Question about imaging and biopsies

I was diagnosed in May with Stage IV de novo breast cancer to my GI tract after two different endoscopies showed cancer in two places in my stomach from the biopsies. They did two endoscopies to be sure, and I’ve had a second opinion on the pathology. All imaging, including PET/CT, mammogram, ultrasound, breast MRI, and just last Friday a CT scan of neck, chest, pelvis, and abdomen, do not show disease. I’ve been on Ibrance and Letrozole since June. I’m just curious if anyone here has had cancer in biopsies that have not shown in imaging from the start. It’s very confusing to me.

[Sister3nkc]

Yes, that happened to me!

In October 2014 I went to family doctor with complaints of shortness of breath. I had a dry, nonproductive cough. They did Xrays and CT of chest. Said i had pneumonia and put me on antibiotics and referred me to a pulmonologist. I had ZERO Symptoms of pneumonia. Had to wait over a month to see pulmonologist. The shortness of breath was growing worse. Finally got to see pulmonologist who said I had fluid in pleural space of left lung. He sent me to the hospital to have it drained immediately. They pulled 625ml from left pleural space, no wonder I was so short of breath! That fluid was negative for cancer. Several months passed and i was not felling better. Went to see a Cardiothoracic specialist in February, 4 months later. He looked at my CT Scan (the one done in October)and scheduled me for VAT procedure STAT. When he did the video assisted scope he could see the tumor cells scattered over the outer pleural membrane and concentrated nodules in left lower lung. That is how I was diagnosed with stage 4. At least FOUR other doctors had seen my scans and missed the cancer growing in my left lower lung! I've been told I have NED since 6 months into the treatment of Ibrance/letrozole. It is very difficult for me to trust that I am truly NED after what happened at the start.

[Lilykristymichael in reply to Sister3nkc]

What does NED stand for?

[Hidden in reply to Lilykristymichael]

No evidence of disease.

[Lilykristymichael in reply to Hidden]

Of course. Thanks

[Hidden in reply to Sister3nkc]

I was beginning to feel so alone in the way things have happened. I’m so sorry that happened to you. I’m so glad they figured it out. The gastro said he didn’t see anything suspicious but sent samples for biopsy anyway, and he was shocked when it came back with cancer. I’m going to be happy that the meds are working and enjoy life. You are still here, so that gives me hope. We do know our bodies. I think you’ll know if something isn’t right. Thank you so much for your reply.

[Red71]

I have metastatic lesions to my bones. My first scan after starting Ibrance/Femara was no progression and my second scan was NED. I’m due for my next scan before Christmas so I hope it continues to work. I think I’m more worried now than when I had evidence of disease because I really want it to keep working! Congratulations on your quick response and I’ll pull for it to keep working for you too!

[Hidden in reply to Red71]

Hi, Red71!

So you did have a scan that showed it first? I had scans before I started the meds that didn’t show anything either. That’s what I’m confused about. Just biopsies.

I’m really glad you’re NED. I hope the medication keeps working for you. I know it’s scary each time a scan comes up.

[Red71 in reply to Hidden]

I had both PET and CT scans. The PET scan shows abnormal activity, more uptake into lesions or tumors of the sugar substance that they inject. So if you didn’t have a PET scan the first time around, maybe that’s why they didn’t see it. I think they are more expensive and insurance doesn’t like paying for them unless there is a good reason(or at least THEY think it is a good reason!). Did you have a PET scan when they said you were NED? Elaine

[Hidden in reply to Red71]

Yes, believe it or not, I had a PET/CT first in May when I was first told and before I went on medication. I paid for it out of my own pocket. All it said was uptake in the stomach within normal limits.

[Hidden]

Hi, Sandra. It was an adenocarcinoma in the angularis and the gastric body. They did the immunohistochemistry (? Spelling) and I’m ER+, PR+, Her2-. I had two biopsies. The first time they only found it in the angularis, but the second time it was in both. It says it had an IHC pattern of CK7 and GATA3. Thank you for your interest. I’m just trying to be educated.

[Hidden]

I’m afraid I don’t understand your first question. I had lost ten pounds very quickly, was having very early satiety and nausea every time I ate, and I’ve had anemia since last October. My bloodwork has been a little “messy.” My tumor markers are also high. They did the endoscopy to try to see why, and that’s how they found it. They wanted to do a second one to confirm with more samples because he didn’t feel like he took enough the first time. Tumor markers - CEA 7.2, CA27-29 - 491.20, and CA15-3 - 220.10. They’ve come down a little since I started the meds, but I’d like them to keep dropping. I’m still not gaining weight, but I’m able to eat a little more. Still get full quickly. I appreciate your interest.

[Hidden]

I appreciate it so much. I totally understand where you’re coming from, and I will take whatever information I can get. I just want to understand this disease. Thank you!!!