I Am A Teenage Cancer Survivor, AMA

Has it changed your view of life?

Yes. Before getting diagnosed, I was severely depressed (diagnosed), and I felt like I was in an emotional limbo. Now, I feel like I was given a second chance at life. I still have depression but I know that I will always win my fight against it, because I’ve already been on death’s door. Life is so much more colorful now, and I appreciate the small things like being able to breathe fresh air when I first wake up in the morning and bring my dog outside. A lot of people don’t value life until they almost lose it.

Hey! First off, congrats on two years! Second, and I promise there’s a reason I’m sharing this, I was first diagnosed when I was 15 (almost 16). Hodgkin’s 2B. Had a couple relapses, and it’s been a bit over 12 years since the second relapse. yadda yadda.

Here’s my point: adolescent cancer survivors have a higher prevalence of PTSD than the general population (50% show at least 2 symptoms, and 20% develop full-blown PTSD). It also doesn’t usually show up immediately. We tend to develop it later on (early to mid twenties).

This is just a heads up so it can be on your radar. I went undiagnosed for years. I won’t go into the details of how bad it got, but it was really bad. Talk to your oncologist and psychiatrist about it.

Also, talk to your parents about it. They actually get PTSD at a higher rate than the adolescent survivors do! (Siblings are also at risk, but less so than survivors and their parents.)

Treatment keywords to look into if it ever becomes necessary: EMDR (cognitive behavioral therapy with some extra steps), and psychedelic microdosing.

Yeah, I get panic attacks whenever I have to go to a doctors appointment of hospital so I’ve been on watch for it. I can’t have certain foods without being reminded of the hospital. I will panic.

Thank you! I’ll make sure to keep my eye on that.

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The most I can recommend is just realize that every day is a gift. Living in fear will ruin the days that could be great. Live your life, because you never know when your health will be taken from you. I had to quit marching band and other activities like that because my symptoms started getting bad in freshman year. I wish I was able to stay.

And, realizing that death is inevitable and that there’s nothing you can do is what keeps me living my best life. We can’t choose when we die, so we might as well make life good when it lasts!

Interesting thought.

Counter point: We can choose when we die, up to a certain point where it's physically impossible for our bodies to continue functioning. We can also sometimes choose how and why we die.

I think everyone knows that death is inevitable they just refuse to face it maybe ?

Yeah. That’s a good point. I can’t blame anyone for not liking the idea of death.

When and how did you realize something was wrong?. Since having kids I'm super paranoid about any strange aches and pains.

I always knew something was up, but I didn’t know it was this bad until I found a lump above my collarbone that didn’t go away. That’s a telltale sign of lymphoma in my age group. My doctor ignored my symptoms so the lump was there for a year before I got diagnosed, which is why I was expecting that bad of a diagnosis. Being health conscious is good, if you suspect something really bad, always push your doctor.

A lot of times with cancer, there will be no symptoms. Always just make sure everyone gets their checkup. That will be your best bet.

Doctors not taking patients seriously really makes me mad. They especially do it to women and younger people. My epilepsy went undiagnosed until my fourth seizure because every time I ended up in the hospital they were like “pretty sure you just fainted, not had a seizure” and then didn’t give me any medicine that keeps seizures under control. The worst.

That’s the absolute worst holy shit. I’m so sorry.

I always knew something was up

Wait, what do you mean by that? Did you know something was wrong even before you found the lump?

Did you have any noticeable changes like change in energy level or large weight gain/loss?

To be more specific, I knew that something was wrong after a month of unexplained stomach pain and itchy legs. I had a huge change in energy too. My doctors didn’t take me seriously so I had to deal with three years of stomach pain and lethargic levels of energy on top of each symptom I had. Of course my brain didn’t go to cancer, but after a month of not finding answers I knew something was up.

How’d they eventually give you the diagnosis? Like what tests did they run?

They found my tumor on an x-ray, my white blood cell count was high, and they did biopsies on a few places on my body.

I’m glad you’re okay b! Here’s to many more happy and healthy years sis!! 💚

Thank you!

How do you deal with the pressure of ‘I’m a survivor and i have to live life to its fullest’?

Do you get jealous that some people are allowed mediocrity?

Interesting! I’ve never really thought about it, but yeah. People like me, especially kids, are expected to be completely okay afterwards. A lot of us deal with the trauma of the hospital, and the emotional damage from the physical pain we’ve went through. A lot of us have scars that remind us every day that we used to be terribly ill. We’re expected to be immediately happy afterwards, but that’s rarely the case. Anxiety of relapse, PTSD linked to hospitals, it isn’t as simple as “oh you’re cancer free so you don’t have to worry anymore”

I live life to the fullest but I still have the days where I want to sit on the couch and watch tv. I am following a bunch of cancer survivors on Instagram and I see that they’re all living. They’re taking dance classes, they’re still traveling, but I still like to sit on my bottom and eat bad food sometimes.

I’m not necessarily jealous that people are allowed mediocrity, I’m more disappointed that so many people don’t take advantage of their health when they have it. I was sick for three years before being “cured”, and I couldn’t do much for most of my high school career. I couldn’t go to high school dances, or any of my homecoming events, or football games. I had to quit marching band because I got too sick to move. I wish people would live life how they want, because so many of us can’t. People like me want to see others flourish, we want them to live for us. I’m thankful I can breathe normally now.

I am following a bunch of cancer survivors on Instagram and I see that they’re all living. They’re taking dance classes, they’re still traveling, but I still like to sit on my bottom and eat bad food sometimes.

It’s worth noting that those people probably do the same thing, they just don’t post about it on Instagram. You’re only seeing the “interesting” parts of their lives.

Yeah! It definitely is worth noting. I wish it was talked about more so there isn’t the idea that you have to live every single day doing something like that.

Hello! I have a somewhat grim question, and I apologize in advance. Both of my parents were taken by cancer by the time I turned 19. I grew up extremely quickly after that, being in the middle of putting myself through college while taking max student loans to not let my family home get repossed by the bank and working a part time low paying job to make ends meet.

This caused me to age very quickly mentally, and I wasn't able to relate as easily to friends about things that mattered, or should have mattered to me for my age group.

Do you find yourself more mentally mature than your peers due to facing such hardship?

Definitely. I don’t like calling myself mature but most kids who go through this end up being more mature. You’re faced with death, and you come back from it a new person. A lot of other kids worry about pettier things, and I really became so disinterested in regular teenage drama that I became even more of an outcast haha.

You’re a very strong person for continuing on even after such hardship. Kudos to you for making ends meet. If you’re not told this, you can hear it from me: I’m proud of you for pushing through hardship.

What was the best thing your friends/family/people close to you could do for you when you were going through treatment? My closest friend has been battling sarcoma for the Past 6 years, and although I've become used to most of what he has to go through, I always wish I could be doing more for him and his family

The best they ever did for me was treat me the same way they always did. They let me play my video games, they let me still talk about the things I liked to talk about. Being treated differently just makes the whole situation feel a bit more grim because you’re constantly reminded you’re facing death. If they want to bring up cancer, let them. But also let them just talk about other things. Since you are asking this question, I assume you do that already. You’re a great friend for caring this much.

But also, food really helps. If the family needs help with groceries and you can afford to, helping them shop is really meaningful. My family had to always be by my side so they never had much time to grocery shop for my little sister.

Did you get a wish from Make-A-Wish foundation? And if so, what did you wish for?

I did! I wished to go meet some YouTubers (Smosh), and they were so cool to be around. Make-A-Wish coordinators (people who plan your wish) also tend to send you little gifts that they pick out themselves. The Wish itself was 100% paid for, and I even got a debit card with a limit to use in California.

My daughter had this in 8th grade. The doctors told us that if all the cancers to get, this is the one you want. Her treatments lasted about 7 months and she made it through with flying colors. How long were your treatments? Did you need radiation?

I needed 4 months of intense treatment, and no radiation. The tumor was blocking my airway so I needed treatment ASAP

Yeah she had a huge mass in her chest as well, they wouldn’t let her lay down flat as they were afraid it would block her airway. What’s weird is she never had any symptoms or never felt it was hard to breathe. Like you, she noticed a lump by her collarbone. Her tumor responded well so no radiation was needed either. So glad you made it through!

Chest tumors can be funny that way. I couldn’t lay down and breathe properly so during surgeries I needed a nose tube.

Thank you! To your family as well!

I am so glad you are making it through and are doing awesome! You will be in our thoughts. It is one of the most lonely and toughest thing a person can have to deal with. My five year old Daughter is going through Leukemia treatment, she only has a year left of treatment. She was diagnosed last year. Just started Kindergarten, not sure of her balance, doesnt want to play on the slide and high stuff with the other kids.

My question is, what should we tell her about this when she is old enough to understand better? Right now we just tell her she's "sick" and good cells have to fight the bad ones. So I want to tell her the truth some day but don't want her to have this ongoing worry. Ya know?

Thank you so much for your advice and coming here and allowing people to ask questions.

When she’s old enough to understand, tell her the basic of what leukemia is. Be completely truthful.

What you’re doing right now is great. She’s so young, and she won’t understand quite yet. Leukemia and cancer in general is a complicated thing, and I think just telling her the truth when she’s old enough to understand will be your best bet. I wish you the best of luck, you’re all strong!

Can you describe the physical pain you had to go through? Like how intense was it, how long did it last and which parts of your body ached?

Symptom wise, I had a four inch tumor in my chest, and that caused some of the most difficult breathing I’ve ever had. I couldn’t run otherwise I’d wheeze. I got lightheaded whenever standing up because I got dangerously anemic. I couldn’t concentrate and that caused a lot of stress because I was a full time high school student. In the morning ever day for three years, I’d get terrible nausea. I used to pop blood vessels because of how much I threw up. I missed so much school because of this particular symptom. During the day, at night, and after exercise, my legs would itch like insane. I even started bringing objects like butter knives to my legs to help satisfy it but it never did. It would be incredibly painful after scratching my legs raw.

During treatment, I used to get awful bone pain because of the white blood cell treatment they gave me. It used to consist of a shot of burning medicine into my thigh each day for two weeks at a time. I also had to take steroids, huge quantities of them. When I stopped taking them, they cut me off instead of weaning me off. My body became dependent on them so I had to suffer from withdrawals multiple times. I will also never judge an addict because of this, because I know what withdrawals are like. This was some of the worst pain I’ve ever felt in my life and everyone suffering from addiction is in my thoughts. It sucked. Tender to the touch, the worst belly pain I’ve ever had, I looked like I had dirt on my face when it was just my skin. I couldn’t sleep when coming off of it.

This is just the tip of the iceberg too, cancer sucks a lot and it causes so much grief.

I got the bone aches too, had to resort to morphine at one point. The chemo was hard, indeed.

Did you get some immunotherapy for the treatment ?

Nope! Only chemotherapy. They said they might have had me do immunotherapy if things weren’t looking good but everything turned out.

Hi Im 18 too! I'm almost 4 years in remission from leukemia, AML. Do you get fears of a relapse whenever you get minor illnesses like a cold or flu? If you're in school, how do you deal with the stress of it? Im in my final year and I'm so stressed I'm afraid I'll make myself sick!

Oh man do I relate to this! I always try to keep my stress levels low in fear of recurrence. I definitely get anxious over relapse whenever I get a cold. I’m starting college in January, but during senior year of high school I just made sure I didn’t sweat the small stuff.

What was the hair loss like, if you lost any? Was it just on your head or did you become a naked mole rat? Was it overnight? How did you realise you were losing hair? How do you like your eggs?

I shaved my head the day after diagnosis, but I lost hair everywhere! It was so nice to not have to shave for half of a year. It slowly started getting patchy on my body. My buzzcut also fell out. I could pinch my fingers around it and pull out the little knobs of head.

And, I like my eggs over medium, or poached with eggs Benedict :)

I could pinch my fingers around it and pull out the little knobs of head.

Did this hurt?

Nope! It didn’t hurt at all.

What do you think of The Fault in our Stars? Was it accurate? What did it not convey that you wish it did?

Ah yes, a question I’ve been waiting for. A lot of illnesses are romanticized in media. I’m kind of tired of people tying romantic relations in with terminal/deadly illness when it comes to literature. From what I remember from the book, it did portray the cancer part pretty accurately considering the author was in contact with an actual cancer sufferer.

But, one thing I wish that media would do is represent other kinds of cancer, cancers and illnesses that aren’t terminal. You only ever really hear of the stories that include death, not survival. It gives this idea that if you get cancer, you will die. That’s not the case.

Curious, did you read the book before or after you found out you had cancer? Reading all your replies now and think you're amazing.

I read it before and after. I liked it before, but afterwards, my opinion was completely different. Romance in a book about terminal illness makes for a really bitter story in my opinion. Most literature, like I said, focuses on terminal illness rather then including recovery too. It makes people so much more afraid. It makes people think they will die if they get sick, because that is all that they see.

And, thank you very much!

I always feel a little awkward around sick family members. I don’t know if I should be extra nice to them or just treat them normally.

How did you want to be treated by people who visited you and what pet peeves did you have when people Interacted with you?

Each request will be different, but I just wanted to be treated normally. So much change is already happening that I wanted to hold on to what I knew.

Pet peeves? Honestly, people playing “Fight Song” by Rachel Platten was constantly being played for me and I got really tired of it. Unless your family member really likes that as their anthem, I’d hold back on that haha.

I was older when diagnosed but the two least favorite things I heard was "Any of us could get hit by a bus tomorrow." And "Don't forget to take care of your kids and husband " Constantly being told to stay positive was annoying too.

Yeah. I stayed positive but that’s for sure something you need to decide for yourself.

Cancer survivor myself! How does your five year surveillance look? CT scans and blood or something different?

After two years, I think it will be just x-rays and blood work because of the nature of my cancer. I had my last CT scan a few months ago, and I don’t think I’ll have any additional ones unless something looks wrong. I’m coming up on two years in a few months, hoping for the best!

Do you hate meat now?

I once knew a girl which had cancer and Chemotherapy supposedly gives an awful taste to any meat you eat, after being cured she still hates meat. I just want to know how common that is.

I don’t! My taste buds did change though, and I am pickier than I used to be. Chemo makes food taste gross in general, but sometimes it does last. I used to like more sour things but now I can’t stomach them at all.

My girlfriend is currently completing her chemotherapy for breast cancer and while the prognosis is very good, I was wondering you how deal with the anxiety of recurrence if there even is any or the general fear of this cancer or any cancer coming back. I find that there are good and bad days. Would you say that is the case?

Congrats on being Cancer Free btw! What an achievement and I wish you a long and fulfilling life away from this rotten illness.

Thank you!

Also, recurrence anxiety is definitely something I deal with. It is a day by day battle that gets better with time. I write down my symptoms and go over them every once in a while to keep track of how I’m feeling. It’s also normal to have scan anxiety after completing treatment. The most she can do is keep track of her body and also make sure she gets to her checkup appointments.

How are your parents doing? As a newish parent I've realized that nothing on earth scares me more than the thought of losing my children, or seeing them suffer. How did they cope? Did you feel like it was a burden on you to help them hold it together?

My parents cried, but I assured them I’d be okay. They were constantly worrying over me. And there definitely were times were I felt like I was being a burden to my family but then I realized that they were there for me then for a reason. Just hold hands and laugh when they need it. My parents made sure I was always comfortable and happy, it was greatly appreciated.

Hi! so about 3 years ago, my younger sister was diagnosed with stage 4 Hodgkin’s Lymphoma when she was 14. We knew her life, as well as our lives would be flipped upside down with this diagnosis but one of the biggest problems she ran into surprisingly was a lot of bullying. She’s very active on social media and posted her journey everywhere she could to help make people aware of childhood cancer. A lot of people on social media would say that the cancer made her fat and that they hoped she died. As I type this I’m thinking “oh my god. People are gonna think I’m making this shit up.” And I wish I was but I am not. When she was finally cleared to go back to school, kids constantly tried to pull her wig off of her head and make remarks to her about how she was “faking” her illness. I’m really hoping nothing like this happened to you but if it did, I want to know how you dealt with it or anything similar to it so maybe I could give her some advice from someone who knows kind of how she’s feeling because I can’t even begin to try to put myself in her shoes. And what advice could you offer me about dealing with people who are emotionally hurting my sister?

Also I’m so proud of you for being a warrior.

Oh my god. That’s absolutely awful. I’m so sorry. Your sister has already been through so much. Kids can be so incredibly cruel. Tell her to keep her chin up, she’s already so strong. For those people, just understand that they’re ignorant, and they’re gaining nothing except earning the title of “kid who bullied someone who had cancer”, that will definitely catch up with them by itself. I’d let the school know if you havent already, that’s absolutely awful. I never had to deal with that kind of thing, thank god.

I wish you guys the best of luck. You’re all incredibly strong.

Hi there! I’m 23 and I just got diagnosed with stage 4 sarcoma almost two weeks ago. I’m getting my port placed on Tuesday. How was the recovery after getting your port put in? How did chemo affect your day to day life? What was your outlook like during treatment? This has been the toughest time for me and I have no idea how to handle it. Sorry if this is rambling, thanks for doing this!

Chemo will be different for everyone, but make sure you eat as much as you can if you’re able to. Food helps your body recover.

My port surgery was almost a failure. I have strangely wired veins and they were struggling to get the tube into my heart. Half of my upper body was in extreme pain for two to three days after getting it placed. It usually isn’t like that but it can happen ^{^}

Chemo made me incredibly tired mostly. My doctors gave me a lot of medication to help with side effects, but I had nerve blockage and bone pain the most. Make sure you keep yourself clean just to help with any disease that may be lurking.

My outlook was positive, not just because my prognosis was good but because living live in despair is so sad and I didn’t want this period of my life to be solely negative.

Canada or US Healthcare??

US. Unfortunately we were in the middle of an insurance switch because of my dad’s job change, so the new insurance tried denying that they were responsible. We won that fight though.

Oof! I know cancer isn’t cheap in Canada either (some treatments or meds aren’t covered even with insurance) but I can only imagine!

It would have been around 200k if we didn’t win the insurance fight. The price to live sucks LOL

You’re worth it!

Thank you!

So just curious, if you didn’t win that insurance fight, what would your family do? I couldn’t image all of the sudden having a $200,000 bill sitting at my feet.

Honestly, I don’t know. We wouldn’t be in debt but we wouldn’t be well off either.

Just curious was this before or after the Affordable Care Act?

After

I got the same thing as a 15 year old and am now 30 and doing great. Happy that you made it through it and are doing good. How did your family deal with everything before and after?

My family of course didn’t want to believe it, but what can you do? Your kid has cancer. I wouldn’t want to believe it either.

We all just kind of moved on from it as most as we could, but we are all reminded whenever we have to go back to a doctors appointment. I get anxiety from everything involving my body and of course a lot of it is in my head. My family is always there for me during that, and it’s very much appreciated.

How do you manage knowing how awesome you are?

That’s so sweet, thank you haha. I live good knowing I can make people feel a bit better.

How is your day going, have you eaten yet?

I’m doing well! I have eaten, thank you!

Did you experience long term nerve/bone damage? My little cousin has had 3 relapses of Leukemia and has been fighting since she was 4 (she is 12 now). There are buildups and deposits around her spine making it so she is wheelchair bound, she has a feeding tube, etc. The doctors are more worried about her surviving any more treatment than a potential relapse.

She’s had traditional chemo, a bone marrow transplant, and t-cell therapy.

Just wondering if you had this kind of damage and how long it took to improve if it did and in what stages?

During chemotherapy I had a lot of nerve damage in my hands, and I used to get bad leg cramps due to nerve blockage. My fingers would kind of seize up and I wouldn’t be able to move them for a few minutes. This went on for a few months after chemotherapy ended but it did eventually get better. I still get tingly fingers every so often though. It slowly kind of dies off, the nerve damage. I can deal with tingly fingers but I am an artist so having my fingers seize up was now fun.

You realized you are gonna die soon and after some time again you realized you are gonna live long. As a person who had been this emotional road, what would you recommend suicidal people?

That each day is it’s own battle, and each day you win when you go to bed at night. Life is precious, make the change you need that will make you a happier person.

It's kinda simple question.
What were the feelings after the cancer went away?

Healthy, but anxious. Checkup scans and and any cold will make me nervous. A lot of us become convinced that our cancer is back if we feel an inkling of a symptom. But, that gets better with time.

Had cancer at 16 too, am almost 27 now. Had 2 recurrences but nothing in the last 5ish years. I still have mental breakdowns when I get a phone call from my doctor that says “call us back as soon as you can” even when it’s about something as simple as readjusting my medication dosage. I’m crippled with anxiety any time I feel a lump or bump that’s probably (and usually) harmless. Sucks man.

I relate to that so much. It’s an every day battle. Thankfully they think I won’t have any recurrences because of how well I reacted to chemotherapy but there’s always a chance. It sucks a lot.

How are you now? How has your outlook towards life and people changed?

I am fine now, but I have triggers that remind me of the hospital. Things like x-rays or even salt and vinegar chips/Pepsi.

You never really know what someone is going through, and I really learned that when going through chemotherapy. When I got my job in retail, it turns out that my boss has a young daughter who went through leukemia treatment. Even younger than me. I never would have guessed that. I digress, I feel like being kind to someone always works better than being mean. You never know what kind of thing someone is going through. It doesn’t hurt to be nice, it might make their day a bit brighter.

Life is much more beautiful. I make sure to notice the colors of the trees or how beautiful the sunset is. Since death was only a knock away, I know how precious life is. I take note of each beautiful thing I see, and I make sure I live life how I want. I used to fear death, but I see no point in living like that. We all are going to die, so living out best life is all we can do, right?

You never really know what someone is going through

So true, man. We don't really need a reason to be kind to others. Thanks for reminding me that.

Also, how has your relationship with other people changed while you were going through the treatment and now?

I wasn’t too popular in school, and a lot of kids started acting that fake nice. It bothered me a bit, but, what can you do?

A lot of people beforehand thought I was faking my symptoms and it ruined a lot of friendships. Let’s just say that those people very quickly apologized.

I feel like being kind to someone always works better than being mean. You never know what kind of thing someone is going through. It doesn’t hurt to be nice, it might make their day a bit brighter.

This is so true. My dad is fighting cancer, and he's not doing so well. This week in particular has been really rough for him. Friday night I thought I'd distract my mind by going on a first date with a guy off a dating app. We make plans, he confirms, I show up, check my phone to message him, and realize he had deleted/blocked me. No "hey sorry I want to cancel", not a single word. Just stood me up. I wish I could have told him that not only was it a dick move, but it was doubly painful to me because my dad is dying and I just wanted a few hours to forget and drink with a stranger. He could've spared 5 seconds to text me instead of making me cry in my car for an hour after. Fuck cancer. And be nice to everyone, because you don't know what they're going through.

That really was dickish. I’m so sorry! You and your family are going through something rough right now, you didn’t deserve that. I wish you the best of luck, fuck cancer! I hope you have a better day today ❤️

Hi friend, I'm a Lymphoma survivor as well!!

How well informed are you about long term / secondary issues? Depending on the specific treatment you had for the Lymphoma, there might be issues to consider down the road when you're 10+ years out. I know that in the immediate aftermath of achieving remission, it's one of the last things people want to consider. But if you ever want to chat about what could come next, hit me up!

I had ABVD chemo + mantle cell radiation.

I'm 15 years post treatment and the last several years I've had a bunch of secondary issues pop up. The biggest concern for me now is breast cancer. I've had melonomas removed from my skin twice, likely a result of radiation. I have dental issues, again, radiation. My thyroid doesn't naturally function anymore (radiation) and I've been on thyroid hormone replacement meds for over a decade. I have nodules in a lung that developed during radiation, which now requires periodic follow up to ensure they don't grow (so far they haven't). My veins got pretty sclerosed from trying chemo via IV at first, thankfully I had a port placed and that saved my veins for sure.

I'm not trying to scare you and I know this is a celebratory time.

Cancer is super complicated, though. I shut down and just became super goal oriented and compartmentalized everything during treatment. I was in school, working, and undergoing all of my treatments... It was a super busy time. The psychological aspects of what I endured didn't hit me until I was a little ways down the road. Therapy has been very helpful, and I'm even in trauma therapy now to help me process aspects of cancer that I still haven't dealt with.

If you need an ear, a shoulder, or want to talk about correlary issues worth considering, just let me know.

Thankfully, I didn’t need radiation or receive radiation outside of the regular scans, my biggest concern is a secondary Leukemia down the road, but that’s about it. Thank you for informing me though, it’s always good to have extra information!

How big are your medical bills?

Thankfully I had insurance, so not that big. I needed to mostly put for hospital food and other expenses like that.

My dad is getting ready to start chemotherapy next week. I don't know what is and isn't allowed to keep him busy during treatment. What, if anything, did you do to keep yourself entertained/busy?

I could do mostly anything that wasn’t physically taxing / dirty. If it’s clean and it’s a sit down thing, I could do it. There isn’t much limit to what you can/can’t do! Nothing stressful of course!

How did you originally diagnose it? What were the actual symptoms?

I went into the ER after midnight because I stopped being able to breathe. They found a 4-inch tumor surrounded my lungs, heard, and airway on an x-ray. I got my official diagnosis after they did a biopsy on a diseased lymph node.

Edit: I hit send before adding symptoms haha sorry! Itchy legs, nausea, lethargy, and anemia were all symptoms.

Does lympoma affect fertility? I'd always wondered if people could have kids after cancer treatment.

It could, theres a chance that I won’t be able to bare children.

A fellow teenage survivor! Congratulations I'm so happy you've survived 100% of your worst days. I was in remission for 3 years but the docs believe I've got my bowel cancer again. My question is do you fear getting it again? Because I did, I was paranoid - I avoided having boyfriends or girlfriends as I didn't want to hurt them if I got it again. Do you also suffer with the post cancer paranoia or am I just crazy? Sending my love your way btw <3

Sorry for formatting: on mobile eek

I suffer from that paranoia too! Don’t worry about having anxiety about it. I think that’s all pretty common haha!

I'm proud of you! Congrats, dude! Anyways, here's my question: What was the first thing that came to mind when you were diagnosed?

“Holy shit, but I’m not surprised” since I had been sick for quite some time leading up to diagnosis.

do you have a family history of cancer?

Yes, colon cancer and brain cancer.

What do you value the most Now? What is important to you now in terms of priorities?

My happiness and health is always first. I always make sure I do what I want to do because I don’t know how much time I have left.

I'm studying to be a PA, what is something your team did well (beyond giving medications) and what is something you wish your healthcare providers had done differently? Thank you so much!

They always made sure I had someone to talk to if I needed it, they always made sure I was able to be distracted if I was in pain. Emotional support is the best thing a team can give.

Differently? Well, the team themselves didn’t necessarily do anything that should have been different. Things that were annoying were having to get up super early for a weigh in, waking up to needing your blood pressure taken, just the typical stuff that needs to be done. It isn’t their fault, I just wish it wasn’t needed as much as it is haha

How you doin', man?

Really good! You?

Hey mate! We’re hodgkins buddies! I had it when I was 13.

How have you been dealing with all the post diagnosis tests? I find myself normally chill about them but then entering like a day of anxiety every time I actually take one.

The scans freak me out the most. Everything else I can handle. The scans remind me of my first diagnosis which is why it can get hard for me.

25(m) diagnosed cancer last year, how do you deal with “beeing the cancer guy”?. Some people just treat you like an imbecile that needs help on everything. (Not doing any treatment atm)

Just tell them that you’re still capable, you don’t need help with everything. Being straight up honest worked best for me. I got frustrated with that too.

I'm sorry I'm late asking but pls do reply if you can. Also sorry if this question seems just stupid but how do people in your surroundings like friends and those with whom you wanna go out react to you being a survivor?

It doesn’t really come up often, because I surrounded myself with people who don’t pin me as the cancer girl. They know it happened but they treat me regularly.

How did your peers respond to the news? Did you continue attending school during treatment?

My peers all kind of became shocked I guess. A lot of them didn’t believe me when I was talking about my symptoms, so figuring out there was actually something wrong with me was weird for them. I only was able to go to school for two days the rest of that year, I was exempt from everything else.

Did you get a lot of support/good care or is there something in the system we need to fix?

The care was fantastic, all staff were incredibly kind. Everyone is tended to with care, and they make sure you’re feeling good. My hospital had free therapists on staff on top of everything, so I could talk out how I was feeling. There’s something special about children’s hospitals!

In what country do you live in if you don’t mind me asking?

USA

You mentioned in a previous comment that your doctor ignored your symptoms for a year after you reported the lump in your chest. Did you feel he/she was negligent in doing so? Did you get a second opinion before your trip to the ER? Do you think an earlier diagnosis could have benefitted your prognosis?

Yes. Definitely. This doctor blamed everything on my anxiety. I ended up switching doctors before diagnosis and this doctor immediately knew something was wrong. I think my tumor would have been smaller had my concerns been considered.

Did this put anything in perspective for you?

Life is precious, and I will always cherish it. It’s cliche but after nearly dying, I realized how beautiful everything is.

Now, in someone else's comment, you said you were depressed. Were you suicidal? And did that change once you had/beaten cancer?

Edit: If this if to personal, you don't need to answer.

I was severely depressed and had suicidal thoughts but didn’t ever plan on pulling through with anything. Those thoughts are merely a memory now. I still have depression but it doesn’t get nearly as bad anymore.

How did you stay caught up on school? Missing just a week means weeks more of catching up for me, did you have your teachers come to meet with you or were you exempt from assignments? I cant imagine the stress that would've brought

I was exempt from almost everything, I missed the last third of the school year. The only thing I had to take was me Economics exam, which I ended up acing a year later.

Did people/ your friends in school treat you any differently?

Yeah. I wasn’t popular before getting sick, so everyone acted that fake nice to me. People that never cared suddenly started caring. The adjective to describe me was “the sick girl”, I made sure to only keep contact with those who I knew cared about me beforehand. It added stress knowing that they only cared about me because I was sick. I’ve always been the same girl, a sickness shouldn’t dictate how you treat me.

Did your illness lead you to realize what was most important to you in your life? What was it?

Yes. Cancer made me realize that my happiness and well being are so important. If I am not happy, and I’m not well, then I can’t live how I want. I am my own priority. I love helping people, but I learned that I needed to help myself before helping others, otherwise I’d never be able to help anyone else.

Firstly thank you for sharing your experience you are a fighter and stories like these help other folks with cancer have hope.

Asking for my relative who suffered from breast cancer and now is treated and cured. She always feels the cancer will always come back and this fear has taken a toll on her mental and physical well being. How are you dealing with this fear ?

Again thank you for sharing.

I mostly just keep track of my body, and make sure I actually make it to my checkups. Those are extremely important and give me peace of mind. Anxiety will fade with time, it’s an every day battle. Make sure she is able to distract herself with fun things and family, that always helps me.

What are some inner struggles or things you had to learn to cope with when you found out that you had cancer and during your recovery phase?

Dealing with people who suddenly started caring. I was bitter about that, a lot of people in school who never cared suddenly reached out. I was the same girl. The cancer didn’t change me.