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jefuchs
Regular
Joined: 21 Nov 2009
Posts: 33
Location: Louisiana
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 Posted: Sat Nov 21, 2009 12:09 pm Post subject: New diagnosis. Where do we start? |
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This week my wife was diagnosed with type II oligodendroglioma. While it's not as aggressive as some other tumors, we're both scared to death. She's 49 years old, and otherwise in top health. Never smoked. Never been overweight, etc. Tests show she has less than 5% actively-growing cells. I'm thinking we have a lot to be optimistic about.
We live in South Louisiana, so we're a 4-hour drive from M. D. Anderson cancer center in Houston. We plan to consult with them to see if there's anything new on the horizon for this cancer. The doctor says that the only reason to go there is to be part of a clinical trial, and that there are no current trials that she qualifies for. I've always been under the impression that M. D. Anderson was the place to go for state-of-the-art treatment, but the doctor says their treatments would be no different than what's available locally -- unless there's a clinical trial.
We've set appointments with the specialists that he referred us to, but we want to explore all options.
Where do we start? What can she expect as far as changes in her health and lifestyle? She has already been ordered not to drive for the next few months. What else can she expect? |
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plugh
Experienced user
Joined: 18 Oct 2007
Posts: 50
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| Posted: Sat Nov 21, 2009 5:16 pm Post subject: Re: New diagnosis. Where do we start? |
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I was having partial seizures a couple of years ago and wound up with an MRI followed by surgery to remove 90% of a tumor. Tests showed Grade II Oli also. I decided based on advice to get to a cancer center to start my treatment (Memorial Sloan Kettering) and I'm very glad I did personally. The surgery went very well there and, I feel, a lot better than if I had had it done more locally in NJ. Surgery Thursday, home on Sunday  That was 2 years ago. No chemo or radiation - that is on hold against a return of the cancer. Doctors want to keep a full arsenal. Full recovery from the surgery took a while even though I went home quickly but I was soon back to playing soccer and leading a normal life though with the Sword of Damocles hanging over me against a return of the cancer. MRI's every 4 months are now part of my life. I was ok'd to drive abut 3 months after surgery with 6 monthly reports to DMV. I just passed 2 years and no longer have to report. Seizure free since 1 month before surgery! I have no defecits from surgery and felt that my power of recall and memory actually returned somewhat after surgery. Hope this helps. 54 years old and hoping to stick around for a lot longer yet.
_________________
Craniotomy Aug 2007 diagnosed as Gr II Oligodendroglioma |
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jefuchs
Regular
Joined: 21 Nov 2009
Posts: 33
Location: Louisiana
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| Posted: Sat Nov 21, 2009 5:26 pm Post subject: Great story |
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Unfortunately, my wife's oli has spread and not all of it is operable. She has one operable tumor, but a second inoperable one, and more has started to form on the other hemisphere. So she'll have to have radiation and chemo, as far as I can tell.
The inoperable tumors LOOK inoperable, even to the untrained eye, as they are cloudy and there's not as clear a distinction between tumor and healthy tissue.
How did you decide on a doctor? |
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plugh
Experienced user
Joined: 18 Oct 2007
Posts: 50
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| Posted: Sat Nov 21, 2009 5:56 pm Post subject: Re: New diagnosis. Where do we start? |
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Sorry to hear that the tumor has spread. I have no experience or help I can offer with that or diffuse tumors but I'm sure others on this forum can give you advice / experience info on chemo that they have used. I thought Oli's were suppsed to be reasonably well defined, Astrocytomas are more diffused but that was only what I thought and is proably not accurate. Everyone here on this forum has been so helpful. I had some freinds in various aspects of the medical profession and they uniformally advised me to go to New York for surgery. Getting my skull opened by the doctor in the local strip mall didn't seem like a good idea. One freind in particualr suggested that if mine was cancer then getting invovled with a major cancer center from the get go would be a good idea - very hard to transfer later. further I got a referral from a freind of a freind to Dr. Philip Gutin in MSK. My wife and I went to see him for a second opinion after seeing a local surgeon and we definitely felt more optimistic after meeting him. Not saying any of these decisions or directions were right - just that I think they worked out well for me. Dr. Gutin was fantastic though he did wait till I was passing out in the operating table to let me know he would be waking me up midway through! Apparently quite common.
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Craniotomy Aug 2007 diagnosed as Gr II Oligodendroglioma |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5976
Location: Tennessee
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| Posted: Sat Nov 21, 2009 6:06 pm Post subject: Re: New diagnosis. Where do we start? |
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Hi jefuchs, I am so sorry about your wife's cancer. It is very unusual for a glioma grade II to be that big and wide spread... especially if it involves both hemispheres. Rarely does even a GBMIV affect both sides.
Your wife is going to a great hospital. MD Anderson is the highest rated cancer center in the US if not the world. I worked at a hospital across the Houston Medical Center and had my opportunities to work with the staff there. Since at that time my family lived in Tennessee and Kentucky, I have traveled down I-10 many times.
In my case, the first time I was diagnosed, my doctor was also a personal friend as well as a great person and doctor. By the time my cancer recurred, I no longer lived in the same state so I had to depend on the advice of my GP who I knew and trusted. That is how it is for most of us since we have no way of measuring the quality of one doctor against the next. The data is there. Unfortunately for us, the doctors will not allow Medicare to use it that way. I guess the reasoning is that is people knew who was the best, he/she would be overwhelmed by requests. I think it is more about protecting the reputation of those at the bottom of the list. But then I am a little paranoid
You and your wife are in my thoughts and prayers. We are here to help you though this painful journey.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54
FaceBook: http://www.facebook.com/James.Hawking54?ref=profile |
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jefuchs
Regular
Joined: 21 Nov 2009
Posts: 33
Location: Louisiana
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| Posted: Sat Nov 21, 2009 8:06 pm Post subject: Re: New diagnosis. Where do we start? |
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[quote="brainman"]It is very unusual for a glioma grade II to be that big and wide spread... especially if it involves both hemispheres. Rarely does even a GBMIV affect both sides. [/quote]
I didn't know that. What does this mean? Does that add a lot of risk? |
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jefuchs
Regular
Joined: 21 Nov 2009
Posts: 33
Location: Louisiana
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| Posted: Tue Nov 24, 2009 10:10 am Post subject: Re: New diagnosis. Where do we start? |
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| Seriously. Don't just leave me hanging like that. Does this mean there's a higher risk? |
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artaran
Regular
Joined: 22 Feb 2007
Posts: 49
Location: Monterey CA
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| Posted: Tue Nov 24, 2009 3:17 pm Post subject: Re: New diagnosis. Where do we start? |
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Brainman is right. It's unusual for Grade IIs to be so wide spread and it may mean there is more risk, but evaluating risk should be the medical professional's job, we are laymen. It is based on numerous factors not just one. Type, age, location, genetic deletion, surgery outcome etc.
However, I'm very glad that you are going to MD. Anderson. I think it would be wise to get a second opinion from them as soon as possible.
Take care--my thought are with you,
Arleen
_________________
Arleen Tarantino
http://www.willpowerresearchfund.com |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5976
Location: Tennessee
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jefuchs
Regular
Joined: 21 Nov 2009
Posts: 33
Location: Louisiana
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| Posted: Wed Nov 25, 2009 7:30 pm Post subject: Re: New diagnosis. Where do we start? |
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Brainman, that's very disturbing. None of the doctors we've spoken to have said anything remotely like that. But they're not giving us any clue about her prognosis. Could this be why?
Can you point me to any references that state that a widely-diffused type ii is as dangerous as a type iv? |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5976
Location: Tennessee
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4lindsay
Regular
Joined: 12 Apr 2008
Posts: 33
Location: Seattle
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| Posted: Thu Nov 26, 2009 12:56 am Post subject: Re: New diagnosis. Where do we start? |
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As I was reading your description of the MRI, my first thought was a gliomatosis cerebri. I wouldn't go straight to thinking this is the diagnosis but I would definately bring it up with the doctors. The link that Brainman posted is a great resource. It is very difficult to be the one to have to research this stuff but it's much better to be ready with as much knowledge as possible.
My thoughts are with you as you go through this. I am a mom of a 24 year old daughter with brain cancer...you take one day at a time.
Dianne |
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If I were you, I would talk with her doctor about how dangerous this is and what are her treatment options.