Lung cancer is no longer a death sentence. Why aren’t we saving more lives?


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  1. Heather

    For those of us with LC we really need others to advocate for us. Our pockets of patients cannot do it alone. The stats in this cancer could change with early detection using low dose CT scans and with GP’s keeping the symptoms in the forefront of their minds so patients are not incorrectly diagnosed because they don’t fit a particular criteria.

    • Mike Fraumeni

      I am curious to know if guidelines for lung cancer such as those of Cancer Care Ontario/Ontario Ministry of Health and Long-Term Care, created in accordance with the McMaster based Program in Evidence-Based Care, see link below for the various CCO/OMHLTC guidelines, are too restrictive and not liberal enough to allow for physicians to screen, diagnose and treat lung cancer in a proactive and leading-edge manner. This I don’t know but it would be interesting if medical experts did an analysis of these guidelines and compared these guidelines with other jurisdictions who have produced lung cancer guidelines.

      https://www.cancercareontario.ca/en/guidelines-advice/types-of-cancer

      This video from Dr. David Webster, a nuclear medicine physician who practices in Sudbury, Ontario may also be of interest:

      https://youtu.be/yWb5br2PCR8

      • Sue McPherson

        Mike Fraumeni,
        I followed the link to Cancer Care guidelines, which actually is a list of relevant articles on the subject. But it did make me question the result of a diagnostic test i had, which stated no lung parenchymal alveolar tissue was identified in deeper levels of the sample, and cancer was not confirmed. Thus, I might conclude there was no analysis of any possible malignant tissue. One article in the list suggested that immunohistochemistry would be useful. I’m curious because they did a lot of testing on matters not related to malignancy. Thanks for the information. I will follow up on the second link later.

        • Mike Fraumeni

          No problem. Below is a link to Dr. David Webster’s website and below is the link from this website to that video and another concerning PET and lung cancer. Just wanted to mention that guidelines are produced using a systematic review methodology and such methodologies do have some drawbacks as to exactly what studies will or will not be included in the guideline, inclusion and exclusion criteria if you will. Having our health care insurance provider, the Ontario government, providing funds for the creation of such guidelines, in this case to a department in the McMaster School of Medicine, does point to a red flag as to possible biases present for whatever reason including cost reduction of tests and procedures. Perhaps provincial guidelines should always be regarded with some caution however these guidelines do affect how our physicians in this province practice medicine.

          http://petontario.org/cases/PET-CT-lung-cancer.html

          https://qz.com/784615/the-man-who-made-scientists-question-themselves-has-just-exposed-huge-flaws-in-evidence-used-to-give-drug-prescriptions/

    • Sue McPherson

      Heather,
      Your post is spot on. I regularly have been having low dose CT scans, at least until recently when my respirologist conducted tests on me that led to a test result that was completely different from the suspected cancer diagnosis. As a result, I quit my respirologist, and am now attempting to find, through PHIPA, how on earth this happened. One test result, that should never have been conducted, led to a perceived result that was way off-track and has influenced anyone knowing it, including the radiologist who read the last CT scan. I am at a loss to know what to do except to continue to fight to get the respirologist and others responsible to correct the errors made and get that test result (seen incorrectly as a diagnosis) declared invalid or at least, unethically and irresponsibly obtained. Meanwhile, I still have a lung condition that is at risk of becoming malignant and no way of getting objective diagnostic treatment of it.

  2. Cecilia Hurtubise

    I would have not qualified for early screening as a very healthy , physically fit , never a smoker .
    Also never had one if the lung cancer symptoms , one day I wake up with headache &
    8’weeks later a 3 cm tumour found on my scull with a Ct scan & Mri . Tumour removed , proved to be a secondary tumour , now sporting a 4 cm titanium plate in my scull . Pet scan showed LC as my primary with mets to the pelvic bone , spine & femur . Lucky to be EGFR 19 + 7 weeks on Iressa / Getfitinib all mets gone & lung cancer tumour shrunk from 2.6 cm to 1.6 . I have been stable fsincenthen , lung tumour has remained the same no further shrinkage .Stable is great .
    I have never been sick at all . Just a few minor side affects like brittle nails .
    I wish provincial health plans were the same across Canada , some provinces like Ontario totally cover the cost of Irressa which is $2240’a month Tagrisso is also covered at &9000 a month Quebec provincial does not unless you are a lower income level with no private health ins . I have Sunlife plan
    With my husbands military insurance, so I pay the 20% which is $440 per month out of pocket ,
    It affects my budjet but a small price to pay for such a miracle drug .
    I live in Gatineau Quebec & the cancer clinic & oncologists , neurosurgeons ,,radiation Onc are amazing . I belong to a wonderful lung cancer support grp , the first In Canada , it is in a Ottawa a short 25 min drive for me . We do lung awareness once a month at the Ottawa General H .
    I just attended the annual LC conference in Washington DC , it was amazing to attend seminars with top notch LC specialists & to attend with about 450 other LC Survivors that came from many other
    Countries .
    I wish Canada could put on a similar conference butting to team of people from LUNGEVITY org
    To put one on for the 7 th year .
    I know such a long comment but thru awareness I have become so informed .

  3. Debbie Lefebre

    In 2012, I was diagnosed with a Pancoast tumour located on the outside of my left lung. Because of my odd symptoms, it took several months to diagnose correctly by which time it had spread into my spine. The thoracic surgeon I first saw gave a grim prognosis, telling me that the best that could be done was to have aggressive chemo and radiation to try and shrink the tumour to then allow for the surgical removal of half my lung and three vertebrae. Even then, she explained, my survival time would be somewhat limited. The fact that I am writing this as I sit here with an intact left lung and spine speaks to the brilliance of my oncologist, Dr Mark Vincent at LRCP. I am grateful to be one of his “poster children”. During the course of my treatment, I certainly became aware of the stigma. CCO exerts a lot of control over permissible treatment protocols. Every time the two chemo drugs caused my immune system to crash, I had to pay $2780 for a single injection of Neulasta. This was a challenging financial burden. I was told that it was not covered because I had cancer deemed “untreatable” under the CCO guidelines. I have served as a patient advisor for five years at LRCP, sitting on committees and attending departmental meetings. This has afforded me a unique opportunity to “look behind the curtain” and to appreciate the many challenges facing medical professionals. I am of the generation raised to see doctors as kind of Demi-gods so I found it quite shocking that the autonomy of highly skilled professionals can be so markedly controlled by bureaucrats at both the local and provincial level. I am greatly heartened by reading your post about the need to give lung cancer more “legitimacy”. Lung cancer patients need advocates like you who want to challenge the current “beauty contest” view of the disease which ends up leaving us as the ugly ducklings in the line up. Thank you for letting me do this little rant.

    • Mike Fraumeni

      Completely agree Debbie that patients are fortunate to have physicians like Dr. Finley and Dr. Webster as I mentioned earlier act as advocates on the part of their patients and do so with often restrictive government clinical practice guidelines that hover over how they can practice true best practice medicine.

  4. Mike Fraumeni

    This article in the Sudbury Star today, May 23, quoting Dr. Webster may be of interest to some:

    “Sudbury doctor delivers blistering attack on PET scan policies – Worries new tool will be ‘obscenely under-utilized’ ” …

    “In Ontario, however, it can take up to two years to get a proper diagnosis for lung cancer because “we are the only medical jurisdiction in the world where you have to stick the needle in the nodule first, before you can get the PET scan,” he says. “In the entire rest of the world, if you have a chest X-ray and a nodule, say a 3-cm mass, the first test you would do would be a PET scan.”

    https://www.thesudburystar.com/news/local-news/sudbury-doctor-delivers-blistering-attack-on-pet-scan-policies

    • Vera-D.

      Actually not completely true. One strange side effect is that the sickest patients who likely wouldn’t survive LC treatment would qualify for a PET scan without a biopsy first. My 80+ neighbour, has COPD and Parkinsons. He received the PET scan prior to the biopsy due to his pre-existing conditions. The PET scan came back inconclusive and he then went for the biopsy anyway which originally was deemed too risky. The guidelines for a PET scan allow that based on “the existence of a contra-indication to the use of needle biopsy.”

  5. anuppa caleekal

    I understand smoking continues to be the leading cause of lung cancer and yet receives only 6 percent of country’s total cancer research funding.Surely the tobacco companies and the more recent actions of legalization of cannabis bear some responsibility on lung health and second hand smoke. I lost two close people who are non smokers who were diagnosed with symptoms i.e. in one person back and shoulder pain and in the other pneumonia and both died of lung cancer in less than one year of diagnosis. The former had egfr targeted therapy and the cancer treatment worked for 6 months until it needed the 2nd generation drug..the blood work for the second testing took too long and the person died 3 months after.The cancer had spread and was so advanced right from the start and like all cancers very aggressive. The other person refused to take treatment after learning she was initially diagnosed with flu like then pneumonia and when the symptoms refused to clear in a month it was through MRI and xrays and cat scans found to be lung cancer and died in 6 months . Both were extremely healthy people that never got sick and both were non smokers. What is going on? If radon is something that is suspect then free and mandatory availability of testing should be provide in areas researched to have high incidence of radon. One person was from Kitchener ,canada and the other from arizona ..Something is happening and this is not normal and hospitals and doctors and cancer centres are not prepared for lung cancer patients especially those that have never smoked or quit over 20 years prior. …Funding and provincial cutbacks in canada were complaints provided by the cancer centre for lack of hospital beds and lung cancer research ..It all seems to me that proper allocation of money is highly important for prioritization which may need to be continuously reviewed…politicians are also to blamed .I feel preventive measures have to be taken rigorously at the general physician level..both these patients could probably have had better care at the general practitioner level…maybe we need to re train doctors so their primary focus is prevention and diagnosis which takes time and not 5 minute appointments… and not making profit and trying to get fake community accolades in health care. Lung cancer definitely needs to be investigated especially factors in the environment…like hair dyes, nail salons, pesticides, renovation of homes and use of materials like laminated wood, countertops, air quality in homes, radon etc…..all these possible factors need to be investigated.

  6. Anuppa

    To Lung Cancer Oncologists:
    Does anyone know more about CIMAvax EGF vaccine developed in Cuba by Cuban researcher at the Centro de Immunologia Molecular for non small cell lung cancer ..it was approved as clinical trial by U.S. FDA in 2016. It apparently stops diagnosed lung cancer tumors from growing. Would this be available or made available in Canada ?

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