing in the nodes.  I felt pretty confident that it was gone but then it came back 4 years later.  This time the mammogram didn't show anything but the MRI did.  The only way I found out that it was back was by a physical examination by my breast surgeon and she saw two tiny pink dots on the skin which ended up being a local recurrence of ILC.  Now I panic everytime I see any redness even if it is from a bra strap rubbing on my skin.  I don't have breasts anymore so I don't worry about that but I sure worry about my skin.  What would they do if it came back again?  Would they skin me like a rabbit? LOL?

Nancy

OncotypeDX was 9, Pleomorphic ILC, Breast cancer twice, 10/06 and 10/10,

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Nov 17, 2011 04:36PM wallycat wrote:

Nancy, you sound like your good old happy self Laughing  especially considering all the crap you have gone through.  Scary to think 2 pink dots could mean recurrence.

I had blistering sunburns on my back and often feel little bumps and now wonder if I should get a derm again...oy, it never ends, does it.

 I will say that the only consolation I have is that I hear about some cancers that are very slow growing and wonder if any of us would get mets that went undetected because they caused no symptoms, would that be so bad?  That maybe we would die of something else anyway.

I swear I had my breast cancer at least 8 or so years before it was dx.  I wonder if I had not found it myself till after menopause, would it grow even slower without estrogen and maybe I could have niavely gone to my grave with it and died from something else....one can dream.....

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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Nov 17, 2011 09:02PM IllinoisNancy wrote:

Hi Wallycat,

I couldn't agree with you more!! I think some of these slow old ILC cells could hang out forever and not cause any real damage.  My mom is 90 and she has never had a pap smear, mammogram, colonoscopy, etc. She takes one baby asprin a day and gets along quit well.  Sometimes I think we are over checked and mess with things that are better left alone.  I don't want anymore tests unless I have symptoms.  It was sure nice hearing from you!!

Take care,

Nancy

OncotypeDX was 9, Pleomorphic ILC, Breast cancer twice, 10/06 and 10/10,

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Nov 29, 2011 10:28PM IllinoisNancy wrote:

Hi Wallycat,  I was just rereading your post and it made me think about death and dying. For some reason I would rather die of a heart attack or stroke rather than BC.  Why is that?  Why is cancer so much scarier?  I guess because it can linger and cause a lot of pain.  Heart attacks are quick and over so your family don't have to see you suffer.  I hate thinking about these dark thoughts but they enter my mind quite often.

OncotypeDX was 9, Pleomorphic ILC, Breast cancer twice, 10/06 and 10/10,

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Nov 29, 2011 11:39PM wallycat wrote:

Hi Nancy,

I think fear of death is normal...even those that swear religion and an afterlife --I can't imagine they have no fear.  Maybe not fear of what will happen, but fear or regret or something similar since no one KNOWS what happens, we can only create our own opinions.  That's my thinking anyway.  And of course, the fact that we have had breast cancer makes it more viable as cause of death than, say, heart attack or stroke...at least for the moment...sigh.  My father had a massive heart attack on a December evening and called to say he was in horrible pain ...of course would not go to the doctor and assumed it was "the flu"..oy.  In FEBRUARY, he finally went to the doc.  He had a lingering and long end, humiliation of diapers not getting to bathroom on time, nursing home for rehab, etc....his dignity and the pain of the heart attack.  He also had a mild stroke 15 or so years prior and had only minor issues, but many people have strokes that render them vegetables.  

I agree, I think going quickly and not having to be in pain is every person's dream and of course, dying like George Burns, 100 years old, wealthy enough to have his needs met, then going in his sleep.  But we don't get to pick.

Pain meds and hospice and who knows what else is available so first, STOP thinking about dying.  When I freak out about death (and who doesn't go to the ugly place here), I remind myself that EVERYONE...ALL OF US, will die.  It isn't like some punishment I will be getting for lack of being good or whatever I am blaming myself at the moment....some of us just go sooner than others.

I hope all of us go like Julia Child...92, eating well, drinking well, having lots of friends and doing something joyful througout.....she had mastectomy and that was that.....

I sometimes wonder if we just know too much these days and if these thoughts affect our outcome.  I'd like to think that is not the case, but days when I dwell on whether my cancer is aggressive or not or if it will come back....I try to think of other things ...try...I try....because I ultimately don't get to decide.  Maybe that is what makes it frustrating.  We'd like to think not having healthy habits can create heart attacks or strokes (but I have known patients who did it all right and even had great cholesterol numbers and still they had heart attacks) where BC is so out of our control an flung on us...

 I'm rambling.....

Just know you are not alone......we are all worried.  I don't think it makes any difference the stage or type of cancer.

((((((((((((Nancy)))))))))))))))))))))))))))))

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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Nov 30, 2011 03:52PM Kleenex wrote:

I think that what happens to us when we get breast cancer - and probably anything else that could eventually lead to one's demise - is that we wake up and have to admit that death is, really, where we're all heading. It's just that we now might have an idea of what might get us, although we could still step out in front of a bus accidentally one day (or, here in Texas, be run off the road by a black, extended-cab pickup truck).

I do hate knowing that weird physical things I experience could be meaningfully dangerous - I miss the days of just thinking, oh, that's probably nothing. I try to apply the "if it's been weird for two weeks, check it out" approach. I also dislike how ILC is just a subcategory on the side - I wish they had good information on MY cancer and how it might metastasize. I asked my oncologist one time, and she immediately spouted the "bones, brains, lungs" response, and when I tried to suggest that I'd heard that ILC can pop up in the abdominal area, etc., rather than these places, she dismissed that. In any case, they're not really LOOKING for mets, are they? They're really sort of tracking us for new cancers or recurrence, which they hope to treat to avoid mets. Once you HAVE mets, the whole game changes, I guess.

Nancy, I've been a lurker during most of your unfun recurrence - good to see your sense of humor. I'm one of those people who can use your story to keep an eye on MY prognosis, since our initial diagnosis and treatment was not so different. Although it sucks that you had to go through all of that, at least it appears that once again, vigilance prevented the cancer from going anywhere outside the breast (or breast skin, as it were). Hopefully, you are done, save the dark thoughts we are all stuck with after facing this beast... 

I'm rambling, too. Good to have a place to do that! :)

Coleen 

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Nov 30, 2011 04:13PM Ellie1959 wrote:

Just a quick observance - kind of seconding what Wallycat said - we will all die - this is not news - have any of you heard the Vince Gill song "Threaten me with Heaven" ? Kind of sums this up to me - IMHO -

Dx 12/27/2005, ILC, 5cm, Stage IIIa, Grade 3, 2/12 nodes, ER+, HER2-
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Nov 30, 2011 05:02PM IllinoisNancy wrote:

Hi Friends,

Thanks again for all of your posts.  I started a new treatment today and I really don't know why.  I have been feeling great but my MO decided I needed to start getting shots of Prolia every 6 months. I read all of the possible side effects and it sounds awful.  I decided to be a good patient and try it anyway. So....it's been 3 hours since injection and so far so good.  Have any of you been given Prolia?

Take care and thanks again,

Nancy

PS:  Love you Wallycat!!

OncotypeDX was 9, Pleomorphic ILC, Breast cancer twice, 10/06 and 10/10,

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Nov 30, 2011 05:50PM, edited Dec 1, 2011 02:31AM by slousha

This Post was deleted by slousha.
Dx 11/13/2009, IDC, 1cm, Stage IIIa, Grade 3, 7/15 nodes, ER+/PR+, HER2+
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Dec 1, 2011 12:44AM Robyn_S wrote:

Hi Nancy , I am in a clinical study- Dcare, that is testing the efficacy of denosumab in preventing bone metastases. It is a double blind RCT but after inspecting the syringes suspect that I have the active arm ( I know what saline looks like and it wasn't saline).
I have had no side effects at all- I had shots (not painful) with each chemo and now every 3 months. Like most drugs there is a long list of reported side effects that may occur but it would be unfortunate to have all SEs! A benefit for me for being in the study is screening - a CT/bone scan each year which I value for peace of mind with possible abdominal mets in the future.

Age 46 @ Dx, BMX, FEC/T, Rads, Tamoxifen, Femara, DIEP 2012 ( the works!!)

Dx 3/8/2011, ILC, 6cm+, Stage IIIa, Grade 1, 1/5 nodes, ER+/PR+, HER2-
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Dec 1, 2011 02:33AM slousha wrote:

Hi Nancy,

I'm not ILC, but I'm posting because of Prolia (denosumab). It was approved in 2010 for treating of osteoporosis and in September 2011 approved FDA Prolia as treatment for prevention of bone metastasis at cancer patients. I have a lot of dates about it.

Best wishes

Usha

Dx 11/13/2009, IDC, 1cm, Stage IIIa, Grade 3, 7/15 nodes, ER+/PR+, HER2+
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Dec 28, 2011 12:41PM kristinpianista wrote:

Hi again,
It seems my post hit a nerve. What I initially wanted to know was what diagnostic tools had worked for other lobular people. But what surfaced was the very real issue we all face every day, living with uncertainty and fear of the unknown. Coping with this is a way of life for all cancer patients - or anyone diagnosed with a potentially fatal illness - but for those of us with lobular disease, the unknown is more frightening because the tumors can be so hard to image. This is tough to live with, but it is our reality. I've found that the only way I can cope is to acknowledge my fear and get on with the business of living my life. My very wise therapist said it best: we have a choice - we can look at fear or look through fear.

My other comment is that yes, indeed, my case is extremely rare. I'm being treated at a major research facility and they're scratching their heads. I was diagnosed at stage IV, mets to bone marrow and large intestine, no breast tumor was ever found. My recent progression did not show up on pet or mri scans. My situation is unique. Oy. All I can say is, why be boring?

I would like to know if any research is being done on improving diagnostic techniques for lobular bc. I have two daughters and wish their generation could be spared some of this.

Wishing you all a happy New Year.



Dx 1/5/2010, ILC, Stage IV, mets, ER+/PR+, HER2-
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Dec 28, 2011 02:41PM Racy wrote:

kristinpianista, the Wesley Research Institute in Brisbane, Australia has a study in progress regarding lobular features and imaging techniques.

Dx 2010, ILC, 2cm, Stage IIa, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Dec 28, 2011 04:18PM BettyBoo wrote:

I am coming up for my second annual check up, my onc says mammogram is sufficient follow up once a year on the remaining breast, it scares me as the original tumours never showed on the mammo but were seen on US. @Nancy, my friend is stage 4 with bone mets and has Prolia once a month now since 2010 with no side effects as at all.

Dx 2010, DCIS, 5cm, Grade 3, ER+Dx 2010, ILC, 6cm+, Stage IIb, Grade 2, ER+, HER2-Surgery 02/15/2010 Mastectomy (Right); Lymph Node Removal (Right); Reconstruction: Latissimus Dorsi flap (Right)Chemotherapy 04/08/2010 Cytoxan, Ellence, fluorouracil, Taxotere
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Jan 2, 2012 10:55PM Hipline wrote:

I just had my one year follow up and the onco said a mammogram was enough but my original tumor was never detected by a mammogram! I went back to my breast surgeon and she ordered an MRI and said we'll do a PET in 6 months. She said the onco is waiting for symptoms to appear and by that time it will be Stage 3 or 4. The breast surgeon is more aggressive about looking out for me. And that's very ironic because the onco said I don't need the breast surgeon anymore. Well I hope I don't need her again for any surgery but I will follow her maintanence advice. I am changing oncologists too this month!

Dx 11/16/2010, ILC, 2cm, Stage IIa, Grade 2, 0/2 nodes, ER+/PR+, HER2-Surgery 12/13/2010 Mastectomy (Left); Reconstruction: Tissue expander placement (Left)Hormonal Therapy 01/31/2011 TamoxifenHormonal Therapy 01/23/2014 Femara
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Jan 2, 2012 11:08PM Racy wrote:

Good for you Hipline. My ILC was detected on ultrasound as well but not on mammo.

Dx 2010, ILC, 2cm, Stage IIa, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Jan 4, 2012 12:49AM CamilleL wrote:

I have a similar situation.  I have no symptoms, no blood markers, nothing shows on a PETscan or mammogram, and my breast tumor was virtually undetectable---but a sharp-eyed radiologist insisted on a sonogram which didn't show much of anything, but led to a biopsy.  The result was a shock to everyone.   If I didn't have two biopsies to prove the ILC and a met to the pancreas (and there's a possible met to the lung, a small nodule that has not grown and shows no "heat"), there would be no way to know I have stage 4 ILC---11 months after diganosis.  

My oncologist orders periodic CT scans, but says the only way he's going to know if the cancer spreads or grows is through my report of symptoms.  It's hard not to think that every twinge is a symptom.  So we're in a strange minority.   I'm doing a heavy program of adjunct treatment in addition to Arimidex and hope to keep further metastases at bay.  And if the cancer does progress, there are still a lot of treatment options ahead.  All we can do is fight the best we can, try not to think every stomach ache is stomach cancer, but stay alert to what might be a symptom of progression.  A balancing act for every single day.

Dx 1/29/2011, ILC, Stage IV, mets, ER+
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Jan 14, 2012 11:32AM BettyBoo wrote:

Waiting now for CT scan appointment after doc thought she could feel nodule under right rib area, quite worried. Liver FTs were normal though, as was chest X-ray. Can you have mets with no nodes so soon after DX?

Dx 2010, DCIS, 5cm, Grade 3, ER+Dx 2010, ILC, 6cm+, Stage IIb, Grade 2, ER+, HER2-Surgery 02/15/2010 Mastectomy (Right); Lymph Node Removal (Right); Reconstruction: Latissimus Dorsi flap (Right)Chemotherapy 04/08/2010 Cytoxan, Ellence, fluorouracil, Taxotere
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Jan 14, 2012 11:34AM, edited Jan 14, 2012 01:08PM by BettyBoo

Sorry duplicate post

Dx 2010, DCIS, 5cm, Grade 3, ER+Dx 2010, ILC, 6cm+, Stage IIb, Grade 2, ER+, HER2-Surgery 02/15/2010 Mastectomy (Right); Lymph Node Removal (Right); Reconstruction: Latissimus Dorsi flap (Right)Chemotherapy 04/08/2010 Cytoxan, Ellence, fluorouracil, Taxotere
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Jan 14, 2012 12:37PM rosie06ct wrote:

thanks for  your post it seemed to help me a lot :)

Dx 6/7/2011, ILC, 1cm, Stage IV, Grade 1, mets, ER+/PR+, HER2-Targeted Therapy 07/11/2013 AfinitorHormonal Therapy 08/01/2013 Aromasin
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Mar 22, 2012 11:07PM penny4cats wrote:

Does anyone know about a genetic test for lobular. I thought german scientists had isolated the gene  for lobular but can't find the post. My lobular was only detected after extensive spread the 1.5 cm lymph lode was  the mammo sign. It was undetected for years, Iwas never sent for digital or mri and never told mammo useless for dense breasts. My mets to the peritoneal cavity, colon, stomach were picked up via small bowel obstruction from eating healthy brussel sprouts at thanksgiving 2 years ago. I am into my third year as a diagnosed metster my stage 3c dx did not warrant closer f/u at the prestigious /Dana Farber no tumour markers or scans just mammo and mri on remaining breast. now we don't do anything about the breast and just chest and abd/pelvic ct. life in lobular land- an equal opportunity metster-will go anywhere and set up shop.

Dx 12/1/2009, ILC, 5cm, Stage IV, Grade 1, 13/17 nodes, mets, ER+/PR+, HER2-
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Apr 5, 2012 05:38PM Katarina wrote:

It's sneaky and I don't think most oncologists or testing protocols are focusing on ILC or IBC since they're not in 80% of invasive cancer types. I don't even want to share how misdiagnosed for how many years that is my story.

I feel as though my body talking to me, and faith in God, are my best tools. 

I live one day at a time and try to enjoy each day as if it were my last, so I have some happiness and joy.

Hugs 

Dx 1/25/2011, ILC, 6cm+, Stage IIIc, Grade 3, 11/13 nodes, ER+/PR+, HER2-

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