Missed diagnosis - Lobular - six years

Deal KBL,

I too have had multiple PET scans, MRIs, bone scans, and mammograms with no primary found. My breast cancer was identified in my neck’s 3 central lymph nodes, which were removed as part of a thyroidectomy for papillary thyroid cancer.

The pathologist thought the cancer “might be lobular”, but there wasn’t much tissue to work with. In fact, I don’t even know my HER status (not enough tissue for FISH), but they are treating me as if I’m positive.

I do worry that it may be in my GI system since that is where lobular tends to go. For the last 6 months, I have had some new symptoms, mainly constipation and diarrhea and some loss of appetite with early satiety, but no weight loss. I probably need to discuss with my oncologist.

I am sorry to hear you have been undiagnosed/misdiagnosed for such a long time!!!

Giant hugs,
GlobalGal

KBL, I did not know your story. Wow. You probably have all kinds of emotions going through all that, and perhaps not the most confidence in the medical community.

I didn't experience anything like that. I had annual mammos for over ten years. Then a week after the last mammo in 2010, I felt a gnarly thickening in my breast and thus began additional testing. Eventually, a bone scan and PET determined I had ilc and bone mets. I wasn't having any symptoms.

It is said that ilc likes to “hide” and therefore often goes undetected for a long time. The mass I had was about 3 inches by 2 inches, so it had been there awhile! My belief is the most recent mammo I'd had squished on my breast hard enough that the thickening finally “popped" to be felt through the skin, which was in the six o clock, underside position of my ample breast. On the mammo, it only showed up as an asymmetry, not a mass or lump, and the mammo clinic called me the same day I found the lump.

Did you have thyroid cancer or that's what they thought and it turned out to be breast cancer? How was it finally detected? Were you having issues with your throat?

Dear KBL,

I had thyroid nodules (multinodular goiter) with Hashimoto's thyroiditis since about 2006, an inflammation which was tamped down by taking daily levothyroid for many years. I had no issues with my throat.

A neck ultrasound and fine needle biopsy in 2017 did not find papillary thyroid cancer, but did in 2019.

The ENT surgeon removed the thyroid along with three central neck lymph nodes to see if the papillary thyroid cancer had spread beyond the affected nodule, which it had not. Instead, the pathologist found breast cancer in the 3 neck lymph nodes, which shocked the ENT surgeon and pretty much everyone else who has dealt with my case as they could not find breast cancer elsewhere in my body.

Following thyroid surgery, I had radioactive iodine (RAI) treatment (I-131) followed by a whole body scan, which showed no remaining thyroid cancer anywhere in my body.

Is it in the GI system or something else? I just received some lab work results, which indicates "slight Poikilocytosis", abnormally shaped red blood cells, probably due to anemia (due to something like B-12, folate, or iron deficiency). As I do not have celiac disease and do not drink alcohol, it is likely a vitamin deficiency--and may help explain some of my recent GI symptoms. Nonetheless, per your suggestion, I will ask about endoscopy/colonoscopy.

Best,

Global Gal

KBL - the first instance of the mets was noted in the 2013 report. Had you not had a car accident you still could have, to this day or maybe within the last year or two, have been none the wiser, right? I guess I wonder how long those mets had been there to have parked and hung out for so long, not just from 2013, but before as well. It is certainly a unique case and an awful shame that someone, ANYONE didn't speak up and say hey, lets stick a needle in one of those lesions and get a read on exactly what it is. You have every right to feel angry at the unfairness of the situation.

I had mammograms religiously every two years. Always normal. Then I found some lumps in my armpit. Ultrasound reported as normal reactive lymph nodes.No further action. 10 months later I thought I felt a lump in the breast but mammo and ultrasound all clear.However the lumps in the armpit were looking decidedly abnormal on ultrasound. Core biopsy confirmed ILC. No lumps were ever palpated by clinicians in the breast despite multifocal ILC on pathology following mastectomy.

My take:

1. S#*t sometimes happens and ILC is a bas#*rd of a disease.

2. Perhaps the initial radiologist Should have had a higher index of suspicion and recommended a biopsy given I was post-menopausal and the so-called reactive nodes were unilateral. A different radiologist told me that ILC is a radiologist’s nightmare. So it should be.

3. As the ca was probably in my nodes from the outset, there may not have been too much difference to my prognosis as the ca was highly undifferentiated but I may have had a bit longer in Stage III than I did.

4. Rather than railing against the unjust nature of all of this I decided to be as positive as possible and despite some challenges along the way, have managed to keep focus and my head above water. My motto- carpe diem

KBL you have really had a rough time and deserve not only to be kind to yourself but to receive kindness from those around you. Like you I became a grandma since my diagnosis and am so grateful for that as well.

I am very private about the extent of my disease so it’s great to have this forum to share and read about all the wonderfully brave admirable women out there.

I also have anemia and have had it since October of 2018, before treatment started.

Dear KBL,

Do you know what kind of anemia? How was it treated?

My abnormally shaped blood cells may due to a vitamin deficiency, like B12, folate, or iron, since I don't have celiac disease or alcoholism or liver disease.

Although my diet is full of B12-friendly foods, there can be a loss of something called the "intrinsic factor", which is needed to help absorb vitamin B, which is typically caused by an autoimmune attack on the cells that produce it in the stomach.

GlobalGal

ILC is a very sneaky disease and spreads to other parts of the body other types of BC don't however, the good news is that it grows very, very slowly and it is called lazy cancer. Mine was found by the luck. A very experienced radiologist who checked my mammogram suggested that some tiny new calcifications to be tested even though I would be in less than 1% chance of BC. I did have the biopsy that comes back ILC. It was found small, I decided BMX but unfortunately, it is out there somewhere in my body because 2 nodes are found positive. I had a 6 month appt. with the oncologist and yesterday, he told me that if it is caught early or 6 months late would be the same treatment. So, don't feel guilty for not catching early, you probably will have the same AI treatments as the rest of us. Chemo doesn't really work and radiation goes with lumpectomy and it is local but medication is the one that will keep it in check. Anti-hormonal treatments are very useful for ILC.

To report back to you, I had Zometa infusion yesterday and I can tell you it was way easier than I thought. I did drink lots of water before, during, and after and I was worried I would need to go to the bathroom all the time but for some reason, I was fine. Today I am feeling OK. I was told I may have some bone pain but honestly, the bone pain I had before the infusion seems to have been gone away. Are you having your Zometa soon? What other treatments are you recommended for?