From reading the board lately, this topic appears to affect many of us. I too am on diability and while I am very happy with my current insurance, I will have to go on Medicare mid 2012 and my other insurance will become secondary.As many of you have discovered, if Medicre deciles secondary and supplemental coverage will noy apply.
Medicare only approved PET scans less than 2 years ago and it is still for deisntaed cancers-Ovarian is there but not Uterine. They recently added thyroid so there is hope further changes will be forthcoming although we all know that higher survival rates for uterine overall make USPC and other rarer forms overlooked - the American Cancer brochure even says that while these cancers only make up 5% of cases, they account for the majority of deaths.
A couple of thoughts-is this issue a good one for us survivors to tackle, perhaps with the help of the more organized Breast Cancer or Ovarian Cancer groups? Does anyone have contacts at a national level where we might explore this.
I asked my oncologist (hematological) yesterday and he said I should discuss with my radiation oncologist as he is probably more experienced to navigate those waters. I intend to do so.
I had my first reccurrence just over a year from initial diagnosis and only 5 months from end of chemo and radiation. CT scan was done a month earlier than the 6 months as I was having some symptoms. It showed a su****ious area in para-aortic lymph nodes and they followed up with PET scan which lit up in that spot and we did needle biopsy (fun experience as I could not have any drugs due to deep position between liver and aorta). Decision was made to start IMRT "tomotherapy" immediately. Radiation oncologist did another PET scan at his facility to treatment plan and said he would eat the cost if insurer refused to pay for it. I am glad we did because the metabolic rate of the tumors had doubled in 3 weeks and 2 more small ones had appeared.I had 6 weeks of IMRT and it was successful. They did wait over 2.5 months to do follow up PET and it was clean. My doctors have agreed that we should do PET scans every 6 months since it catches tumors much smaller than CT and would have to be done as follow up anyway if su****ious areas-they want to do teat at this frequency but do not want to put me through two tests.
I am concerned when I go on medicare because a regular diagnostic PET that shows activity will probably require planning PET and then follow up PET after teatment.I am hoping that USPC combined with early recuurence and successful Tomotherapy will carry the day when I do on Medicare and I have a great pro-active doc. But I still find myself thinking about cancelling a trip planned for next April to the Galapagos isalnds in case I have to pay for several PET scans in the year. I really hate that any of us are put in that position - fulfilling dreams with shortened life span versus paying for necessary tests that should be covered.
Any other thoughts or experiences on this would be helpful. I do not post very often but read regularly and have learned a lot from the website- even my first hints of this issue and know that this community can shre expereinces with various docs and hospitals.
I am adding a blurb on a website for radiation oncology that seems to address this issue.
National Oncologic PET Registry (NOPR)
The National Oncologic PET Registry (NOPR) was developed in response to the Centers for Medicare and Medicaid Services (CMS) proposal to expand coverage for FDG PET to include cancers and indications not presently eligible for Medicare reimbursement. Medicare reimbursement for these cancers is available if the patient's referring physician and the imaging provider submit data to a clinical registry to assess the impact of PET on cancer patient management. The NOPR implements this registry for CMS.
The NOPR is sponsored by the Academy of Molecular Imaging (AMI) and is managed by the American College of Radiology (ACR) through the American College of Radiology Imaging Network (ACRIN).
The NOPR is endorsed by the American College of Radiology (ACR), the American Society for Clinical Oncology (ASCO), and the Society for Nuclear Medicine (SNM).
Learn more about the National Oncologic PET Registry (NOPR) by visiting the web site: www.cancerpetregistry.org.