History: wife had breast cancer removed 2 years ago, battle with estrogen suppression and various other protocols that didn’t go great.

We met with the NS yesterday. His opinion is it is too close to brain stem and heavily intertwined with VI nerve to proceed to surgery. He also doesn’t think it has grown enough to be a priority. Suspects is has been there for years (we only have MRIs from May and August). Mentioned we ultimately may opt for radiosurgery, but that’s kind of a one time gig usually reserved for post surgery and anything that couldn’t be removed surgically.

Not that we “wanted” surgery, but we were hoping for a correction/action of some kind other than “wait and see”. We are still also working on her sleep apnea, which he also agreed is a priority.

Just sounding it out and seeing if others have had similar diagnosis and if ultimately they went ahead with surgery and their outcome. Thanks in advance

Should I be concerned? I had my meningioma removed over 3 weeks ago. It was on the left posterior fossa. Yesterday I started having a headache on the whole left side of my head. It’s not severe but it’s annoying and Tylenol/motrin aren’t touching it. I still have it today and I’m starting to get freaked out. I was feeling totally fine and almost back to normal before this. Anyone else experience this?

Dad, 54M (always been super healthy, eats right, and has been working out regularly for 30 years), has a benign 4 cm meningioma pituitary gland tumor. We found this out the day he was taken to the hospital via ambulance for heatstroke (25th July). Got an MRI a few days ago and this was the report/impression: "MRI brain with contrast study reveals a mixed solid cystic suprasellar mass lesion measuring 4. 4x4.2 x3.7 cm showing intense homogeneous contrast enhancement of the solid component, which is mostly on the medial aspect. The lesion is seen widening and splaying of the arteries of the circle of Willis, with indentation and widening of the cerebral peduncles. The lesion is abutting the inferior frontal and temporal lobes. The optic chiasm is not separately seen. The mass is compressing the hypothalamus. The mass lesion is abutting the right ICA medially and posteriorly right PCA. Mass is causing compression on the anterior third of the third ventricle. The third and lateral ventricles are mildly dilated.DDx:1. Craniopharyngioma2. Meningioma."

His symptoms are headaches, loss of vision (2 months prior to tumor finding, optometrist diagnosed him with Glaucoma), nausea, balance issues, fatigue (he lays in bed all day), mild confusion due to memory issues, no appetite, and memory issues (he remembers everything before his heatstroke but new info is hard for him to remember, and he often asks the same questions repeatedly), mood swings dont seem to be present and hes pretty strong as hes been working out all his life but lost 66 pounds beginning in around March to to lack of appetite. For hormone issues, it's low testosterone (a personal trainer had him getting shots every week for around 2 months, and we think that messed my dad up), some other hormones are low as well, but prolactin is around 1516. I must also mention around 3-5 other family members have had brain tumors at around the age of 50.

We reside in the UAE but have American Citizenship and are trying to get an appointment at the Cleveland Abu Dhabi.

My question is, should I be super worried, or is this curable? I'm a naturally anxious person, and this has wrecked me. I can't lose my dad; he means everything to me, and there's no way I could possibly go on without him. We went to a hospital, and the neurosurgeon (top 3 in the country) told my dad he had 10 days to live and wanted to admit him on the spot. That freaked us all out so much, until my aunt (she is a doctor in the US and examines tumors, so I guess she does biopsy examinations, but I don't know for sure) consulted a radiologist, and she and the radiologist say the doctor was exaggerating and advised we set up a treatment plan for him.

Please share your advice, and if anyone has gone through something similar, what treatment did you get, and how are you doing now? Anything helps and is greatly appreciated.

hi! i have what is believed to be a grade 2 low grade glioma that is mostly in my right temporal lobe that extends into my right frontal lobe. it was discovered bc i was having nocturnal grand mal seizures. my biopsy in february failed so i am still in the process of figuring out the next best move.

however for the past 30 days my seizures have shifted in nature: i am suddenly getting focal and absentee seizures. i had SIX in the month of august and my keppa was increased (1000mg 2x/day) and they finally referred me out to an epileptologist who i am seeing this week. i do also have rescue ativan.

but this morning i had another absentee seizure but this time with LAUGHTER! i reported it for my file and i am now down the google rabbit hole and it is a known seizure type but it seems like it might be for a different tumor type? i am so curious if anyone else who experiences tumor-induced epilepsy has experience a variety of seizure types and what you may have learned about your tumor as a result?

(i did just get expanded healthcare coverage to be seen at my local, very big, teaching hopsital)

Hi all! I’m prepping for my surgery early October. I have a back tooth that will eventually need a crown and I’m going to see my dentist to get it checked again hopefully next week. My gum is a little sore so I’m thinking about it. It could be totally unrelated. If the crown is necessary, can I get dental work like this done before my craniotomy or do I wait until after? I’ll ask my doc too! Thank you!!

I have an anterior clindoid meningioma with bone involvement, my carotid is also partially encased. The meningioma itself is tiny, only 7mm but already compessing optic nerve so surgery has to happen ASAP. I'm early 40s and otherwise healthy besides being a bit overweight. What can I expect with both the hospitalization and my recovery at home?

Also for those of you with kids, on what day did they see you post op? My daughters are 7 and 13 and are Velcro kids - they have never been away from me longer than one night so this is going to be hard on them.

My 64 year old mother has a growing (benign?) brain tumour. She's big! Getting it removed in the next month or so, and just curious on others opinions on size and location and whatnot, as well as what to expect from surgery and recovery. Seen some people have it effect them after, and others not.

My wife looked at me, said something is wrong, collapsed, no shaking. Stopped breathing was resuscitated ambulance and MRI. 3.5 cm right hem along motor strip.

Spoke with 3 EU hospitals in person, same opinion 60%’ish resection potentially and she will have a left side deficit- guaranteed arm hand and leg. we were told if we opted aggressive it would be paralysis. My hospital locally told us not to operate, quality of life is more important. We have a 6month old.

We pushed by email and a nuero in Germany responded. They replied the risk to be aggressive was acceptable, they expected a close to full resection. They told me she would walk but with ataxcia and over time left arm and hand should recover.

Young and by far the sharpest surgeon we had spoken to. We didn’t even need half an hour by video, we were kicking each other under the table. This is the guy. We slept on it. Resection in 3 weeks- Germany.

Skipping ahead, potential GTR, at least 90%+ was done. with scarring they can’t confirm but 3months post op no visible tumour. My wife walks normally. Her left arm did not move whatsoever for some weeks after. Week by week became stronger and now is fully functional. There’s a slight hand and finger deficit, knife and fork for example is chucked across table :-)

Moving on, 5days post op day of release neuro gave us a printed pathology report for Oglio stage 2 with 1p/19q. Mentioned we have a fight but would live a fullish life.. decades.

2months later, my wife opens letterbox to final Pathology report astrocytoma 2 with 1p/19q codeltion. Doesn’t make sense as if u have 1p/19q it’s Oglio.

By email it was confirmed back the 3rd pathology report signed by head of hospital was incorrect. confirmed now Astro 2 with Idh. Was a copy paste mistake.

Should I have the tumour checked by another hospital? Their molecular in the end showed no 1p/19q.

Has anyone had a second opinion on pathology and actually seen a change?

This hospital saved my wife’s life and gave us years we would not have. I would be sending them a signed letter to release the sample to another hospital..given what they did for us we are weighing up if this is the right thing to do?

Feel better after writing that, any opinions welcome.

Hello. A small meningioma (sphenoid) was found incidentally on an MRI last summer. I had it rescanned a couple of weeks ago and it's grown quite a bit more than the neurosurgeon anticipated. He said I should have it taken care of, either surgery or radiosurgery. It's not that big now but at the rate it's growing he feels it will be easier to deal with now rather than later (I'm in my 40s).

He feels because it's small and really accessible surgery would be his recommendation but that radiation would also be an ok option to pursue. So I'm not really sure how to proceed. I haven't spoken to a radiation specialist yet. He's not sure that they would recommend it anyway.

I'm a little nervous about surgery and taking off that length of time from work would be difficult (he said 2-6 weeks but the nature of my job really means I have to decide ahead of time how much time it would be). But I also want to do what's best and not just jump to radiation for those reasons alone. Anyone been in this position or have any advice? I don't have anxiety about the tumor itself - I just want to get this taken care of.

Thanks and wishing everyone good health.

Girl got brain cancer. Incurable. Enough said.

No health insurance.

Does a tumor resection surgery affect the menstrual cycle? It's been almost 2 months since I had my tumor removed in early July. I had a period pretty much on time in late July but nothing since then. I'm usually very regular, and 100% sure I'm not pregnant. The tumor was in the cerebellum, the occipital lobe, and the venous sinus, which have nothing to do with controlling hormones. I'm still taking pain killers and also sleeping pills at night. I was on steroids only for 2 days after the surgery.

In the previous thread, one lady mentioned her cycle was messed up after the surgery, so I thought perhaps it's common enough? I Googled but the results were mostly about breast cancer. Yes, I could ask my surgeon, but I had a surgery overseas, and they don't seem to have much post-op info. I have good-sized fibroids in the uterus and I wonder if I should go see an OBGYN soon. My next OBGYN appt is in Nov, so I prefer not to go till then since I have shitty insurance. Thanks in advance!

Hi everyone. Long message here! I also wanted to start off by saying I live on the West Coast and have met with about eight neurosurgeons now, including Friedman at Duke - he told me it was absolutely unnecessary to travel that far for my surgery.

I am in my final stages of planning surgery. I have a frontal lobe convexity meningioma near my sagittal sinus that is quite small and asymptotic. We found it incidentally. Watch and wait is over due to the proximity to the other veins. I’m torn between surgeons. I was considering UCSF, but I’m leaning more towards Stanford and City of Hope. The Stanford surgeon is Dr. Fernandez-Miranda and City of Hope is Dr. Benham Badie. Both have similar surgical approaches in the sense they think this is easy and I should be able to move on with my life afterward. I have heard Dr. Fernandez Miranda typically only takes difficult cases, but he is willing to take me as a patient. I was nervous that he would let one of his fellows do the surgery, and so I asked. He says he will do the surgery himself with fellows assisting, but there is still a part of me that gets slightly worried about that since mine is “easy.” I know some people have had fellows do their surgery instead of the main surgeon and had negative results. Since it is a training institution, my guess is I’ll sign an informed consent that says I’m OK with that. I don’t know, but just guessing. Also, I would not go into the ICU, and I would spend one to two nights in the hospital and go home. He anticipates no complications. I think it’s a step down hospital room where people check on you every hour. He uses staples, so I would travel back to Stanford after two weeks to have those removed. He also does not believe I need steroids or Keppra, but said I could advocate for them if I wanted. He has so much confidence.

City of Hope is similar in the location of the incision and ability for a full resection. Dr. Badie wants me on steroids for a couple of days and to use Keppra if I can tolerate it for about a month. I like that idea. He said I would spend the first night in the ICU and then a couple of nights in the hospital. He wants me to stay in the area for a few days. Dr. Badie is chief of neurosurgery there, and he removes lots of brain tumors, including meningiomas. He uses sutures, so I would not have to go back unless complications arose. He is also very confident and said this is an opportunity to cure me. I also think it’s important to add that he goes into great detail about the surgery and backup plans in case anything go wrong and that possibly has reassured me but also doesn’t mean every surgeon has these same things in mind but doesn’t share them.

I think I’m torn with these two doctors and two different approaches. Although similar, I sometimes feel drawn to Stanford and then I wonder if my case will be taken as seriously as others. I know how much Dr Badie cares about me, so I have no doubt that he will take this seriously and his fellow will assist. But, I would think they all care about their patients and just have different personalities and ways of showing that. Both doctors seem extremely confident and competent. I would appreciate any thoughts or suggestions from those of you that have been through this or have experience with either of the doctors. Also, please feel free to send me questions. I’ve received so much information that it’s overwhelming. I’ve also met with UCSF, but I’m not sure it’s right for me. Dr. Morshed got assigned to my case, and I’d like someone with a bit more experience. If you’ve made it this far… I’m amazed! Thank you so much!

about 2 years ago i (M 50s) had a massive tumor removed in which they removed my entire right frontal lobe with A gamma knife. I was told it was 99.9% Cancer and it ended up being something else. 2 years later I'm partially blind and sill a giant mess but I'm alive. After it was over I asked the neurosurgeon how big it was and he said about the size of a woman's fist.

Please be patient i have a real hard time reading and typing but I love sharing my story and i use text to speak a lot so this is gonna be messy to say the least,. Feel free to ask me anything and stuff.

I'm going for a brain tumor removal surgery in two days, will it cause any visual feild defect

My mom has a malignant meningioma. It’s in her temporal lobe you can actually see it because it’s growing outward. This thing has grown despite a full resection, radiation, avastin, etc. super aggressive. Anyway we have been limping along until this last week when she was sleeping a lot which has been increasing over time. But then she started vomiting which was new and a fall which landed us in the ER where we found out she was in sepsis shock from a UTI and all her vitals were bad. Strong antibiotics later her infection cleared and vitals got back to normal. She was discharged. Slept like 23.5/24 hours a day and had the visiting nurse say this wasn’t normal despite it being the condition she was discharged in and told us to consider hospice. We called her care team to get the referral and they said to hold off and come to their main campus to get the work up. Long story short they gave her a higher dose of steroids bringing her to 4 mg instead of 1 mg but still her tumor grew and actually grew to the area of the brain that produces these stress hormones which is why the steroids are no necessary. Anyway they agreed hospice was still the right step. Now she is home and doing better. She is more aware and awake and vitals are still good. I’m just now reeling from this hellish 10 days of your mom is dying, you need to consider DNR, hospice, maybe not hospice, back to hospice, getting better on steroids and I’m supposed to be a functioning human on top of that and I’m confused and tired and not sure where we are. Hospice was here and they just wanted to drug her up and I’m not sure that’s the right step. I’m so confused and heartbroken for this amazing woman and it’s only me and my sister and we have to figure all this out and drs are saying 2-4 weeks but seeing her after the steroids I’m like she has been surviving the last 3-6 months like this. I’m having a tough time having this all make sense. Has anyone had the same happen where they were in that 2-4 week timeline but responded well to steroids and beat that or was it just a band aid?

I don’t have much energy to go into too much context or info - but from this photo alone (I know it’s unlikely to know but my head is spinning) do we think we can sort of determine what kind of tumor this is?

My dad is 54, has been experiencing headaches in the morning for about two months. Yesterday had migraine x100 and was vomiting from the pain. Admitted to ER and found the tumor. Ambulance ride to OHSU.

Mentions slight memory loss or confusion the last few days. Slight weakness in left arm and some facial drooping in right. Nurses think he is having silent seizures. Having conversations with him today, speech is slightly slurred and has a hard time finding words. Also have noticed memory loss in things I’ve told him which he’s forgotten hours later.

Is on steroids, ibuprofen, Zofran, and anti seizure meds.

Tumor is 6.5 cm by 5 cm on rightish frontal lobe. Is herniated. Lots of swelling.

He’s getting a second MRI this evening at OHSU for better imaging. I’m so scared.

I’m a 46 y/o dad of two and a husband. I was diagnosed with glioblastoma IDH wild type unmethylated in March and resected 100%. I had my first post SoC MRI in July. I had my second one today…and there may be recurrence. Fuck. I’m young and healthy. I go to one of the best hospitals on earth. How the heck can this happen?

I went through the SoC radiation and chemo through June. I was prescribed 60mg of Prozac and 500 mg of keppra. I also adhered to a pretty strict ketogenic diet and was on an experimental liposomal curcumin infusion. Mid September would have been 6 months since my resection. I was going to celebrate. Now I may be in recurrence. I’ll caveat this by saying my oncologist said there is a chance it’s just some scar tissue…but I don’t get the vibe she believes that. We pulled me off the experimental trial so I could start clearing up to potentially get on a different one. My oncologist is going to get some other opinions and may run some tests to see if it is back, but I’m clueless for the next 5 days.

My wife was with me so she knows. I’ve texted my parents and brother. What the hell am I gonna tell my kids? One is 15 (m), one is 11 (f), and I don’t know how to tell them the cancer is back already (if it is). This is just a massive kick in the junk if it’s back, and I needed to vent. I’ve advocated on this subreddit for strength and positivity to many of you, but right now I am struggling for myself to hold on. Fuck this fucking cancer. I’d die happily if my death meant no one else ever had to get fucking glioblastoma. Sorry for the rant.

Let's not forget where we started and how far we've come! ☺️🙏☺️ I hope everyone's recovery was a success!

My surgery is October 6th to remove my meningioma. I got a couple questions for those who have already gone through the surgery and what your recovery is/was like.

1. Did you bring anything that helped (i.e. clothing - certain pillows) when it comes to comfort?

2. How long were you in ICU? When did they have you start walking the halls to encourage healing?

3. My doc told me to expect to be down for at least 6-7 weeks. Is that realistic timeframe or would it be longer?

4. What kind of things would I be experiencing while recovering? Dizziness? Memory fog? Not being able to walk or talk?

A close friend of mine has been living with a brain tumor and his surgery was finally this week.

How do I be there for him during this time? What to say, or what to do when he returns from the hospital?

He likes his privacy and space as he doesn’t want to be viewed as a “soft” man — but I would never see him in that way. He knows he can be vulnerable with me because I respect him as a person & always try to understand his feelings. But I’ve never been through anything like what he’s going through right now. I want to be the best possible friend as I know he’s recently had other major life events that distanced him from his family too..

Hi everyone,

Recently diagnosed with a small Frontal Parietal Tumor.

The bad news is it is sitting next to the Vascular Area that is responsible partly for blood to and from the brain.

So Neurosurgeon said the it needs to come out.

I would be in ICU for 24hrs then on a floor for 2 to 3 days.

What is ICU experience like? What is recovery like?

My Tumor is on the Meningues(if I spelled that right) kinda scared

My doc and I agreed on October 6 and I’m so excited! My MRI shows the skull has thickened all around the meningioma area. They will shave/reduce the thickened bone until they are sure there’s no residual tumor cell activity. My doc is the best, patiently explaining what I see, and giving me answers to all of my questions. Let’s do this!!