Prognosis and Pragmatics

plugh · Regular Joined: 18 Oct 2007 Posts: 16

At 52 (married and 2 children of 13 and 17), after having strange 'turns' during the summer, an MRI showed I had a primary brain tumor (about 1.5 inches across). The 'turns' were diagnosed as simple, single phase seizures - no loss of consciousness, continued conversations and exercise (they mainly happened while running/playing soccer).
I had surgery on August 2 and 90% of the tumor was removed. Analysis showed a Grade II Oligodendroglioma and genetic markers that show chemo response should be favorable. I was released 4 days after surgery, on anti-seizure meds and MRIs every 3 months. - No chemo - they want to preserve all options for recurrence. first MRI was ok - no regrowth.
I know they come back and I know they come back as a higher grade. Reading on this forum 5 year survival rate is high but 10 year is low? Realizing stats don't necessarily mean that much did I get that right? After surgery I was told it was benign and not cancerous but that seems questionable to me given what I understand of prognosis?
I live in the US so coverage and life insurance is through work. Are my options for changing jobs now limited by this? Would I be unable to get life insurance if I tried?
Alarming that there is no idea of what causes these or what can be done to slow down/prevent recurrnece.
Thanks for any help and guidance.

brainman · Posted: Fri Oct 19, 2007 4:24 pm Post subject: Re: Prognosis and Pragmatics

Hi plugh, we are about the same age but I am almost 15 years further down the line than you in terms of cancer. You can read my story by clicking on the link in my signature block. I will try to answer your questions but first let me say how sorry I am that you are facing such a life changing cancer. We are here to lend support and try to give you answers.

[quote="plugh"]

"I had surgery on August 2 and 90% of the tumor was removed. Analysis showed a Grade II Oligodendroglioma and genetic markers that show chemo response should be favorable. I was released 4 days after surgery, on anti-seizure meds and MRIs every 3 months. - No chemo - they want to preserve all options for recurrence. first MRI was ok - no regrowth."

Comment: In 1992 when I was first diagnosed I opted only to have a biopsy followed by a year of chemotherapy. Since then, I have had to take anti-seizure medications and have periodic MRI's. Those just come with the cancer. My medical team and I used the same logic but in a slightly different direction: First, see if chemo works. If it does not work, then re-look at the surgical and radiation option. At that time, they had not yet found the gene deletion that indicates a greater probability of a favorable response to chemo. If this where any other type of cancer, I would encourage you to start chemotherapy as soon as possible. But our type of cancer does not metastasize. Therefore, closely monitoring it using MRI scans is a good idea. On the other hand, you already know they left 10% of it there... I suggest that you talk to your medical team about starting chemo now rather than waiting. If and when it does recur, you can still take more rounds of chemo.

"I know they come back and I know they come back as a higher grade. Reading on this forum 5 year survival rate is high but 10 year is low? Realizing stats don't necessarily mean that much did I get that right? After surgery I was told it was benign and not cancerous but that seems questionable to me given what I understand of prognosis?"

Comment: If the actually diagnosed it as a grade II, it is not benign. However, it is possible that it is a "mixed grade" tumor showing some signs of a grade I tumor (benign) and some of a grade II tumor (malignant cancer). I think you have the prognosis reversed. She 5 year survival rate is higher than the 10 year survival rate. When I has diagnosed, the 10 year survival rate was less than 10%. Having said that, here I am Wink

. I did have a recurrence in 2005 and it did recur at a higher grade. In 2005, it was a grade III Oligodendroglioma. My prognosis at that time was 7 more years Confused

Well, I made it past the 10 year mark the first time... why not past the 7 year mark this time? Smile

"I live in the US so coverage and life insurance is through work. Are my options for changing jobs now limited by this? Would I be unable to get life insurance if I tried?"

Life insurance, other than a group life insurance through a company, is next to impossible now. I was fortunate to have obtain a private life insurance when I was young and healthy. Now that I am disabled, that is the only live insurance I have.

Your options for changing jobs are just as good as for anyone else our age. Employers cannot deny you employment because of your health or age hahaha... (I laugh sarcastically because I know that they do). My advise is: Protect the job you have for as long as you can unless some other company offers, in writing, a job to you.

"Alarming that there is no idea of what causes these or what can be done to slow down/prevent recurrence."

Comment: Plugh, we are not alone in this issue. Very little is really known about the causes for many types of cancer. Truly scientifically documented prevention of most cancers are also very rare. The best we can to is early detection.

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I hope that you find my comments helpful. Be encouraged. You to can be a long-term survivor.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

plugh · Regular Joined: 18 Oct 2007 Posts: 16

Brainman - many thanks for taking so much time over the reply - much appreciated and helpful. My concern over work is that I don't feel too secure in my current job but I guess I'll find a way to deal with it. On the insurance side I believe that if I left my job I may have an option to continue paying the premiums myself on the current insurance I have so I may try that.
I am a little confused between the forum and what I was told post surgery. I was definitely told low-grade and grade II oligodendroglioma and benign. This forum seems to mostly to take a differing view of things. I guess the effects are still the same though.
I'll continue to post and let you know how things are progressing but thanks again.

In · Posted: Sun Oct 21, 2007 5:35 am Post subject: Re: Prognosis and Pragmatics

plugh,

Sorry to hear about your Health. I have no idea about brain cancer etc. But wanted to say Hi.- "hi" Laughing

Stay positive and let us know how you are and what your doing.
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

plugh · Regular Joined: 18 Oct 2007 Posts: 16

Inica, thanks for the support - I will continue to provide updates.

I read your history - significant but you are inspirational!

plugh

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