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Amy
@mamab1223

Posts: 5
Joined: Aug 02, 2016

Central Neurocytoma (recurring) diagnosed today with tumors #5 & 6

Posted by @mamab1223, Aug 1, 2016

Anyone to help with recurring Central Neurocytoma, my sister was just diagnosed with 2 more this makes the 5th n 6th CN in 15 years.

REPLY

Hi @mamab1223, welcome to Connect. I’m sorry to hear that your sister has had multiple CN’s, especially with this condition being relatively rare. I wanted to show you two studies I found on CN that I hope you may find helpful: http://neurosurgery.ucsd.edu/neurocytoma/
http://neuro-oncology.oxfordjournals.org/content/early/2011/08/07/neuonc.nor074.full

You may notice that in the first link, they noted that these tumors largely effect young adults and “have a relatively benign clinical course.” They also suggested surgically removing the tumors in order to control their growth. Has her doctor recommended a course of action as to treatment? Has she had a surgical consult?

@aliskahan

Hi @mamab1223, welcome to Connect. I’m sorry to hear that your sister has had multiple CN’s, especially with this condition being relatively rare. I wanted to show you two studies I found on CN that I hope you may find helpful: http://neurosurgery.ucsd.edu/neurocytoma/
http://neuro-oncology.oxfordjournals.org/content/early/2011/08/07/neuonc.nor074.full

You may notice that in the first link, they noted that these tumors largely effect young adults and “have a relatively benign clinical course.” They also suggested surgically removing the tumors in order to control their growth. Has her doctor recommended a course of action as to treatment? Has she had a surgical consult?

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Hi I can’t believe I got a response. Thank you so much. After awhile you
start to feel like no one wants to help.
So, yes she has had multiple surgeries for the other tumors. We were told
five years ago she was maxed out on radiation treatment and the tumor in
right ventricle was too dangerous to remove. So they have been watching it.
It has been stable for five years. She was also diagnosed with MS, same
time she was diagnosed with first tumor in 2001. She had a flare up
supposedly with the MS 2 weeks ago. She went early for MRI bc of the flare
up. She was experiencing paralysis on side of mouth n numbness in fingers
and legs. They put her on iv steroid for 4 days I think n now she is
finishing the oral steroid but still not completely back to normal.
MS Dr says she has 2 more lesions.
Neurologist says she has two new tumors approx .34 in size.
Treatment suggested is Gammaknife radiation.
I’m confused bc I thought she couldn’t have anymore and that’s why we were
watching the 4 cm tumor in right ventricle.
Dr’s say this is not normal for Central neurocytoma, could it be possible.
None of this is what they think? We have had top docs from Jefferson n
Hopkins all give different answers through years. She has MS, she doesn’t
have MS, She should have surgery she shouldn’t. She should never get any
more radiation now she should.
What do we do? Anywhere or anyone specialize in these tumors that act like
this?
Truly appreciate the response.
Amy

Liked by Ali Skahan

@aliskahan

Hi @mamab1223, welcome to Connect. I’m sorry to hear that your sister has had multiple CN’s, especially with this condition being relatively rare. I wanted to show you two studies I found on CN that I hope you may find helpful: http://neurosurgery.ucsd.edu/neurocytoma/
http://neuro-oncology.oxfordjournals.org/content/early/2011/08/07/neuonc.nor074.full

You may notice that in the first link, they noted that these tumors largely effect young adults and “have a relatively benign clinical course.” They also suggested surgically removing the tumors in order to control their growth. Has her doctor recommended a course of action as to treatment? Has she had a surgical consult?

Jump to this post

This sounds like it’s been quite a long road and I’m sorry that you’ve had such conflicting answers. Unfortunately, I am not a doctor and cannot provide advice about the best course of action for your sister. However, I am tagging @lal2 and @cheriroberts who have written about MS symptoms in the past. I’m hoping they may be able to weigh in or discuss their experiences with MS.

Again, because I am not a doctor I can’t speak to the recommendations they’ve given you, but I did find this information on Gammaknife radiation, where it is noted that it’s “generally less risky than traditional neurosurgery,” which could potentially be one of the reasons the doctor suggested it. http://www.mayoclinic.org/tests-procedures/brain-stereotactic-radiosurgery/basics/risks/prc-20014760

I’m also not sure where you are located, but I was able to find a Mayo Clinic doctor in Rochester who interested in gammaknife: http://www.mayoclinic.org/biographies/garces-yolanda-i-m-d/bio-20053452

Good morning @mamab1223. I moved your discussion to the Brain Tumor group so that you can meet other Connect members sharing about brain tumors. @db also has central neurocytoma but hasn’t posted for quite some time on Connect. I’m hoping s/he might return to talk with you.

@cynaburst @rossam @dmedina71 @parker80138 @amiceman will you join me in welcoming Amy to our group?

Amy, your sister might wish to consider Mayo Clinic for a second opinion. Experts at the Mayo Clinic can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-access program.

@colleenyoung

Good morning @mamab1223. I moved your discussion to the Brain Tumor group so that you can meet other Connect members sharing about brain tumors. @db also has central neurocytoma but hasn’t posted for quite some time on Connect. I’m hoping s/he might return to talk with you.

@cynaburst @rossam @dmedina71 @parker80138 @amiceman will you join me in welcoming Amy to our group?

Amy, your sister might wish to consider Mayo Clinic for a second opinion. Experts at the Mayo Clinic can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-access program.

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Thank you. My parents are over nighting her cd today I think. They had to
pick up more yesterday.

Amy, I meant to also tag @IndianaScott on this discussion. He too is a caregiver and cared for his wife who had a brain tumor. It can help to connect with other caregivers. Scott, will you join me in welcoming Amy?

Liked by Kimberly

@colleenyoung

Good morning @mamab1223. I moved your discussion to the Brain Tumor group so that you can meet other Connect members sharing about brain tumors. @db also has central neurocytoma but hasn’t posted for quite some time on Connect. I’m hoping s/he might return to talk with you.

@cynaburst @rossam @dmedina71 @parker80138 @amiceman will you join me in welcoming Amy to our group?

Amy, your sister might wish to consider Mayo Clinic for a second opinion. Experts at the Mayo Clinic can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-access program.

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Fabulous, Amy! Glad to hear things are moving forward. Keep us posted.

@colleenyoung

Good morning @mamab1223. I moved your discussion to the Brain Tumor group so that you can meet other Connect members sharing about brain tumors. @db also has central neurocytoma but hasn’t posted for quite some time on Connect. I’m hoping s/he might return to talk with you.

@cynaburst @rossam @dmedina71 @parker80138 @amiceman will you join me in welcoming Amy to our group?

Amy, your sister might wish to consider Mayo Clinic for a second opinion. Experts at the Mayo Clinic can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-access program.

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Thank you. Right now we are just waiting to find someone to figure things
out. Went yesterday to oncologist who would of done the gamma knife and she
had no records to compare. Very surprised how unprepared. The neurologist
is saying they are lesions n the neurosurgeon us saying they are brain
tumors. The oncologist says she doesn’t know and now we have to wait till
next Monday for tumor board to look at it. What a joke. Wasting precious
days if this is tumors. Hopefully mayo clinic will get cd and get us
answers ASAP.

@colleenyoung

Good morning @mamab1223. I moved your discussion to the Brain Tumor group so that you can meet other Connect members sharing about brain tumors. @db also has central neurocytoma but hasn’t posted for quite some time on Connect. I’m hoping s/he might return to talk with you.

@cynaburst @rossam @dmedina71 @parker80138 @amiceman will you join me in welcoming Amy to our group?

Amy, your sister might wish to consider Mayo Clinic for a second opinion. Experts at the Mayo Clinic can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-access program.

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Hello @mamab1223 I am Scott Phillips. I am sorry to hear what your sister (and you and the family) are experiencing. My wife had brain cancer for 14 years. At the outset, she too received conflicting information, what we viewed as somewhat strange diagnoses, and more. Her first medical work was in New Mexico (worthless). Next it was in Chicago. We insisted on a second opinion after Chicago and picked the Mayo Clinic in Rochester, MN. They finally were able to tell us what she was dealing with, medical options, and doctors who were fully prepared, excellently trained, and far more familiar with her tumor type than any of the others elsewhere.

As her primary caregiver during her journey, I can say the doctors at Mayo also were sure to include me in her care plans very well.

I wish you the best and will say prayers for your sister.

Scott

Liked by brit

Thank you Scott. I’m very sorry. Hopefully we will have a concrete answer
soon.
Amy

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