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Recently diagnosed and in need of helpful info

Dibari22
Posts: 3
Joined: Sep 2017

Hi.

Out of the blue last week, my normally healthy 31 year old wife had a seizure at work and was rushed to the ER. After a few MRIs and CAT scans, it was determined that she has a 3cm mass in her left frontal lobe.

Needless to say, with 2 small children (3 year old & 8 months) we were completely caught off guard.

So far, the doctors are unable to pin down exactly what we are dealing with, although they've thrown around the terms "possible low grade glioma" and "possible astrocytoma" but we are now waiting another 2 or 3 weeks for a more advanced MR spectroscopy so they can get a better idea of what they're dealing with. MS and an abscess have both been ruled out.

I guess my question here is this: does this sound normal or familiar to anyone else? I feel like we're just doing a lot of waiting with little action. I've already taken the initiative and got the ball rolling to get 2nd (and 3rd, 4th & 5th) opinions from some of the top neurology & neurosurgeon programs across the country, but until we get this MR spectroscopy, we're just kind of stuck in a holding pattern and I feel like more should be getting done.

Any information would be greatly appreciated & I'd love to hear from anyone else who made have had a similar start to their diagnosis. Best wishes to you everybody else fighting.

Sten's picture
Sten
Posts: 151
Joined: Apr 2013

Hello Dibari22,

I got primary central nervous system lymphoma (PCNSL) in 2012 at the age of 68. Despite my age I got the toughest treatment, with high dose chemo and autologous stem cell transplant. The treatment plus recovery took about a year. Then I took Temodar chemo pills 4 days every month for 2 years, to prevent a relapse. I am now fit and strong again, with just a slight neuropathy, a little numbness of my feet caused by the chemo, and that does not bother me at all.

I understand that your situation is very hard and that waiting is indeed tough. You seem to handle it well though, trying everything possible.

I wish you and your wife luck!

Best regards,

Sten

Dibari22
Posts: 3
Joined: Sep 2017

Glad to hear you're doing well, I appreciate the feedback. 

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