Organ metastasis

[KMBL_]

I feel like I’m one of very few who has the breast cancer in my stomach and not in lungs or bone. Is there anyone else in this group with the cancer in their stomach? That was the only place they saw it, but after my second CT, the radiologist sees a very small area in my omentum by my right abdomen. Just curious if I’m alone in this kind of spread. I was diagnosed de novo. I plan on having another endoscopy this year, which is the only way they found the cancer in the first place. No imaging up until now has shown a thing.

I know a lot of people don’t count on their tumor markers as an indicator, but it’s one of the only ways for me to gauge anything. This month the 15-3 dropped a few points but the 27-29 went back up 31.5 points. The thing is it was at 491.2 to begin with. I was down to 343.6 and now back up to 375.1. I’m not going to worry unless it goes up again on my next visit.

[Malyssa]

Hello KMBL,

My situation sounds a lot like yours. . My original Breast cancer metastasized into gastric cancer in my stomach left side , and finding through endoscopy that cells had spread to the right side. Nothing major shows on PETSCAN/ CT but my cancer markers have gone up from the 150 to the two hundreds over the past couple of months. I am on IBRANCE- lowest dose and Faslodex . My neutrophils do not recover for weeks so I am on one week on and one week break and then tested to see if they are high enough to start again. I eat a non dairy, no sugar, no processed food almost vegan diet and take supplements. Your the first person besides myself that that the original cancer mest. to the stomach. If I can ask, what are you doing ? My Oncologist said that no other places showed ANY activity with just a blink of color where the cancer is.

[KMBL_ in reply to Malyssa]

Finally, someone who understands. This is so whacky the way it’s happened. The only difference is I never had an original cancer that they see. I was diagnosed from the start as Stage IV de novo. I’m on Ibrance and Letrozole. I started out on 125 mg and after the first month immediately went down to 75 mg. Same issues, low neutrophils. Mine bounce all around, so I’ve had to take a week off here and there. We are going to wait to check tumor markers again, and then she wants another scan in eight weeks. Thank you for responding.

[KMBL_ in reply to Malyssa]

By the way, I do not eat great. I’m very picky. I don’t eat many vegetables and have more junk food than I should. It doesn’t help that I lost 12 pounds when this all started to happen and don’t gain any. I also have Hypothyroidism.

[Malyssa in reply to KMBL_]

There is an excellent book Chris Beat Cancer. Please try to read it. Maybe check it out of library? Maybe change your diet slowely.... I eat 75% dark chocolate with Organic strawberries or blueberries, for breakfast I eat organic oatmeal with fruit and pumpkin spice, or cinnamon, etc. There are changes you can make that aren’t very difficult. Try curcumin supplements. ♥️

[KMBL_ in reply to Malyssa]

Thank you for the suggestion. I’ll look it up. Have you always eaten this way or have changed your diet since you’ve been diagnosed? A few years back I went vegetarian for a while. I couldn’t find enough foods I liked. I just went to a nutritionist, and she gave me some good suggestions.

I’ve looked him up, and I see an interview with him and Kris Carr. I’ve bookmarked it so I can watch it this weekend.

[Malyssa in reply to KMBL_]

I have always tried to eat well. I have had IBS- stomach issues since I was very young. When I was treated for breast cancer years ago the Dr.’s and nutritionist told me it didn’t matter what I ate. well I listened to them and ate not terrible but not as well as I should have. Sometimes I would eat french fries, soda, cookies, ice cream,processed foods, gmo products. When I started eating just organic veggies, fruits, nuts, oats, herbs. quinoa, tea, filtered water, my stomach never felt better. Sugar is the fuel for cancer cells. When we get PETSCANS we are injected with glucose (sugar) and the cancer cells eat that up .. that is how they see the “glowing” on the Scans! Just something to thing about. If you have an awesome car but put low grade gas into it and don’t get the oil checked.. eventually the cars going to break down. ♥️

[KMBL_ in reply to Malyssa]

The PET/CTs I've had haven't shown any of the cancer. That's what's so odd. None of my scans show it. It's only when they biopsy it that it shows up. I don't eat a lot of sugar, just a piece of dark chocolate or two daily. I drink water 99% of the time and don't have much soda at all. I've even cut down from three cups of coffee a day to one. Little changes at a time.

[Bestbird]

For patients diagnosed with lobular (not ductal) metastatic breast cancer, it is not unusual to find breast cancer present in the abdominal area. Below from my book, "The Insider's Guide to Metastatic Breast Cancer" which is also available in a complimentary .pdf, is information about Invasive Lobular Cancer. For additional information, visit insidersguidembc.com/about

Invasive Lobular Carcinoma (ILC) starts in the breast lobules (the areas of the breast that produce milk). ILC is the second most common type of breast cancer, occurring in 10% of all breast cancer cases. It is usually estrogen and progesterone positive and HER2 receptor negative (although it may harbor a HER2 and/or HER3 mutation) and appears to derive particular benefit from treatment with aromatase inhibitors compared with tamoxifen.

ILC may appear more like a spider web or filmy “sheets” than a solid tumor, and therefore it is frequently difficult to diagnose and track because it does not always appear on scans. This type of cancer may often spread to the ovary, abdomen/stomach, peritoneum (the tissue that lines the abdominal wall and covers organs in the abdomen), and omentum (a membranous double layer of fatty tissue that covers the intestines and organs in the lower abdomen). Sometimes the function of the ureters and bile ducts can also be impacted. On occasion, excess fluid called “ascites” may build up in the abdominal area. Because ILC does not look like a solid tumor, one cannot completely rule it out - even despite negative scans and test results - especially when Tumor Markers (TMs) are unreliable and the patient is experiencing symptoms. Some people with ILC experience significant issues such as fatigue, weight loss, nausea, abdominal pain or extension (“looking pregnant”), diarrhea, loss of appetite, and /or a feeling of premature fullness while eating. One woman with lobular metastatic cancer and ascites wrote, “Only when I had a Colonoscopy and EsophaGogastroDuodenoscopy (EGD) with a biopsy did the biopsies reveal the cancer.” So, if ILC is suspected, an EGD, colonoscopy, FDG PET scan and other tests may be helpful in diagnosing and tracking it.

[KMBL_ in reply to Bestbird]

Sounds exactly like what happened to me. I am just shocked that there aren’t more people in this group who have had it happen to them. Thank you for the information.

[Bestbird in reply to KMBL_]

You are very welcome! Best wishes going forward.