Meningioma - I'm scared to watch and wait

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 lindymay, lindalb, EES1

Have you looked into Proton Beam Radiation Treatment – My meningioma was 5 years ago, up against the brain stem. Proton Beam has has an amazing Bragg-Peak phenomenon that prevent radiation from traveling beyond the tumor. Do some study on this.

Liked by Jamie Olson, ladycat

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@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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See reply from fiddle mama. I was also told that surgery was not an option. Proton Beam was a miracle answer for me.

Liked by ladycat

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Thank you for this info. My meningioma is size of 1/2 of a peanut. Right falx area. Was told inoperable 5 yrs ago when diagnosed. Was offered gamma knife if ever necessary. So far they tell me it’s calcified and no change per MRI of 1-2016
I am very grateful to know of this if I should ever need further treatment other than “watch & wait” which is never easy. Thank you again. Take care, as they say, we’re all in this together!

Liked by Jamie Olson, EES1, mpe47

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Eleanor, don’t feel that you are alone. I am also a senior and was recently diagnosed with a Meningioma in the right frontal lobe. First MRI revealed a small 5 cm tumor. I have been told to” watch and wait “and am not satisfied with that answer. I am a retired veteran and will see a Neurologist at the VA next week. Depending upon what I am told, I will go from there. I am also a retired medical professional. Yet, this diagnosis is frightening to me as well. Hang in there and we will get through this together.

Liked by Jamie Olson, EES1

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Welcome to Mayo Clinic Connect, @mpe47.

Watching and waiting would be tough to experience. I hope this following information helps some while you are waiting. I found it on a blog post and thought it was good advice.

You may want to consider these active steps if you are in a watch and wait situation:
Be physically active — get in aerobic exercise at least 3 days each week
Eat healthy foods — leafy greens, fish, lean meats, fruits and vegetables
Reduce stress levels — incorporate yoga or meditation
Be aware of any changes in your body — report any new symptoms to your doctor
Get your blood tests and scans on schedule — outline your monitoring plan together with your doctor
Understand next steps if active treatment is necessary — being well informed will help with your sense of control over the situation
Watchful waiting should be considered an active strategy, as close monitoring can give you reassurance that your cancer is stable, and not aggressively growing. If a cancer is found to be progressing during the monitoring stage — then additional treatment strategies can be started.

@mpe47, keep us updated with what your Neurologist has to say. I’ve got fingers crossed for you and I’m sending well wishes your way!

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@ladycat

Thank you for this info. My meningioma is size of 1/2 of a peanut. Right falx area. Was told inoperable 5 yrs ago when diagnosed. Was offered gamma knife if ever necessary. So far they tell me it’s calcified and no change per MRI of 1-2016
I am very grateful to know of this if I should ever need further treatment other than “watch & wait” which is never easy. Thank you again. Take care, as they say, we’re all in this together!

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Thank you for that information. I have been talking to others locally, who have had gamma knife surgery.

Thank you. I have spoken to others who have had gamma knife surgery and radiation later. Their followup MRI was very good, with very little of the tumor left. I am sure that is the route I will take, when the time comes..

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Dear Eleanor,
It’s amazing that my name is the same as yours, and I am also a senior, age 86 (87 in January). My reactions on hearing my Meningioma was not curable at my age was somewhat unsettling…..I refused an MRI because this new growth was discovered by a CAT scan at a time when I felt only a bit dizzy. What the CAT scan reminded me of was a similar fearful event 15 years ago when I came down with Diverticulosis and had to be CAT scanned. The scan at that time seemed to identify lots of scary small stuff plus a lump on my kidney, and I was hustled off to see if was Cancerous. The cancer physician wanted me to have another scan within three months to see if it was growing. I was ready to agree, but just had gone thru radiation for a tooth removal, a toe crack, and breast exam. Frankly I thought that was a lot of radiation. So I sat down and wrote a letter to the doctor, telling him about all this radiation, and asked if it wouldn’t be better to simply wait a year. In addition, I told him about that CAT scan I had for my kidney 15 years ago (and was lucky enough to dig in my old health file and find a report). I enclosed a copy of the old scan report and asked if it could be compared with the current CAT scan……had my kidney lump shown any growth? And whether we could again discuss the whole business. We met and I was pleased to discover that the growth on my kidney had not changed at all. In addition the physician looked me in the eye and agreed that I had radiation enough and dismissed my case as closed. (I forgot to ever have it Cat Scanned again) and I went on with my life. That was fifty years ago.

This early episode in my life has stuck with me, and now at the age of 86 I feel that going thru additional CATscans or MRI procedures is a waste of time. Why burden my brain and body with further scanning when none of it can lead to a cure? I feel fortunate to have lived until the age of 86, and now am determined to go forward with whatever I have left in this life, keeping my mind on eating right, reducing stress, and light exercise with my eye on what good may lie ahead. I wish you and all the rest of us the power and the courage to live longer and better.

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@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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Debb hope you do not mind me asking but have you had any other non related issues like say infertility, ovarian cysts, fibroids, or breast tumors?

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@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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I am concerned that the doctors are ignoring your symptoms. I am loosing vision in my left eye too. Having horrible migraines and this just started recently, but just like you my doctors do not seem concerned. Or maybe they just know the risk might out weigh the reward

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You can tell when something is wrong with your body. It can be frustrating when you give a symptom and it is not acknowledged

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@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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Lady cat you are not crazy.

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