PET-CT availability and coverage?

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    • #16021
      Anonymous
      Inactive

      Wondering what the standard PET-CT follow-up frequency is for stage 4 melanoma patients after treatment in Canada, or whether oncologists are even recommending PET-CT routinely (vs CT, MRI, etc)? Moving back to Canada after years in the US, where the oncologist recommends PET-CT scans every three months for 2 years. I’m worried we won’t get that much follow up in Atlantic Canada, or that the province won’t cover it that frequently. Anyone have insight? Thanks very much!

    • #16023
      Annette CyrAnnette Cyr
      Participant

      Hello Eliza73,
      The issue of scanning and the frequency and type are ongoing areas of discussion and debate. The US likely tends to overscan (I didn’t believe it when I was in treatment, as I wanted some definitive way to get ahead of this blasted disease, but I have developed a greater understanding of the issues and often the lack of sensitivity of current scanning technology to detect), but even many of the specialists in the US point to that as an issue. Scan practices vary by province, hospital and physician. In Ontario, as with a few of the provinces, there are very specific guidelines for melanoma, as there are for other forms of cancer. I have attached a similar guideline for Nova Scotia – it is a bit dated as I see they haven’t updated the drug therapies or small changes to staging that recently occurred. Plus they are using radiation more in melanoma treatment than they used to
      You will note there isn’t much detail on the frequency of scanning. Instead, they refer to 3 month follow ups for the stage IV patient – and then it is up to the physician to determine how often if the patients is asymptomatic. As a rule, I don’t believe the docs will use the combo PET/CT beyond the first baseline if there is no disease present – then depending on the patient, the treatment protocol (if there is any ongoing) of clinical trial requirements, they may or may not use it for follow up. More often, you will see a CT scan or perhaps MRI if on the brain. If you are not currently symptomatic, likely it will be a follow up every 3 months. You can certainly ask your oncologist what the standard of practice is and see if you can have a scan = perhaps even every 6 months for the first two years if nothing has changed. I know sometimes it is warranted (if not, just for peace of mind).
      In Ontario (which may help to guide you), the current standards for high risk patients for imaging are as follows:
      Recommendation 2
      ‘For patients at high risk, the following diagnostic imaging may be appropriate:
      – CT scan of the chest, abdomen, and pelvis every 12 months
      – Chest x-ray – Only appropriate when CT scan cannot be performed.
      – CT/magnetic resonance imaging (MRI) of brain -Appropriate at baseline and as clinically indicated.
      – Bone scan -Not routinely recommended unless clinically indicated.
      – Positron emission tomography (PET) scan -Could be considered, as per the PEBC PET Imaging in Melanoma Recommendation Report.
      – Ultrasound -May be appropriate for surveillance within the lymph node basin or as clinically indicated.Useful when CT scan cannot be performed.
      Qualifying Statements for Recommendation 2
       Diagnostic testing should only be ordered if that test will result in management
      decisions.
       Follow-up healthcare providers should consider the appropriateness of the diagnostic
      imaging coupled with the health of the patient, the potential risk of accumulated
      radiation exposure, and the available treatment options.
       Diagnostic imaging modalities need to be evaluated in clinical trials to assess the actual
      survival rate benefit. Radiologic identification does not necessarily translate to a better overall survival
      rate.
       Patients who are considered at high risk for recurrence or death include patients with
      stage III and resected stage IV melanomas, as well as patients with stage IIB/C cancers
      with high-risk pathologic features
      Hope this helps you. Please let me know if you have any other questions. Perhaps someone out there from Nova Scotia with stage IV can lend further insight.

      • #16024
        Anonymous
        Inactive

        Thanks so much for the detailed reply! Very helpful and much appreciated.

    • #16025
      Anonymous
      Inactive

      Hi Eliza,
      That Annette, so amazing. I finished a clinical trial for Stage IV last July in my home town of Ottawa and my oncologist is scheduling me for alternating PET/CT scans every 6 months. But because I responded so well to the treatment she feels that I have a very good chance of beating this thing. I get the sense she will increase the duration between scans unless I become symptomatic. For me personally I would love to keep getting them every 6 months just for piece of mind:) I wish you all the best. Stay positive, you got this!
      Ramona

    • #16026
      Annette CyrAnnette Cyr
      Participant

      Thanks for sharing – being on a clinical trial is sometimes a real plus as you can, most often, be assured of close monitoring and more frequent scans or blood work. Ramona, it is so good to have you here on the forum for others – truly an inspiration and you give us all hope. It is great to see that you have responded so well. Can you share which trial and drug therapies you were on? I have been fortunate to meet quite a number that are now complete responders, so we know there are brighter days ahead.

    • #16027
      Anonymous
      Inactive

      I did 7 months of Interferon before it spread then I was on the combo of optivo and ipi (neuvolomab) for a year. Fortunately I tolerated the treatment very well and other than thyroid issues, which have since rectified themselves, it was like a walk in the park compared to the Interferon. I continue to hope that if this pest ever returns that there will be something newer, better out there. My oncologist said that if I go 7 years NED she feels very confident it will never return. Yay!!! Only 6 years, 7 months left:) It’s hard not to think about this sleeping giant but I feel so blessed and grateful that I will not waste one minute of this life. We got this!

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