Pleomorphic Xanthoastrocytoma with Anaplastic Features
I am new to these boards and was trying to find anyone who has been diagnosed with PXA w/ anaplastic features? My surgery was 6 months ago, I had a gross total resection and no other treatments. I was diagnosed initially with a difficult to classify, unusual grade 2 astrocytoma. Second and third opinions diagnosed a PXA with anaplastic features. I have a follow up next month with my surgeon and oncologists to go over the alternate diagnosis and see what they think about it.
I was wondering what others experiences were with this tumor. What types of treatments if any were done? Has anyone's tumors recurred? How long did it take? Any long term survivors or those without recurrence? It seems like this is a pretty rare tumor with no consistent treatment regimen and uncertainty if chemo/radiation are even effective on it. My thoughts are that the doctors will continue to suggest a "watch and wait" approach but I was wondering if this is what other people had done if they had a total resection, and how frequent are your follow-ups (I'm at every 3 months right now).
Thanks for any info!
Comments
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PXA
In 2006, at age 49, I was diagnosed with PXA. I'm not familiar with anaplastic features, to my knowledge it was never an issue with me. A tumor had grown to the size of a lemon, as my neurosurgeon told me, and finally irritated my brain enough to cause a seizure. I had absolutely no previous symptoms that anything was wrong.
The tumor was successfully removed through five hours of surgery; had about 8 staples to close the incision in my scalp. My neurologist, (not neurosurgeon) stated I would be on dylantin for the rest of my life.
Follow-up MRIs, at first after 6 mos., then a year showed no reoccurrence of growth. I had other tests also, such as PET scans and others all with favorable results, and my neurologist refused to take me off of Dylantin, so I changed neurologists and now am drug free, for about 4 years now. I will be getting another MRI in August after 2 years to check for growth.
The surgery saved me in two different respects: 1) it removed the benign tumor and 2) being a smoker, I haven't smoked since the day I went into the hospital six years ago. The surgery completely removed the urge to smoke, no matter how stressed I am at work, or if I am in the presence of other smokers, etc. The smoke itself does not bother me, but I have absolutely no cravings or desire to re-start the bad habit. Talk about making lemonade out of lemons!
Hope your luck is all good luck.0 -
Thanks for your reply! It'stuituish said:PXA
In 2006, at age 49, I was diagnosed with PXA. I'm not familiar with anaplastic features, to my knowledge it was never an issue with me. A tumor had grown to the size of a lemon, as my neurosurgeon told me, and finally irritated my brain enough to cause a seizure. I had absolutely no previous symptoms that anything was wrong.
The tumor was successfully removed through five hours of surgery; had about 8 staples to close the incision in my scalp. My neurologist, (not neurosurgeon) stated I would be on dylantin for the rest of my life.
Follow-up MRIs, at first after 6 mos., then a year showed no reoccurrence of growth. I had other tests also, such as PET scans and others all with favorable results, and my neurologist refused to take me off of Dylantin, so I changed neurologists and now am drug free, for about 4 years now. I will be getting another MRI in August after 2 years to check for growth.
The surgery saved me in two different respects: 1) it removed the benign tumor and 2) being a smoker, I haven't smoked since the day I went into the hospital six years ago. The surgery completely removed the urge to smoke, no matter how stressed I am at work, or if I am in the presence of other smokers, etc. The smoke itself does not bother me, but I have absolutely no cravings or desire to re-start the bad habit. Talk about making lemonade out of lemons!
Hope your luck is all good luck.
Thanks for your reply! It's difficult to find people who have experienced this type of tumor. I have done quite a bit of research (and I work in a hospital so am able to access many journal publications) but most of the information is repetitive since there are so few cases. I have learned that the PXA with anaplastic features is a WHO grade 3 tumor but they won't classify it as "anaplastic" because its "usually" not as aggressive as other anaplastic tumors. That being said treatment recommendations vary so I've been trying to figure out what other people have experienced. Also all of my research has said to avoid to term "benign" with this tumor, grade 2 or 3 as there is growing evidence of recurrences. I do finally see my docs this week for an MRI and to talk with them about the varying diagnosis.
I am glad to hear you are doing so well 6 years out of surgery!0 -
PXAumcrn said:Thanks for your reply! It's
Thanks for your reply! It's difficult to find people who have experienced this type of tumor. I have done quite a bit of research (and I work in a hospital so am able to access many journal publications) but most of the information is repetitive since there are so few cases. I have learned that the PXA with anaplastic features is a WHO grade 3 tumor but they won't classify it as "anaplastic" because its "usually" not as aggressive as other anaplastic tumors. That being said treatment recommendations vary so I've been trying to figure out what other people have experienced. Also all of my research has said to avoid to term "benign" with this tumor, grade 2 or 3 as there is growing evidence of recurrences. I do finally see my docs this week for an MRI and to talk with them about the varying diagnosis.
I am glad to hear you are doing so well 6 years out of surgery!
Thanks for the correction on use of the term "benign".
I don't remember what grade I received back then, but I will get info during the test results review for my upcoming MRI. I'll report back then. Good day!0 -
PXA LTS (Long Term Survivor)
I was diagnosed with a PXA in 1994 had a recurrence 16 years later (2010.It came back as a PXA with anapalastic features. I went through a second surgery, IMRT Radiation and Chemo. To date feel great and scans have been clean.
As far as malignant brain tumors go, you could do worse than a PXA. They can be unpredictable and can progress quickly or they can languish for many years without any discernable progression. The best predictors of LTS are Mitotic Index, Necrosis and extent of resection. People who have an anaplastic PXA's have a gross total resection, little to know necrosis and a Mitotic index < 5. Tend to do fairly well (relatively speaking).
Other factors such as location, age, general fitness, etc also play a role in long term survival.
Although these things play a role in surviving other types of malignant brain tumors by in large (GBM and anapalastic astorcytoma they follow a much more predictable path then anapalstic PXA’s.
Hope this helps!
Hux0 -
Thanks for replying! I am sohuxley2006 said:PXA LTS (Long Term Survivor)
I was diagnosed with a PXA in 1994 had a recurrence 16 years later (2010.It came back as a PXA with anapalastic features. I went through a second surgery, IMRT Radiation and Chemo. To date feel great and scans have been clean.
As far as malignant brain tumors go, you could do worse than a PXA. They can be unpredictable and can progress quickly or they can languish for many years without any discernable progression. The best predictors of LTS are Mitotic Index, Necrosis and extent of resection. People who have an anaplastic PXA's have a gross total resection, little to know necrosis and a Mitotic index < 5. Tend to do fairly well (relatively speaking).
Other factors such as location, age, general fitness, etc also play a role in long term survival.
Although these things play a role in surviving other types of malignant brain tumors by in large (GBM and anapalastic astorcytoma they follow a much more predictable path then anapalstic PXA’s.
Hope this helps!
Hux
Thanks for replying! I am so glad you are doing well!
I definitely know that as far as malignant tumors it could be a lot worse. I did have a GTR and as far as my patho goes I had mitotic index >5 as well as necrosis. I am also young (25) and in great shape with no side effects from my surgery so I am hopeful for a good, long, progression free survival. I guess I am just trying to get a consensus of typical treatments for the PXA w/ anaplastic features before I go in to discuss with my doctors - since this is a second opinion diagnosis not they one they originally gave me (and I go see them this Thursday after another MRI). I am sure they will want to continue with just observation but I also want to make sure that my scans don't get so spread apart that we miss something.
So glad to hear from other people who have experience with this tumor though! It's frustrating that it's so rare and so little is known about it.0 -
PXAumcrn said:Thanks for replying! I am so
Thanks for replying! I am so glad you are doing well!
I definitely know that as far as malignant tumors it could be a lot worse. I did have a GTR and as far as my patho goes I had mitotic index >5 as well as necrosis. I am also young (25) and in great shape with no side effects from my surgery so I am hopeful for a good, long, progression free survival. I guess I am just trying to get a consensus of typical treatments for the PXA w/ anaplastic features before I go in to discuss with my doctors - since this is a second opinion diagnosis not they one they originally gave me (and I go see them this Thursday after another MRI). I am sure they will want to continue with just observation but I also want to make sure that my scans don't get so spread apart that we miss something.
So glad to hear from other people who have experience with this tumor though! It's frustrating that it's so rare and so little is known about it.
In terms of treatment there really are no good answers. Most of the major institutions I went to (NYU, Duke, Columbia and Cedars Sinai) all recommended radiation and Temador. There is no proven benefit to these treatments for a PXA but think that has more to do with its rarity and finding a viable pool of individuals to study.
I handled the temador and radiation well and was able to work full time throughout the treatment proess. I think for me aggressive therapy was the right call. PXA although better than some of the alternatives is still Brain cancer and still needs to be taken seriously.
As an FYI below is one of the better studies I have read in regards to PXA. It’s a little dated but you may find it helpful.
Pleomorphic xanthoastrocytoma
What do we really know about it?
Caterina Giannini M.D., Ph.D.1, Bernd W. Scheithauer M.D.1,*, Peter C. Burger M.D.2, Daniel J. Brat M.D., Ph.D.2, Peter C. Wollan Ph.D.3, Bolek Lach M.D.4, Brian P. O'Neill M.D.50 -
Again thanks for sharinghuxley2006 said:PXA
In terms of treatment there really are no good answers. Most of the major institutions I went to (NYU, Duke, Columbia and Cedars Sinai) all recommended radiation and Temador. There is no proven benefit to these treatments for a PXA but think that has more to do with its rarity and finding a viable pool of individuals to study.
I handled the temador and radiation well and was able to work full time throughout the treatment proess. I think for me aggressive therapy was the right call. PXA although better than some of the alternatives is still Brain cancer and still needs to be taken seriously.
As an FYI below is one of the better studies I have read in regards to PXA. It’s a little dated but you may find it helpful.
Pleomorphic xanthoastrocytoma
What do we really know about it?
Caterina Giannini M.D., Ph.D.1, Bernd W. Scheithauer M.D.1,*, Peter C. Burger M.D.2, Daniel J. Brat M.D., Ph.D.2, Peter C. Wollan Ph.D.3, Bolek Lach M.D.4, Brian P. O'Neill M.D.5
Again thanks for sharing your experience!
I had another MRI today (still clean, whooh!) and met w/ my surgeon and oncologist. My surgeon is going to have the Hopkins pathologists take another look at my tumor and then discuss it at the next tumor conference although their pathologist (Dr. Burger) is supposedly "the" best in the country and he already agreed with the original Unusual low grade astrocytoma diagnosis (unusual because like I said I had mitosis & necrosis), so we'll see. My oncologist said it didn't really matter having a "definite" diagnosis as to him it's all a "shade of grey" anyways, he's more concerned with making sure I continue to be followed every 3 months for at least another 2-3 years and even then not spreading out more than every 6 months so as to catch any growth sooner rather than later. I guess right now the consensus is that there is nothing (visible) to treat and should it start growing again then we will handle it more aggressively at that time. I think I am ok with this for now, so long as I am closely watched I am less nervous about not catching new growth in time.
Thanks for the article, I will definitely look it up (also just noticed that one of the authors is my pathologist, interesting that he did not think I had PXA when others did).0 -
PXAumcrn said:Again thanks for sharing
Again thanks for sharing your experience!
I had another MRI today (still clean, whooh!) and met w/ my surgeon and oncologist. My surgeon is going to have the Hopkins pathologists take another look at my tumor and then discuss it at the next tumor conference although their pathologist (Dr. Burger) is supposedly "the" best in the country and he already agreed with the original Unusual low grade astrocytoma diagnosis (unusual because like I said I had mitosis & necrosis), so we'll see. My oncologist said it didn't really matter having a "definite" diagnosis as to him it's all a "shade of grey" anyways, he's more concerned with making sure I continue to be followed every 3 months for at least another 2-3 years and even then not spreading out more than every 6 months so as to catch any growth sooner rather than later. I guess right now the consensus is that there is nothing (visible) to treat and should it start growing again then we will handle it more aggressively at that time. I think I am ok with this for now, so long as I am closely watched I am less nervous about not catching new growth in time.
Thanks for the article, I will definitely look it up (also just noticed that one of the authors is my pathologist, interesting that he did not think I had PXA when others did).
Congrats on the All Clear.
What the doctors suggest seems very sensible. The only other recommendation I can give you is to always keep vigilant. My recurrence was 16 years after diagnosis and recently read about someone who was 20 years out. I have also met several folks who were 5 and 6 years out and had recurrences. I think as long as you’re on top of it you will be fine. There are some caring bridge sites you can also look at. One is for someone named SpecialK. He is about your age. Don’t know him but read his site and his story sound similar to yours and was very inspiring.
If you ever need something feel free to send me a message. I am not at this site all that often but you can probably get me more readily at the cancer compass site or the virtual trials site. Same name Huxley2006.
As an FYI after 5 years I more or less stopped taking scans. Maybe had saved me some grief if I wasn't lulled into a false sense of security. Good Luck to You!!!!
Hux.0 -
MRI resultshuxley2006 said:PXA
Congrats on the All Clear.
What the doctors suggest seems very sensible. The only other recommendation I can give you is to always keep vigilant. My recurrence was 16 years after diagnosis and recently read about someone who was 20 years out. I have also met several folks who were 5 and 6 years out and had recurrences. I think as long as you’re on top of it you will be fine. There are some caring bridge sites you can also look at. One is for someone named SpecialK. He is about your age. Don’t know him but read his site and his story sound similar to yours and was very inspiring.
If you ever need something feel free to send me a message. I am not at this site all that often but you can probably get me more readily at the cancer compass site or the virtual trials site. Same name Huxley2006.
As an FYI after 5 years I more or less stopped taking scans. Maybe had saved me some grief if I wasn't lulled into a false sense of security. Good Luck to You!!!!
Hux.
Tumor free after 6 years!0 -
Pleomorphic Xanthoastrocytomatuituish said:MRI results
Tumor free after 6 years!We are nearly 13 years down the line! My son had significant surgery to his left temporal lobe at the age of 9 in 2000. He also had a cyst the size of a mandorin. We were told that PXA's are very rare but I am shocked to see how many have posted messages here. I am aware of another 2 young men in their 20's apart from us in the UK. My son only had surgery but has left him with huge problems with movement on his right side, speech difficulties, processing information, blind to right side and after 11 years has become epileptic having been medication free for at least 10 years. Has any of you come across any research on PXA's? Hope all is well with all of you.
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Survivor !!!!
Hi there,
My son was diagnosed with a PXA with anaplastic features on October 26th, 2005. We have a caringbridge site set up and his password is specialk Please feel free to e-mail me or check out his site. Just thought I would give you some hope and to let you know there are survivors out here.
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Well it's official, my tumorumcrn said:Well it's been 20 months
Well it's been 20 months since my initial surgery and it seems as though my tumor may be back. Waiting to see my surgeon this week to see what the plan is going to be.
Well it's official, my tumor has come back. Surgery a week from Monday and probable radiation/chemo
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PXA
You can see my previous posts below but I am a 20 year survivor. First occurrence in 1994. Reoccurred in 2010. Had the standard treatment in 2010 (Temeador and Radiation). Clean scan last week. So far so good.
Hux
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I had my second surgery a
I had my second surgery a month ago and will be starting chemo + radiation next week.
My pathology is still unclear (it was the first time too), my tumor has been classified as a high grade astrocytoma but it is circumscribed and most closely resmbles a pxa w/ anaplastic features but not well enough for them to definitely say that's what it is. Whatever it is I am hoping this chemo + radation do the trick and kick it out because I need to get on with life!
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Hi
I would be so graet ifHi
I would be so graet if you could get in touch with me, my son has also been diagnosed with this grade 3 anaplastic Pxa he had had total resurrection also.
please please do get in touch as this is so rare I would love to hear you story
kindest regards
kerrie
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Treatmentumcrn said:I had my second surgery a
I had my second surgery a month ago and will be starting chemo + radiation next week.
My pathology is still unclear (it was the first time too), my tumor has been classified as a high grade astrocytoma but it is circumscribed and most closely resmbles a pxa w/ anaplastic features but not well enough for them to definitely say that's what it is. Whatever it is I am hoping this chemo + radation do the trick and kick it out because I need to get on with life!
I see that it has been quite some time since you have posted here, but in case you do get back on, I am wondering what type of chemo you had for pleomorphic xanthoastrocytoma w anaplastic features?
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Kezzerd said:
Hi
I would be so graet ifHi
I would be so graet if you could get in touch with me, my son has also been diagnosed with this grade 3 anaplastic Pxa he had had total resurrection also.
please please do get in touch as this is so rare I would love to hear you story
kindest regards
kerrie
I just had my 3rd brain surgery- in 1999 I had an ependymoma at the base of my skull, then in 2014 and just recently in Feb 2016, a tumor in my right cerebellum. In 2014, I was told it was a pilocytic astrocytoma but the pathology report showed anaplastic features.
After this surgery in 2016 and consulting with other pathologists and a BRAF genetic mutation test, it has been confirmed that this recurrence was indeed a pleomorphic astrocytoma w anaplastic features. I had a gross total resection, but my doctor is hoping to have 2 tumor boards look at my history to determine if I should have radiation and/or Temodar.
I would love to hear your or anyone else's experiences with PXA with anaplastic features.
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Anaplastic PXA grade 3 tumorKezzerd said:Hi
I would be so graet ifHi
I would be so graet if you could get in touch with me, my son has also been diagnosed with this grade 3 anaplastic Pxa he had had total resurrection also.
please please do get in touch as this is so rare I would love to hear you story
kindest regards
kerrie
Hi there. My 15 year ol daughter was recently diagnosed with an Anaplastic PXA grade 3 tumor. She had a total gross resection on 2/13/17 and is starting radiation treatment in about 2 weeks. Can you tell me how your son is doing?
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anaplastic PXA (WHO grade III)nshoales said:Anaplastic PXA grade 3 tumor
Hi there. My 15 year ol daughter was recently diagnosed with an Anaplastic PXA grade 3 tumor. She had a total gross resection on 2/13/17 and is starting radiation treatment in about 2 weeks. Can you tell me how your son is doing?
Im 29 years old I was Diagnosed and had first ressection 08/2015. Was pregnante i hadnt any treatment. Recurrent disease, second ressection 10/2016. Radiotherapy + chimiotherapy each day for a month and half. For now i have to take 360mg Temozolomide/day during 5 days every month... MRI/2 months
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