finding those sneaky mets

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?

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!!

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! 

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. 

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

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

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)))))))))))))))))))))))))))))

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 -

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, because my MO wanted to give me, but I didn't agree just yet. I'm really interested in your reactions.

Sorry, English isn't my native language.

Best wishes

Usha

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

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

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!

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.

Sorry duplicate post

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.