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Kristalee
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Joined: 06 Nov 2008
Posts: 48
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 Posted: Thu Nov 06, 2008 6:58 pm Post subject: My hubby has what they call a "mixed" brain tumor |
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Hello all! My name is Krista. This last September, a week before our honeymoon my hubby had a seizure. They did a CT scan and came back with a egg size tumor. it's in a good spot and they got most of it out. The biospsy came back grade 2. After the surgery they ugraded or down graded the tumor to a 3. They said it was a "mixed". What I'm wondering is why not go back in a do a new biopsy on what is left of the tumor?
What's left is a little smaller than a grape. He's starting oral chemo and radiation. They say he is young and this is treatable. No doctors has given him a time frame. We live in Boston so have some of the best treatmeants and surgeons.
They said the tumor is slow growing and he has had it for 2-4 years. Not sure if now that it is a grade 3 that has changed. They said it was a Astrocytoma but now it has cancer cells  . He is only 28.
It doesn't has feelers or octopus legs, its just a round ball....thats good right?
Thanks for reading
Krista |
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ksplat
Super Moderator
Joined: 26 Apr 2007
Posts: 576
Location: Brisbane, Australia
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| Posted: Thu Nov 06, 2008 7:23 pm Post subject: My hubby has what they call a "mixed" brain tumor |
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Welcome & hello Krista
Yes this is good news. A higher grade tumour would be very difficult to contain & treat (with tentacles of tumour growth from the main tumour) although in saying this there are treatments available for higher grade tumours.
Good news that they were able to "debulk" most of the tumour & with the oral chemo & radiation & the "slow" growth factor I'm certain this will bode well for your Husband's outcomes.
I'm not sure why the Drs didn't debulk the whole tumour? Perhaps you could ask this question on your next visit.
Our administrator - Brainman - is a wealth of info on Brain Tumours & I'm certain it wont be too long before you receive a reply from him.
I'm not familiar with "mixed" grade tumours myself.
Sorry to hear you are on this journey when you are starting your new lives together. We can offer you loads of support, information & comfort, I am glad you found our forum.
My prayers & thoughts are with you & yours.
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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Kristalee
Regular
Joined: 06 Nov 2008
Posts: 48
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| Posted: Thu Nov 06, 2008 7:44 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Hi  !
This thing is so confusing to me and our family. The doctor did mention maybe going back in a trying to get the rest of the tumor out. The surgery was done by Dr.kasper at Beth Isreal in Boston. I liked him alot  . It just so awful that it turned out to be a 3. It seems like its just sitting in his brain, not doing anything, he has no side effects.
We switched to Dana Farber since its right across the street from BI. Don't know if I like it there to much  It seems my hubby doesnt want to deal with it. He doesn't like me talking about it with him at all. This is awful awful awful. It just keeps running through my brain all day.
its been a huge waiting game as well, they released him from the hospital only 2 days after his surgery. We are waiting on the chromesone(sp) test. Its been weeks, this seems serious, but they say he has "time"
sorry for the long post.
I will ask if they can debulk more of the tumor next time I go to the doc.
Anyone in the Boston area that can recommend any good oncologist ?
Thanks
Krista
P.S. sorry for the rambling post |
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Mama 2 2
Senior User
Joined: 29 Nov 2007
Posts: 107
Location: Sunshine Coast, BC
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| Posted: Fri Nov 07, 2008 2:10 am Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Hello Krista, and welcome to the forum - as Angie mentioned its a great place for support, encouragement, and to vent. Never apologize for long posts - I can never seem to do a short one! 
I can empathize with how awful this is for you and how hard it is to get out of your head. My hubby was first diagnosed at 25yrs, less than two years after we were married. Of course, we've now been married over 8yrs and have two beautiful little girls! But I have gone days where I feel like I can't think of anything else. It is often like that still, but I now find it so much easier to be postive - we just value eachother and our lives so much more now and have learned to not worry so much about the future and be happy and cherish what we have in the present. MUCH easier said than done!
I don't know how accurate this is, but I have read that when it comes to grading tumours, which isn't an exact science, there can be qualities of more than one grade present in the tumour, but they should classify it as the highest grade present. Therefore, even if the majority of the tumour would present as grade 2 but there were some cells presenting as grade 3, they would still call it grade 3. Perhaps it is something like that in your husband's case?
The fact that it was still in a 'ball' type shape with well defined edges (no tenticles) is certainly a good thing as that is more typical of a lower grade. Once you find out about the chromozome test that will also help determine how treatable it will be with chemotherapy. If the 1p/19q is deleted, that is a good thing - but even if it isn't, that doesn't mean it won't respond to chemo. My husband's tumour does not have the deletion and he has still had some success with chemo. My husband never had chemo and radiation at the same time, but he handled each seperately really well. Fatigue was the biggest side effect.
Never shy away from asking questions - even sometimes if the answer was not what I wanted to hear, I think there can be a great deal of comfort in being informed. Everyone deals with things differently, and I'm sure both you and your hubby will go through various stages on this journey - talking about it, not talking about it, angry, sad, positive, negative - it all comes out. Just be there for eachother, ready to talk, ready to listen - and by all means come here when you need to and ramble as much as you want.
My heart is with you both,
~C~
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Tammy
Senior User
Joined: 27 Nov 2007
Posts: 117
Location: New Brunswick, Canada
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| Posted: Fri Nov 07, 2008 8:48 am Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Hi Krista,
I am so sorry to hear about your husbands cancer. It is surely one of the hardest things a person has to learn to live with. Just hearing the word cancer is terrifying. I can only wish you and your husband all the best and some positive strength. Being positive is a very great key to hang onto if you can catch hold of it, I will pray for you to catch. I am sorry but I can not answer very many questions about tumors, although there is Jim and quiet a few others that are very helpful. I do hope you find this site as helpful as we all do, Welcome to our family =)
Tam~
The greatest discovery is that a human being can change his life by changing his attitude!! |
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soxfan
Regular
Joined: 27 Mar 2008
Posts: 13
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| Posted: Fri Nov 07, 2008 9:55 am Post subject: Dr. in Boston |
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Hi Krista,
My husband was treated by a neuro-oncologist at Dana Farber. His name is Andrew Norden and we loved him. He always spent as much time as we needed and we never felt rushed or like we were just a number. He is great at explaining all the questions you might have. I have even called his office before with a question regarding future treatments and he actually called me back and we spoke for over 15min. I was shocked because I figured his secretary would be the one calling back with the answer. The waiting area atmosphere is a bit daunting but I would definitely give it a try....we have nothing bad to say about Dr. Norden and his team.
My husband was 34 when they found his tumor.....He had no symptoms. Our story is posted as well. His tumor was an Oliogodendroglioma and was pure not mixed like your hubby. Mixed just means that there was more than one cell type found. His was mostly grade II but had a small area that fit into the grade III criteria...Therefore they called it a grade III. Did your hubby have an awake crainiotomy? It allows the surgeon to remove all that it possible without any lasting deficits because he can test your hubbys motor and speech while in the brain....so he doesn't take too much. You might want to ask about the option.
Hope this helps.
Alisa |
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Kristalee
Regular
Joined: 06 Nov 2008
Posts: 48
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| Posted: Fri Nov 07, 2008 12:16 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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First off, thank you for all the support and info. Its funny cause Dr. Norden is the one who is treating my hubby case, small world . It's true, the Dana Farber waiting room made me very sad and upset. I liked dr. Norden he was very positive and said he thinks a radiation /chemo treatment is the best way to attack this thing.
its been almost 4 weeks since his surgery, we are sorta of waiting around for appts. I feel like we are losing precious time, I want the thing treated right away! I would also love more clarification on the tumor grade. Is it more a 2 or a 3? it would make a huge difference to me! Dana Farber is doing the pathology reports over from when Beth Isreal did them. He was put alseep through his surgery, ive never heard of a awake crainiotomy. I will ask Dr. Norden when I see him.
We live in Salem NH, so will be doing his treatment at Holy Family in Methuen. I really love this forum so far. Hope everyone is staying strong!
Its just so shocking to me that so many people have these tumors! I'm currently trying to build my hubby immune system up. Before the tumor Dx he was in very bad health, no sleep bad diet etc. never drank water. Its been a struggle to get him to start changing his ways
Hope your hubby is doing well Alisa! My hubby hasnt really talked to anyone about his tumor, maybe your hubby would like to talk to him. I think Mark would be better off if he had someone to talk to who is going through the same thing. Just a thought! Boo, late for work! gotta run!
Thanks again for the info!
Krista |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5986
Location: Tennessee
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| Posted: Fri Nov 07, 2008 9:00 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Hi Krista, I am so sorry about your husband's cancer. As you can read in me story (links in my signature block) I too have a history with a grade III glioma. My latest scan (Nov 6... yesterday) did not show any evidence of cancer.
The term "mixed" is confusing because it is used in two different ways.
- A mixture of two different grades. I believe this is what they are talking about with your husband. If I am right, they should tread it as if all of it is a grade III.
- A mixture of tumor types. I have a mixture of astrocytoma (minority) and olygodendroglioma (majority) but both are in the glioma family of cells.
The reason they are not going in to remove more is probably in the nature of a glioma. While a glioma may have roughly a certain shape, microscopically it is more like an octopus with little tentacles going out in all directions. In order to remove 100%, the surgeon would have to remove a very big chunk of healthy brain. Most likely, he will receive chemotherapy and/or radiation therapy to kill of whatever cells are still there.
By the way, a question that you should ask is about a genetic study. Have the checked for the 1p/19q gene deletions? The importance of that is that people who have that set of genes missing (deleted) tend to respond slightly better to chemotherapy... not by much... around 10% better.
I cannot imagine how hard this is on you and your husband so soon after getting married. My heart really does go out to you. As you can already see by the number of replies, this is a wonderful community.
You and your husband are in my thoughts and prayers.
_________________
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
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Kristalee
Regular
Joined: 06 Nov 2008
Posts: 48
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| Posted: Fri Nov 07, 2008 9:24 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Hi Brainman, My husbands tumor was graded a grade 2 astrocytoma, then when the whole thing was, out was downgraded to a 3. We don't know how much is actually cancerous, but any cancer cells are considered grade 3 right? The surgeon who did his brain surgery said something about getting the "yolk" of the tumor out, which he said was a darker mass of cells which the tumor grew from. All that is left is the "white" part of the tumor. This is was before the grade 3 was added.
what a HUGE difference a grade can make huh?
Yes, its hard to come to terms with this, we had only been married for a month.  It makes me feel alot better reading about youre story, that you have had a great recovery. What wonderful news about your scan! It's truly a work of God!
My husbad has really no faith in God. That is one of the hardest parts to handle. I'm praying Christ will come into his life! please pray for him!
thanks for the replys!
Krista |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5986
Location: Tennessee
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Kristalee
Regular
Joined: 06 Nov 2008
Posts: 48
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| Posted: Sun Nov 09, 2008 3:08 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Hi everyone
Tomorrow is Marks first oncology/radiation appt. I can't go, I have to work. I think that might be better since I usually end up crying at his doctor appts.
I did hear Dr.Norden say Oligoastrocytoma(sp).I'm just sacred. The more I read on it, the worst it sounds. Dr.Norden wants to do both radiation and chemo. We had seen a doc at Beth Isreal. He said if the tumor had 1p and 19q , he wanted to just do chemo.We still don't have the results from that test.
If radiation is a one time thing, I'm wondering if we should try just chemo first. It's hard to trust these doctors :/. I'm sure Dr.Norden knows what he's doing.
I can't think of anythings else but this stupid tumor.
Today we are celebrating my moms birthday, I dont even want to go. I'm so sad and depressed. It's so hard to have a postive attitude.
Krista |
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brainman
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Location: Tennessee
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Kristalee
Regular
Joined: 06 Nov 2008
Posts: 48
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| Posted: Mon Nov 10, 2008 7:42 pm Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Hi Brainman,
Mark didn't go to the appt by himself. My mom, his dad and stepmom went . It was just the first appt, no radiation was done.
They have news on the tumor. They said it was calicified, so that means slow growing, and said there was only one spot that was cancerous , which they removed with the surgery. I hope that is good news! Anyways, hope things are good with everyone!
Krista |
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jctajf
New User
Joined: 19 Aug 2008
Posts: 8
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| Posted: Thu Nov 13, 2008 12:01 am Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Hi Kristalee -
So sorry to hear about your husband. Your story in specific caught my eye because it is much like my own. My husband was also diagnosed with an Astrocytoma Grade III at 28 (this was Nov 2007). Like your husband, they initially thought it would have been a Grade II - they thought it probably was a lower grade because it seemed as though the tumor had been there for at least 4 years (he started experiencing strange "episodes" in 2003 - which we later found out were seizures - they sure did not seem like seizures). Anyway, just the fact that it had been there for at least that long and caused little issue, they figured it was slow growing hence a lower grade. Also, the images from his MRI were not really giving them a firm idea of the grade, so they were hopeful it was a lower grade. After surgery is when they tested the tumor and found that the cells had absolutly developed into a Grade III. Some tumor was also left behind after his surgery as it was located in too sensitive an area to remove. The risk of damaging an important brain center was just to great to take.
I was very happy to hear your husband was released from the hospital so quickly after surgery. That is good! And your last post sounds pretty positive. I am not familiar with a calcified tumor or what that means, but having already removed the one area known to be cancerous is great! Good for you guys.
You are right - it can be crazy confusing and playing the waiting game can make you crazy. Hope all is well -
Audrey - |
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Kristalee
Regular
Joined: 06 Nov 2008
Posts: 48
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| Posted: Thu Nov 13, 2008 12:44 am Post subject: Re: My hubby has what they call a "mixed" brain tumor |
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Hi Audrey
Sorry about your husband as well. Was your hubby's tumor a mixed or a full grade 3? How is he doing?
Mark, my husband has had only on seizure and is only on keppra. His oncologist is saying they think calicifaction means its slow growing, or was. He could have had if for ten years, so the doc says.
The report also said the grade 2 part of the tumor is the more aggressive cells, the 3 is slow growing. I find that strange, but I guess better?
What other treatments have you looked into besides the normal radiation and chemo? Is he taking supplements ? I've heard of the cottage cheese and flaxseed oil diet. Also Miatake mushrooms seem very good at building the immune system.
Sorry alot of questions. I've been telling Mark that people his age have these tumors, he seems quite shocked. I really love these forums.
I'll be praying for you and your hubby !
Krista |
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