Sunday, November 13, 2011

A second opinion - irapid consult

Thanks to looking at Sarah's blog (listed in bloggers links) I noticed a blog she suggested which was which was a blog where specialists had recently written articles about brain tumour types. On further research I found that this blog was linked to a website in Calgary, Canada. There are a team of medical professionals who focus only on CN brain tumours and offer second opinions. Obviously no-one is saying that your doctor hasn't made the correct diagnosis, but it is my opinion that too often in South Africa we believe that our treatment and our cancer lies in the hands of one doctor only. This autonomous approach is not helping you, the doctor or your family. (Something I am bound to write on later) Anyway, they took 48 hrs to review my case after I emailed all my MRI picture and completed the form online. This certainly was a rapid response.  I highly recommend their service for your own peace of mind and to get an international understanding of what treatment options there may be for patients. Their website is There is a cost involved, but at present I am considering trying to set up some trials and second opinions through the Brain Tumour Foundation of South Africa. Below is my summery all the way from Calgary! (Please note they have given a lot more information that I just don't have space to publish)

Welcome Deirdre ! |
Patient: Deirdre Kohler
Submitted on: 11/10/2011 2:18:37 PM
Uploaded file:
Reviewed on: 11/12/2011 10:27:19 PM

In summary, you began having psychomotor seizures at age 21, which almost certainly relate to your left temporal lobe tumor. It is also possible that the event during childhood were seizures and would also likely be related to your tumor.  In 2008, your surgeons removed a tumor classified as oligodendroglioma grade II-III. From the information you provided, not sure of 1p19q status. In addition to surgery, you also received fractionated radiotherapy and temozolamide. Both of these have been shown to prolong disease free interval and survival in patients with oligodendroglioma.
Follow-up MR images show a resection cavity and MR signal changes (water) in the adjacent white matter which do not show local mass effect or change over time. This favors radiation induced changes rather than residual tumor. Furthermore, I understand you are clinically stable.
What are my options?
Option 1: Radiological observation with MR imaging.
My My chance of getting better
This strategy will not result in clinical improvement. In addition, you should conduct an exercise program as people with tumors who exercise do better than those who do not. Although not proven, it would likely be beneficial to take anti-oxidants such as vitamin C and E.
My chance of staying the same
Relatively high, particularly if the white matter changes are indeed related to radiation rather than residual tumor.
My chance of getting worse
Depends on the nature of the white matter changes. If the changes are secondary to radiation, they will not likely progress. If residual tumor, however, at sometime they would progress necessitating re-do surgery and / or chemotherapy.
Option 2: Surgical intervention at this time.
My My chance of getting better
None, particularly clinically stable and your images have not changed over time.
My chance of staying the same My chance of staying the same
High, however surgery could as well damage fiber tracts or brain connections resulting in increased deficit.
My chance of getting worse My chance of getting worse
Low, however the white matter abnormality involves an area of your brain controlling speech. Therefore, biopsy of the tissue cannot be performed without some risk.
What should I do?
Serial MR brain imaging. As stated above, it would also be beneficial to have your pathology reviewed and the molecular nature of your tumor established relative to 1p19q deletions.

  1. Bauman GS, Ino Y, Ueki K, et al. Allelic loss of chromosome 1p and radiotherapy plus chemotherapy in patients with oligodendrogliomas. Int J Radiat Oncol Biol Phys 2000;48:825-30.
  2. Cairncross JG, Ueki K, Zlatescu MC, Lisle DK, et al. Specific genetic predictors of chemotherapeutic response and survival in patients with anaplastic oligodendroglioma. J Natl Cancer Inst 1998;90:1473–9
  3. Cairncross JG, Macdonald DR Successful chemotherapy for recurrent malignant oligodendroglioma. Ann Neurol 1988;23: 360-4.
  4. Yan H, Parsons DW, Jin G, et al. IDH1 and IDH2 Mutations in Gliomas. N Engl J Med 2009; 360:765-773
  5. Cairncross JG, Berkey B, Shaw E, et al. Phase III trial of chemotherapy plus radiotherapy compared with radiotherapy alone for pure and mixed anaplastic oligodendroglioma: Intergroup Radiation Therapy Oncology Group Trial 9402
  6. Shaw EG, Scheithauer BW, O'Fallon JR, et al. Oligodendrogliomas: the Mayo Clinic experience. J Neuro- surg 1992;76:428-34.


Scott said...

Wow, I never heard of a service like that. I hope it gives you some peace of mind. It lays it out in an easy to understand report. Sometimes it's hard to get your neuro oncologist to be very committal in their answers. Anyway, it sounds like good news to me. My best to you and your family.


Deirdre Kohler said...

Thx Scott
Yes, I believe it is pretty new and as you mention, it is really great to get a reasonable description with an action plan

My best to you and yours too!

Jim G-M said...

Thanks for the info on irapid. Looks like a promising option.

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