http://my.braintumorcommunity.org/discussions/rare-or-other-tumors en-us http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2012/04/05/new-website http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2012/04/05/new-website
Thanks!]]> Thu, 05 Apr 2012 05:47:14 GMT docsbydocs http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2012/02/15/how-did-doctors-not-help http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2012/02/15/how-did-doctors-not-help Wed, 15 Feb 2012 12:33:28 GMT Anonymous http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/12/18/husband-battled-ganglioglioma-for-5-yrs http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/12/18/husband-battled-ganglioglioma-for-5-yrs Sun, 18 Dec 2011 13:15:38 GMT cjo36 http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/11/11/unknown-type-of-tumor http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/11/11/unknown-type-of-tumor Fri, 11 Nov 2011 23:41:17 GMT Alaskan http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/10/17/optic-nerve-glioma http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/10/17/optic-nerve-glioma
My 34 yr old son has recently been diagnosed with this type tumor.  Blurred vision in left eye led to the diagnosis.  Doctors are not in a hurry to operate and some discussion as to whether this is an optic nerve glioma or a very large pituitary gland tumor.  ]]> Mon, 17 Oct 2011 22:09:06 GMT Anonymous http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/09/15/amyloidoma-tumor http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/09/15/amyloidoma-tumor Fri, 16 Sep 2011 00:03:17 GMT alychal http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/08/23/cns-lymphoma http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/08/23/cns-lymphoma Tue, 23 Aug 2011 16:08:19 GMT katiegro http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/08/10/appointment-was-delayed http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/08/10/appointment-was-delayed
I had called the doctor's office about two months ago to inquire about surgically removing the tumor that's near the Thalamus.  A young assistant called me back and relayed that  the neurosurgeon had said "Not to touch it."  I informed the radiation oncologist two weeks ago of that conversation when she was 'ready to plan the radiosurgery'.  Wondered if I'd made a mistake to have caused the delay...  Wondered if I should follow the advice 'not to touch it'... 

He had written on my chart one time that neurosurgery was not recommended because I'd 'already had recurrent breast cancer'.   But my oncologist thinks I'm 'cured' (it was a 'local-regional' recurrence) and didn't seem want to give me advice on the brain tumor part.

I've reduced my activity level to near 'zero' and actually am feeling not that bad - taking less painkiller than early June.  But the wait is killing me...

]]> Wed, 10 Aug 2011 07:37:40 GMT Jackie2 http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/06/20/testing-2 http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/06/20/testing-2 Mon, 20 Jun 2011 21:30:05 GMT Jackie2 http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/06/20/testing---cn http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/06/20/testing---cn Obama impersonator on CNN.  It's scary to see there is someone who actually looks and talks like the President.
]]> Mon, 20 Jun 2011 21:23:28 GMT Jackie2 http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/04/07/is-there-ever-a-right-choice http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2011/04/07/is-there-ever-a-right-choice Hello again,

I've been posting for a while about my sister and friend - both of whom have pineal astrocytomas.

My sister has had two surgeries, the last one in 2009, and her tumor continues to grow. She's been down here with us in rehab since January, and is now facing another round of radiation, as surgery is no longer an option for her.

I have mixed emotions on this. On one hand, the radiation 'may' stop the growth, and give her a bit more time to live. On the other hand, her tumor was resistent to radiation the first time, so chances are it may very well be again. The concern here is that radiation could accelerate 'everything', she will have the same side effects as the first time, and there is the risk of the hydrocephalus returning, and THAT caused her HUGE problems.

Her quality of life now is poor. Her hands and feet are atrophying and are in braces, she's on a gastric feeding tube, with no hopes of ever having any food or drink in her mouth again, and she does have some spinal fractures as a result of osteoporosis. She is still lucid though, smiles at our silly jokes, watches tv and for the most part has maintained her sense of humor. Sure she has bad days, but that is to be expected.

I guess my biggest worry is that the radiation will complicate her life even further. I would hate to see her sick, and for her to have even less of a connection with us. At the same time, how awful must it be to consider saying no to a treatment that 'may' help? It can't be easy to toss in the towel and say "no thanks, I'll skip it" Palliative care is her next step - this we have already been told.

If there were certainties in this world, the choices would be so simple, wouldn't they?

So now I think of my friend. His surgery was in November. He's been doing VERY well. Lives alone, walks miles everday, works on his art, and chats our ears off as he's always done. His last MRI says there still is a large portion of tumor left. Of course - they can't get it all. He is going to have cyber-knife in the next week or so.

I can't help by have my reservations on this. Yes, I know he's got a horrible tumor, and yes I realize like my sister's it is likely to grow. BUT - at this stage he is healthy, happy, not ill, not symptomatic. He is taking some huge risks with this treatment, and I can help but worry that maybe this is something he should consider...later. I know he is rolling the dice, hoping to kill his tumor, and with any luck this will be the case. But I can't help this feeling of dread that he could come out of this with troubles that are irreversable. He feels good at the moment. They have told him that they (the staff at this hospital) have never treated a pineal tumor so close to the brain stem with this technology. He will be the first.

I'm sorry...I do know there is no right answer. It is just so frustrating to see these tumors getting the better of good people. I guess all I can really do is stand by their decisions, and be there for both of them. And pray...

Wishing the best for everyone on this board, and hope you all are doing well.]]> Thu, 07 Apr 2011 13:15:19 GMT Dressagebuff http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2010/08/19/what-are-the-chances-img-alignabsmiddle-srcimagess http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2010/08/19/what-are-the-chances-img-alignabsmiddle-srcimagess
At that SAME time in 2008, a friend of mine also had a brain tumor - Hemangioblastoma. While my sister has been consistently monitored over the last two years, this friend of mine had not. After MUCH badgering on my part he finally made an appointment for his first MRI in two years!!

And? He's been diagnosed with a pineal tumor now as well - same as my sister's only much smaller. He's not yet symptomatic, which is good, as it has given him the ability to rehabilitate from his first surgery. I'm sure it was there in 2008, but still....what are the chances?!?!

Needless to say, he's quite upset, and I feel badly for pestering him to find out. He needed to know either way that he was well, or that he wasn't, I feel. Of course, it has not helped that he's been keeping track of my sister's condition since December. Hearing about all the problems she's had. MANY shunt surgeries, and external brain drains, and now how they can't control the negative pressure hydrocephalus. Because she's been immobile for almost 8 months, her muscles are atrophying, and both hands and feet are curling up. It is all horribly sad. She's now 54.

I never thought for a minute he'd be facing the same thing now. I'm confident he won't suffer the same complications, and is going into this surgery much stronger than my sister was. They have the same surgeon, who I like and trust very much, but as you all know, there are never any guarantees. He is just 48. He's going into hospital on September 22nd.

My goodness, it's been a long two years...and I guess it's far from over...


]]> Thu, 19 Aug 2010 12:40:03 GMT Dressagebuff http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2010/07/19/hemangiopericytoma http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2010/07/19/hemangiopericytoma thanks
Gail]]> Mon, 19 Jul 2010 22:52:13 GMT ghud67 http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2010/06/28/squamous-cell-carcinoma-of-the-brain http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2010/06/28/squamous-cell-carcinoma-of-the-brain
My father was recently diagnosed with stage 4 squamous cell carcinoma in his brain stem. This is an inoperable tumor and I have yet to meet anyone with this particular type of cancer. I would love to connect with others who have experienced this to get a little more information!

Thanks,
Kate]]> Mon, 28 Jun 2010 20:55:35 GMT katezaidan http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2010/03/25/central-neurocytoma---anyone http://my.braintumorcommunity.org/discussions/rare-or-other-tumors/2010/03/25/central-neurocytoma---anyone
I had a 23-hour brain surgery in 1990, and three rounds of Gamma-knife radiosurgery in 2001. Been working (and getting 'fired' all the time until 2008 - finally applied for disability. With two brain surgeris and two breast cancer surgeries and two full-doses of chemotherapies (which hurt my brain more than anything else), I was finally granted a partial disability. Can't see anybody that will be crazy enough to hire me - every one of my full-time employers had to pay for one of my surgeries. Can't really blame them - I wasn't aware of my 'disability'...

I've been active on the breast cancer support group and lately picked up a hysterectomy group. Was surprised to notice this group in my e-mail today. Have I been missing it all these years? Don't really expect to meet anyone with the same type of tumor. But I hope I can help some that are facing surgeries because I had gone through physical therapy, occupational therapy, and speech therapy.]]> Fri, 26 Mar 2010 02:14:50 GMT Jackie2