Grade III pure oligodendroglioma

soxfan · New User Joined: 27 Mar 2008 Posts: 4

First some background information. My husband is 34 years old and had no previous health problems until now. He is very fit and stays active by running and swimming. He is a Naval Flight Officer is the U.S. Navy with a B.S. degree in Biochemistry and a Masters in Foreign Policy. I have a B.S. degree in Chemistry and a Masters in Biomedical Research with a concentration in cancer gene therapy. We have two beautiful daughters ages 2 1/2 and 4 and were just getting ready to try for a third when cancer reared its ugly head. We are currently stationed in our home state of Maine. It has been a blessing to have our families around.

Our story:

The tumor was found by accident. He had no symptoms. He had a few migraines over the years. Very classical... with an aura of light followed 2-3 hours later by a headache that lasts about 18 hours. Initially we thought they were triggered by caffeine....so he stopped drinking caffeine but 7 months later he happened to be starting on one when his flight surgeon walked by his office. The navy Doc (God bless him) decided to order a MRA (MRI with contrast) to look for signs of aneurysms. My husband had a maternal uncle who had a huge cerebral aneurysm and even though this didn't genetically increase his chances (since he wasn't a fist degree relative) the Doc figured it would be worth the money to give my husband some piece of mind.

Feb 11th, 2008 MRA
Feb 12th, 2008 We got the results showing no propensity towards aneurysms. However, a brain tumor was found in the left frontal lobe. approx. 3.5cmx4cmx3.5cm
Feb 13th, 2008 We met with our neurosurgeon. He felt it looked and behaved like an benign Oligodendroglioma (O.D.). Due to the slow growing nature my husbands brain was able to take up the slack as the tumor grew...thus he exhibited no deficits or symptoms. It was located in what the surgeon referred to as the redundant part of the brain..(Lucky as tumors go) but was getting dangerously close to his motor plate. We opted to have surgery.

Feb 22nd, 2008 (Our little girls 4th birthday) My husband underwent an awake craniotomy. The surgery was successful and the surgeon thought he got a complete resection. Minus of course the stray cells that are always left behind. He did say that the tumor looked "nasty" and that he was "impressed" with its organization. This of course sent red flags up for me. I immediately started thinking that the surgeon thought it was more than just benign even though at the time he said he felt no adjunctive therapies would be needed. The frozen section came back as just hypocellular tissue with no malignant cells seen. However we were not given this information (until a day ago when I got a copy of the records) and were told the pathology results should be back in a week. After the surgery my husband had right sided paresis....He was unable to move his right side and was having trouble talking (finding the words to say). As the swelling from the surgery went down his movements came back as well as his speech. We were discharged from the hospital and admitted to an intensive acute rehabilitation hospital for 4 days. The night before his discharge his "in house" doctor came by. We asked about the pathology results and he told us with a great big smile that it came back as "a slow growing grade III oligodendroglioma" and that any treatment there after would be based on symptoms returning and future MRI's. Well I can't blame the guy for not knowing his stuff.....He is just a D.O. and obviously had no idea about my husbands case since he had no symptoms prior.....Of course a grade III is not slow growing but considered aggressive and malignant. These reahab hospitals tend to put their money and rightly so... into the physical, occupational and speech therapists. The doctors, nurses and aides tend to be bottom of the barrel professionals and some are down right scary.....oh the stories I could tell!

My husband came home on a Sunday so we had to wait until Monday to call his surgeon and find out what the heck was going on with the pathology. On Monday I spoke with the surgeons secretary...The doc was away at a conference. I told her about the path reposrt and another doc there gave us a referral to see an Oncologist. I got a copy of the path report and in big caps at the top was the final diagnosis of benign O.D. However, in small print buried in the body of the report was notations of increased mitotic activity in some areas. The tissue was being sent to St. Louis to an expert for review. The day before going to see the oncologist our neurosugeon called us and told us he felt that the pathology report had a typo in it. Of course the pathologist that did the initial report was on vacation in Florida with his family and couldn't be reached. grrrrrr

We met with the oncologist the next day. What an awful day. This doc had only been practicing for 6 months. He had no bedside manner and didn't explain anything...He basically went online pulled off the stats for prognosis and pitched it at us. He sat there with a straight face and told us we had 2-3 years maybe 7 at the most if we got lucky. He said that the tumor he had was very rare...less than1% due to its purity. Of course at the time we were a bit shaken up and all questions were forgotten..He did arrange for us to see the experts down in Boston at the Dana Farber Cancer Institute.....

Our trip to Boston went great. They explained everything to us.....Told us that the stats out there are not for people like us...they are mostly grade IV tumors....Patients almost always present with symptoms prior and resections are not done or are incomplete for the most part. Of course tumor location is important too. They thought our prognosis would be way above the average since we were already above the curves. Our pathology results came back....Most of the tumor was benign (I & II) but there were some areas that met the requirements for grade III. So on the scale of grade III tumors they felt ours was just barely there.....They thought this was mostly grade II but had just started turning the corner and becoming malignant. So being the research oriented person that I am I asked where in the tumor was the grade III? They told me from a treatment point of view it didn't matter and that the pathologist don't make note of such information. I think it matters a great deal if we are to learn about how these tumors behave and morph. It certainly says something if all of the grade III cells were located in the center or control center of the cell versus out in the margins where the cells blend with normal tissue. I intend to pursue this line of questioning on our next trip to Boston.

We decided to be very aggressive with treatments. Due to the location of the tumor Boston felt that the risk of long term effects from radiation to be almost nonexistent. My hubby is currently undergoing radiation and half strength chemo (Temodar) for six weeks. The radiation only takes about 12 minutes although the making of the mold and wearing it is no joy. He is in his first week and is doing fine....No side effects thus far except for waking up at night sweaty from time to time (no fever). He is back to work full time (no flying though). The radiation doctor told him they thought they could cure him and put him in a permanent remission. Of course he didn't question this as I would have....I wonder if the radiation doc was just seeing the first path report or even the frozen section and doesn't realize it was classified as a grade III. I intend to go to the next appt and ask him to clarify....I don't want to get my hopes up. After these 6 weeks we will go back to Boston for an MRI and meeting with our team of docs. We will get the MRI results the same day too. Then it is four weeks off then one year of chemo....5 days out of each month. An MRI every 8 weeks too.

It has been a rollercoater ride for us emotionally. It is amazing the degree to which cancer changes lives. I often think about going back to school for my PhD just to get the answers I am looking for.....If I can give any advice....and I am not really qualified to do so, (this being so new to me) this would be it. Never ever press the "I believe" button when a doctor tells you something. Always question and always ask why.

Thanks for letting me post. It is therapeutic.

Aimster · Regular Joined: 03 Jan 2008 Posts: 32 Location: Nebraska

Soxfan, thank you for posting you and your husband's story. I'm glad it was therapeutic, and am so very sorry to hear about your husband's oligodendroglioma. It sounds like you are (finally) getting good medical care at Dana Farber - that's wonderful. The oligodendroglioma diagnosis is also somewhat good news, since those tumors tend to be more treatable that astrocytomas, particularly if they have a particular chromosomal deletion (1p/19q). I wonder if the tissue they sent to St. Louis is being tested for this?

Your post really spoke to me. I too am a scientist (my PhD is in cell biology and cell cycle control, and I've been in the signal transduction field for about 15 years now). I totally understand you wanting more detailed answers than you're getting. Myself, I'm earlier in the journey than your husband is - smaller tumor, diagnosed in January but no resection yet; the surgeon suspects grII astrocytoma. I've been reading about molecular profiling of tumors, and attended a conference last week for work where I also went to several sessions about glioma biology. There's so much research being done, but it takes such a long time for it to trickle down to the patient! My big question is whether, when I have my resection, I can "donate" the tissue to a lab working on glioma. I'd like to contribute to the cause, and the body of knowledge, but haven't yet asked my surgeon about this.

Anyway, sorry to ramble on. Just nice to chat with a fellow scientist and kindred spirit Smile

You will find a lot of support here; it's really a gift to have this forum.
_________________
Amy (39)
*presumptive low-grade glioma in right frontal lobe (first observed Aug. 2007; diagnosed Jan. 2008)
*watching & waiting, but anticipating resection in the next year or so

soxfan · New User Joined: 27 Mar 2008 Posts: 4

Hi Amy,

Thanks for the reply. It was great to hear from you! His tumor does have the 1p/19q deletion. The testing for it was done in St. Louis. I have limited access to the world of science right now as I am a full time mommy. I am slowly getting plugged back into research. I have access to medscape but it is through my mom and so it is geared to nursing. Most article I find are not very current or are dealing with treatments for recurring tumors vs. studies into the molecular pathology of the tumor. There just isn't enough hours in the day.

My husband had the opportunity to participate in a tissue banking of sorts. I had totally forgotten about this until you mentioned donating the tumor to a lab. I will have to go back and pull the consent form and see what it was exactly.

Nice chatting with you.

brainman

soxfan, I am very sorry for your husband's cancer. If you read my story, you will see that I am a 15 year survivor of a low grade glioma (grade II) which recurred in 2005 as a grade III. Mine was on my left motor strip. I do have some speech problems and right arm and hand weakness. But I am alive Smile

.

I know how this cancer changed my life. It takes a lot of adapting to the new reality.

You and your husband are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Aimster · Regular Joined: 03 Jan 2008 Posts: 32 Location: Nebraska

Soxfan,
I am glad to hear that his tumor has the deletion - as you probably already know, that's correlated with good outcomes Very Happy

There's quite a lot of information publicly available through PubMed.com and PubMedCentral.com, if you have time for lit searching and want to check it out. I use them a lot for work. More and more articles are free to download (everything in PubMedCentral is free; regular PubMed will tell you when something's free). I also really like highwire.org, which is operated by Stanford; this search engine shows you a snippet of the context where your search term was found, making it easier to tell which articles are relevant). I've got a few articles saved that talk about molecular pathology, although most deal more heavily with astrocytoma. If you are interested, I could look them up and email you a few pdfs.

I hear you about not having time. My kids are about the same age as yours - my daughter is 4 1/2 and my son just turned 2 this week. We have a lot in common!
_________________
Amy (39)
*presumptive low-grade glioma in right frontal lobe (first observed Aug. 2007; diagnosed Jan. 2008)
*watching & waiting, but anticipating resection in the next year or so

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