Different Second Opinions...

So I finally got the report from the second opinion I had done on my pathology..and may be more confused than before. Especially since both hospitals are great institutions, well known for their neuro-onc departments

My pathology was originally done at Johns Hopkins. They diagnosed a difficult to classify "Unusual Grade 2/3 Astrocytoma" that was "insufficient for a higher grade designation". There were some features "reminiscent of but not diagnostic" of a pleomorphic xanthoastrocytoma. My neurosurgeon, neuro-oncologist & radiation oncologist all agreed with a watch and wait approach to treatment (after complete resection). My most recent MRI showed some new enhancement believed to be scar tissue.

Today I received a pathology report done at Dana-Farber in Boston. They diagnosed a Pleomorphic Xanthoastrocytoma with Anaplastic Features (differential diagnosis for them was GBM or a non-categorical High Grade Glioma). On the report it says my case was reviewed at their neuropathology review conference and the opinion was that the tumor was a PXA w/ anaplastic features, with the GBM diagnosis NOT being favored.

I am planning on sending my patho to one more place (memorial-sloan) but was wondering if anyone had any experience with this tumor. I have not done a ton of research yet but it seems that there is little treatment info available on PXA's with anaplastic features because it is so rare, from what I've read so far it does seem to be highly recurrent but it is unknown if temodar is effective against it.

Also as far as discussing this with my docs at hopkins do I have to make more appointments with them? I have a follow up with my surgeon in July but currently do not have any plans to see the oncologists again. Does anyone know if when a pathologist receives a report from an outside institution that is different from what they diagnosed, do they contact the patients doctors? So many questions on how to go about this, do I make an appointment with my docs at JHH, or try to see new docs at Dana Farber (which would require quite a bit of travel but I am from Boston so it's a trip I make frequently enough).

Would love any insight/opinions. Thanks!

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  • Pxa

    Hey-
    I know this is probably far past the point, but I had a PXA fully resected in June of 2009. It was considered a Grade II but had been causing problems for about a year before they found it. I didn't do any treatment post-op besides MRI follow ups which is how they found my second tumor in November. They think part of the PXA morphed into this second tumor, a grade III anaplastic oligodendroglioma. I recently had a second craniotomy to remove the second tumor and I am now headed towards radiation and chemo.
    Would you let me know what they recommended for your PXA post-op? I had never gotten a second opinion and I didn't even know the PXA was considered brain cancer, and then to have the second tumor was pretty surprising, but only found because I was having follow ups from the PXA.

    I collected some information about the PXA, mostly that is was found in adolescents, could take years to grow, and effected a very small percentage of people with tumors. Also that hormone changes had been linked to growth, and they were starting to think hormonal birth controls could as well. For my age range at time of diagnosis it was something like less then 1% of people with brain tumors. The website I had that fully explained it has since been taken down otherwise I would refer you directly to it. I had a problem finding information and asked my oncologist to give me more info about the PXA, but didn't get much.
  • akellyd;7548 said:
    Hey-
    I know this is probably far past the point, but I had a PXA fully resected in June of 2009. It was considered a Grade II but had been causing problems for about a year before they found it. I didn't do any treatment post-op besides MRI follow ups which is how they found my second tumor in November. They think part of the PXA morphed into this second tumor, a grade III anaplastic oligodendroglioma. I recently had a second craniotomy to remove the second tumor and I am now headed towards radiation and chemo.
    Would you let me know what they recommended for your PXA post-op? I had never gotten a second opinion and I didn't even know the PXA was considered brain cancer, and then to have the second tumor was pretty surprising, but only found because I was having follow ups from the PXA.

    I collected some information about the PXA, mostly that is was found in adolescents, could take years to grow, and effected a very small percentage of people with tumors. Also that hormone changes had been linked to growth, and they were starting to think hormonal birth controls could as well. For my age range at time of diagnosis it was something like less then 1% of people with brain tumors. The website I had that fully explained it has since been taken down otherwise I would refer you directly to it. I had a problem finding information and asked my oncologist to give me more info about the PXA, but didn't get much.
    Hi!
    I haven't been on here in a couple weeks so sorry for missing your post!
    I never did get a second opinion on treatment, just the pathology. Probably didn't make much sense but after talking again with my neurosurgeon and oncologist it seemed as if the pathologists were just comparing tomATEoes with tomAToes if you get my gist :rolleyes: Two other pathologists called it an Anaplastic PXA while my pathologist called it an unusual low grade tumor with anaplastic features. I decided to stay with my original team and plan which was to watch it closely. I am a year and one month out from surgery now and have still been getting MRI's every three months, so far so good. My doctors have varying opinions about regrowth but the overall consensus is that it will grow again, we just don't know when. My oncologists estimates somewhere between 1 and 5 years while my surgeon thinks more like 10-15. Does it really matter when? Not really. There isn't much I can do about it but make sure we continue to keep a close eye on it, and pray that it doesn't return at all.

    I am sorry to hear about your regrowth! I have done a lot of research and it's so interesting the terminology used to describe brain tumors vs brain cancer. I found that most doctors/researchers will stay away from calling it cancer at all because the definition of cancer is "a malignant tumor of potentially unlimited growth that expands locally by invasion and systemically by metastasis", the catch being that brain tumors don't typically metastasis or leave their place of origin. That's why we have the grading system. Based on the grading system ones don't typically regrow (altho PXA's seem to be the outlier there) and are usually considered benign, anything 2 and up has high potential for regrowth and therefore would be malignant with grade 2 being less malignant than three and three less than four but all have the the potential to continue growing and progress from one stage to another. However for those patients who haven't done extensive research and learned about these grades they may find themselves lost to follow up and with regrowth and be surprised about it, because they, like you, thought if it wasn't cancer then why worry about it (not saying you didn't worry about it but get what I'm saying? If doctors don't explain the seriousness and potential for regrowth, then people might not follow up and may wind up with more problems down the line)

    Treatment of the grade two is where things seem kind of grey. My radiation oncologist told me that in the larger studies that have been done, in patients with grade two tumors who had full resections, those who had radiation post op vs those who opted to "watch and wait" had a longer progression free survival (in that their tumors regrew in an average of say 5 years instead of 3) but the overall survival (say at ten years) was actually the same for both groups. This is why many doctors are recommending watch and wait for patients with low grade tumors, full resections and no other symptoms. Delaying radiation and waiting to do it until the tumor regrows has the potential to improve overall quality of life for those years of no tumor growth.

    I do have quite a bit of information now on PXA's as well as other low grade tumors. Having the anaplastic features mine had (atypia, mitosis, necrosis) it seems as though I have a higher risk for regrowth and initially I struggled a lot knowing I had these features but wondering why my doctors didn't want to treat me but I have come to peace with this decision and will take whatever comes in the future as it comes. If you want any of the info I have about PXA's I would for sure share it but since you are now dealing with something new you may not need it.

    Thanks for responding to my thread! I wish you lots of luck with your treatment and hope it goes as smoothly as possible!

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