Ask a childhood cancer survivor

[cosmowanderer]

September is childhood cancer awareness month (and the 15th is my birthday).

When I was six, I was diagnosed with germination cell cancer of the ovaries. It was in my chest cavity, collapsed my left lung, and pushed my heart into my right lung. Doctors told me this type of cancer is so rare that there is an average of only three diagnosed cases a year, and of those three, usually only one survives.

Since it's so rare, the type of chemo I had was experimental at the time. Doctor's didn't know if it would save my life or kill me. Thankfully, though, I'm now going on 23 years of being cancer-free.

[Thumpalumpacus]

Good stuff! Have there been any long-lasting effects from your illness or treatment?

[cosmowanderer]

Good stuff! Have there been any long-lasting effects from your illness or treatment?

Yes, likely more so from the treatment than the cancer itself. The biggest one as been issues with my reproductive system and hormones. Getting pregnant (if I decide to have kids) will be unlikely to happen without medical assistance, and I have irregular periods. I started going through premature menopause when I was 17; my doctor put me on birth control to stop it, and diagnosed me with polycystic ovarian syndrome. I've also had some thyroid issues, and struggled with obesity for most of my life. I had lost a ton of weight while going through chemo, so I had to put a lot back on to prevent other complications, and sadly never stopped putting it on... my parents were very concerned since I had no appetite at all, so I was allowed to eat whatever I wanted since I was such a picky kid. (My parents did their best to instill good habits, but a lack of knowledge was a hindrance in that area.)

I was prediabetic a few years ago and my PCOS was at its worst—I was at my heaviest. My doctor told me I was unlikely to live to see 40 at the rate I was going, since I was having obesity-related health issues on top of the late effects of the treatment. (My life expectancy as a childhood cancer survivor is around 60-65 anyway.) It motivated me to get myself into gear, and I dropped 75 pounds over about 10 months. My doctor told me that due to the hormone issues and thyroid problems, the effort it takes me to lose 1 pound is the same effort the average person would use to lose 5 pounds. Health is important to me, and I'm currently two weeks away from completing my certification as a personal nutritionist, and one of the things I plan to do is give services for free to those who need it but can't afford it, since I feel strongly that health shouldn't be a privilege.

After dropping the 75 pounds, the PCOS cleared up and my hormones and menstrual cycle are stable now, but I have to be careful to keep them that way. I've put back on about 20 pounds due to recent stress, so I've got 35 I want to lose still.

I also suffer from severe chronic depression, which I've been told is very common in childhood cancer survivors (and I would assume most cancer survivors in general). I currently have it under control, partially because I work hard to keep myself mentally and emotionally sound, and partially because I've learned a lot of foods I am sensitive to (I don't eat meat because my body is sensitive to the hormones in a lot of it, and I'm too cheap to buy the organic stuff—vegetarian is just an easier choice for me) that contribute to my mood and my physical health.

I'm also never allowed to donate blood, tissue, or organs to living individuals since my treatment was not FDA-approved back then. That makes me sad since my life was saved by blood donors and I can't pay it forward; but I am going to donate my body to science, so at least they'll allow me that.

[Thumpalumpacus]

Yeah, my son's mother survived breast cancer at the cost of autoimmune issues, diabetes, and depression. Sounds like you've had a rough row, but kudos to you for tackling your issues head-on.

[c172]

What do you think of the awareness movement? Are people still becoming more aware? Is cancer much closer to being cured? Has wearing pink really helped? What about the donations? What do you think of the term "Big Cancer"?

One main question and several possible sub-questions. Answer as full or brief as you like (or not).

[cosmowanderer]

What do you think of the awareness movement? Are people still becoming more aware? Is cancer much closer to being cured? Has wearing pink really helped?  What about the donations? What do you think of the term "Big Cancer"?

One main question and several possible sub-questions. Answer as full or brief as you like (or not).

I think awareness is great in the sense that people are becoming more likely to get checkups and check themselves at home regularly. I think, though, that a lot of people still have the "it'll never happen to me" idea, and so those people don't get themselves checked. There's a lot that can be done when its detected early, and that's important in a lot of cases. I do think people are becoming more aware, but I think there's still a lot of people who don't know what to look for or what their risk factors may be, or what they can do to reduce their risk of cancer.

I'm on the fence as to whether or not I think it's close to being "cured." There's so much happening as far as research goes and new treatment development, but rates of cancers are still increasing, so I think we need to focus more on preventative measures than we currently are. Smoking, poor diet, lifestyle, etc can all be contributing factors to cancer. I remember a statistic I saw (and since I can't remember the source, please take this only as anecdotal) that said somewhere around 80% of cancers are preventable. So while we're making a lot of headway in treatment, we're losing the battle when it comes to number of cases. I also remember reading (and again, I don't remember the source, so this is only anecdotal) that just 50 years ago, 1 in 30 people would be diagnosed with cancer in their lifetime. Today, it's 1 in 3, so the rates have increased tenfold, which is really scary.

As far as wearing pink goes, I think it's done a ton of good for raising awareness and donations towards breast cancer, but the downside is that people generally become focused on one issue and other health issues fall by the wayside. Breast cancer is a huge issue, but so is prostate cancer, liver cancer, lung cancer, heart disease, diabetes, and so on, and we should be thinking about them as much as we are about breast cancer. I'm by no means trying to dismiss breast cancer, because it is much more common than anyone would hope for, but I think it goes back again to preventative measures and overall health in general.

As far as donations go, I'm not sure how I feel. I've heard so many stories about the donations helping people, and I know there are places like St. Jude's that don't charge patients that can't pay (or so I've been told; I've never looked closely into St. Jude's operation), but I've also heard of some of the non-profits using more money towards advertising, merchandise, and events rather than actual research or patient care.

Did I cover everything? Hehe.

---

Yeah, my son's mother survived breast cancer at the cost of autoimmune issues, diabetes, and depression. Sounds like you've had a rough row, but kudos to you for tackling your issues head-on.

What's sad is that most of those are likely to be the result of the treatments instead of the cancer itself. Chemo and radiation therapy are quite harsh on the body. I hope your son's mother is doing well now, I'm sorry to hear the issues she's had.

Thanks, I used to not treat my health like a priority when I was younger (not that I'm very old now), but as I've matured I've really learned the value of being healthy.

[BrokenQuill92]

Does hair really come back pretty after chemo?

[cosmowanderer]

Does hair really come back pretty after chemo?

It comes back different. I know a handful of cancer survivors, and all their hair came back different, too. One of my lifelong friend's mom had breast cancer twice, and her hair came back different both times.

Before cancer, I had thin, blonde hair that was straight/slightly wavy. After cancer, it came back thick, dark, curly, and had a little bit of a frosted look. The frosted look faded after a couple years or so.

Side note... my eyebrows stayed super light, and remain so. And I never understand why movies always have cancer patients with eyebrows, haha.

[brewer]

A great big congrats! 23 yrs is fantastic. Kudos to your MD's also.

6 yrs old, man, how freaking scary was that for you? Plus experimental! Tell us some more about what it was like. Surgery, surgical recovery, chemo (horror) side effects, supportive treatment, length of active treatment? How long before you were anywhere close to getting back to normal childhood experience? What childhood experience(s) did you miss?

Professional curiosity, don't answer if you don't want.
1. Actual location of tumor.
2. Size of tumor removed.
3. Remember any specific pathology details?
4. Chemo regimen (specific drugs, low/high dose, # of cycles)?
5. What is the follow up procedure and frequency?
6. Do your MD's feel that, for the most part, you're in the clear?

Glad your the one. Otherwise we wouldn't be having this conversation.

Thanks.

[cosmowanderer]

A great big congrats! 23 yrs is fantastic. Kudos to your MD's also.

6 yrs old, man, how freaking scary was that for you? Plus experimental! Tell us some more about what it was like. Surgery, surgical recovery, chemo (horror) side effects, supportive treatment, length of active treatment? How long before you were anywhere close to getting back to normal childhood experience? What childhood experience(s) did you miss?

Professional curiosity, don't answer if you don't want.
1. Actual location of tumor.
2. Size of tumor removed.
3. Remember any specific pathology details?
4. Chemo regimen (specific drugs, low/high dose, # of cycles)?
5. What is the follow up procedure and frequency?
6. Do your MD's feel that, for the most part, you're in the clear?

Glad your the one. Otherwise we wouldn't be having this conversation.

Thanks.

Being only 6, I didn't understand most of the technical side behind it, so I don't remember the details, but I'll do my best. (I know my mom still has some files with more info, I'll see if they're easily accessible next time I'm at my parents' house.)

1. It was in my chest cavity, between my left lung and my heart. When I was diagnosed, it had collapsed my left lung and was pushing my heart into my right one. My pediatrician wasn't doing anything to help, just basically making guesses as to why I was so sick. He guessed a dairy allergy, needed more sleep, things like that. He never actually ran tests or anything, so by the time I was diagnosed it was pretty huge.
2. I know there's actually a photograph of it next to a medical ruler, but I don't remember what the measurement was.
3. I can try to get more details next time I go to my parents' house; I don't mind answering any questions you have. (Maybe I should bring that info to my place so I have it on hand, haha.)
4. I was diagnosed in early July. I remember watching 4th of July fireworks out the hospital window with my parents and sister sitting in the room with me. It was a local hospital, and then I was transferred to UCLA Medical Center a few days later because they have a wonderful pediatric oncology unit. I don't remember the specific drugs or dosage, but I was in the hospital for five or six days in a row receiving chemo treatment, then I'd be home for (I think) about 10 days, then back in to the hospital. Before they put in the PIC line, I had to have blood tests every morning and night when I was in the hospital. I also remember medical students coming in from time to time and asking me questions, but I would usually just be like *shrug* "Wanna play Barbies with me?" There were often trips to the ER between visits to UCLA. I had to take doses of magnesium two or three times a day, I'll never forget that. It was in liquid form and it was the most disgusting thing I have ever tasted. I used to fight so hard against taking it that the neighbors almost called the cops one night because they thought my parents were abusing me. I had surgery in late October or early November, I don't remember which, just that it was around Halloween (I went trick-or-treating around the pediatric unit with the other kids). Then towards the end of December I had another round of chemo just to make sure.
5. After that last chemo round, I had to go in for checkups (full blood work, x-rays, etc) every month for a year. Then, it became every six months for 2 or 3 years, then once a year. I skipped a few years, but am trying to get back in the habit of going every year. My last one was July of 2014, so I'm a little overdue, but my last one was the best results ever, and my health was at the best it has ever been.
6. Since it's rare and they don't yet know the long-term effects, they won't tell me I'm "in the clear," but I haven't had any signs of relapse at all. My main pediatrician told my family that the doctors will always be hesitant to label me "cancer-free," but I'm doing pretty well. The long-term side effects are manageable as long as I stay on top of myself. I'm even pretty at peace with the knowledge that my life is likely already close to half over (since my life expectancy is around 60-65 because of it), but I'm having one hell of a ride so I don't let that get to me.

I've got tons of memories, so this may be a bit of a long post, but I'll share a couple of fun/interesting ones.

* My family made games of me losing my hair. We'd run our fingers through it and whoever got the biggest chunk was the winner.

* My dad let me shave his head so I wouldn't be the only bald one in the family. We put a chair out on the lawn and invited all the neighbors over, and there were a couple of neighbors who shaved their heads, too. I felt so special! 

* One time, we took my sister to get her hair cut (after I was already completely bald). I wore a cute hat when we'd go out sometimes, and I was this day. Completely unprompted, I walked up to the woman at the counter, took off my hat, and said "Just a little off the top, please." She and my parents busted up. Apparently, I had a sense of humor back then, too. 

* There was another time I was at the grocery store with my grandma (sadly, she lost her battle to cancer four years later). I wasn't wearing my hat that day, and there was this little preteen boy that was following us around the store, just staring at my baldness and making rude faces. My grandma and I tried to ignore him, but he kept following and staring. I started to feel really self-conscious and my grandma could see it. So she turned to the kid and very aggressively said "That's what happens when you don't eat your vegetables!" The kid's eyes got as wide as saucers and he ran off. I bet he has never left a veggie uneaten since then, haha.

* Since I was so young, I didn't understand what cancer was or what it meant that there was a tumor inside of me. My parents, trying to help me understand why I was sick and needed so many doctors, told me that there was a "big, mean, ugly bug" inside of me. They said it was trying to hurt me, but that the doctors were superheroes and they were going to get rid of the bug. We referred to cancer as "the bug" the entire time I was going through treatment. It helped me understand, but to this day I am absolutely terrified of all bugs, insects, and creepy crawlies. Sometimes it drives me crazy that I'm so afraid of them since I know how illogical it is to fear them so intensely, even simple things like moths or beetles, but I can't help it. I try to make fun of my fear, and thankfully most people are very understanding when I explain to them why I freak out about being touched by bugs, haha.

* I had (well, I still have him) a plush bear named Zipper, that was given to me as a gift from my cousins when I first went into the hospital. My dad made a funny voice for him and would tell stories through him, and made up this entire life for Zipper. One of the things I remember is that Zipper "said" that bear toots smell like roses, and would sing this little song about it, and one of the lines was "I'm sending you a big bouquet of beaaaaaar farts!!"

It was a pretty memorable experience, both the ups and the downs.

When I went back to school, I was still bald, very pale, and quite thin. I was cleared to go back, but I didn't look healthy yet. I used to love school, so I begged my parents to let me go back instead of keeping me on home study for the rest of the school year. But since I looked so ill, I was bullied pretty harshly. Kids would make fun of my bald head, and I got called all sorts of names. I used to go hide behind a tree at recess and lunch so I wouldn't be seen, but some of the kids would come find me to call me alien, monster, and other words 6-year-old me didn't understand. Before, I had been a very outgoing kid with a lot of friends, but after that I became incredibly shy. When we moved to a new place and I started a new school, I had grown my hair back, put on a lot of weight (I was obese at that point), and didn't look sick anymore, but I was still bullied because I was the fat, quiet kid. I remember being as still as possible when I was in class, terrified that if I moved I'd accidentally make a sound, and if I made a sound, then people would look at me. It took me a long time to get over that, and sometimes I still deal with some social anxiety, though it's not that bad anymore.

My therapist says I was likely depressed back then, and I think she's right. I had no interest in extracurricular activities because of the social anxiety and depression, so I didn't get involved in anything. I think if I hadn't had cancer, I probably would've done more things like dance classes, sports, and such. In high school, I started doing play production, and that really brought me out of my shell and gave me a place to be me. I don't know if I feel like I really missed out on things, though—if I hadn't had cancer, my life would be so different, and not for the better. My parents would've divorced; my dad was about to serve papers to my mom and then I was diagnosed, so he decided to hold off until I was better, but through the process of it all, they supported each other and fell in love all over again, and are going to celebrate 33 years together soon. I think I was a brat of a kid, and I don't think I would've turned out to be a good person if I hadn't had cancer. I was very selfish, and if my parents had divorced, I probably would've just used that to manipulate them to get what I wanted. And, my parents told me after I was in remission how close I came to dying, which (between that and the other health issues) made me deal with my own mortality at an age much younger than most would deal with the idea of mortality. That has definitely had an affect on who I am as a person.