What is the use of PET Scan?

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Crystal_sola
Crystal_sola Member Posts: 13

After receiving my oncotype score of 3, my MO and I decided against chemotherapy and I prepared for rads. At my CT scan/ planning session, the radiologist noted enlarged internal mammary nodes. MO advises this could be inflammation, orders PET Scan. PET Scan results in 3 hot spots, one axillary node in right armpit (surgeon thought he removed all nodes) and IMLN on left and right of sternum. Entire team is now in disagreement in how to proceed. (Actually they dont even agree about the IMLN on the left) MO advises that biopsy of IMLN is extremely dangerous, as it is very close to my aorta, and advises against it. MO also says the hot spots on the PET could be inflammation. So what the heck was the use of doing the PET? I was so ready to start treatment, and now I am in limbo. Waiting for more opinions from more specialists, and meanwhile I'm freaking out that I still have cancer in my body after all that I've been through to get rid of it. I just emailed a list of questions to MO, but if anyone can give advice, I'd appreciate it.

My MO keeps citing my oncotype score as reason not to worry, not to be in a hurry, but wouldn't my score be wrong now if my lymph node count changed? She says they dont normally see IMLNs except in patients where there were many positive axillary, and even supraclavicular nodes, in which case chemotherapy would have been advised and oncotype would not even have been ordered. So the IMLNs (if they are positive, and how would we know if we cannot biopsy?) would call for chemo, while my low onco score calls for no chemo. Radiologist doesn't want to radiate without definitive diagnosis because of risks to heart on left. So here I sit. Help!

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  • Lula73
    Lula73 Member Posts: 1,824
    edited April 2018

    Wow! You sound like me with most medical issues...the conundrum patient. Basically what you’ve got going on is the scans seem to show something going on in those areas but pathology does not necessarily match it. The oncotype score is a test done on the actual cancer tissue removed during biopsy/lumpectomy/mastectomy and there is an algorithm they use to determine the score. It has nothing to do with lymph node involvement. Lymph node involvement would change the staging of the cancer. Both help determine treatment though.

    So let’s look at the PET scan. PETs show “hot spots” or areas where there is a lot of glucose uptake. Some parts of our bodies naturally have higher glucose uptake like our brains. Others do not have as much, so when they light up as a hot spot on the PET, cancer is likely as cancer cells typically use a lot of glucose. However, we should also look at whether you were given pre-scan I structions on diet and activity and if you followed them to a T. If not, you’ll need to bring that up to your MO as it can cause false positives. Likewise, inflamed tissues can also cause hot spots as they are also using a lot of glucose.

    Your MO hit the nail right on the head with stating they don’t normally see IMLNs unless many Axillary nodes and even supraclavicle nodes were positive. But unfortunately there are always exceptions to the rule, hence her stating “normally”. I’d see what you could find online regarding low oncotype score, positive IMLN nodes without positive Axillary and supraclavicle nodes and see what comes up. Hopefully your care team is doing the same. As of right now the choices are do nothing, keep the same course as before, or pull out the big guns and do chemo + rads.

    Here’s a link to another thread on BCO with similar situation from 2009. According to it, the IMLNs can be removed. Perhaps the danger is in trying to just do a biopsy vs an excision (kind of like with liver nodules). I hate you’re in limbo with this. I hope this helps you out.

    https://community.breastcancer.org/forum/96/topics/740162

  • Crystal_sola
    Crystal_sola Member Posts: 13
    edited April 2018

    Lula, thanks for your clarification on the onco test. My first instinct is to pull out the big guns (hence the double mastectomy asap after diagnosis) but the onco test is what's holding me back. My report actually gives a higher rate of recurrence/mortality with chemo than with tamoxifen alone.

    The only instructions they gave me for the PET was fasting for 12 hours, which I did.

    I have extensively searched for info on IMLNs, as one of the positive axillary nodes was an intramammary node. (In the tissue of the inner quadrant of breast, right behind tumor) from my understanding the intramammary node is treated the same as axillary nodes, but internal mammary nodes are a whole different story. Still not much info out there.

    I just want to be as informed as possible before making a decision as to treatment.


  • letsgogolf
    letsgogolf Member Posts: 263
    edited April 2018

    My Oncotype score was also 3 and my report also showed a higher survival rate without chemo. My doctors could not figure out why I had micromets in 1 node with my little lazy tumor. I have wondered if the node was cleaning up residue from the biopsies (I had stero and needle the same day) and they took several samples from each. I wonder if that could be the case with you. Since your tumor was in the inner quadrant maybe the node closest picked up the biopsy/surgery loose tissue. I assume your Estrogen and Prog. were high since you are grade 1 so the hormone blockers should work very well. Best wishes!

  • Crystal_sola
    Crystal_sola Member Posts: 13
    edited April 2018

    letsgo, I kind of thought the same thing when the surgeon spoke to me after surgery and told me about another lump behind the first. However when I got the pathology report it reads "intramammary lymph node that has essentially been replaced by a 9mm cancer deposit" and it has "extracapsular extension" so it has to have been growing for a while (it never showed on mammography or ultrasound, neither did my tumor)

    I highly suspect that spots on PET are inflammation, I also had an infection in the right breast 2 weeks after mastectomy and had to be reopened and cleaned out. I'm just having a hard time making such a big decision without knowing for sure.

    Yes my er/pr are strongly receptive so I think you're right about the blockers!

  • letsgogolf
    letsgogolf Member Posts: 263
    edited April 2018

    Crystal_sola I wonder if they could radiate that area instead. As I understand it, radiation is very effective on nodes. I had 2 nodal areas radiated for extra protection although they were not in the IMLN area. This might be a better choice since your Oncotype score was so low and chemo might not be effective.

  • edwards750
    edwards750 Member Posts: 3,761
    edited April 2018

    I had a micromet too - in my S/N. My Oncologist did not remove any more nodes since it was so small. My Oncotype score was 11. My tumor was Stage 1b, grade 1 IDC. 7 years out this August.

    Diane

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