can PET scan miss ILC met?

Ladyhoo
Ladyhoo Member Posts: 29
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I just didn't know where to post this, thought I'd start with my ILC sisters.

Like a lot of you, my 9x4 ILC tumor was missed by mammograms over several years. Now I am having significant abdominal bloating and distention, as well as a little spotting. I just had a PET-CT that was totally great and normal, no hot spots. Problem is, I'm worried that it's not accurate. Also, my KI-67 was only 8%, slow growing, and PETs don't catch things that are small or slow growing.

Just wondering if anyone out there has any sense of how PET scans do with distant recurrences of ILC. I know, I should feel reassured, but tonight I am just so distended (not really gassy), and thinking that there is no way this could be the sudden development of irritable bowel syndrome. 

Thanks!

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Comments

  • sgreenarch
    sgreenarch Member Posts: 528
    edited May 2014

    Dear Ladyhoo:

    I'm no expert on PET's and I understand the feeling of not trusting scans (I think many of us w ILC feel this way.) But you do have good news, so you can try to cautiously investigate further while still trying to stay calm. You can ask your onc this question, but I think I'd go see a gyn just to have a check up. You don't say where you are in the process, but it's never a bad idea to have a gyn/onc on your team. This kind of bloating could be caused by onc things as well. Also, check your diet. I've got this new thing where broccoli and cabbage make me very bloated. I think our systems can change with age and also the hormone meds we may be on. Good to be aware and trust your instincts.

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  • sgreenarch
    sgreenarch Member Posts: 528
    edited May 2014

    Oops, I meant gynecological things, not onc things. Sorry, too early in the morning:)

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  • hlya
    hlya Member Posts: 484
    edited June 2014

    Hi, Ladyhoo

    If the pet scan is clear (good news),  then your doctor should give you an explanation where those bloating and distention, spotting come from. Otherwise you won't have peace of mind.  They should give you further test scan to see what caused these. 

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited June 2014

    Ladyhoo, in early 2011, I was diagnosed with ilc, about 5 x 7 cm, a lump which I discovered myself six days after my annual mammogram .  My onc wanted me to have a CT scan before I started chemo simply as a baseline to have a comparison.  That showed some issues so I had a PET scan which showed mets in several areas of the bone, hip, rib, shoulder.  (I have been stable for 3 and a half years now.)

    I can understand your concern, but it really sounds like your issues would be caused by something completely unrelated to bc.  I hope you've gotten the matter checked out by your gynecologist or even primary care physician.  Best wishes.

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  • rosie06ct
    rosie06ct Member Posts: 220
    edited June 2014

    Hi Ladywho   I have ILC  mets to bones and nodes, hormonals kept me stable for almost 3 years. the last PET showed a shadow in my lower left lung...The onc ordered a Cat scan with contrast ... guess what it showed mets to outer stomach and thickening to outside of colon ! so on to Gemzar I go after they put  port  in . mets to this area is kinda common among ILC    had another PET scan and this time it showed up  wthell

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