A new diagnosis

Some time ago I posted about the search for a differential diagnosis after I experienced symptoms that might have been TIA/stroke, seizure or perhaps classical migraine with neurological symptoms. Recently I went to see a neurologist for a consult at the suggestion of my family doctor. My medical specialists now seem to have agreed that the most likely explanation for my symptoms (which have not recurred in the last six months) is migraine.

An interesting thing came out when I visited the neurologist…my neuro-oncologist had sent him a report on my case in which he described my tumour as an anaplastic oligodendroglioma. Since I’d not heard that from Dr Mason directly, I now had some questions for my next clinic appointment. That clinic appointment was last week. So I asked Dr. Mason, if this diagnosis made any difference after eleven years of survival. He replied in typical fashion, (paraphrasing) “well you’re still here aren’t you?” The clear implication being that if I’d really had a gbm then I wouldn’t have survived this long. Now that’s something I have long suspected, but that’s the first time I heard it from my neuro-onc.

By the way, when I asked if the diagnosis made a difference, I wanted to know if it made any difference to my treatment options if the tumour came back. Dr Mason said it would make little difference.

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8 Responses to A new diagnosis

  1. ddraper says:

    Hello – How are you doing? I find your last post somewhat disturbing as I have been living my life for 14 years with a grade III oligo. I am being treated by some of the worlds foremost oncology and surgical staff with regard to my condition. Have you had a resection and biopsy on the area of concern? No professional medical staff should or will make comments such as “well you’re still here”. Oligodendrogliomas are very slow growing tumors, that sometimes may be benign (commonly referred to as grade II). Grade III & IV tumors are malignant and there growth may stagnate at times however reappearing at more increased intervals over time. The tumor may exist within you for a very long time before detection. Extensive CT scans and MRI’s, along with PET scans are the fail safe way to determine if a tumor exists prior to any surgical procedure. Dr. Gregory Cairncross, Dr. Peter Forsyth (University of Calgary and Tom Baker Medical Research Centres) are my oncology team and Cairncross is probably one of the foremost experts in the world on this type of tumor. My surgical team consists of Dr. Garnette Sutherland Foothills Medical Centre/University of Calgary Medical Research Centre and Dr. Ian Parney currently relocated to Mayo Clinic Rochester, MN. I have had extensive personal interaction with all the above medical staff as well as my own exhaustive personal investigation into Oligodendrogliomas over the past 14 years and am currently in their care. I am somewhat of an anomally in regards to this type of tumor and its activity (meaning the median survival rate). I have had 4 crainiotomies over the 14 year period. December 30, 1993 original diagnosis and surgery, July 2004 tumor resecction, January 21, 2008 tumor resecction and June 24, 2008 tumor resecction. Currently awaiting MRI October 8, 2008. If you have any concerns please feel free to contact me at my e-mail address or goggle the above medical staff anytime . I hope that your doctors prognosis is correct and you are perfectly fine.
    I would like to hear from you either way.
    Sincerely Doug

  2. Robin Collins says:

    You ae the first person I have been able to locate in Canada…

    I am a recent GBM (er) April 28, 2007. I was told mine was the size of a pea, located on the surface of the parietal lobe. I live in Dundas Ontario. My husband’s family live near you in Colburne.

    I have gone throught all the treatment radiation and Chemotherapy, and will be on chemo until next summer. I am doing fine, driving, back to work ect

    I had the biggest shock today when I visited my surgeon’s office today. He told me that I had a GBM/ Oligodendroglial.

    I am told by my medical friends this is a much better situation to be in, rather than Just having a GBM. I was please to read your story. I also went to see Dr. Mason. What did you think???

    Can you give me some positive words of support. Much appreciated.

    Robin Collins

  3. Tania says:

    Hi there,

    I read through your site and found it quite uplifting. My dear aunt has also been diagnosed with GBM and is going onto her 20th month since diagnosis. Just wondering how you have been doing. So glad to hear of your life since you have been diagnosed. I wish you well. My aunt’s oncologist is also Dr. Mason. She had been doing wuite well until last month. All previous MRI’s showed no tumour acitivity until 3 weeks ago. We have an appointment tomorrow with Dr. Mason to discuss next steps. She is showing obvious signs that the tumour is active. We hope and pray for the best as we move toward the next phase. Thank you for your iniformative web-site.

  4. Just read your story. WOW I live in Bowmanville and my Dad was diagnosed with brain tumour yesterday from Dr Roy at Brooklin Clinic.
    WE have appt with Dr Perrin next Tuesday at 8am so I was doing research.
    My sister and her husband are coming into visit us tomorrow from Quinte where they have a small winery in Hillier, thought you may have moved around there too????? I LOVE the country!!!!!!!!!

    Glad to hear you are ok. My Dad is almost 80 and we have been planning a big party Aug 22, to celebrate his and Mom’s Bday, she’s 80 Sept 25. his March 19, next yr. We are trying to decide if we should keep party on, he says yes so far and I have been putting together a few photo albums as gifts for all to enjoy. Have family driving in from USA and Montreal.

    Let me know how you are and any advise for us, I have been staying at folks condo on lake in Whitby Sailwinds for last 2 wks.

    Take care

    PS tumour in left frontal lobe, suppose to be good area for access???
    Niece is MBA physio. and worked with patients at ST Mikes after brain surgery etc. Now at Trent U clinic.

  5. Vicky Masucci says:

    Hi there John.

    Just wanted to let you know how great it is to hear your story. We’re just starting our journey – my 20 year old son has recently been diagnosed with a Grade 2 Oligoastrocytoma. His surgery was performed by Doctor Perrin and he has had a consultation with Dr. Mason at PHM, which is why I am so drawn to your story. I pray that our son’s outcome is as positive as yours has been.

    I hope that you are still doing well, as I see that you haven’t posted for a while. Thanks for the inspiration and God bless.

    Take care.


  6. sarah west says:

    Thanks for your story. I have 41 yearold son in UK with an oligo iii diagnosed in Oct 2007. It won’t behave and lie down like yours, but he is still well and working. I’ll keep watching!!

  7. Ahmad Reyaz says:

    You are the real model of hope and positivity,which is so essential to fight this malady.

    My son at the age of 25 has been diagnosed with Level 3 Glioma. I am very positive and so is he.The only problem ,I see is that thru the internet he has been fixated on the influence of diet on the tumor.So he eats very litttle.

    Otherwise he is in great spirits.

  8. Dorothy Neisen says:

    My husband was diagnosed in 1996 with a pure oligodendroglioma. He wouldn’t alow them to remove it, but opted for just treating his seizures which were awful. He got relief from the worst of the seizures with medication and today is stable.He still has mild auras once a month, and some other side effects but he is coping. He has an MRI every 6-12 months to monitor the tumor which has grown very little in the last 13 years. He doctors with the Veterans Hospt.in Fargo ND and Mpls..
    I try keep an eye on the progress of new treatments .Weknow this thing could grow and need to be addressed at any time.
    As long as he can fuction reasonably normal, he will continue as he has.
    Good luck to you, and have a good New Year.

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