Can anyone please help with some PET scan SUV questions?

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GLim
GLim Member Posts: 5

I'd like to start this post by apologizing. I'm a forum newbie. It's my first post and I'm asking for help. I have read the rules and

Recently my 29 y.o. wife and mother of my two children was diagnosed with stage 2a breast cancer. The news came so quickly and it kept coming. The tumor is 3.4 cm. After doing a follow up chest X-ray, bone scan, and MRI, they found:

a 3.4 cm dark spot on her liver

strange looking spots in her lungs

nothing special on her bones.

The doctor phoned us after the test results telling us that the liver and lungs "didn't look as if to be cancer." For the first time in a while we felt a sense of relief and happiness. This past weekend we smiled and laughed for the first time. Today we went to the doctor for our official results. He said he hadn't had a chance to check the PET scan before calling us and there was cause to be concerned.

3 of her ribs have an SUVmax of 1.4 (delayed max 1.7)

Her lungs have an SUV max of 1.2 (delayed max 1.4)

Her original breast cancer has an SUV max of 11.1 (delayed max 12.2)

In terms of general health, she does not yet feel any discomfort, pain or otherwise. She just feels tired (understandable because we are new parents, and the current medicine she takes makes it hard to sleep).

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If anyone has ANY answers, or just positive support, I'd really appreciate it.

1.) I have read 2.5 or more is typically concern for cancer, but I'm not sure if that's mets, or an initial cancer diagnosis.

2.) If it is mets, I know these values are "low" but that's it has spread everywhere, could this be terminal? How much time might we have?

3.) Why is there no SUV max for that giant liver thing?

4.) Other than cancer, what in her ribs or lungs might cause an increase in SUV?

5.) If her lymph nodes exhibit no evidence of cancer, does indicate it may not be mets?

Comments

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2017

    Hi!

    First of all, ((Hugs)). Twenty-nine years old is awful young to be dealing with the breast cancer beast. I'm not saying this is your wife's case, but PET scans often produce false positives. I had "something" on my left hip show up on three PET scans, so my oncologist ordered an MRI with the intent of biopsying it. But, it didn't show up on the MRI or a CT, so she considers it to be a false positive.

    It IS interesting that the MRI, chest X-ray, and PET scan picked up different things. You'd hope for some consistency there. But the truth is that different scans see different things. Is it possible to biopsy any of the questionable spots? A biopsy is the best way to tell, for sure, if her cancer has spread elsewhere.

    That said, just because your wife's nodes exhibit no evidence of cancer, that doesn't mean she doesn't have mets. Cancer can be spread throughout the body by the bloodstream and/or lymph system. That's why chemo and hormonal therapy are often deemed necessary -- they travel throughout the body and help destroy cancer cells elsewhere before they find a new home.

    If your wife indeed has mets, that doesn't mean she is "terminal," as in she has months to live. But, it does mean that she will always be doing some kind of treatment for the rest of her life, and that it is more likely that she will die from breast cancer rather than from some other cause. Many Stage IV breast cancer patients live active and fulfilling lives, as you can see from the participants in our Stage IV boards. There are all sorts of new treatment options for Stage IV patients, and some manage to stay disease-free for years without doing chemo or other harsh treatments.

    Again, ((Hugs)). It would help us if you told us more about your wife's cancer. Has her cancer been fed by hormones (ER+/PR+)? Does it have an overexpression of the protein HER2 (HER2+)? What Grade was it?

    In the meantime, do ask about whether it is possible to biopsy any of the trouble spots. Best wishes!


  • Kicks
    Kicks Member Posts: 4,131
    edited June 2017

    I don't remember what 'numbers' went along with my PET Scan (or if was even told). I had had my PET in the morning and got a call about noon that " something had lit up along my lower jaw" and an appt. had been made for 3 that afternoon with an ENT to biopsy the area. Had the path. report back about 10 the next morning - nothing there. That was almost 8 yrs ago and still NED.

    PET Scans are very sensitive and will pick up on any 'inflammation' - not just malignancy. So it is quite possible for it to show up areas that are of no worry.

  • GLim
    GLim Member Posts: 5
    edited June 2017

    Thank you so much for your posts. They are very helpful to me. Kicks, keep going and thanks for your inspiration.

    Elaine, I believe her HER2 is neutral (it is 2).

    I'm not sure what this means... "Has her cancer been fed by hormones (ER+/PR+)? " but she is taking tamoxifen, and I believe the breast cancer was caused because of hormone levels.

    They tell us lung and bone biopsies are a little difficult so in two days we'll do "a stronger chest x-ray" (sorry my doctor's English didn't really translate very well. We are trying to be positive, but the suspense really is stressful.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2017

    Ah, if your wife is on Tamoxifen, she is ER+ at the very least. That is good to know. She has many more treatment options as an ER+ patient than if she were triple negative (ER-/PR-/HER2-). Yes, some areas are difficult to biopsy; I hope her new scan shows that there's nothing to worry about. Make sure that your wife tells your doctors about any accidents, surgeries, or conditions that might be picked up on scans. For example, I had a PET scan shortly after I had my port installed. Of course, the port area "lit up" on the scan because my body was busy adjusting to this foreign object in my chest. Best wishes!

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