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Meningioma - I'm scared to watch and wait

Posted by @eleanor1931seminara1931, Apr 24, 2016

Have had a mri that revealed a large structure that is presumed to be a meninggioma associated with the right sphenoid wing.creating mass effect upon the right frontal lobe and mass effect and elevation of the right lateral ventricle by this process. Neurosurgeons have recommended that no effort be expendeded to remeadiate or remove it, nor do they recommend future mri’s to observe it’s very slow growth. What should I do? To do nothing, as they recommend, scares me. Having a tumor is frightening. Is there a role for future immumology? Help, please. Eleanor Seminara, 85 yrs old.

Liked by EES1, lindalb, lindymay

REPLY

Hi Eleanor,
I moved your message to the Brain Tumor group because I want to introduce you to @audrapopp @Jackiewizardof @eaglesview @ljsandlin.

I completely understand how difficult it must be to “do nothing”. In actual fact, your medical team is not inactive, but rather actively monitoring you. This is likely because the risk of treatment is more dangerous than the possible benefits. I prefer the term “active surveillance” rather than “no effort”.

Here’s how the National Cancer Institute defines active surveillance: “Closely watching a patient’s condition but not giving treatment unless symptoms appear or change. Watchful waiting is sometimes used in conditions that progress slowly. It is also used when the risks of treatment are greater than the possible benefits. During watchful waiting, patients may be given certain tests and exams. It is a type of expectant management.”

How often will you see your neurosurgeon for follow-up? Did they explain what you can expect?

Liked by lindalb, ladycat

@colleenyoung

Hi Eleanor,
I moved your message to the Brain Tumor group because I want to introduce you to @audrapopp @Jackiewizardof @eaglesview @ljsandlin.

I completely understand how difficult it must be to “do nothing”. In actual fact, your medical team is not inactive, but rather actively monitoring you. This is likely because the risk of treatment is more dangerous than the possible benefits. I prefer the term “active surveillance” rather than “no effort”.

Here’s how the National Cancer Institute defines active surveillance: “Closely watching a patient’s condition but not giving treatment unless symptoms appear or change. Watchful waiting is sometimes used in conditions that progress slowly. It is also used when the risks of treatment are greater than the possible benefits. During watchful waiting, patients may be given certain tests and exams. It is a type of expectant management.”

How often will you see your neurosurgeon for follow-up? Did they explain what you can expect?

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Colleen Young: Thank you for your response to my report, today, 04/24/16.
They did not explain what I could expect. No follow up appointment was made. I asked my primary care physician to examine the mri and for him to talk to the neurosurgines. He and I met after he talked to them and he assured me that the tumor, unidentified as a medical term specific, was a very slow growth and could be a problem if my speech became irregular. That is where we left it. I assumed that it might be dangerous to have another mri or to consider any action that would involve surgery/radiation. I looked into the internet and found, “Next generation immunotherapy offers new hope for beating brain cancer.” m.medicinpress.com: Science Translational Medicine, 02 March 2016. A little amaturish knowledge can be dangerous and far too early for application.
So I thought to use connect for information and comfort. Eleanor Seminara

Local neurosurgins have not done anything that would suggest they want to see me again. I was angry when the leading doctor shrugged his shoulders and voiced a trailing off comment that he might do somthing if I were 65. That’s why I went to my primary doctor to have him communicate with them. Doing nothing, feeling abbondanded, will not prevent me from exploring this problem, and looking for support from my family physician. I clinked on each of the contacts you cited in your initial response to my message of 04/24/16. Commentarys were kind but medically “over my head” and still left me frightened. Thanks for yor help Colleen Young.

Liked by lindalb, ladycat, EES1

I wish I could sit down and have a cup of tea with Eleanor and we could walk through all of this together. It’s horrible to feel frightened and abandoned. But I sure like your attitude of not letting your fear stop you from figuring things out and exploring all your options. Have you considered getting a second opinion?

Liked by lindalb, ladycat

Meningioma Mommas, a support group on Facebook, is an excellent place to gain info and to make connections with hundreds of others like us! They are just regular people who either have been through it or are still going through it. They literally saved my life 5 years ago. They will give opinions but also share great resources. It is a place for you to share your true feelings and thoughts to people who truly understand what it means to have a brain tumor. The lived experience!! You won’t be disappointed!

Meningioma Momma’s IS a wonderful group to join. I was diagnosed 10 years ago with my first one in my left frontal lobe , and the Mayo team has “watchfully waited” for all those years with barely any growth. This year they found a second one in a different area, so we will just watch the pair now. I am SO SO grateful to have such a wonderful team of Docs at Mayo that did not take advantage of the fear factor of original diagnosis to push me into a surgery that could be very dangerous when it was not yet needed. There may be a time when the growth would require surgery, but until then follow their directions and ENJOY every day you have with a new renewed gratefulness for being in the group that has the OPTION to watchfully wait….many do not.

Welcome @lindajean. I am so grateful that you shared your experience with “watchful waiting” here on Connect. It can be very scary to accept watchful waiting as a treatment option because people feel they and/or the medical team are not “doing” enough. But in some cases “doing” something can do more harm than help. Watchful waiting is not inactive. One is monitored closely. Kudos to you for finding the supports to allow yourself to enjoy every day. So glad to have you on Connect.

Liked by ladycat

I have a large supposedly benign meningioma that is frontal lobe size betwwen golf ball and tennis ball 2mm away from eyesight Olfactory groove they think. Since i have no sense of smell. It was found by accident when out of i had a major seizure 2years ago. I know how it feels to watch and wait. I have major anxiety about it and have been verydepressd over this time. Just had my latest mri and it has grown a little 2-3 mm. Since last year. My neurosurgeon has now said i should have surgery. I am glad to see i can get a copy of my mri and send to mayo clini with $100.00 to make sure i am getting the best doctor, hospital for this large tumor he now says that he might not be able to take all of it, yet has to come out since it is now growing…Feeling better I guess since im not going to watch and wait,,,,, Yet, very nervous aboht btain surgery and sure my insurance doesnt cover any other hospitals..Probably.

Liked by ladycat

Welcome @55soon. I can understand your being nervous! I’d like to introduce you to Connect member @user_che69bc66 who also posted for the first time on Connect today. @user_che69bc66 just returned from Mayo Clinic earlier this month after having 3 surgeries. @user_che69bc66 can you share with @55soon your experience?

@55soon, did you call Mayo Clinic yet? 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.

Liked by lindalb, ladycat

@colleenyoung

Welcome @55soon. I can understand your being nervous! I’d like to introduce you to Connect member @user_che69bc66 who also posted for the first time on Connect today. @user_che69bc66 just returned from Mayo Clinic earlier this month after having 3 surgeries. @user_che69bc66 can you share with @55soon your experience?

@55soon, did you call Mayo Clinic yet? 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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Thank you , that is nice to know and i will follow up with them and see if the experts there can check out my mri and recommended craniotomy…

thanks for the referral to meningioma mommas — definitely will check it out — in 2009 I was diagnosed with a benign meningioma so small that most MRI radiologists and some neurosurgeons cannot find it — even with contrast — however, the first lab report was off by a factor of 100 — and I thought it was wrong because wouldn’t I know if I had a golfball sized tumor? Now, I know that it is very possible that even a golfball sized tumor could go unnoticed for decades. My tumor was discovered by accident, and since then I have undergone annual MRIs w and w/o contrast to ensure that it is not growing. Yes, it could be removed, but why surgery when life can go on unchanged without it. Now my neurosurgeon suggests that I have an MRI only once every other year because MRI’s are not all good for you, and could be harmful. I countered with a compromised and said how about one without dye every year, and one with dye every two years? The only symptom I MAY have hade was a few seconds of double vision in an eye that is not my best one, and has other reasons for not behaving well.

Thoughts?

Liked by ladycat

@rareeby

thanks for the referral to meningioma mommas — definitely will check it out — in 2009 I was diagnosed with a benign meningioma so small that most MRI radiologists and some neurosurgeons cannot find it — even with contrast — however, the first lab report was off by a factor of 100 — and I thought it was wrong because wouldn’t I know if I had a golfball sized tumor? Now, I know that it is very possible that even a golfball sized tumor could go unnoticed for decades. My tumor was discovered by accident, and since then I have undergone annual MRIs w and w/o contrast to ensure that it is not growing. Yes, it could be removed, but why surgery when life can go on unchanged without it. Now my neurosurgeon suggests that I have an MRI only once every other year because MRI’s are not all good for you, and could be harmful. I countered with a compromised and said how about one without dye every year, and one with dye every two years? The only symptom I MAY have hade was a few seconds of double vision in an eye that is not my best one, and has other reasons for not behaving well.

Thoughts?

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This is my 2nd year of knowing that this exists and is growing slowly. Found out about it by accident. The docs don’t want to have anything done to this tumor that sits between my brain and my skull. Also they don’t want me to have any MRIs. The #1 doc doesn’t want to see me again and the #2 doc wants me to contact him if and when I have any of the symptoms such as the eye problem you were told about. I’ll keep looking for info that suggests new treatment. Thanks for your contact.

Liked by ladycat

I was diagnosed almost 2 years ago,,I was having some problems with dizziness and nausea for over a year,,knew there was a cyst on my brain from a previous full body scan so after so many tests my new doctor decided to have me get an MRI w contrast to recheck the cyst ,,that’s when they found the meningioma ,,the neurosurgeon I was sent to said I can’t have surgery because of the location,,,I’m feeling extremely frustrated because I have lost a lot of my sense of smell, hearing loss, my left hand is weak and constant tingling in my fingers,,foggy head,,memory not so good,,,am I going crazy or are these symptoms of the tumor?

Liked by ladycat

@debb2010

I was diagnosed almost 2 years ago,,I was having some problems with dizziness and nausea for over a year,,knew there was a cyst on my brain from a previous full body scan so after so many tests my new doctor decided to have me get an MRI w contrast to recheck the cyst ,,that’s when they found the meningioma ,,the neurosurgeon I was sent to said I can’t have surgery because of the location,,,I’m feeling extremely frustrated because I have lost a lot of my sense of smell, hearing loss, my left hand is weak and constant tingling in my fingers,,foggy head,,memory not so good,,,am I going crazy or are these symptoms of the tumor?

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Welcome to Connect Debbie,
I’m so glad that you found this discussion with @eleanor1931seminara1931 @lindajean @55soon @rareeby and @cynaburst who can relate to your experience.
I suspect you are not going crazy. Have you talked to the neurosurgeon about these symptoms and their relationship to the tumor?

Liked by ladycat

@debb2010

I was diagnosed almost 2 years ago,,I was having some problems with dizziness and nausea for over a year,,knew there was a cyst on my brain from a previous full body scan so after so many tests my new doctor decided to have me get an MRI w contrast to recheck the cyst ,,that’s when they found the meningioma ,,the neurosurgeon I was sent to said I can’t have surgery because of the location,,,I’m feeling extremely frustrated because I have lost a lot of my sense of smell, hearing loss, my left hand is weak and constant tingling in my fingers,,foggy head,,memory not so good,,,am I going crazy or are these symptoms of the tumor?

Jump to this post

Hi Colleen,,thanks for responding,,when I mention any symptoms to my neurosurgeon and neurologist they pretty much just ignore me,,,I will be going in for another MRI with contrast in the next few months so will be interesting to see if there has been any change,,,

Liked by ladycat

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