high grade astrocytoma- HELP

tararose · New User Joined: 12 Oct 2009 Posts: 3

My father (51 years) has been diagnosed with a high grade, inoperable, astrocytoma. This came on extremely quick and the only symptoms were headaches and forgetfulness. Overall though, he is in great health, always has been. No seizures, no nothing.

We are extremely scared.

He had the biopsy on Thursday and we have to wait to hear from the neurologist early next week. The pathologist is reviewing everything and then we will be given a prognosis. Could anyone tell me where the best treatment is, or of a great neuro-oncologist or how to go about getting a second opinion.

what i dont get is why would they say this agressive and then send him home for a week and ask us to sit around and wait for a phone call.

I am sad, angry and confused.

help.

any info, tips or anything would be sincerely appreciated.

monteith · Posted: Mon Oct 12, 2009 9:25 am Post subject: Hang Tough

Is it Level 3 or 4? At level 3, even without operations there are numerous chemotherapy options. Temador (spelling may be off there) is what I am on and it seems to be going well - but I have only been doing this for four months. That said, there are numerous chemo options, and radiation can also be done (I have not done that yet).

Ultimately, no matter whether it is level 3 or 4, the clock is ticking. The key is to fight for every minute. Much like with anything, it is up to the person fighting to have the right attitude and be willing to do everything possible.

I have had to mention this a few times to folks .. None of us know when we will go or from what. Sometimes there are strong clues, especially when you are diagnosed with brain cancer, but we still do not know with certainty. Ultimately, we are all going to die - no one has ever avoided that, to my knowledge. We have all outlived Michael Jackson, who would have guessed that? The point is merely that we have to do what we can with the time we have, regardless - and that is true for every person out there.

My favorite line from Beavis and Butthead is something like "you gotta have stuff that sucks to have stuff that's cool". Brain cancer sucks, but there are a lot of other things in life that are cool. I may be 39 with something that is likely to kill me some day, but it is up to me to push "some day" off as far as I can.

That may mean just having the right attitude, changing eating habits, exercising, visiting a metaphysical healer, praying in church -- whatever works, but the key is trying something even if some doors are closed.

tararose · New User Joined: 12 Oct 2009 Posts: 3

we will know this week what grade it is but they have suggested that he will do intense chemotherapy and radiation. We are up in British Columbia and if it takes too long here to get the process going, we are thinking of coming down to the states to pay for treatment.

Thank you for the info. Was yours inoperable (the darn question mark on this thing isnt working lol)

your positive attitude is great!

tararose · New User Joined: 12 Oct 2009 Posts: 3

one more thing, I see you are in Kirkland... where do you recieve treatment

4lindsay · Regular Joined: 12 Apr 2008 Posts: 31 Location: Seattle

Hi Tararose~So sorry about your father's diagnosis. I guess I would wonder how they can say it's a high grade astrocytoma is you don't even have the pathology report back yet. I would definately seek a 2nd opinion. Since you are in BC, it wouldn't be too far for you to check out the doctors at Seattle Cancer Care Alliance (University of Wash. professors) or Swedish Hospital.

Our daughter is 24 with a grade 2 Oligoastrocytoma and is being treated at UW by Neuro-oncologist Dr. Marc Chamberlain and surgeon Dr. Dan Silbergeld. This is where we went for our 2nd opinion (and 2nd surgery), unfortunately after having the first surgery done at a local hospital. Dr. Silbergeld has been successful with many resections where the patient had been told it was inoperable. If it is definately inoperable, he will tell you so...as is the case with our daughter; a portion of tumor is in her corpus callosum...inoperable but not showing any growth.

I hope this info helps some. Make sure your dad gets copies of all records and scans to take wherever they end up going.

Take care,
Dianne

monteith · Posted: Tue Oct 13, 2009 12:24 pm Post subject: UW Medical

My doctor is Marc Chamberlain at UW Medical Center (he is also at Seattle Cancer Care Alliance), and he is outstanding. It took six weeks to get the official diagnosis back that I had Astrocytoma III, so I can understand the silly waiting game. They did operate on me and removed maybe 90% of the tumor, but I still have a good size piece up there as my souvenir. I am just taking temador currently and we have skipped the radiation for the time being. My tumor is shrinking slightly, so that is good, and if that changes we will consider operation again and trying to pull more of the tumor out.

Being inoperable is an interesting conclusion, though, and I am not certain what that means. Perhaps it is in a location that is too dangerous to operate on. Mine was so large and in a front lobe, so it was easy for them to conclude an operation was necessary - but when one quarter of my brain cavity was tumor, there was not much of a choice. My wife says I am leaning my head to one side a lot now, but I just tell her that is because one side of my head is so much lighter now. She isn't buying it, though.

Getting a second opinion never hurts, and getting it down in Seattle would be a great idea. Obviously, I would recommend Dr. Chamberlain. He is very much scientifically based in his approach which is what you want in a doctor, in my opinion - and he certainly knows his stuff.

sfabrici · New User Joined: 15 Oct 2009 Posts: 1

tararose, we are going through the same thing with my dad, but it started in May. I would be happy to talk to you if you would like. Please send me a private reply and maybe we can talk by phone. It is so stressful, especially in the beginning. I can tell you what we have done.

Wishing you all the best

Stephanie

Roman957 · Regular Joined: 22 Feb 2009 Posts: 27

Hi TaraRose, my thoughts and prayers are with you during this difficult time.

I am from Ontario and my wife was diagnosed with Anaplastic Astrocytoma Grade III in October 2008. It took three weeks to confirm the pathology, so the wait time you are experiencing is not unusual.

I appreciate your frustration and the desire to seek opinions/treatment elsewhere, because we want to do anything/everything possible for our loved one. If it is any consolation, I believe the level of care in Canada is as good as anywhere in the world. Our cancer centres participate in numerous clinical trials of new treatments etc. However, we do lag behind in getting certain treatments approved for general use. For example Avastin is not currently widely available in Canada.

We were told that the "gold standard" currently for treating malignant grade III and IV tumours is concurrent radiation/chemotherapy for six weeks, followed by chemotherapy alone on a monthly cycle. The standard regime is 5 days on/23 days off, but there are trials of a different schedule using lower doses of chemo on a 21 day on/7 day off cycle.

In our case, we followed the standard treatment protocol. My wife's tumour has shrunk from 46 mm to 2-3 mm, so the treatments can be effective. The important thing is to have a positive attitude, never lose hope or faith, and don't be concerned with statistics. Your father is not a statistic.

My thoughts are prayers are with you.
_________________
Roman

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