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Brain Tumors No Diagnosis

Hattie Gragg
Posts: 3
Joined: May 2013

On April 8 We received a call that an MRI showed multiple areas of "lymphoma like" tumors on my husbands brain.  We were admitted thru the er at a very reputable area hospital.  April 10 my husband went under for a brain biopsy by one of the best neurosugeons in Atlanta.  He came out and confirmed that it was lymphoma based on frozen section sent to their pathology dept.  By that afternoon we were up on the oncology floor ready to begin the journey into chemo and radiation that follows a cancer diagnosis.  We were told that they needed a definative diagnosis to determine the type of cancer which should take about two days.  That was over three weeks ago.  His slides have made the rounds at Emory, Mayo and now off to Johns Hopkins.  In the mean time he has been taking high dose steroids among many others meds.  They finally released him on April 24 to continue steroids at home and wait for an answer.  A follow up MRI showed remarkable changes in response to steroids.  However, no one can deny or confirm that the tumors are malignant.  It was suggested that I put him in the car and drive him to Duke University.  Has anyone experienced this? We are living in limbo.  My obvious concern is the undetermined cause of his central nervous system tumors.  We are desperate for answers. 

leprechaun2
Posts: 73
Joined: Jul 2011

Hattie,

I am sorry you are both dealing with this.  It sounds like you are describing CNS Lymphoma exactly.  it responds temporarily to steroids and then returns. 

My husband was diagnosed in June of 2008 and started treatments in July.  His pre-chemo workup included a spsinal tap to see if the cells were in his cerebro-spinal fluid, a bone marrow test to see if the cancer had speread there, and an HIV test.  The results of each of these determine how CNS Lymphoma is treated.

We were told over and over again that this is the best brain cancer to have as it is the most treatable.  It was terrifying to hear his diagnosis but we are coming up, in just a month, on 5 yrs!  three of them have been cancer-free!

He was treated at Sloan Kettering in NYC.  Dr Abrey is no longer there but he has been treated by Drs Kaley and Omuro. 

May God bless you both.  If you have any other questions for me, you can reach me here.

Hattie Gragg
Posts: 3
Joined: May 2013

Hello!  First thank you for your very positive and encouraging feedback.  We have had a very positive attitude about this and have also been told it is very treatable.  It is nice to actually hear from someone who has been there. 

 

That said, I was wondering if you too had such difficulty diagnosing the type of lymphoma your husband had.  We do know the tumors are CNS.  There were multiple ares on his brain and spine.  We now have a consult with a neurologist today as well as another visit with the oncologist.  We are very frustrated that it is taking this long.  Do you know if this is common for brain tumors.  We were told it is more difficult with cancers involving the brain but it has been over four weeks since the biopsy. 

If you have any feedback or information we would be so grateful to just have reassurance that this is the norm for diagnosing brain conditions.  We continue to stay strong in prayer from many family and friends.  Our prayer for the moment is that diagnosis. 

 

leprechaun2
Posts: 73
Joined: Jul 2011

Hi Hattie,

I was letting you know the tests they ran so you might be able to start the ball rolling a little faster.  His biopsy was read in just a few days.  the hold up in starting treatments was the wait for the hiv test. 

I took his tests from our local hospital and the slides of his biopsy to Sloan's CNS Lymphoma specialist where we were able to get an appointment in 48 hrs due to a cancellation. His treatments started 5 weeks after diagnosis.

Your husband's case sounds more advanced, we were only dealing with two tomors, both in his brain. Is there a cancer hospital near you?  Can you get the slides of the biopsy looked at by a specialist?  Even your GP can order that hiv test that takes 10 days to read. 

If you are reading online, I recommend addiing the year into  your search as so many good things are happening with these treatments. And the news from as few as 10 yrs ago is less positive.

Be as strong as you can.  Be pro-active, and take lots of notes when the docs give you info, it can be overwhelming to process.  I became my husband's advocate and possibly quite a pain to the staff but I pushed for things to happen for him.  You deserve answers! 

 

Hattie Gragg
Posts: 3
Joined: May 2013

We had an HIV test, hepititis test and many others.  All were negative. That was weeks ago and over 20 pathologists have looked at his slides from Emory University, Mayo Clinic and John's Hopkins.  Friday they sent us to a neurologist.  He is now running tests to confirm or rule out MS.  He is to start five days of IV steroids then a more indepth MRI to look at nerve endings of his brain.  He will also have a spinal tap.  He was referring to the tumors (masses) on his brain and spine as lesions.  We have had doctors refer to them as masses, tumors and now lesions. We are frustrated and confused that it has taken so long to get to this point if it is MS.  Meanwhile my husband's health is declining.  His confusion and balance problems are all back.  We are curious to know if this is normal for brain abnormalities that "light up" an MRI.  Even I looked at his MRI and could see the multiple areas involved with these "masses, tumors, lesions" or whatever the case may be.  If you know anyone who has been through something similar please let us know.  I don't understand with the technology today how so many reputable doctors and institutions could confuse lymphoma with ms (if that is what it turns out to be).  We are trying to remain positive but time is taking it's toll.

leprechaun2
Posts: 73
Joined: Jul 2011

So sorry that you are still without answers.

My husband's tests were all negative also, thank God.  That helped his neuro-oncologist set up treatments.

I have no knowledge of similarities in scans between lymphoma and MS, sorry.  Mayo Clinic does have an article describing brain lesions which you may find helpful. 

I hope you get news soon.  (hugs)

 

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