Forum Discussion

CJD_2023's avatar
CJD_2023
Member
2 years ago

Does everyone have a PET /CT scan when lymph nodes positive?

Just wandering if everyone has a PET/CT scan for staging when nodes are positive?

My pathology came back after left mastectomy and ALND with 3 sentinel nodes positive for cancer, the other 9 showed no signs of malignancy (1 intramammary and 8 non-sentinel axillary). I had a CT scan of chest, abdomen and pelvis zdone 28/2, no metastasis was seen, an ovarian cyst was seen for which I have had to see a gynaecologist. My mastectomy was 17/3, clear margins were obtained (I was told) but some appear to be very small. I also had my ovaries, Fallopian tubes and cyst removed 13/4 so am still very much recovering and officially now ‘post menopausal’. I start chemo 24/4, 4 x AC, 12 x Paclitaxel, pathology also came back Her2+ (biopsies prior to surgery we’re Her2 -ve), so I will also be having 17 x Trastuzamab. Radiation will follow chemo. Still coming to terms with my 2023 schedule and trying to look at the positives which is definitely challenging at the moment. 

Not many posts mention having a PET/CT scan so was wandering how necessary it is as I’m so scared to get even worse news, this is all so overwhelming as it is. 
mastectomy
pet-scans
sentinel-node-biopsy
  • Abbydog's avatar
    Abbydog
    Member
    2 years ago
    I've always wondered if I should have had PET scan. 
    My diagnosis was in 2020. Of Stage 2 grade 3 BC oestrogen sensitive.
    My original tests were Core Breast biopsy, needle axilla biopsy, When these were positive I had a whole body bone scan, and CT chest, abdomen and pelvis. No PET.

  • Blossom1961's avatar
    Blossom1961
    Member
    2 years ago
    I had a Petscan when I was first diagnosed in 2018 as they wanted to make sure what they were dealing with. It is much better than finding out later that your treatment should have been different.
  • arpie's avatar
    arpie
    Member
    2 years ago
    I'm with @noosa_blue150 on this - I reckon ANY patient diagnosed with cancer should have a CT or PET scan straight up to see exactly WHAT is involved ..... as you have a 'snapshot' of your whole body at 'that point in time' (to compare future scans against) & who knows, the early scan may just pick up other bits that may help with treatment options & catch other tumours before they advance further.

    But as I understand it, they rarely do them unless you've been diagnosed with a future recurrence. :( 

    They've recently ok'd Genomic testing on all children diagnosed with ANY cancer ..... that should also be made available to all adults too.
  • noosa_blue150's avatar
    noosa_blue150
    Member
    2 years ago
    My team ordered me PET scan as part of plan along with lumpectomy and sentenial node biopsies anyhow as part of the staging - at that time nodes were negative . I was told all clear and just completed radiation and herceptin /TDMI and hormone blockers .
    Unfortunately some 16 months later I developed back pain and a L3 secondary found ( radiologist decided on review of previous scans it was probably there originally ). Lymph nodes still show negative on three monthly scans - L3 has been radiated and im basically naed - no evidence of active disease , on routine herceptin and perjeta three weekly and hormone blockers 
    I think having scans right from first diagnosis is an excellent  idea for oncology team so that they know your status ( and any secondaries ) and direct your treatment accordingly. for the patient you’ll know hopefully exactly what you’re dealing with too. For example if secondaries found surgery isn’t always a option , chemo and radiation path may be different 
    For me I’d rather know from beginning exactly what I was dealing with . 

    From people I’ve talked to it seems to be very normal to have a scan before breast cancer treated to try and rule out secondaries