26 year old woman and recent stage 4 cancer survivor here. AMA!!

Hey, I'm a 21 year old male who's undergoing radiation and chemotherapy treatment for grade 3 brain cancer. Just want to let you know you're a great role model for those of us still fighting. Wishing you the best and I hope I can call myself a survivor like you in a month or two :)

I'll see you in the winner's circle! Bring snacks.

How did you beat stage three? I have never made it to stage four without cheats.

up up down down left right left right B A :)

That was awesome. Have some gold :)

OoOh shiny. Thanks!

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I'm cool with it

oh please, a stage 4 cancer survivor has more sense of humor than you

It might be cool with it since shes a survivor, but its not funny when you still have it.

Dude, cancer jokes are my jam, even when I still had it.

What breed is your house?

Um? It's a quad level?

Oops! I meant puppy haha

Oh okay, that makes more sense!! He's a doberman pinscher.

puppy pic?

most recent

Falling asleep sitting up after a day at the dogpark

What will i get If I breed my quad level with my A-frame?

houses can't breed brah

Hi, my mother has stage 4 full skeletal bone cancer and brain cancer. I don't really know what to say or ask. Just I guess its nice to some one can beat it. Hopefully my mom can too.

Just tell her to remember that you can't control what happens to you, only how you react to it. That was very calming for me. It's out of my hands.

Grats on your Win!

I'm stage 4 Brain, Lungs and Liver right now.

My biggest gripe; Can't poop. The pain meds and 'roids have me locked up tighter than a drum. I'm so cranky!

Did you have to deal with this? What was your solution?

PROOF

That was the worst! Oh man I forgot about it until now. Just keep your doctor in the know about it and they'll hook you up with some stuff to help!

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I started feeling sick around this time last year or maybe a little earlier, mostly short of breath all the time. I had gone to the doctor a few times for it and they just kept giving me antibiotics. On the 4th visit (May 16, 2013) they took an xray and discovered a softball sized mass in my mediastinum, which is the area in the chest between the lungs. I started chemo June 10 and finished October 7. Then I started radiation on December 9 and finished January 5.

I was pretty lucky in that chemo and radiation didn't effect me too much. I only felt nauseous and threw up maybe twice. What sucked the most was the throat/mouth pain, and it got worse the further I got along in treatment. I would be so hungry because of the steroids I was on, but couldn't eat without intense pain (think a mouth loaded with hundreds of canker sores from hell).

Thanks!

I don't mean to imply doctor incompetence, but it really took them four visits to take an x-ray for a person with chronic shortness of breath? I had a bad cough and the first thing my doctor did was send me to the x-ray room.

It did. I'm still furious about it.

Doctor here. It's not a question of incompetence. It's a question of convenience for the patient. Everyone would like a 100% accurate diagnosis 100% of the time for every visit however, this is just not possible or practical given the time and economic constraints of outpatient medical practice. Nor is 100% accuracy necessary for relatively minor and common symptoms. The vast majority of health complaints for a previously healthy 20 something either resolve on their own or have a common and easily treatable condition such as asthma or reflux. I.e. only a tiny percentage of young patients seen for a cough are likely to have a mediastinal lymphoma and so Xrays are not commonly ordered at the first or even second or third visit. The decision to order more advanced testing (like a chest Xray) depends on the severity and acuity (duration) of the symptoms combined with other factors like past medical history and associated symptoms that may increase the statistical likelihood of a condition more serious than just a cough. This type of step-up in diagnostics for symptoms that persist after initial conservative treatment is essentially standard of care.

Now, that being said, a doc who spends more time with their patient getting a proper detailed history and exam MAY be able to increase the accuracy of their differential diagnosis and determination of which patients need further work up. In our current system, docs are paid per visit and so their schedules are packed and "shortcuts" are taken (treatment given for the most likely causes without making a definitive diagnosis) for minor complaints that need to be compressed into a 10-15 min visit. Statistically this works out since - again - most of the patients will get better no matter what is done and those with continued symptoms will get more work up or treatment. This pattern may repeat over 2 visits or 4 or more. That's not important as long as the correct diagnosis is made within a resonable period of time so that the prognosis is not altered (so that it's not too late). The down side is that the patient is frustrated at the continued symptoms and the need to return for numerous visits. However, this would not necessarily get better in a socialized system such as the UK's NHS where there is even more pressure to constrain costs through central planning and limited resources.

I'm so glad you chimed in. My question for you - when I was diagnosed I had a sizable pleural effusion, about 2.5 liters. I started going in for shortness of breath in February, and it got worse and worse until the xray was ordered in May. It stands to reason that fluid was accumulating during that time, but my doctor was auscultating my chest at each visit and never thought I had anything serious. Wouldn't a large pleural effusion sound abnormal?

Yes, a large pleural effusion should be detectable especially if it was mostly or only on one side. This should cause a significant and detectable difference in the breath sounds on auscultation of the chest. However, it's impossible to know if your shortness of breath was caused by a significant pleural effusion back in February or whether there were other reasons for your symptoms such as anemia (low white count) or partial compression and blockage of a bronchus (one of the airway branches of the lung), etc. etc. Often there are several causes for a specific symptom for a given condition which makes these kinds of speculations very complex.

Edit: Suspecting a pleural effusion on exam should prompt more concern and further studies since this is not at all commonly associated with common causes of cough nor seen in otherwise normal 20 year olds.

Edit/correction: Anemia = low blood count (Hb). Leukopenia = low white count. My bad.

It was all on one side. I wasn't only auscultated in February, I had been seen 4 times leading up to diagnosis - in February, March, April and May.

My sister was diagnosed with stage 4 lymphoma about a month ago. Her cancer presented itself in a very similar way to yours, did you have lymphoma? If so, what type of chemo did they give you? My sister is starting her second round of chemo but first round of EPOCH on Tuesday.

Yes I had Hodgkin's Lymphoma. I was on escalated BEACOPP. Send her my regards.

Was a feeding tube an option? Two guys I work with recently had them put in because they're treatment is focusing around their throat and eating is going to be extremely painful for them.

I guess I could have asked for it but I would have needed to be hospitalized for that and I'd rather be at home.

Could you tell it was good news from your doctors face?

Not at all. He had a great poker face.

Hey! Im proud of you.

Thanks :)

What's the most positive outcome of surviving cancer for you?

I have the most amazing sense of perspective now. Nothing really agitates me anymore, and if it does, it's not for too long.

Thank you so much for the response. Do you have any advice for others looking to achieve this perspective?

Survive cancer. Honestly though, I think it takes a serious hardship and/or brush with death to really change your perspective for good.

Such a true statement! I was diagnosed with a very painful disability that will never go away and can't really be treated. I know it's not serious like cancer, but no one quite understands how terrible it is to be in pain everywhere, every day, plus all the other shit that goes along with it. But it's definitely made me mature very quickly, and I'm a lot more empathetic towards others. I forgive other people's weaknesses and faults because I've realized that you never know what someone else is going through.

What helped you most through the hard times? My illness is hard; the suicide rate is extremely high. The awareness site said, "if everyone in the world had it, a third of the population would be dead in a year" or something along those lines.* But no one takes it seriously. I'm at a very dark place right now. I'm seeing therapists and all that, but I've been in so much pain for so long. I guess you just have such an awesome outlook, I'd love to know what kept you fighting when things felt impossibly hard.

*-the site said "half", but it looks like it was actually bullshit. The accurate facts are that suicide is 10x higher with people with my illness.

From what it sounds like, you're the one who should be doing an AMA. I've got nothing on what it seems you're going through. Just keep on keeping on. Things always get better, even if they have to get worse first.

Amazing. BTW, keep your hair short, and keep the sneer!

haha thanks! My hair was always short pre-cancer so it shouldn't take long to get back to how I had it :)

Well then if it's not too inappropriate may introduce you to /r/shorthairedhotties?

Been there! I was a frequent poster pre-cancer because I always kept my hair short.

Girl you rock that pixie cut SO HARD

thx

Congrats on beating cancer! Also, you've got fierce brow game.

Thanks brah

Thanks BROw

Nice

big deal , I survived being without internet almost 45 minutes the other day.

AMA!

Are you more or less religious now?

Good question. I didn't want to bring this up, but I lost my father halfway through chemo completely out of the blue in a motorcycle wreck. He was my biggest fan and always told me he'd switch places with me. I tell myself that he did - that in some alternate universe, I was supposed to be the one who died and he took my place. At his funeral, we played "simple man" and I hear that song all the time now, maybe because I'm just more receptive to it. It was actually playing DURING my final PET scan to see if I was cancer free. The tech forgot to turn off his radio and I could hear it playing while I was in the MRI machine. I don't really know where I stand spiritually but it sure is nice to think he's looking out for me.

Was there any change in how people treated you after your diagnosis?

Nope. My friends and family were awesome throughout, but that was not a deviation from normal for them.

What do you think was the hardest part of having the disease?

It was probably the fear of not knowing if I'd make it out alive. I'd be able to 'forget' about it for short periods of time and then the reality would dawn on me all over again. I remember my boyfriend and I went to see 'This is the End' in the middle of my chemo, and I just kind of got lost in the movie, but on the way out remembered I'm sick and might die. So I couldn't really enjoy things as much. It was like there was a giant storm cloud over my head all the time. That sucked. But now, I have that same realization, except it's that I'm cancer free. It hasn't really sunk in yet, so my default mindset is that of a sick person. Now I just keep realizing again that I'm not sick anymore. It's a wonderful feeling!

Did you face the possibility of death head on or did you just throw that on the back of your mind while doing the most to get better?

Edit: Oh and holy shit you pull off short hair really well

I tried to throw it in the back of my mind but it had a way of making its way to the forefront all the time.

How did you feel when you got the news you had cancer?

Crushed, in disbelief, defeated.

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I stopped looking at numbers and statistics long ago, so honestly I have no idea.

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Yes. I will have scans frequently until the 5 year mark.

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op pls

lol

Congrats!

What's your dog's name?

My dog's name is Saber, as in light saber, as in light (saber) at the end of the tunnel. Also because my boyfriend and I were playing Killer Instinct on xbox and my favorite character was SaberWolf.

You are funny, play videogames,have a dog ....and fate had the nerve to give you cancer?!

I'm a better person for it, so it's cool.

Do you still want to be an oncology nurse?

Actually no. I'm working in a hospital now on the administrative side, and just being in the environment for the short while I've been there, I'm absolutely positive I do not want to be bedside. So I switched my major to health care admin.

What made you change your mind?

I think I have PTSD or some variation. I just can't be in those rooms.

Did you ever consider becoming the real life Heisenberg due to your cancer?

Nah, I'm not the danger.

But are you the one who knocks?

I'm more of a door bell kinda gal

Did you have a bucket list of things you wanted to do in case you didn't beat the cancer you had? If so, will you still do them all?

I'm glad you're still with us.

I wish I could say that I did, but not really. I just tried to be as normal as possible throughout. I guess the closest I came to it was wanting to train for and run a triathlon post chemo, and that's still in the works. Right now I just have to get my pre cancer body back!

What kind if symptoms did you notice? How long was the shortness of breath there? Does cancer run in your family?

Shortness of breath and lethargy. The shortness of breath was constant from around February to May when I was diagnosed. It was really bad on exertion. I remember I had a class on the third floor and in the beginning of the semester, I would take the stairs no problem, but as the semester wore on, it was getting more and more difficult for me to climb them. Cancer doesn't run in my family. Hodgkin's is one of those rare ones that doesn't have a genetic component (or that's what I'm told).

I see so was the shortness of breath just when you tried doing something or was it there when you were just sitting and watching tv for example

Sitting was okay, but I went get lightheaded upon standing.

So Mordor..What's that like?

It's actually pretty chill.

I am also a young Stage IV cancer survivor. Treated with ABVD & escalated BEACOPP, both of which failed. I am now 16 months post stem cell transplant & still NED. Just wanted to say Hi and Rock on! Also virtual hugs!

Go you! We had to look into stem cell transplantation. I have it all set in case things go south.

HOLY FUCK!! 26.000 for cancer treatment??? I'm so sorry :(!

Oh man that's a very small portion. All total it was probably around 250k if I had to guess. Thankfully that bill was in error and I only ended up having to pay about a grand out of pocket.

Have you read The Fault in Our Stars by John Green?

I have.

My wife was diagnosed with breast cancer this past Monday. So far, it looks as though she caught it quite early, though we won't know for sure until after surgery. Due to her age, we have been advised that even though it seems likely that the cancer is currently confined to her breast, chemotherapy is advisable to ensure that we treat any cancer cells that may have gotten out, but haven't been detected.

What specific things would you have liked your partner to do as you went through the process you went through?

Just be there. I wish there was some magical formula but there really isn't. Plus what I wanted isn't necessarily what she will want. Just talk to her.

How long were you diagnosed with stage 4 cancer?

Diagnosed October 7, 2013, cancer free February 17, 2014.

my mom was recently diagnosed with lung cancer (non smoker). they want to remove the lung, as radiation and chemo only has a 20% survival rate for her type and the area it is in. What advice can you pass along, I am devastated. So happy you have beat it, an inspiration to many I am sure.

Oh man I'm so sorry. Remember that we have 0 control over what happens to us, only how we react to it. Stay strong, you and her both.

What do you think helped you the most? While on chemo and throughout the whole process did you change your diet or do anything different?

I ate like a fucking hog. I was on steroids and my doctors just told me to eat all the time to keep my strength up. I obliged. Now I'm paying for it.

Congrats on beating cancer!! Do you have to have a special diet post cancer at all?

Yeah I'm low-carbing it and working out like a maniac to get my pre chemo body back. I used to be pretty athletic, then I was on steroids, and not the kind athletes take.

For the sake of treating you like a normal human being, photo of your puppy please?

P.S. Good job kicking cancers ass!

Check my submission history. I post pictures of him all the time.

How did the process of loosing hair affect you at the time?

Btw, sexy hair after four months.

I shaved it all off myself before it fell out on its own.

Do you play any instruments?

I play the kazoo

Do you have to live with any sort of complications as a result of the cancer?

I still get occasional chest pain but that's about it.

I always wonder how people can pay these things. That's a five-figure bill; does insurance cover that for you? Would I, a not-so-wealthy college student, be totally screwed if I were to find out that I have cancer?

Also, congrats. I've lost two family members to cancer in the past year alone. Shit's for real.

That bills was sent to me in error and I'm not on the hook for that cost, thankfully. Insurance paid for all but about 1k. Do you have insurance? Are you under 26? If so, you can be covered my your parents' health plan. Otherwise, I'd suggest seeing what kind of health plan you can get through the affordable care act.

Congratulations!!! Do you think it's true that what doesn't kill you makes you stronger?

In a sense, yes.

Dropping by to wish you congratulations on kicking cancer's ass. Also, you look gorgeous.

What did you name your puppy? What breed is it?

He's a doberman named Saber. Right now we're working on getting him shaped up to compete in the show ring and hopefully get certified to be a hospital therapy dog.

Call me shallow, but I think you look really cute with short hair. Best of luck going forward!

Thanks!

What are your future plans to kick life's ass, cancer survivor?

I'm now working in a hospital and would love to work with cancer patients in some way, shape or form.

What kind of therapies did you do? Chemo? Drugs? What was your diet like during the ordeal?

I did escalated BEACOPP chemotherapy and a whole plethora of daily meds. My diet was just whatever I could get my hands on to keep strength up.

Would you rather fight one horse-sized cancer or 100 duck-sized cancers?

1 horse sized cancer

did u smoke pot and what is your thought about weed for that purposes?

have a wonderfull life :)

I had no need to smoke it, but it was there if I needed it. My SO is on medicinal marijuana. I think it's silly that so many people are serving life sentences for it and we just need to legalize it.

How do you feel about Rick Simpson Oil?

I try not to talk badly of things I haven't tried myself. I have never tried it, but I do have reservations about it. I'm science minded and of the belief that 'alternative' medicine isn't medicine.

do you break bad like walter white?

Well we all see where that got him, so no :)

So if you could help someone look at life the way you do now, without them having to face death, what would you tell them?

When you find yourself getting stressed about something, ask yourself if it will matter when you're 80.

Did you hair grow back another color?

How did family take it seeing you on the hospital bed, did anyone ever burst out crying in front of you while visiting?

edit: nvm about second question, you mentioned you didn't get really thin & had a wig on.

My hair's the same color.

Congratulations. My grandma recently passed, so its great to hear about a survivor, well done.

Have people called you "brave" through your ordeal, or said "heroic"? If so, what do you feel about these adjectives being used to describe cancer patients?

I've been called that. It feels silly though. My take on that - no, they're not really 'heroes' in the true sense of the word but who gives a shit? Cancer is hell in a handbasket, let them have their day.

What's on your list of things to kick the shit out of now?

I'd love to get into boxing

What was Mordor like? Do you know anything about the employment status?

have you seen charlie the unicorn? That was actually shot in Mordor. lol

As someone your age with an average income, I can't fathom the bills. Is this something you'll be paying off for years like a mortgage? Obviously that's not the most important thing here but I'm curious

I had excellent insurance (I was under 26 so still under my parents' plan) and only had to pay about 1k out of pocket. The bill in my proof pic was sent to me in error.

I'm a huge defeatist even on trivial things. How did you get through the emotions?

I just put my head down and ran, so to speak.

Did it annoy you how people treated you before you were free from Cancer? Was there ever a time when you felt annoyed at the subtle changes in how people would normally act. As in, maybe refraining from saying things, or avoidance?

I didn't notice a difference. However, I did not look like your typical cancer patient. I did not get dealthy thin and I always had a wig or hat on.

Do you play any games?

Just on my phone mostly

Is your blood type RH positive or RH negative?

I don't understand the question? My blood type is O negative, if that helps.

Now that you've kicked cancer's butt,

would you get in a fight with 100 duck sized horses, or 1 horse sized duck?

I'm a lover not a fighter.