Thursday, January 12, 2012

"Unusual Features"

So I have been delaying writing this particular post, for one I was spending my last few days in Massachusetts trying to visit with everyone I hadn't seen yet and just enjoying my time there. Two, I wanted to make sure I fully understood what I was going to write about before spreading the news. This post is about my pathology reports and warning, it might get long. More so because to write it out, for me at least, will help me to understand it better.

I got the results initially a few days before Christmas when I called my surgeons PA (physician's assistant) to see if they were ready. She told me I had a Low Grade Astrocytoma with an estimated 95-98% resection (amount removed during surgery). She explained that "low grade" meant slow growing and that it could have possibly been growing 10-15 years before my skull finally just couldn't accommodate it anymore and I started having symptoms. Because of this she didn't think I would need any further treatments at this time (ie. radiation or chemo) but I would meet with the oncologists for follow up anyways and have frequent MRI's to watch it because it could start growing again.

That doesn't really explain a whole lot but most of my questions were deferred by "well the oncologists can explain it better...". I asked her if it was considered cancerous/malignant or if it was benign but she told me that the WHO (World Health Organization) didn't like to classify brain tumors that way because even a "benign" tumor can result in serious illness, disability and death because the lack of the skulls ability to expand to accommodate it. Also, not all tumors are in an area that can be reached by surgery. So I did do a little research in this area. WHO classifies brain tumors in stages, stage 1-4, 1 being the slowest growing and typically non-invading of surrounding tissue, if surgery can completely remove this tumor it is typically considered cured and rarely grows back. Stage 4 tumors are the most aggressive, fastest growing, invades surrounding tissue and has the ability to spread throughout the brain (primary brain tumors rarely leave the brain, do occasionally spread to the spine). Stage 2&3 fall somewhere in between. Stage 2 are slightly slower growing than grade 3 and look less abnormal under the microscope. Both have the ability to invade surrounding tissue and both can reoccur at a higher grade.

This is the info I've been kind of going on over the past few weeks, I did some research on my own of course, trying to stick with reputable websites like the American Brain Tumor Association, WHO and National Institute of Health. Most of those sites all say the same thing, that a low grade (also known as stage 2 and diffuse) astrocytoma with a good resection rarely needed further treatments until regrowth so that has been encouraging. I have also been lucky that my tumor was/is in an area that is currently not affecting me in any other way like causing seizures, trouble with memory, concentration or speech, or motor difficulties.

Now to today (oh my gosh, the blog is up to present time!). Today I went to Hopkins and met with my oncology team. Basically I will see the surgeon again in a few weeks but it is unlikely that I will see him much after that, surgeons generally do their thing then pass the torch so I need people to continue follow-ups with. I met with two doctors, one is a radiation neuro-oncologist so she specializes in radiation therapy targeted at brain tumors. The other is a medical neuro-oncologist, he specializes in the chemotherapy treatments used against brain tumors. Both were great and able to explain things different ways which helps with the overall understanding of it all.

I saw the radiation-oncologist first. She briefly went over my pathology results with us, the reason my results took so long was that the pathologist was having a difficult time staging my tumor due to multiple "unusual features". It was definitely an astrocytoma and the majority of the tumor was definitively stage 2 however I had some findings that are commonly associated with a grade 3 but I also had a mutation in some of the cells occasionally found in a particular stage 1 tumor (which I won't name because it has 21 letters in its name) AND "rare" features found in stage 4 tumors. Talk about mixing it up! Typically a tumor is staged to the highest grade of cell found, but because there were so few of these higher grade cells found the pathologist described it as having "worrisome features...however the findings are still compatible with an unusual WHO grade 2/3 astrocytoma, insufficient for a higher grade desigination". The radiation oncologist is confident that I do not need radiation at this time but close follow-up with MRI's every three months. She also believes that there is a 60-80% chance that my tumor will regrow but her belief is that it would likely be 10-20 years from now.

The medical oncologist, who I will say is definitely slightly older and more experienced appearing, though I know age does not always equal knowledge, was not quite as optimistic as the other doctor. His belief is that we caught the tumor as it was progressing to a stage 3, that the stage 2 may have been lying dormant for a few years (but not 5-10 like my PA originally said) but over the course of the past few months it started growing more rapidly. He explained that these tumors typically present with a random seizure and that is usually the only symptom. I however had no seizures but sudden onset of first, sporadic migraines that rapidly progressed to chronic severe headaches, vomiting, vision changes and swelling around my right eye. It is his opinion that I also do not need radiation now, or chemo, but he wants my MRI's to be every two months and to him it is not a question of if it will grow and then I will need radiation, it is more of a fact that we watch it until it grows and we will jump on it with radiation right away. Whether its growing again right now or doesn't grow for another 20 years we can't know and we really can't do anything to prevent it from growing when it decides to so I will be a frequent flyer to the Hopkins MRI suites for the rest of my life. At some point I may be able to transition to every 4 or 6 month MRI's but he said it would take a few years of stable (no growth) scans every 2-3 months before he would feel comfortable spacing them out.

So that is where I am at right now. I guess I am going to be "presented" on Monday during their brain tumor conference (held weekly with all of the specialists who are on the brain tumor team) to make sure all the doctors are in complete agreement with that plan and to one more time go over the pathology results. So long as nothing changes there I will see my surgeon in two weeks and after that continue to follow up with only the radiation oncologist after each of my MRI's. The reason I will follow just with her and not the medical oncologist is that when I need radiation I will be going to her, I am not getting, nor is it likely that I will ever need chemo at this point so while the medical doc will stay on my "team" and up to date on my case, I don't have to see him every three months. This is to minimize the amount of appointments I have to get to and travelling back and forth from Hopkins.

So I am all up to date now! My posts may become a bit more spread out as I am not doing much and don't have any more appointments for a few weeks. I will be doing a post in the near future just with some brain tumor FAQ's since prior to this I knew very little about them and unfortunately they are one of the cancers that has made very little progress in the treatment area over the last 10 years & I would like to spread some awareness about them.

Thanks for reading!


The best thing about the future is that it comes one day at a time.

-Abraham Lincoln



Just to prove to those of you who haven't seen me recently, I am up, walking, talking and functioning just fine :-)
New Year's Eve with two of my favorite people. 




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