Anaplastic astrocytoma

dancingintherain · Regular Joined: 31 Jan 2008 Posts: 16

Hi, Im my name is Sarah and I am new here. My husband was diagnosed with grade3-4 anaplastic astrocytoma of the pineal gland 5 years ago. At the time of diagnosis his onc said his prognosis was 3-5 years following treatment. He was treated with radiation and temodal. As well he had surgery to get a biopsy, but because of the location, thats all they were able to do. His MRIs have all been fine up until 2 weeks ago. The last scan showed that the tumor has doubled in size (from 1.17cm to 2.2 cm). We are both terrified. The doctors are not moving as quickly this time in regards to treatment, and I am thinking the worst of course. The option of treatment my husband is looking for is radiostatic surgery (gamma knife). But the research I have done, has not shown to be too encouraging. Please, I need something, anything to shed some encouragment. Im scared, because of the pace the docs are moving at.

Thank you!!
Sarah

brainman · Posted: Fri Feb 01, 2008 2:23 am Post subject: Re: Anaplastic astrocytoma

Hi Sarah. I am very sorry about your husband's cancer. I too have had to deal with a recurring gioma. However, I was fortunate in that the location was easily accessible so they could remove most of it with surgery.

The problem with radiation therapy is that the brain (or any other organ for that matter) can only take a certain, life time limit of rads. If your husband has already had some radiation therapy, that decreases the amount they can give him now. Temodal or some other chemotherapy (like PCV) might be his only option.

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/

dancingintherain · Regular Joined: 31 Jan 2008 Posts: 16

Thank you so much for your quick reply. I am so sorry to hear that you have been through this too. I only know second hand, and I can even begin to imagine. My prayers are with you and anyone with this awful disease. I am desperately praying for a cure.

I was wondering though, my husband had the max. amount of radiation the first time around, so that means he wont qualify for radiostatic surgery?

Sarah

ps. this web site is a blessing, and I am so glad that I fell upon it, thank you!

brainman · Posted: Sat Feb 02, 2008 12:24 am Post subject: Re: Anaplastic astrocytoma

Hi Sarah. I cannot answer with 100% confidence that I am giving you the correct information. However, it is my understanding that he would not be able to take anymore radiation because of the danger that more radiation might in fact cause other problems... including radiation induced cancer. Having said that, I would check this out with his own medical team. It is possible that he still might be able to be treated with more targeted radiation like stereotactic radiation or gamma knife radiation.
_________________
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/

dancingintherain · Regular Joined: 31 Jan 2008 Posts: 16

so, we found out that my husband does not qualify for the gamma knife. 2 reasons: 1 - he has had max radiation to that particular site of the brain 2 - they said that they dont tend to treat fluid filled cysts with gamma knife. The last reason came as a complete shock. As far as we knew, it was the tumor growing, not a cyst. The doc said he recommends surgery and that chemo probably wont do anything. Of course now we have to wait until we see his main onc to get answers. I am so confused. They said the original tumor is still there, but it is a cyst that is growing. Has anyone out there experienced this?? At least when it was a tumor, I knew what they were talking about, and knew that there were more options than just surgery Sad

brainman · Posted: Mon Mar 03, 2008 5:23 pm Post subject: Re: Anaplastic astrocytoma

Sarah, I have had experience with that. Fortunately, I did not need surgery since my cyst was so small and drained on its own... possibly because of the steroid I was taking to reduce brain swelling. It is not uncommon for a glioma... especially a large one... to have a cyst associated with it. It is usually found in the middle of the tumor where the majority of cancer cells are dying due to lack of blood supply and therefore nutrients and oxygen. Plus, it could encapsulate normal brain fluid that is not draining properly. However, a cyst is much easier to tread than the tumor itself. As you already know, surgery on the brain can be easy to recover from.

I am sorry that your husband does not qualify for any more radiation Sad

. Are they still saying the tumor is an astrocytoma or are they calling a GBM? Another question, are you at a major research medical center? If not, you might want to take your husband to one to get a second opinion on the chemotherapy options.

You and your husband are still 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/

dancingintherain · Regular Joined: 31 Jan 2008 Posts: 16

thank you for your reply. Your knowledge about brain tumors is amazing. I am relieved to know now that cysts can drain on their own. The only worry I have about them treating the cyst, is that it is on the pineal gland, so surgery is a pretty tricky thing.
As far as we know, they are still calling the tumor an anaplastic astrocytoma. We are in Canada, close to Toronto. In fact thats were we went about the gamma knife. They just referred us back to our home town. We will ask at the next appointment for a second opinion though, thank you for the suggestion.
Can cysts cause complications? My husband has a shunt, so will he ever have any symptoms? The only symptoms he had when he was first diagnosed, was caused by increased pressure (and then relieved by the shunt). Sorry about all the questions, but it will be about 2 more weeks before we get into his doctor.
Thanks again Smile

brainman · Posted: Wed Mar 05, 2008 10:14 am Post subject: Re: Anaplastic astrocytoma

No problem, Sarah. Answering questions is what we are here for Wink

. And if I don't know the answer, I am glad to do a little research.... always willing to learn more about the brain. It is such a wondrous organ.

Anything within the scull that is getting bigger whether malignant or benign is a potential problem because it can press against other parts of the brain affecting the function(s) of that part of the brain. You should not assume that it will drain on its own.

I do not know much about the pineal gland. I do know that it makes a hormone that controls our sleep pattern and that it is far down inside the brain. I do not know how difficult the location of the cyst will be to drain or even reach. Obviously, the cyst might have an effect on your husband's sleep pattern but it might also affect other functions of nearby areas.
_________________
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/

petrit · Regular Joined: 15 Aug 2007 Posts: 32

Hello Jim how u doing are u ok

I would like to know a bitt more about cysts cos my oncolgist said that in place where was tumor it may start to grow cyst but he is no sure .
so how did u treat yours pls , my father still takes dexamethasone for brain swelling .
Does it need any other mediaction or ???/

many thanks

hope u well

dancingintherain · Regular Joined: 31 Jan 2008 Posts: 16

petrit, Iam not sure if your question was directed at me or not, but I can tell you that for my husbands cyst, they are recommending surgery to drain the cyst, but they may also wait and see. They are not giving him medication right now for it. I hope I answered your question. Good luck to you!

dancingintherain · Regular Joined: 31 Jan 2008 Posts: 16

well it looks like more surgery and chemo for my husband. We saw the neurosurgeon today and he is going ahead with surgically draining the cyst and biopsying the tissue. It will be booked within the next 3-6 months, as they want it to grow a little more to make it easier to get at. I just feel beat. Waiting for each step of this next phase is awful. I cannot imagine what my husband is feeling. Its been almost 6 years since the start of all of this, just when we started to get life back on track... At least we have a plan now.

brainman · Posted: Tue Apr 22, 2008 8:38 pm Post subject: Re: Anaplastic astrocytoma

Hi dancingintherain, glad to get this update from you. Why so long for the surgery (3-6 months)? I know how hard it was for me before the decision was made but after it was only a matter of a few weeks before my surgery... also I expected that would be the case all along. I can understand you feeling beat. Waiting is more exhausting than it sounds. Plus the ups and downs of the process Sad

.

You and your husband continue to be 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/

dancingintherain · Regular Joined: 31 Jan 2008 Posts: 16

I think they are willing to wait a little longer because it is fairly small (as cysts go), and if it grows a little bigger they feel they will have more success.
Thank you so much for your thoughts and prayers. I think about you and others on this board all the time and pray desperately that they find a cure.

Sarah

ksplat · Posted: Thu Apr 24, 2008 4:54 pm Post subject: Re: Anaplastic astrocytoma

Dear Sarah

I am so sorry to hear about your Husband's Astrocytoma & the cyst he is currently enduring. My heart & prayers go out to the both of you. This is the biggest & most difficult challenge you will have to face & my prayers & thoughts are with you.

It seems so cruel to be told the surgery will be postponed until the cyst grows larger. The waiting is the hardest of all! What if the cyst doesn't increase enough? Then will it be postponed again? Yoy may even find the cyst dissipates without treatment, that would be the best & most fantastic outcomel!

If you're not entirely comfortable with the "wait & see" have you considered seeking a 2nd opinion. This may help with the unrest you have with the current situation.

Is your Husband showing any deficits from the increased pressure in his brain? If this is so, perhaps steroids need to be prescribed to enhance your Husband's treatment?

Once again you are in my thoughts & I'm very sorry you are enduring this uncertainty & worry.

Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

dancingintherain · Regular Joined: 31 Jan 2008 Posts: 16

Angie, thank you so much for your kind response. As unhappy we are about waiting, our understanding is that this surgery is considered low priority because my husband is not having many symptoms. This is mostly due to the fact that he has a shunt. We are sort of lucky that he still has the shunt, otherwise he would be having a lot more symptoms from the pressure.
You are absolutely right that waiting is hardest of all.... all of the what ifs? I am finding it particularly difficult this time, as we have a 3 year old who is very smart and I think we will have to be up front with her (to a point), but at the same time, I want to protect her.
Thank you again for your thoughts and prayers, it means so much to us!

Sarah

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