PET scan concerns

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Hi ladies,

I just had my bilateral mastectomy last week. IDC was located along with the DCIS, both grade 3. Still waiting on HR status for the IDC. 2/13 nodes were positive with one node having a 1.2 cm tumor in it. I had a PET-CT scan and because my surgeon is out next week and I don't have an appointment with my MO until 9/11, I requested a copy of it stat, which I now have. I read tons of medical literature, but I'm lost about interpreting my PET scan. It reads the following:

Abdomen and Pelvis: Probable physiologic uptake within the central uterus (I know that can have to do with the menstrual cycle, so it may mean nothing). Also, "Expected physiologic FDG uptake is noted within the the GI and GU systems."

Thorax and neck: "Postoperative seromas in the bilateral axillae with associated mild uptake. There is also mild uptake in the anterior chest walls consistent with postoperative change."

IMPRESSION:

1. No definitive FDG PET evidence of malignancy from the skull base through the mid-thighs.

(I've omitted the rest as it's pretty irrelevant.)

Could somebody help me? Does "no definitive evidence" mean I'm home free or just that they couldn't find anything to confirm that there was no metastasis? I'm so confused and all the waiting is so hard. I have 3 children under three (identical twins) and I just want answers so badly.

Thank you in advance for any assistance you can provide and much love and hugs to you all!

Comments

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2015

    I'm no doc but it sounds like there is no evidence of cancer to me. From what I've heard, PET can show a lot of stuff that lights up that isn't cancer. Your report does say no definitive evidence of malignancy, so I would take it to mean the uptakes it picked up aren't from cancer. Hang in there and let us know what your doc says. HUGS!!!!

  • cajunqueen15
    cajunqueen15 Member Posts: 794
    edited September 2015

    thank you. I guess I just don't understand why they wouldn't say no evidence of malignancy found or no malignancy found. Saying no definite evidence seems very wishy washy to me

  • cajunqueen15
    cajunqueen15 Member Posts: 794
    edited September 2015

    as an attorney I tend to read things very literally so no definite evidence vs no evidence found is a big difference to me. Lol

  • pajim
    pajim Member Posts: 2,785
    edited September 2015

    Cajun, interpreter at the ready. . .

    You may already know this, but for those who don't, what a PET scan does is that they inject radioactive sugar [FDG don't ask me to spell it out] into your bloodstream and wait for it to circulate. Cells that are dividing quickly take up that sugar and show as bright spots on the scan. Cancer cells divide uncontrollably.

    (1) " Expected physiologic FDG uptake is noted within the GI and GU systems" Your gastrointestinal and urinary tract contain some of the most naturally quickly dividing cells (as does hair which is why it falls out with chemo). So they are saying that they see brightness in the expected places.

    (2) Your chest: there's been a lot of trauma. Therefore the cells in your chest are dividing quickly trying to repair themselves. That's also perfectly normal. Mine always says "mild FDG stranding in the gluteal area" because every month they shoot up my rear end with Faslodex and castor oil and it hates it.

    (3) " No definitive FDG PET evidence of malignancy from the skull base through the mid-thighs" This means no cancer. It's radiology speak for "if there's cancer there we don't see it". Think of it as CYA. The phraseology bugs me too. The reason they use it is that sometimes there are subclinical lesions, more maybe cancer that for some reason didn't take up the sugar. That would be VERY unusual.

    I read this as "free and clear".

  • Stephmoen
    Stephmoen Member Posts: 563
    edited September 2015

    hey Cajun how is recivery I know you have small children as well I'm so nervous about not being able to lift my 18 month old she's a total mamas girl!!

  • chefmom
    chefmom Member Posts: 21
    edited September 2015

    I had a PET last December and no one even called to follow up with me. I was left to my own interpretation, as well, and that is so frustrating! I'm glad that you found someone on here that could explain it to you and put your mind at ease!

  • TallnTerrific
    TallnTerrific Member Posts: 114
    edited September 2015

    I just got a call from my breast surgeon about my pre-MX PET/CT scan results. She says that there is enlargement and sugar uptake in my retro peritoneal lymph nodes, but no other signs in other organs or other lymph nodes. They want to delay my double Masectomy surgery until they can do a biopsy of these nodes. Anyone ever hear of this type of metastasis? It seems bizarre. My BC is stage3 but just because there are mulitple tumors in an area of 5.8cm. I haven't seen the actual report yet and of course it is Friday. On my breast MRI the axillary lymph nodes looked fine. Hoe could this happen

  • Sher0402
    Sher0402 Member Posts: 51
    edited September 2015

    when I had my PET scan, I had several small areas under my arm and a 2 cm lymph node in my neck (on the opposite side from my bc) that lit up. The one in my neck had much higher uptake than the ones under my arm. My surgeon was sure it was cancer and did a biopsy to see if it was bc or something else. The biopsy showed the spot in my neck was a benign tumor. The MO had also told me that reactive lymph nodes often show as "positive" on a pet scan. So there are other reasons things can light up. Good luck to you.

  • Italychick
    Italychick Member Posts: 2,343
    edited September 2015

    on my PET scan, I had sinus mucosal thickening and a couple of enlarged neck nodes on the opposite side. Guess what, I had a cold, and the surgeon said the PET scan showed it. I guess I am seconding that it could be an infection, inflammation, or something else.

    Best of luck.

  • Ford150
    Ford150 Member Posts: 6
    edited December 2015

    CajunQueen, I've had the same question recently. Did you get an first answer on the meaning?

    In my case, the first lesion stated "No Definitive Evidence of Malignancy found" and the second stated "No Evidence of Malignancy found". Considering they were on the same report, it seems like two different meanings, but am just not sure. I am having a wide excisional biopsy in a week on both as recommended.

    I wanted them out due to my family history, but it is a different feeling when 'they say' recommend removal. :) I have to remind myself often that it is in Gods hand and at this point, there is not a lot I can do about it.

  • cajunqueen15
    cajunqueen15 Member Posts: 794
    edited January 2016

    Hi Ford. No answer really, just that they think the cancer has not spread and was all surgically removed. It all seems like a shot in the dark to me. Hugs!

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