I had a stage 4 brain tumor, AMA.

Hey, just a word of caution. Be careful with your personal information. your proof picture includes your first name, date of birth, treating hospital, and medical record number. You may want to censor it further

EDIT: there you go, OP. Carry on.

Updated. Thank you!

How many surgeries did you go through?

What sorts of thoughts or fears went through your head when you heard about the tumour?

Also, did you keep the tumour?

Good to hear you're still kicking!

Edit: spelling it tumour because I'm Australian. We like our u's chilling after the o

Edit 2: re-wording

I went through two surgeries, the first one was to seal off the tumor so that I wouldn't bleed out during the surgery. The second one was the removal of the JNA.

I was more worried for my family than myself because they were making it a bigger deal than I was. I couldn't quite comprehend the severity of the situation I guess.

Unfortunately they wouldn't let me :( but I did name it Marla.

Thanks so much!

Hehehe, Marla the tumour, I like that!

Fair enough, I would bet being that young when diagnosed would cause that lack of comprehension. Has there been any side effects at all since the the removal?

Oh Marla.

I have numbness on the roof of my mouth, numbness on the right side of my upper lip, and occasionally I have some renk shit come out of my nose.

"Marla, the little scratch on the roof of your mouth that would heal if only you would stop tonguing it, but you can't".

The very one.

That's unlucky... although, considering the alternative, not too bad. Unfortunately you'll never again feel the pain of the 'roof of the mouth pizza burn' though :P

Hot pizza, is the best pizza.

Could you describe the shit that occasionally comes out of your nose.

There was no non-creepy way to ask that question. I tried.

Hahahah no worries. It kinda looked like this , that , and the other at least three times a week.

i'm a bit jealous. does it hurt?

Nope. Just stinks. Doesn't happen as often anymore thankfully.

Do you get that checked out on the regular? If there's low level infection then things could get very nasty very quickly if your immune system is ever struggling. That'd suck.

No, but I keep my nose pristine. Generally using this awful invention

Dear sweet jesus what IS that? Leftover tumor bits?

Hahah scabs general mucus bloody disgustingness. Probably some left over tumor and gauze. Who knows.

Seriously, if that was coming out of my nose I would probably faint.

I puked a couple of times because the taste. sometimes they would fall in the back of my throat and I had to swallow them cause I would start choking. If I were to try and spit em out I would taste them and just pukes

I had jaw surgery at the beginning of this year and I didn't connect that my disgusting bogies might be related to surgery. I've also got the weird numbness. The left half of my lower lip is painfully tingly and I've got numb teeth. But I can bite into ice cream now!

Yay for ice cream!! Glad to hear you are doing well!

Why did you name it Marla?

Fightclub.

When you got "Marla" removed, did she tell you that you were the world thing that's ever happened to her?

No, but she told me I was great in bed.

Had a friend that was diagnosed with testicular cancer and given 97% chance of success. He did not make it through chemo. Every day on facebook he made it out to be a joke and constantly stated "I dont understand why everyones making this a big deal" and unfortunately that was the last status update he made. I believe this is why its a big deal..you never really know what will happen.

I'm sorry to hear about your friend. Hope you yourself are doing alright. Thanks for sharing, best of luck to you.

Do you look at life differently? Or death differently ?

I look at life as more of a gift than I used to. Around that age I thought that I deserved to be here, however after that whole thing, it hit me that I really deserved nothing.

How old are you now and do you feel that your illness has caused you to ''grow up'' faster and miss out on being a carefree child??

I'm 17 now, and yeah it did make me grow up. It put things into perspective, however I think that I'm a decently carefree child.

Man... You're 17? I'm 17... Do you play Xbox? Nothing would make me happier than to play Xbox with you.

Message me your gamertag.

How did you know to first get it diagnosed? How was it detected?

I had a constant stuffiness in my right nostril, we originally thought it was allergies and got many nose sprays prescribed. Eventually they decided to take a look and found out it definitely was not allergies.

First off I'm glad to see you made it out okay! What were some of your symptoms? What prompted you to go and see a doctor?

Thank you! The symptoms were a stuffed up right nostril every day and night, and migraines at least once a week. What promoted my family to take me to a doctor was the constant stuffiness I had, it affected my sleeping mostly.

I'm suddenly concerned that I have a stage 4 brain tumor...

Go to WebMD for an accurate analysis.

Just wanted to say that it's so awesome you have a great sense of humor after everything you'be been through. You've made me laugh throughout this whole thread. Congrats on your recovery!

I appreciate the support! Thank you

How bad were the migraines? We talking like debilitating?

They were decently bad, but they could have certainly been worse. I had alot of trouble focusing on anything and I was VERY sensitive to light. I usually took something (I don't remember what the pill was called) and laid down for half an hour to an hour until it went away.

How did they find out it was a tumor?

They stuck a camera up my nose and found a blockage, then they did an MRI.

I usually check mine with my finger.

They generally do the same.

For what period of time did you have the migraines and stuffiness? A few months? A year?

a few months. probably half a year.

I don't really have anything to ask, I'm just glad to see that this says HAD instead of HAVE.

Have a wonderful life brah.

Thank you for the kind words!

How does it feel to be free?

It felt great. I could breathe finally, and the migraines went away.

Grats buddy... live your life!

Thanks so much!

Did they give you the bad news straight up or, because of your age, keep it quiet? And, when you heard the news, what was your personal opinion on your chances for survival?

They talked to my parents separately and gave them the run down, and my parents told me that we would need to go to Philadelphia to get my tumor (first time I heard what it was) removed.

I wasn't too worried then, but now that I'm more grown I realize I actually had a pretty slim chance.

Edit: However, at the hospital they did tell me straight up the risks, what they were going to do, and how it might affect me.

Ahh they sent you to CHOP. I always thought that was an awful abbreviation for a hospital of any kind let alone a children's hospital. Needless to say I was terrified when I heard that I had to go to CHOP to see a doctor about my kidneys when I was younger.

CHOP is the bomb! Did they chop out your kidneys?

Haha no, to my gratitude. I had to wear a weird catheter for about a week though so they could figure out what was wrong with me.

Yep. I know the pain. So strange..

"I had a stage 4 brain tumor" I was browsing reddit and started to tear up. No Questions just I'm sorry that you had a Stage 4 brain tumor. I married my wife in September and in May my Mother-in-Law was diagnosed with stage 4 brain cancer and the tumor was removed and then 3 weeks later it was back to its original size. Three months from diagnosis to death was three months (she died July of this year). Her trial was pain and I'm glad she is in a better place (I believe in a God).

I wish you the best of luck and I hope that you have a long life.

I'm so sorry to hear about your Mother-in-Law. Best of luck to you, thank you for stopping by and saying something.

Glad you are doing well and I'm sorry you had to go through such a scary thing.

I think it is important for people to note that "stage 4" is used in staging a lot of tumors, but typically people are used to hearing it terms of meaning "most severe cancer" and it can mean many different things in terms of which specific disease it is being used to describe. Often this means the tumor has metastasized into remote areas of the body.

JNA is generally benign (see his proof paper, his was benign), and staging info seems unclear... http://radiopaedia.org/articles/staging-of-juvenile-nasopharyngeal-angiofibromas

Can you tell us why yours was classified as stage 4 JNA? Was it the involvement of the optic nerves?

Why was medical history made? did you get into the medical literature for treating your unique condition?

I was treated for a childhood issue that they discovered a new treatment for and I'm in some medical literature (as child B, lol). It's pretty cool to know your case will help someone else in the future. :)

Yes, the tumor was benign.

It was classified as a stage 4 JNA because of the size, as well as its interference with my optic nerves.

The surgeon decided the morning of the surgery to use a device that was never used in any kind of surgery in the head before and he was able to remove all but two little pieces without having to open my head.

Did they open your head to go back for the two little pieces?

Nope, that little bit of Marla is still with me.

What device is that? Stereotactic endoscopy? A robot?

Unfortunately I can't say, that stuff is confidential for reasons I don't know.

Do you have a pretty gnarly scar?

Has it had a large and long lasting impact on your family's financial state?

Was it just surgery or chemo and radiation?

Thanks for the AMA and congrats on recognizing life as a gift at such an early age, many never do.

No scars, that's why it was medical history.

No, we were lucky and had great insurance and friends that supported us with frequent flyer miles and we stayed at the Ronald McDonald house; which is a great organization that everyone should support.

My first surgery was a radiation to stop the bleeding, however the tumor was benign.

Thank you and thank you for the questions!

Yay science! Very cool that your family has not had to endure a financial burden from this. Also, the Ronald McDonald house is fantastic. My cousin was in the hospital for a while (months) several years ago, and my family raved about how great everything and everyone was. I am glad you had a similar positive experience.

The Ronald McDonald house is the shit. How is your cousin doing?

Thank you for the kind words.

you said you're 17 now? senior in HS? looking at college?

Junior, I should probably start looking for a college.

What were your odds of surviving?

Odds of surviving were 50/50, but the odds of having a stroke or being blind were very high. Luckily, everything went perfectly.

What has been the most difficult part of this whole process?

Probably waiting for the medical team to be assembled. It took two months time, and in those two months my tumor could have ruptured and I would have bled out; most likely while I was sound asleep.

Two months!? Why would it take that long?

Because it was the worst case they had, they wanted the best of the best.

Edit: for fluency.

Do you consider yourself lucky to be alive, or unlucky to be afflicted with it in the first place?

Definitely lucky to be alive. The MD did a fantastic job.

My uncle had Stage IV cancer 20+ years ago, when bone marrow transplants were still considered experimental. His chances of survival were extremely low prior to the transplant and other treatments, but he pulled through and has been cancer-free for 20 years now. Wishing you all the best!

SO happy to hear that your Uncle survived and is doing well! Thank you so for stopping by and saying something. I appreciate it.

[deleted]

Not much other than school and not being able to carry my backpack for the first two months.

I have a friend who was recently diagnosed with a brain tumor. Based on your own experiences, what would be some great ways to support him?

Have a positive outlook on the situation, be there for him, visit him often, ask him and his family if he needs anything or for anything to be done. It helps the situation immensely.

Any brain damage?

None to speak of. Unless there actually is and I just don't realize it because of it.

My worst fear

Agreed.

Uhh, Speaking of fight club, how do you know any of this is actually happening, and you're not just punching yourself in the face?

I'm beginning to wonder where all this damn soap comes from.

How did your family cope with this?

They coped with it day by day because there wasn't much that they could do to help me. However, while waiting for the medical team to be gathered (2 months), they handled the flights and housing for when we went out of state, sent out news letters to their networks, and received alot of positive karma from people they knew and did not through out the process.

Did they let you keep it?

Nope. They did let me name it though. It's name is Marla.

What was it like to be given a diagnosis that could have quite possibly been terminal and to come through it? I've heard many patients end up with a serious void or emptiness after coming through similar situations.

I think most patients who feel this way tend to be older, so I'd love to know how ending this chapter of you life feels for you.

At any rate, congrats on making it through. I hope it remains complication free from now on.

I was too young to understand the complexity of the situation. However, I could sorta tell it was decently bad because of the way my parents acted toward it. I don't have any void or emptiness because of this luckily, and I think that I'm living a much happier life because of this.

Thank you so much, as do I.

I'm not here to ask a question, I just wanna say how pleased I am for you to refer to your ailment in past tense.

Thank you for the kind words, I appreciate it.

I lost my grandfather to a stage 4 tumor behind his nose last July. It was a horrible thing to watch progress. It started behind his nose and traveled down to his neck. His eyes eventually crossed and couldn't breathe through his nose. The last time he went to the doctor they offered surgery, but he decided against it and chose a different route, basically assisted suicide. The doctor prescribed him two drugs, that when combined is lethal. My hats off to you, young man.

So sorry to hear about your grandfather. I'm sure he was a wonderful man and will be remembered. Thank you for the kind words.

Hey, good for you man! I'm really happy to hear it was success.

My friend's dad wasn't so lucky, he was diagnosed with a brain tumor and 4 months later, he was gone.

What were the symptoms for you? EDIT: Read the answer, Thanks!

Thank you for the kind words sir or madam. I'm sorry to hear about your dads friend, best of luck to their family.

Do you live in the states? Any medical bills?

I do. Yes.

How horrific were the bills?

Horrific.

What breakfast cereal do you feel best goes with orange juice?

None. They go better with milk.

How did getting it removed at such a young age affect you at the time and now?

Also are there any continuing effects e.g. Nose bleeds?

It affected my breathing and mindset.

No nose bleeds, but I have numbness in my nose, upper right part of my lip and roof of my mouth.

How has your experience changed your outlook on life, on people, on relationships etc?

Do you or the people who know you find that your personality has changed significantly because of this experience?

Besides, I'm sure, your loved ones, what things helped you get through this experience? Without wanting to go in much detail, I've seen my share of hospitals as well and music helped me a great deal.

Glad you're here to tell the tale :)

Edit: Added more stuff.

I look at life more of a gift than a given.

I'd say I'm definitely more cautious about how I treat my body, and I'm much more understanding when it comes to someone who has something similar to me.

Thank you much!

did OP die?

OP is alive and well.

When you were told that you have a tumour, what was the first thing that went through your head? Did you ever think you may not make it? How did people treat you when you told them?

Yeah it went through my head a few times that I might not make it, but I was too young to think anything of it.

I thought I was going to be fine. Because as a 12 year old, somehow everything would turn out fine.

Sympathetically. Good intentions of course, but it was kind of strange. They were making me seem different than everyone else haha even if I was, just a strange feeling.

I had a brain tumor in my sphenoid(idk how to spell it) cavity when i was around when i was 10(im 18 now), luckily it was benign.

I am glad to hear it was a success, I wish you nothing but happiness. Brain tumors are a terrible thing.

I'm glad to hear that everything went well and you are alive and well. They are indeed, but luckily there are medical professionals out there willing to help. Thank you.

"the surgery was a success and medical history was made" Was it free?

It was not.

congratulations on the success of your treatment. it is an odd gift to live through these situations (ima cancer survivor) ... this new perspective is something not many have or keep.

Congratulations! It was a tough thing to live through I'm sure. I'm happy you made it through.

It should be something everyone should have.. Life is not to be taken for granted.

Do you think you and your family didn't react to your abnormal migraines too fast? I'm not sure how fast brain tumors develop but 4th stage is pretty severe. Or they didn't act up 'till the last stage?

We had no idea. The migraines were thought to be part of allergies apparantly. By the time we got it checked out to see if anything was actually going on in my noggin, it was a stage 4 and we got help immediately.

As a sidequestion, if it wasn't treatable do you think skydive suicide is the best kind of suicide?

The best kind of suicide is none at all.

Sky diving would've been the obvious option though.

What helpful advice would you give someone facing a similar/same diagnosis?

Hakuna Matata

No but in all seriousness, I would suggest you visit a doctor, explore your options THOROUGHLY and choose the best one. But chances are, even if you are an adolescent boy, you won't get it.

How was medical history made?

The surgeon decided the morning of the surgery to use a device that was never used in any kind of surgery in the head before and he was able to remove all but two little pieces without having to open my head.

Did you at any point accepted that you would probably died? Did you made peace with this idea or did you always had faith you would survive this?

I was too young to comprehend death. I thought that whatever happend would happen and it was no big deal.

Best use of the word "had" ever. Congrats!

Thank you so much!

You went from stage 2 to stage 4? That was fast.

Haha, I read that thread and thought I'd bring my personal experience to the table, considering we had different tumors.

you said you "had" stage 4 cancer does that mean its gone now and if so how was it treated?

I didn't say I had stage 4 cancer, I said a stage 4 tumor. Not all tumors are cancerous. See /u/raldara for an explanation on stages of tumors.

Did you develop psychic powers?

No, but I did develop an amazing sense of smell. In fact, I can smell you from here.

Hello, my uncle (he was 39) passed away from stage 4 brain cancer about a year ago. I was pretty close to him and was devastated when I found out he had it. However, I have no doubt in my mind that we made his last couple of years very enjoyable. We had family gatherings, birthday parties, etc. Anyway, my question is how has your family changed and since been treating you, now that you have brain cancer?

I do not have brain cancer, nor did I ever. Luckily it was a benign (non cancerous) tumor. The unwanted mass has been removed and I've been healthy since, luckily my family treats me as if I've never had it, normal.

I don't have a question. I just want to say how happy I am that you're still with us.

Thank you, I appreciate you taking the time to comment.

Without sounding somewhat ignorant, what is JNA? Is it a form of cancer?

How much would the surgery of cost had you not had insurance?

Did your condition cause any conflict in your family?

Did the doctors tell you that they were going to be using the special machine on you before the surgery or not? If yes, did it worry you or your family any more than you/they already were?

What was your recovery after the surgery like?

Do you think a free health service (such as the NHS over here in the UK) would of benefited you more or do you think you were better off with the private treatment you received?

Thanks for doing this AMA, sorry I've asked so much! Glad to hear you're back on your feet.

JNA is a BENIGN tumor (non cancerous) that occurs in adolescent males.

Half a million.

None whatsoever

I don't believe so, but they told my parents. I was already knocked out.

Not too bad, had about 12 feet of medical gauze stuffed up my nose for some strange reason, got that removed, and recovery took about a week before I could leave, and about a month before I was normal and healthy.

I think free health service should be a thing in the U.S., but with our insurance we lucked out and didn't have to pay that much.

No worries, happy to answer. Thank you for the kind words!

What were the symptoms before you knew you had a tumor? How did you first get diagnosed?

Constant stuffed right nostril and migraines at least once a week. We went to the doctor several times and they said it was most likely allergies, but when none of the treatments worked they took a closer look and found out it was JNA.

Something something Breaking Bad reference.

Also, congratulations on living good Sir. I doff my cap to your good fortune.

Thank you much! I appreciate it

I buddy of mine fought against JNA for a long time. In high school he would constantly gain and loose weight. He was always a big guy, but to see what he went through was hard. We lost him last year after a long battle. I am glad that you were able to be successfully treated man.

SO sorry to hear about your friend.. Thank you for the kind words, best of luck.

It may of been asked, but when my grandfather had cancer he moved to a more spiritual approach to stay positive. Does that really help you or does it help the family more than the cancer patient?

Anyways good job. Keep fighting the good fight and have a long and happy life :D

I'm not a spiritual person, however it is comforting to use that approach. I put my faith in the doctors to do what they could. It's different for each person.

Thank you! I appreciate it.

I also have a brain tumor, was discovered when I was in the first grade. The teacher thought I was having issues reading/squinting so they sent me in to get glasses. During the visual field test they realized I was completely blind in my right eye. I at the time never noticed or new a difference as I was 6 and thats how I always viewed the world, through one eye apparently. After an MRI they discovered I have a brain tumor on my optic nerve next to the patuatary gland. Did a biopsy during winter break of '95 (still the first grade), and determined it wasn't cancerous. I have had periodical check ups since and no growth has been detected. I rarely notice and don't have any noticeable disabilities due to it, most people don't believe me when I tell them. I also have a cool scare on my head going from behind my right ear to the middle of my head curving down to my hair line. Glad to hear you are doing well, its a amazing how far modern medicine has come.

Thank you for sharing your story, I'ts a relief to hear that its not cancerous. Thank modern medicine for sure.

The number one question burning in my mind is, Did they let you keep it? like in a jar of formaldehyde. I mean personally I would've wanted to keep it to ceremoniously Stab it repeatedly and burn it.

I wish :( they kept it for studies.

Since it was a brain tumour, did it affect your perception at all? Did you suffer from any hallucinations?

The only thing I can think of would be sometimes the room would start to swirl and I would get dizzy. Aside from that nothing.

Did you beat that level and move on to stage 5?

I lost and moved down four stages.

what are you doing to do before you die?

Live healthy, hopefully.

[deleted]

I don't remember.