Lobular breast cancer not on scans

Judi1952

I was originally diagnosed with stage 4 gastric cancer in the fall of 2012.  My MO did not believe I was sick enough and had a hunch the primary tumor was something else.  He had a tissue of origin test performed.  The results were 59% breast, 19% ovarian, 14% colorectal, !% thyroid, .9% gastric cancer.  My breast tumor markers were elevated as well.  My mom died of metastatic breast cancer at 58 years old.  I am an obese post  menopausal woman.  I was referred to a breast cancer doc and she agreed that I most likely had lobular breast cancer.  It usually mets to the stomach, ovaries, colon.  I had a mammography and breast MRI with no indication of a malignancy.  I am now being treated with anastrozole and injections of Faslodex instead of chemo.  I had three rounds of chemo from 11-12 to 1-13 with a marked reducion in the ascities in my abdomen although tumor markers were much the same.  So far, I have been on the hormone therapy for a week and will be reevaluted in 3 mos for its efficacy.  I am experiencing marked brain fog similar to chemo brain and depression  I am hoping that there are others out there with a smilar experience.  Anyone?

mary625

I haven't had the same experience, but curious to know if you are saying that they did not find your primary ILC tumor?

Rdrunner

mammo and ultra sound missed my ilc last january, ultra sound caught it in october but mammo still missed it. MRI put it as 4cm it ended up being 6cm. It is not uncommon for mammograms to miss lobular 

Judi1952

That is correct.  They have not found it...

lekker

Judi, have you been offered genetic counseling? There is a familial cancer syndrome caused by a mutation in the CDH1 gene and it can cause diffuse gastric cancer (not sure if this is the kind you have) and lobular breast cancer. Testing probably wouldn't guide your treatment decisions at this point, but it could be valuable information for other family members. I'm sorry you're going through this. My 1.2 cm ILC mass didn't show up on a mammo even though we could all easily feel it. Sneaky.

Momine

Lekker, that is very interesting. I recently found out that my paternal grandpa died because he had a stomach ache, they opened him to take his appendix and instead found all his intestines glued together. This was back in the 50s, and they told the family the adhesions were caused by childhood rickets, but that sounds fishy to me. The minute my uncle described it, my first thought was "lobular."

MelissaDallas

I have LCIS & had ovarian cancer. Both my Dad's mom & sister had colon cancer. They checked me for CHEK2 gene problem before they looked at BRCA. I was negative for all though.

Crescent5

MRIs & Mammograms did not catch my ILC tumors even though I was high risk and monitored closely. Mine were found after prophylactic bilateral mastectomies. Fortunately, there were very small.

Judi, I'm sorry this happened to you, and I wish you the very best. {{hugs}}

beth1965

Hi Judi1952

I had a 9 cm tumor that did not show up on 2 mammograms and one ultrasound even though we could feel and see it  bumping out at the top of my breast. I had mammo's every year for about 8 years nothing showed and apparently my cancer has been in me along time they said.

I hope your treatment goes well -good luck and best thoughts to you

lekker

I edited my above post because I accidentally typed CDH4 instead of CDH1 initially. Any woman who is diagnosed with breast cancer should try to look at her family history for all cancers. If you were diagnosed premenopausally, this is especially important. Most talk of genetic breast cancer mentions only the BRCA mutations, but there are a few other known causes: CHEK2, PALB2, CDH1, the mismatch repair genes associated with Lynch Syndrome, etc. If you search for "Familial Cancer Succeptibility Syndromes" on www.cancer.gov you can get a current list. Understand that these syndromes are rare and the vast majority of all cancers are considered sporadic. I've spent a lot of time researching this and I still don't have an answer as to why I'm on my second cancer at 42. I'm not giving up though - full BRCA sequencing results are expected this week and if it's negative, my genetic counselor is willing to discuss further testing for other mutations. The key is finding a genetic counselor who's willing to work with you on creating a good family history to see if there's a high level of suspicion for a genetic basis for your cancer.

noraLCIStoILC

Crescent5 - I was also monitored pretty frequently. No cancer on mammogram or sonogram, just tremendous proliferation of cysts and a solid mass in R breast (small by my standards compared to cysts that filled the palm of my hand). Mass was biopsied, no cancer but signs of abnormal cell division. Mass removed by lumpectomy, no cancer but LCIS. Decided to get PBMX because we just couldn't keep going through the screening, scanning, draining, biopsying, worrying merry-go-round. Pathology of PBMX showed no normal breast tissue on L and ICL (3mm) on R, R lymph node clean.

Today, 1 year since mammograms, 8 months since PBMX, and 6 months since exchange surgery... My breasts don't hurt anymore. I can hug my husband as much as he wants (and he's a big hugger). I look normal in clothes now.

I'm beginning to not worry that the cancer is somewhere else in my body. I'm adjusting to the Tamoxifen. And, I'm surprised at how happy and sexy I feel.