1. < Brain Tumor

Need 2nd opinion fast: Brain tumor, also have lung cancer

Posted by Kym @kdimmerman, Jun 3, 2016

I need to find an expert that can give me a second opinion fast. They did an MRI yesterday and have a tumor in the right front lob about 3 centimeters. They wanted to do surgery right then and there. I was baffled because we don't even know what kind of cancer I have. I also was diagnosed with lung cancer 2 weeks ago - and we don't know what kind of cancer that is either. Before I have the surgery I want to find someone at Mayo that is an expert in removing brain tumors and I want them to look at my tests to see if I have time to monitor this of if I really need to have the surgery right now. I have no symptoms - would have never know anything was wrong with me. Can anyone get me a referral or have a doctor connect with us?

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

robinjenkins70 | @robinjenkins70 | Jun 6, 2016
In reply to @jms7 "Dear kd I am stunned to come across this in glancing at the digest. Please know..." + (show)
@jms7

Dear kd I am stunned to come across this in glancing at the digest. Please know your situation has reached my heart and I am praying for you mightily. I will watch for your updates. I can't imagine how shocked you feel. No reply expected - wondering how you learned about cancer in lung - very smart to want more information before any big procedure! My thoughts and prayers are with you. Please keep us all posted when you can! : )

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You need a Biopsy on your brain tumor. I had my tumor removed four years ago at Duke by Dr. Friedman. He is wonderful in NC. <br><br>

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 22, 2016
In reply to @kdimmerman "Thank you everyone. I am in Minneapolis. We reached out to the Mayo clinic and unfortunately..." + (show)
@kdimmerman

Thank you everyone. I am in Minneapolis. We reached out to the Mayo clinic and unfortunately we couldn't get in for about 10 days - way to long to put off the surgery. We have learned in a short period of time that brain tumors are aggressive and grow very quickly. It appears I have had mine for a month and so they are pushing to get this taken out in the next few days. We so many people having cancer doctors are overwhelmed and it's almost impossible to get an appointment with someone who has the credentials that you really want to perform this type of major surgery. I don't want just anyone cracking my skull open but I might not have a choice at this point. It's the worst feeling.

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@kdimmerman, although it was originally conveyed to you that an appointment at Mayo Clinic would take approximately 10 days, we stand corrected and that – in fact – we offer appointments with our brain tumor experts within 48 business hours at the Rochester, Florida, or Arizona campuses. We would like to investigate what happened and have sent you a private message.

To everyone else reading this discussion: We recognize that hearing you have a brain tumor is stressful and challenging. No doubt you will have questions about the diagnosis, treatment options and what will happen next. 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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Mentor
Scott, Volunteer Mentor | @IndianaScott | Jul 30, 2016

I am sorry I came to this discussion late. My wife had her discovery at a hospital in Chicago. They wanted to do immediate surgery. She opted for a second opinion. We made an appointment at Mayo and she had a stereotactic biopsy performed. This gave us incredibly valuable insight into her actual condition, type of brain tumor, etc. It was a crucial step in her care and although it irritated the folks at her first hospital, it was absolutely the right decision and option for her and her care. I cannot speak highly enough of the neuro-oncology team at Mayo!

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Kay | @irvkay312 | Jul 30, 2016

When It comes to dealing with the complexity of the brain and body items it controls, I can't buy haste over care, research, understanding, etc. I would always go for a second opinion in respect to brain surgery even with the advances that have been made in todays medicine. Supposing you sought the surgery without a second opinion and a mistake that a second opinion didn't note paralized you for life. Would you be forgiving of the parilization or not having one? I think not.

Example: Forceps were misused at the time of my birth causing pressure on the brain. The element became or initiated Grand Mal epilepsy and slowly Status Epileptus, where I was rushed to the hospital for emergency brain surgery to save my life. In those days the lead surgeion came out to the resposible party, my parents and said "with the location of the pressure and tools we have, if we make the slightest mistake, Kay can be parilized for life, lose hearing, vision, senses, balance, etc. what do you advise us to do?" "Close him up my parents said, we'll take him like he is." They did that, but the third surgeon doing the closing up severed a vein and had to call the lead surgeon in to fix it. "Personally, I view it as a gift from GOD; since after the vein was corrected my seizures became controllable by different medications and dosages."

The surgeons having given my parents the choice noted above was similar to a second opinion.

irvkay312

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Sandy Dominy | @sandydominy1 | Aug 10, 2016
In reply to @colleenyoung "Hi @kdimmerman, So sorry to hear about your situation. Please use the contact information to request..." + (show)
@colleenyoung

Hi @kdimmerman,
So sorry to hear about your situation. Please use the contact information to request a second opinion from Mayo Clinic http://mayocl.in/1mtmR63. Calling the numbers at the location of your choice is the most efficient way to get a referral.

I'm also tagging @cynaburst @neffjsn @travelgirl @audrapopp @dmedina71 on this conversation. You're not alone.

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If you live in the
South , go to Duke

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Sandy Dominy | @sandydominy1 | Aug 10, 2016
In reply to @kdimmerman "Thank you everyone. I am in Minneapolis. We reached out to the Mayo clinic and unfortunately..." + (show)
@kdimmerman

Thank you everyone. I am in Minneapolis. We reached out to the Mayo clinic and unfortunately we couldn't get in for about 10 days - way to long to put off the surgery. We have learned in a short period of time that brain tumors are aggressive and grow very quickly. It appears I have had mine for a month and so they are pushing to get this taken out in the next few days. We so many people having cancer doctors are overwhelmed and it's almost impossible to get an appointment with someone who has the credentials that you really want to perform this type of major surgery. I don't want just anyone cracking my skull open but I might not have a choice at this point. It's the worst feeling.

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Sure wish you were in Ga. Our neurosurgeon took out 95% of my hubby's. It was a fast leap of faith and w help from chemo and radiation he's doing great 7 mos later. We contacted Duke
For clinical trials. We will go if tumor cones back. These cancer centers offer financisl assistance too. Even airline vouchers. Take control of your diagnosis.
I have on my hubby's behalf

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 10, 2016
In reply to @kdimmerman "Thank you everyone. I am in Minneapolis. We reached out to the Mayo clinic and unfortunately..." + (show)
@kdimmerman

Thank you everyone. I am in Minneapolis. We reached out to the Mayo clinic and unfortunately we couldn't get in for about 10 days - way to long to put off the surgery. We have learned in a short period of time that brain tumors are aggressive and grow very quickly. It appears I have had mine for a month and so they are pushing to get this taken out in the next few days. We so many people having cancer doctors are overwhelmed and it's almost impossible to get an appointment with someone who has the credentials that you really want to perform this type of major surgery. I don't want just anyone cracking my skull open but I might not have a choice at this point. It's the worst feeling.

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Welcome Sandy. So good to hear of your experience. What type of brain tumor did your husband have? What clinical trial was he on? We look forward to getting to know more about you.

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Sandy Dominy | @sandydominy1 | Aug 10, 2016
In reply to @kdimmerman "Thank you everyone. I am in Minneapolis. We reached out to the Mayo clinic and unfortunately..." + (show)
@kdimmerman

Thank you everyone. I am in Minneapolis. We reached out to the Mayo clinic and unfortunately we couldn't get in for about 10 days - way to long to put off the surgery. We have learned in a short period of time that brain tumors are aggressive and grow very quickly. It appears I have had mine for a month and so they are pushing to get this taken out in the next few days. We so many people having cancer doctors are overwhelmed and it's almost impossible to get an appointment with someone who has the credentials that you really want to perform this type of major surgery. I don't want just anyone cracking my skull open but I might not have a choice at this point. It's the worst feeling.

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Did my reply get lost?

REPLY
Sandy Dominy | @sandydominy1 | Aug 10, 2016
In reply to @kdimmerman "Thank you everyone. I am in Minneapolis. We reached out to the Mayo clinic and unfortunately..." + (show)
@kdimmerman

Thank you everyone. I am in Minneapolis. We reached out to the Mayo clinic and unfortunately we couldn't get in for about 10 days - way to long to put off the surgery. We have learned in a short period of time that brain tumors are aggressive and grow very quickly. It appears I have had mine for a month and so they are pushing to get this taken out in the next few days. We so many people having cancer doctors are overwhelmed and it's almost impossible to get an appointment with someone who has the credentials that you really want to perform this type of major surgery. I don't want just anyone cracking my skull open but I might not have a choice at this point. It's the worst feeling.

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Did my reply get lost. I can't find it?<br><br>>

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 10, 2016
In reply to @kdimmerman "Thank you everyone. I am in Minneapolis. We reached out to the Mayo clinic and unfortunately..." + (show)
@kdimmerman

Thank you everyone. I am in Minneapolis. We reached out to the Mayo clinic and unfortunately we couldn't get in for about 10 days - way to long to put off the surgery. We have learned in a short period of time that brain tumors are aggressive and grow very quickly. It appears I have had mine for a month and so they are pushing to get this taken out in the next few days. We so many people having cancer doctors are overwhelmed and it's almost impossible to get an appointment with someone who has the credentials that you really want to perform this type of major surgery. I don't want just anyone cracking my skull open but I might not have a choice at this point. It's the worst feeling.

Jump to this post

Hi Sandy,
It would appear that your reply did get lost 🙁 Can you please send me a note how you tried to reply using this form? https://connect.mayoclinic.org/contact-a-community-moderator/ I'll look into the issue.
Sorry your reply was lost.

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