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So scared: Brain tumor on watch and wait has grown

Posted by jkenser @jkenser, Dec 27, 2016

Hello everyone. I have been doing the "watch and wait" approach on a 1cm non-enhancing tumor in my right temporal lobe for the past 2 and a half years. On my MRI last week the tumor enhanced for the first time. I do not know what type of tumor it is because we were just watching it... Now I am headed to Mayo in the morning to meet with a neurosurgeon.. My life has been flipped upside down within a matter of days. Has anyone else had a tumor in their right temporal lobe? I ask for lots of prayers of complete healing for all of us xoxoxox

Interested in more discussions like this? Go to the Brain Tumor Support Group.

lindalb | @lindalb | Mar 20, 2017
In reply to @tallygirl "I hope Mayo clinic finds some answers and relief for you I certainly will follow your..." + (show)
@tallygirl

I hope Mayo clinic finds some answers and relief for you I certainly will follow your case. I am on a watch and see type of schedule too. I go in April. Which Mayo do you go to?

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What's his name? What part of Florida are you in? I'm in Fort Lauderdale and look o king for right Dr.

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tallygirl | @tallygirl | Mar 20, 2017
In reply to @tallygirl "I hope Mayo clinic finds some answers and relief for you I certainly will follow your..." + (show)
@tallygirl

I hope Mayo clinic finds some answers and relief for you I certainly will follow your case. I am on a watch and see type of schedule too. I go in April. Which Mayo do you go to?

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Hi Linda...I live in the western part of the panhandle. Pensacola...The doctor I'm looking at that came to Mayo in Jacksonville is Dr. Mohammad Bydon. Google him and see what you find out. Let me know what you find out. Hugs!!!

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lindalb | @lindalb | Mar 20, 2017
In reply to @tallygirl "I hope Mayo clinic finds some answers and relief for you I certainly will follow your..." + (show)
@tallygirl

I hope Mayo clinic finds some answers and relief for you I certainly will follow your case. I am on a watch and see type of schedule too. I go in April. Which Mayo do you go to?

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Thank you! Will do big hugs to you too let's keep n touch.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 20, 2017
In reply to @tallygirl "I hope Mayo clinic finds some answers and relief for you I certainly will follow your..." + (show)
@tallygirl

I hope Mayo clinic finds some answers and relief for you I certainly will follow your case. I am on a watch and see type of schedule too. I go in April. Which Mayo do you go to?

Jump to this post

Hi Linda,
You'll notice that I removed your email address as we don't want you to get unwanted spam and to keep the community safe. We recommend that you use the private message function to share personal contact information.

Here's how to send a private message:
1. Click the member's @username.
2. Click the envelope icon in their profile.
3. Write a subject and your message.
4. Click Send Message.

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nancye3 | @nancye3 | Jul 8, 2017
In reply to @tallygirl "I hope Mayo clinic finds some answers and relief for you I certainly will follow your..." + (show)
@tallygirl

I hope Mayo clinic finds some answers and relief for you I certainly will follow your case. I am on a watch and see type of schedule too. I go in April. Which Mayo do you go to?

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Hi,
So happy for you!! Who is your Doctor at Mayo? My sister who has several new meningiomas has an appointment at Mayo July 26 for a third opinion. We are trying to research Doctors there. We live in Atlanta, but she has been getting conflicting opinions here from 2 different neurosurgeons.
Thank You,
Nancy

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nancye3 | @nancye3 | Jul 9, 2017
In reply to @jkenser "Thank you everyone for the prayers. It has been a whirlwind of a couple of weeks...." + (show)
@jkenser

Thank you everyone for the prayers. It has been a whirlwind of a couple of weeks. I had my appointment last Wednesday the 28th and was scheduled for a right temporal lobe resection on Friday December 30th. It has been one week since surgery. Thank you Lord that they were able to remove the tumor. I am still waiting/praying for my pathology reports and am praying for whatever it was that it was benign and will never come back. I had the best team in neurosurgery work on me and in such quick time. God literally answered all of our prayers. I am so thankful for everyone at Mayo. Being in the healthcare field myself I can tell you that this experience has forever shaped the way I will practice medicine. Nurses and doctors have so much power over their patients fears, I had no idea how much of a difference they can make until undergoing this experience. I think I am healing well. I have never had any surgery before so am still unsure as to what to expect. I can tell you that I woke up from surgery knowing who I am, and how my family is, which is what I prayed for. I am walking, talking, and eating.. all blessings. The pain has not been too bad although the right side of my head is numb and sore. We are just praying for continued healing and great results. Thank you everyone for the kind words. The Mayo clinic is such an amazing place and I am truly blessed to have gotten in as quickly as I did.

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What a relief your surgery is behind you and you are doing well!! Who was your neurosurgeon at Mayo? My sister is flying there from Atlanta the end of July for an opinion and hopefully treatment plan for multiple meningiomas.
Thank You!
Nancy

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user_chea8a92a | @user_chea8a92a | Jul 9, 2017

This whole brain tumor diagnosis is so scary! No concrete answers! I was diagnosed with an inoperable ogliodendroglioma over 2 years ago it responded well to temador and shrunk in half! I have no deficits but seem to live in fear lately! Any input from anybody?

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1 reply
dkubacki | @dkubacki | Oct 22, 2022
In reply to @user_chea8a92a "This whole brain tumor diagnosis is so scary! No concrete answers! I was diagnosed with an..." + (show)
@user_chea8a92a

This whole brain tumor diagnosis is so scary! No concrete answers! I was diagnosed with an inoperable ogliodendroglioma over 2 years ago it responded well to temador and shrunk in half! I have no deficits but seem to live in fear lately! Any input from anybody?

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I'm there. living in the fear.

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alexie1942 | @alexie1942 | Nov 11, 2022
In reply to @hopeful33250 "@rosesareredmylove2016 Thanks for the additional information about the tumor. Getting these rare tumors can be quite..." + (show)
@hopeful33250

@rosesareredmylove2016 Thanks for the additional information about the tumor. Getting these rare tumors can be quite a challenge, I know. I appreciate your sharing. Best wishes and keep in touch with Mayo Connect.

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My son has Acoustic Neuroma age 50 years last MRI shows it has grown
8mm by 13. Can anyone share some information on this rare Brain Tumor?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 20, 2022
In reply to @alexie1942 "My son has Acoustic Neuroma age 50 years last MRI shows it has grown 8mm by..." + (show)
@alexie1942

My son has Acoustic Neuroma age 50 years last MRI shows it has grown
8mm by 13. Can anyone share some information on this rare Brain Tumor?

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Hi @alexie1942, I can imagine you are very worried for your son. You can connect with other members living well with an acoustic neuroma in this discussion:
- Anyone else diagnosed with acoustic neuroma, a benign brain tumor? https://connect.mayoclinic.org/discussion/so-scared/

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