Watching a Meningioma Brain Tumor

Robin, very sorry to hear of your situation. In May 2018, at age 67, after having 3 seizures during the preceding 6 months, I was diagnosed with a 6 cm meningioma in my right forehead area. It was described as being the size of a tangerine! I was immediately referred to a neurosurgeon and not offered the “wait and see” option. I was very fortunate to not have had other symptoms, which I was told could be significant and some could be possibly be irreversible. Surgery was scheduled for and occurred in August 2018 at Oregon Health Sciences University (OHSU) in Portland, OR. While everyone is different, based on my experience, I would not dread the craniotomy surgery if I had to do it again. I had an excellent surgical team, an experienced neurosurgeon, and terrific post surgery care, things I would research a lot if I had to do it again. I should think that the Mayo Clinic would be a great choice, as was OHSU for me. Having the surgery was helpful to me to get that thing out of my head and not have to worry about it anymore, although unfortunately, a small part that was closely associated with my right optical nerve, was left in place so as to not compromise vision in that eye, a decision by the surgical team for which I am grateful. That has placed me into a “wait and see” situation to see if the remnant stars growing again. Successive MRI’s since surgery have shown it to be stable, which is great. My thought for you is, if the surgery becomes recommended, be strong, do your research in choosing your surgeon and hospital facility, and get it done. I understand the fears you face, as I faced them, too, but it could be worse by not doing anything when/if your doctors recommend removal. I wish you the very best.

he said we should do the radiation thing, it most likely will keep growing so wants to do this procedure, first another MRI, Ct scan then make a mask. Then do the radiation. My concern is this virus going around, one case at Duke. I called to see what I should do so am waiting for a return call. Scared out of my wits. Haven't left the house except for the docs and the cardiologist canceled my stress test.I feel paralyzed trying to make these appointments and stress is through the roof. I didn't pay much attention to the corona virus til I watched the news, I am 74, health problems and they say stay home.

How are you feeling lately @bobhills?

What happened with the oncologist, @sarasally2?

the ENT surgeon who works with the neurosurgeon refuses to operate, too many risks for me so I will see what the oncologist says tomorrow

Hello - sorry to hear about your situation. I had a benign meningioma successfully removed 2.5 yrs. ago. Before I decided to have the surgery , I interviewed 3 NS and checkked their medical reputation with the NS certifying association before I chose the NS who did the surgery. So do get another opinion

I didn't want to wait so I had surgery 4 years ago when I was 66yrs old. I had 2 tumors and 1 was 3 - 5 cm and the other smaller but in a very difficult area to remove. The one in the frontal area was 5 cm and removed, the one on my optic nerve is still there and will not ever be removed. I had proton radiation for 28 days in the hopes that it would stunt it from growing anymore. I had MRI's every 6 months until this January. Now they have not seen and change for 4 years and will only do MRI's once a year, unless I experiece and symtoms that would suggest need to check on the tumor. I was scared to death about surgery but I knew I would not be satisfied with myself living with all my symtoms for the rest of my life. They would keep me from doing all the things I enjoy for my life. The surgery was a partial success and I'm good with it. My symtoms are minnial. I still have headaches and recovery took longer than I was expecting, 2.5 months but I returned to all my activities. I run 3 miles several times a week, stair climber couple times a week and play golf 3 times a week. Yoga is a release once or twice a week. But the best part is I'm able to spend time with my grandkids and play golf with them and go to all the sporting activities. I can enjoy my family and appreciate the time I have with friends and family until something changes. Life is good and the risk of surgery was nothing to the reward of life I have received with its results. Mayo handles all of my medical because I am fortunate to live in AZ and we are only an hour away from the hospital. Dr Zimmerman is my surgeon and I have confidence in him and all the care givers at Mayo. I have used many of them over the last 17yrs. This isn't my only health issue but I was one of the biggest. As a team they are most knowledgable doctors and up to date treatments they are on the cutting edge. I can't thank enough. Good luck to you and I hope you feel comfortable with whatever you doctors tell you and you can make a decission you are comfortable with for your future.

@sarasally2, I can understand your apprehension if your doctors don't agree. Hopefully at Tuesday's consultation the team will have a united opinion and treatment recommendations. As for questions to ask, see these lists:
https://www.cancer.net/cancer-types/meningioma/questions-ask-health-care-team
https://braintumor.org/brain-tumor-information/before-surgery-questions/
https://www.mayoclinic.org/diseases-conditions/meningioma/diagnosis-treatment/drc-20355648 (scroll to the bottom of the page)

Have you considered getting a second opinion at another institution?

The tumor has doubled in size. Surgery is frightening but often the only real option. Mine was benign but large enough that I elected to have it removed even though I had no symptoms. Please find a good neurosurgeon that you can trust and get on with it. When you open your eyes you will be glad that you did.

I went to Duke in NC last year and they didn't agree on whether to do surgery or not so we did the wait and see thing as they thought it was not causing my symptoms, I just had another MRI and the tumor doubled in size. I go Tuesday to consult with the radiation oncologist and don't feel comfortable because they didn't agree last year and they don't agree this year. I have had surgeries,etc at Duke and was comfortable but this time I am afraid and distrustful. I am 74. Not sure what questions to even ask.