New diagnosis for Badluck!

Badluck, your neurologist was so very wrong. I can't believe those words even came out of that medically-trained mouth. I'd find a new doc and fire this one, if he thinks all benign tumors are cancerous. Here's a link explaining what a benign tumor is, and it isn't cancerous. From the Cedars-Sinai Hospital doctor interviewed on the site: "Like all tumors, a benign tumor is a mass of abnormal cells. But unlike malignant (cancerous) tumors, they can't move into neighboring tissue or spread to other parts of the body."

https://blog.cedars-sinai.edu/diagnosed-with-benign-tumor/

https://www.cancer.gov/publications/dictionaries/cancer-terms/def/benign-tumor

my friend had one. She had vision changes and her eye doctor made the diagnosis. She went to a neurosurgeon at New York University Langone Hospital and had it removed. That was 10 years ago and she is doing well. It is true that in many cases, they do not operate. In some cases they do. Depending on the location and the progression, doctors will operate. That said, i would get another opinion, preferably at a Brain Cancer Center. Don’t be frightened by the title. That’s where many of the brain surgeons are located, whether you have cancer or not. And your doctor who said all tumors are cancer is wrong. What differentiates benign tumors from cancerous tumors is the ability to metastasize. That said, benign tumors can be serious. They can encroach on vital organs or cause symptoms.

Last year, I had a 5 cm benign myxoma tumor on my upper thigh that was surgically removed. An oncology orthopedist did the procedure. I never knew there were oncology orthopedists until I needed one! And I didn’t even have cancer. It was found incidentally while having an MRI for my opposite leg! Fast forward a year, I now have matching incisions on both legs. One from the removal of the myxoma tumor and one from my hip replacement. In a few weeks, I am going to have another benign tumor removed from my back. I have a lipoma tumor sticking out of my back and it is annoying me! Just when I can finally sit down, I can’t sit back because the lipoma is digging into me!

Bad luck? Nah! Just a nuisance! Good luck! Keep us posted

I echo the others to get multiple opinions. Ask not only what they recommend, but why they recommend it. I would go to a major medical center and research the doctors beforehand. Sorry you're dealing with this, but kudos for standing up to the doc who wanted to blow it off. You knew your body and pursued answers.

Badluck, you asked: "So what kind of visual disturbances should I look for & what kind did your sister have? How many years did your sister & friend live with their tumors before they had anything done? Did your sister have any problems having all that radiation?"

If you haven't noticed anything significantly different in your vision, your particular meningioma probably isn't affecting the optic nerve. An MRI should show the location of the meningioma relative to the optic nerve. My sister had no long-term side effects from the radiation. I don't recall the exact timing of her treatment relative to the radiation treatments. our other sister lives near a Mayo Clinic so there were a number of logistical issues to address so it certainly wasn't the next week. My friend had surgery quite quickly. Remember that she had a seizure so there was a greater sense of urgency. Further, she lives in a major metropolitan area with access to top specialists without having to travel.

Although it is possible that the tumor is related to your facial spasms, the timing could be coincidental. When I was in my 20s, I suddenly had facial paralysis and numbness on one side. I couldn't purse my lips to spit out toothpaste or drink from a straw and my smile was crooked. I went to the ER and was diagnosed with Bell's Palsy, a condition affecting facial nerves. My problem resolved on its own, but I subsequently met a woman whose surgeon accidentally damaged her nerve during oral surgery and her paralysis was, sadly, permanent. I'd had no dental work so no idea what caused my Bell's Palsy. I share this story just to show that weird facial symptoms can emerge that are unrelated to tumors. I hope you can find a cause that can be corrected.

Lyn

BadLuck , Do you have someone that goes to your medical appointments with you or do you go alone. I would suggest you have someone attend these important appointments with you. They can be a second set of eyes, ears and take notes for you. When you are the patient and physically and emotionally involved it is often hard to keep everything the doctor does and doesn't say straight.