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Grade II Astrocytoma- treatment
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Grade II Astrocytoma- treatment

My husband (30 years old) was diagnosed with a low-grade, ill-defined, astrocytoma this past week.  It is about 9 mm in size and in the area is his left temporal and occipital lobe.  The neurosurgeon suspected that it has been present for a few years now.  He feels that it is not putting pressure on the brain at this time.  My husband has started Lamictal due to very mild seizure-like symtoms (symptoms) (disorientation, tunnel vision--which went away prior to the medication).  We were informed that the tumor is not amenable to removal due to its location and that a biopsy is risky.  The "wait and see" approach was recommended.  

I have a few questions, 1) are there other treatment options that can help reduce it's size at this time rather than simply "waiting and seeing?" 2) would this be amenable to the Gamma Knife treatment? 3) are there any other recommended credible approaches (diet, home therapies, etc)that we can start putting in place? 4) without surgery, is it possible to beat this tumor?

Thank you greatly for your advice.
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Avatar_n_tn
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
    I am sorry to hear about your husbands diagnosis.  Low grade astrocytomas are often difficult lesions to address, but as far as brain tumors are concerned are much better than the alternatives (such as glioblastoma etc).  One difficult problem with astrocytomas is that the are diffusely infiltrative (extend little fingers of cells far from the 'margins' of the tumor) and often can never be fully resected (they often recurr even with large resections).  This become even more of a problem in areas of the brain that are highly functional.  The left temporal lobe is responsible for language including hearing and understanding language, speaking language as well as memory, emotions etc.  Losing the left temporal lobe can often leave a patient disabled (while the loss of the right temporal lobe is often better tolerated).  The next step for you would likely require a biopsy (a stereotactic biopsy can be planned to spare vital functions and is minimally invasive).  The reason I stress the biopsy is that there are many tumors that can look like a 'low grade astrocytoma'.  One such tumor is an oligodrendroglioma, which is important to indentify because it responds well to chemotherapy.  Others include gangliogliomas and DNETs, which are slow growing and are unlikely to turn into more aggressive forms of brain cancer (but are frequent causes of intractable epilepsy).  It is also important to identify if the tumor is infact an astrocytoma, since they occur in multiple stages and have the potential to transform into a more serious type of tumors (such as glioblastoma).  Gamma knife therapy has been used for some tumors, but his depends on multiple factors and I would recommend that you speak with a neurosurgeon at a major academic center, so that he can review your films and case to determine if your would be a good candidate.  I do not know of any credible diet/alternative therapies that have proven benefit for brain tumors.  Your success against the tumor can be positively affected by establishing a team that you trust of doctors, support personnel and family members that will help you through this tough time.
I hope this has been helpful.
17 Comments
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Avatar_n_tn
Sorry to hear this, and I hope you could beat it
     Before any thing, I would like to mention that the seizure history, the temporal lobe , and the  young age of presentation in your husband's case are considered  to have a favorable prognosis in most series.
    About the treatment, almost none of the key issues have been studied well ( in well-designed prospective or randomized clinical trials) , so its difficult to specify the "conventional" treatment for these tumors, as the proper treatment needs to be individualized, based on several factors, including patient age, clinical presentation, tumor size and location, and  tumor histology(the biopsy which is not going to be done on him).  
      Queted  " Barker et al 1997; Ginsberg et al 1998 " (Patients with a presumed low-grade glioma based on MR imaging should undergo early stereotactic biopsy for several reasons:
(1) to verify that the lesion is in fact a tumor, rather than a non-neoplastic
     process;
(2) to allow early identification of a grade 3 or grade 4 tumor and
(3) to differentiate astrocytoma from other low-grade gliomas (eg,      
    oligodendroglioma, ganglioglioma, dysplastic neuroepithelial tumor) as the
    latter tumors carry different implications for management and outcome)

   If the biopsy is risky, but did he/they do any special tests instead?    
Like,  MR spectroscopy (in gliomas generally shows increased choline peaks and decreased N-acetyl-aspartate (NAA) peaks) could also  differentiation of low-grade versus high-grade gliomas, and a possible easy target for stereotactic biopsy  (and/or a perfusion-weighted MR imaging is useful in identifying foci of increased relative cerebral blood volume that require close followup)
     A FDG-PET scans, in Pilot studies suggest a possible correlation between survival outcome and the degree of uptake

  Bob
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Avatar_n_tn
Thanks for your reply.

He didn't mention the stereotactic biopsy nor the MR spectroscopy.  I will ask about these.  Are they fairly typical tests that are used in this case?  I'm trying to figure out why they wouldn't have mentioned them.  They also didn't mention the PET scan at all.  

We are planning on getting our second opinion through the Cleveland Clinic and are hoping that they will have additional options.  
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Avatar_n_tn
You are welcome,
    No, these test are not typical especially in a none educational center (a small center), but as long as the biopsy is risky, then an alternative way should be tried  to confirm and to follow up, especially if its a none invasive one!..
   "We are planning on getting our second opinion through the Cleveland Clinic and are hoping that they will have additional options. " thats great if you don't  mean an on line one? its better to get an actual appointement with a specialised center.

    Hope you and your husband get over this soon

    Bob
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Avatar_n_tn
Thanks again Bob.  We actually live in the Cleveland area, so we're hoping to make an appointment with the clinic this week.  Are you affiliated with the clinic?  Do you know of any hospital systems that are most advanced with this type of diagnosis?  This is all so new to us.  

Thanks!
Leah
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Avatar_n_tn
You are welcome.
     I'm a retired Neurologist and this is not my real name . I live in Canada now , but I  know Cleveland clinic has had a very high reputation.
     I'm very sure  your husband will be locked after very well. Try to take every thing with you to the appointment especially the CD of the MR+ the reportI, and if still the st biopsy is not possible , then ask for a possible alternative way to confirm the diagnosis.... I'm not sure if the insurance could be a limiting factor these days? Hope not

   Wish you the best
   Bob

    
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Avatar_n_tn
I will be sure to ask.  At this point, if insurance is a limiting factor, we'll find a way to make it happen.  

Our current neurologist told us that treatment at this point is not recommended and would rather wait to begin treatment when the tumor shows growth.  From your experience and knowledge of current research, do you agree with this if they do end up confirming the diagnosis?  It's hard to come to terms with that because we just want to try before it could become more aggressive.

I apologize that I keep asking more questions...you are the first person outside of our treatment team that has been able to answer questions for us!

Thanks!
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Avatar_n_tn
As per number 2 and 3 bellow..yes you need to start the treatement, but other wise its a big dillema , I will try to stop by the medical libray this evening,  and search that

Queted " Barker et al 1997; Ginsberg et al 1998 " (Patients with a presumed low-grade glioma based on MR imaging should undergo early stereotactic biopsy for several reasons:
(1) to verify that the lesion is in fact a tumor, rather than a non-neoplastic
process;
(2) to allow early identification of a grade 3 or grade 4 tumor and
(3) to differentiate astrocytoma from other low-grade gliomas (eg,
oligodendroglioma, ganglioglioma, dysplastic neuroepithelial tumor) as the
latter tumors carry different implications for management and outcome)

  Bob
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Avatar_n_tn
You've been such a big help!  Thank you for being willing to look into this further.  We really appreciate it.

Leah
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Avatar_n_tn
Not at all, but only 2 computer were functioning and were used by the on-call doctors...I  will try tomorrow
    I hope in the end I could do/add something .

     Bob
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Avatar_n_tn
Good morning,
   Apart from the good news I mentioned in my first message (the prognosis), I have a very good one though far (in Germany), but its a small world now with the e.mail system.
   In general most publication esp in North America see that the indications for early intervention for patients with
1- a presumed (your husband)
2- or proven low-grade glioma  (by a biopsy)
include
1- neurologic signs and symptoms other than seizures (not your husband)
2-presence of significant mass effect on neuroimaging (not your H)
3-or growth of the lesion on serial scans (I dont like to wait to see that in a 30 yr old though I'm not an Oncologist).
4- Patients over 50 years of age (with or without these other features)
The treatment options for the above  include
1-surgical resection
2-or radiation therapy.

The potential goals of surgery are (the low grade gliomas has diffuse infiltrative nature which make a surgical cure unlikely).
1- provide histologic diagnosis
-2 relieve neurologic symptoms caused by mass effect
-3 improve seizure control
-4 improve long-term survival ( ~ 9 years)

About the radiation therapy: said early radiation did  not seem to  prolong survival BUT delayed tumor progression and itself MAY cause neurotoxicity and should, therefore, be delayed if possible ( but I see it reduces  the chance of a tumor-related decline in neurologic function!).

Based on that , they said  it is reasonable to defer surgical resection or radiotherapy in younger patients with astrocytomas who have no neurologic symptoms other than seizures until clinical or radiographic tumor progression occurs. (in other words-->For this group of patients, current evidence suggests that deferring treatment has no negative impact on overall survival or on the likelihood of malignant transformation)

An article out of Germany in  Cancer (the name of the Journal). 2006 March 15;106(6): Pages 1372-81  
talked about survivals beyond 15 years  for a therapy called interstitial I-125  irradiation offers a minimal-invasive and low-risk treatment option for tumors with a diameter < 3.5 cm (your husband has only 9mm). Larger tumors require further evaluation for optimal treatment.
They queted "Prognostic factors determined subsets of patients with 10-year survival (your husband is in the good prognosis category) ranging from as low as 6% to as high as 55% and progression-free survival ranging 1-31%".

Department of Neurosurgery, Grosshadern Clinic, Ludwig-Maximilians-University, Marchioninistrasse 15, 81377 Munich, Germany.

Try to e.mail him I'm sure he will reply
Dr. FW Kreth    ***@****-muenchen.de

   Best of luck
    Bob
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Avatar_n_tn
Again, I can't tell you how thankful I am for your help and time.  We have a meeting with the Cleveland Clinic next week and will see what happens.  I will also be following up with the gentleman whose email address you provided.  

Many blessings to you.
Leah
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Avatar_n_tn
I reaed with great interest your discussion with the Dr.  I was just diagnosed with a low grade astrocytoma on Feb. 22.  I have been having MRI's for two years and they were not sure if it was the tumor, MS, or several other possibilities.  This last MRI was very clear and I went to two institutions.  I went to the Univ. of MD and they said it was inoperable (very similar to your husbands).  However, they wanted to do a biopsy and begin some sort of treatment immediately.  I then went to Johns Hopkins University and the neurosurgeon there also said it was inoperable but he believed in the "wait and see" approach.  I called a friend of mine who is an oncologist in Balimore, he advised me to go to the Brain Tumor Center at Duke University.  The Doctor's name there is Dr. Henry Friedman. He is supposed to be world reknown.  The other doctor I am talking to is Dr. Alan Friedman.  I sent my MRI's there on March 29th and they have been reviewed.  I am currently waiting to hear from Dr. Alan Friedman to answer some questions.  Dr. Henry Friedman called today and spoke to my husband.  He said to schedule an appt. with Dr. Alan Frieman to have a biopsy.  I have too many questions to just schedule an appt.
Dr. Jon Weingart, at Hopkins, said that he has had patients go as long as 8-10 years and still nothing has changed.  He does not believe in doing invasive procedures that are not necessary.  He also feels that the research continues and that the longer we wait, the better the chance that some other options will come along.  Radiation can only be done once and he feels it is too early to try that option.  He agreed to do a biopsy if I really wanted one, but he feels as your Dr. said that there is only a chance that I will get a real answer.  I feel good about his answer, I just want to know that I am making the best decision possible.  I am only 40 and have 3 children.
Good luck to you and your husband.  One other thing I have been given a lot of information on is a supplement called "glyconutrients."  My OB-GYN has been using if for his son who has a tumor and truly believes it is making a difference.  I have not yet tried it, but it was endorsed by Dr. Ben Carson who is a well-known surgeon.  
If you want the numbers to Duke, please just post a note and I would be happy to forward them.
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Avatar_n_tn
Hi i saw that you are having trouble with The Astrocytoma family.  I've only 22, but for more than a year now i have been fighting a grade 2.  I first had sezuires and then what a dotor called vertiago.  I wasn't sure what was wrong so i made a appointment with my doctor, but i never had a chance to get there.  that night while driving it hit me, and i was sent to moses cone in greensboro nc and after a CT scan they ER doctor came in and said my blood work was off and had a CT picture, he said i had a cyst in my brain.  he then told me that i had a bad inner-ear infection sometime that got out of control and i was suffering from vertiago.  i fought with him about it because i have not had a inner-ear infection.  thenext day i went to my doctor who handed me over to Dr. Elsner on christmas eve i had a mri and Elsner said it was a tumor.  He thought that it was something small and easy, like a grade 1, but he admitted once he open my head he didn't know what it was.  The tumor was 21mm, and pushing on my eye cord, and left frontal lobe.  Everything seemed fine for about a month then it regrew to 18mm in four months.  i then had a week stay in the hospitial from sezuires, it was so sudden, i was geting ready for work, then i remeber the phone ringing and draging myself off the floor to answer it.  it was my wife who came home and called 911.  the next thing i remeber is wakeing up 5 days later straped to the bed with IVs coming out of every arm.  the next day i went home and two weeks latter i met with dr. Friedman at duke, the trouble was i was getting week on my right side still having sezueires every day.  he did the surgery and found that the tumor was growing into normal tissue.  the thing about the doctors here is that they always tell you something, but not everything.  i had to ask them point blank is this cancer, they said yes, it's a type of slow growing cancer but it transforms into a grade 3 or 4 very fast.  now i am on the wait and see treatment, they said that as of now they have no cure, but sometimes they can do surgery many times.  the trouble with that is i have lost the use of my right side, the doctors think it will come back sometime, but they are not sure why it is happening.  but the people at duke are good, make sure they stay on time with your meds, that was the only trouble other then being poked every hour for blood work.  i have my next mri in two weeks to see the growth.  good luck to everyone.  i know the only thing they want to do is eep doing surgery or chemo, the refuse to do anything else so far.  good luck, duke or wake are the best places in nc, but Friedman is really good.
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Avatar_n_tn
Sorry I took so long to reply!  I hadn't checked back on this site in a while.  Thanks for your post.  I wish you didn't have to be dealing with the same thing that my husband is, but up until I read your message, I felt like we were the only ones in the world facing this!

We obtained a 2nd opinion at the Cleveland Clinic two weeks ago.  The neuro-oncologist there was excellent, and we were very comfortable with her.  She wants to see my husband back next month to do another MRI to be sure that the tumor is not growing faster.  Unlike the previous hospital, she felt comfortable doing a biospy and didn't feel there would be a risk, so we are considering whether we want to do that sooner or later.  She told us that research shows radiation and chemo to be of equal value whether he starts it today or waits until the tumor becomes more aggressive.  I still wish we had a better answer and there was a new treatment that would just fix it!  We're trying to stay hopeful like you that one will come along.  It's just so hard to "wait and see" not knowing what time will bring us!

Can I ask where your tumor is located and it's size?  

I would definitely like the contact information for the docs at Duke-- thanks! I hear that Duke is excellent and very advanced with brain tumor treatment/ surgery and often remove tumors no one else will.  I feel the same way as you, maybe it's better to wait until we really NEED to act.  At this time, my thought is that if traditional treatment cannot maintain the tumor (once we decide to start it), maybe then we'll contact Duke and see about possibilities for resecting it.  The Cleveland Clinic talked about debulking it as a last resort, but that would come with short term memory loss and possible other problems with his daily functioning/ quality of life.

I commend you for being strong enough to cope with this having three children to take care of!  As a spouse, it has been incredibly hard for me, and I can't even begin to understand how my husband feels.  If you'd care to email him as a support-- just send your email address!  It's not often that you find others with this same problem!  

Hang in there!
Leah
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Avatar_n_tn
Jason-

Thanks for sharing your story with us.  I was wondering, did your doctors do a biopsy on your tumor prior to your surgery?  Did they recommend doing radiation in addition to your surgery?

Please also let us know how the results of the next MRI go.  We'll certainly keep you in our prayers!

Leah
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Avatar_n_tn
Because of the location they had to wait till surgery.  the doctor was so sure that it was only a grade 1 so i thought that it would be fine.  John Hopskins school of med graded the tumor.  Dr. Elsner was never sure, he even told my family that he had never seen a tumor like this, i didn't find out about that till this year.  I had to beg him to go back to work, drive, start doing everything that i loved, and that was after 3 1/2 months.  The doctors at duke seem to have handled things alot better.  You just never get over that feeling in the pit of your gut when they ask you to sign your living will.  then it's that long ride upstairs and the long white hallway, then into a big door.  I remeber the room was empty, just the lights hanging down.  Then i had to count back from 100, i think i got to 97, then i woke up in my room.  the second time i couldn't keep me stomach down.  for some reason to this day when i hear a saw my skin tightens and i get cold.  Right now the doctors want to do a wait and see, i'm in a study group to see how long i can go till i need chemo or something.  I just hate the mri.  I used to only be a 150 pounds, in one month i jumped to 230 pounds.  this was before they found the tumor.  they said everything was off when they did the blood work, something about hormones.  the trouble was my wife and i wanted a baby, but now that can't happen.  But i was told it can be fixed by puting a pump in me, sorry but no thanks.  but good luck to everyone.
jason
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A related discussion, Brain cancer treatment was started.
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