Sudden weight loss and abdominal pain

CCS648
CCS648 Member Posts: 41
edited May 2017 in ILC (Invasive Lobular Carcinoma)

I was diagnosed with stage 2a ILC in November 2014, and had bmx.

Recently I've lost 16 pounds in 6 weeks without trying, and have had abdominal pain and loss of appetite.

My oncologist thought he "felt something" in my abdomen and sent me for a CT scan with contrast. He seemed pretty certain it was mets - and then the CT report came back completely normal!

So he has washed his hands of me and sent me to a gastroenterologist, who will be doing an endoscopy/colonoscopy.

My question - is it possible that there are some metastatic lesions in there somewhere that the CT scan did not find? Or can I rest easy, and assume that this is probably ulcers or something relatively benign?

Do any of you know of situations where the CT scan did not pick up mets?

TIA -

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Comments

  • wallycat
    wallycat Member Posts: 3,227
    edited May 2017

    I am so sorry you are dealing with this.

    YAY on the normal CT report.

    Many things can cause unexpected weight loss---and sometimes never discovered as to the cause, so having a good CT report is great.

    Have you changed your diet? What are you doing differently? How old are you? Have you had your thyroid checked? Any new meds? Diet changes that you aren't conscious of?? (Some people eat less because of meds they are on and don't pay attention)...any new stress (I've lost weight from simple anxiety/stress!)

    If you can try to think of your previous patterns and compare them, that may help. Sometimes, we just get a blip in our system for no reason. I had started losing weight and getting concerned...then it just seemed to stop. Now I wish I could lose again...the ebbs and flows of the human body. We are such delicate bodies.

    Harvard Medical newsletter had a Q&A section where someone was dropping weight at a fast pace and nothing was found and they said...yes, sometimes there is no reason, it just happens. I'm hopeful that is all it is --unexplained but welcome.

    Keep us posted!

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  • trinigirl50
    trinigirl50 Member Posts: 343
    edited May 2017

    Its good your CT was clear. You said you had pain and loss of appetite. Loss of appetite correlates with eating less = less weight. It could be many things besides mets. Your endoscopy/colonoscopy should give you a better idea. Hard to wait, but no point dwelling on the worst unless you have to. Focus on the fact that the CT scan was clear (if possible). No point giving in to the fear before you actually have to. And here's hoping that you won't have to.


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  • wallycat
    wallycat Member Posts: 3,227
    edited May 2017

    Have they ruled out gallbladder issues?

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  • CCS648
    CCS648 Member Posts: 41
    edited May 2017

    Wallycat -thank you for your encouragement. CT called gall bladder normal.

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  • CCS648
    CCS648 Member Posts: 41
    edited May 2017

    Trini - thank you

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  • wallycat
    wallycat Member Posts: 3,227
    edited May 2017

    CT scans can miss gallstones. Gallstones are very common in women, especially those that lose a fair amount of weight.

    Meds we take can cause abdominal bloat/tenderness and loss of appetite.

    My first thought is an ovarian cyst (b-9). In my 30s, I did not realize I had a dermoid cyst on my right ovary. No pain, no discomfort but for the life of me, my appetite was gone. I dropped a lot of weight. The tumor/cyst was found during a routine pelvic exam. As soon as I had it removed, I gained back weight and appetite.

    Crossing fingers it is a simple issue. Keep us posted!

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  • CCS648
    CCS648 Member Posts: 41
    edited May 2017

    I did not know that about gallstones. I had ovaries removed a couple of years ago, so pretty sure that's not the problem!

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited May 2017

    Ccs648. Im a ct technologist and just because it says gallbladder is normal it doesnt show function of gallbladder. Hida scan will show that. Or an ultrasound of gallbladder will show if its clean or has sludge. Hope you feel bette

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  • wallycat
    wallycat Member Posts: 3,227
    edited May 2017

    If you have your uterus, it could be big fibroids too....the point is, it CAN be a dozen things and I hope it is not mets!!

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited May 2017

    I noticed you posted on the clinical trials/research forum about your father having mets with an unknown primary. Even without other family history, I wonder if genetic counseling has been suggested.

    There is a rare mutation of CDH-1 which has been determined to cause gastric cancer and also ILC.

    Hopefully this is not your situation but perhaps worth checking into...

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  • CCS648
    CCS648 Member Posts: 41
    edited May 2017

    mel - thanks for that info, I will follow up with that if the endoscopy/colonoscopy don't show anything.

    Wally - me too!

    Losing about a pound and a half every 4-5 days. It really is disconcerting. I know I'm not eating enough, but it starts to hurt after the first bite.

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  • CCS648
    CCS648 Member Posts: 41
    edited May 2017

    vlnrph - Thank you for your suggestion. I had the Myriad MyRisk genetic panel, and also got the list of polymorphisms. The only really interesting finding was a VUS of the NBN gene, which is currently being researched as being possibly a hereditary cancer pre-disposing syndrome. I keep an eye on the research - and even asked if they wanted a sample - nope, not interested.

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited May 2017

    Have they checked out your pancreas? My Mom had significant weight loss and gi-type pain. Took awhile to find the issue (her gallbladder had sludge in it as well), she had to have an endoscopic us, as the pancreas is hard to see behind the stomach. She lost quite a bit of weight before they figured out what was going on. I sure hope you get some answers with your endoscopy/colonoscopy!

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  • CCS648
    CCS648 Member Posts: 41
    edited May 2017

    Thanks MT! The pancreas appeared normal on the CT. This is really frustrating.

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