Germ cell, my story so far.

Hi, my name’s Ellie and I’m 19 years old. I was in the middle of my first year at university and was having water infections and unexplained fatigue, days where I literally stopped being able to do anything from exhaustion. After about 3 times of being precribed antibiotics for the infections, I decided to push for more explanation to why I was getting ill all the time. A GP found a lump in my abdomen and suspected it to be a dermoid cyst, but on the 23/03/11 an MRI revealed that I had a 14x11x10cm germ cell tumour on my left ovary. A CT scan and biopsy showed that I also had a smaller tumour on my right ovary (approx 4cm) and that the cancer had spread to my lymph nodes. Germ cell is a rare cancer affecting mostly younger women, only 1% of ovarian cancers are the same as mine.
I suspended my studies (hope to start my first year of uni again next year) and moved out of student halls where I had lived whilst at uni, to come and live at home with my parents while I undergo chemotherapy. I’m 2 courses into a projected 4 x BEP 5 day regieme. It’s definitely tough, I’m getting all the usual side effects including tinnitus, nausea, aches in my lymph nodes, neuropathy in my legs, hairloss, mouth ulcers and “chemo-brain”. I’m also experiencing the menopause complete with hot flushes because my ovaries have been “put to sleep” with the hope that I will recover fertility after treatment. There haven’t been any serious hiccups in the treatment so far. There’s currently a little concern about my lung function and possible damage by bleomycin (I got a cough 3 weeks ago and it still hasn’t shifted), and I had a low white count on a check up in my first round so I had a 5 day course of blood boosters, which gave me quite a lot of pain in my legs and lower back. In the second round when I was in hospital recieving chemo, they spotted I get a very low heart rate at night (about 40bpm) and this is also being checked out.
Even though this whole experience has completely upturned my life I remain positive. One thing I did before I went for my first round of chemo is raise some money for Cancer Research UK and awareness for germ cell and ovarian cancers by cutting my hair into a mohawk! I came to this website to try and meet other people in my situation and have people to talk to who can really relate to all this. I’m always up for a chat!

I also have a personal/cancer journey blog at :)

May 21, 2011 by  
Filed under Community

  • Molly Emerson

    Hi Ellie, my name is Molly Emerson and I `m 14 years old.I also have ovarian cancer. In June I broke my jaw and had to have surgery to fix it. The day of my jaw surgery a doctor and social worker came in and told me I was pregnant – but I wasn`t. My mom pushed for an ultrasound and that`s when the doctors found a tumor on my right ovary. Soon enough I had surgery to remove my right ovary and fallopian tube. I started chemo July 15th, 2011 and ever since I` ve felt like a worn out pair of sneakers and have had no real appetite. At first when I found out I cancer I was okay with it, but now I`m starting to think “Why is this happening to me – I don`t want to have to worry about this cancer coming back every year of the rest of my life. Please help me – I need support.

    • Juanita Varela

      Oh, sweetie, your not alone :) My name is Juanita , I’m 17 and I was diagnosed on june 14th with stage 1C ovarian cancer dysgerminoma germ cell tumor.. At first I felt like my whole world was collapsing. Like being under tons and tons of bricks, and it was up to me if I was going to pick them up or not. I only have a quarter of my left ovary left, you are very lucky to have your full left ovary :) I started chemo on June 29th, 2011… Right now im receiving my chemo while im writing this.. I’m on my 2nd round ! Remember to always stay positive and and stay strong! Your not alone! If you ever need someone to talk to I’m here

      • Ellie Cohen

        Hey, it’s me again. Thank you for responding. I wish all of you the best of luck. Chemo sucked and hopefully I’ve now seen the last of it. I’ve had a couple months recovery, and on Wednesday (7th September) I’m having an operation where the surgeon will assess and remove everything suspicious that he finds. This will definitely be at least one ovary and some lymph nodes, I could possibly lose both. I’m feeling kinda scared at the moment, because although my Ca-125 count dropped completely to 6, down from 900 or so…I feel like the cancer might have come back a bit. I really hope not, because that would mean more chemo, and my degree course likely going out the window :(

    • Ellie Cohen

      This reply is very very late, so I guess it’s mainly to say I hope that you kicked cancer’s ass and if not yet then very soon xx

  • Molly Emerson

    Thanks Juanita – for everything. Currently I`m having one of those “better” days where I have more of an appetite and have more energy than normal. While you`ve been on the chemo have you craved any particular kind of food? I crave really acidic stuff like tomatoes(& their by — products)and vinegar on top of my food. The only sweet thing now that I kinda like is soft – serve icecream. How long is your chemo? Mine is 3 cycles and I already finished one so basically my last chemo treatment is Labor Day weekend. At least I can lay down on my couch and watch the Little League World Series and the Regionals.

    • Juanita Varela

      Your so very welcome Molly ! I do have many many cravings, and I kind of go insane if I don’t have the food right away :) I am a sugar fiend but i think i should lay off some times haha… My chemo is 4 cycles, I am on cycle 2! Good luck on every thing !

  • Robia

    I possibley have ovarian cancer. I am 21yrs old. I have 2 children, ages 3 and 4. I have been having pelvic pain, bowel changes, bladder changes, lower back pain, hip pain, and nausea. My doctor could feel a mass near my left ovary. My ca-125 came back at 150 and I had an ultrasound last week and I’m waiting for my doctor to return my call.

    • Molly

      Well, Robia the only thing I can say is “I hope you don`t!”. My prayers are with you and your family.

  • Iris

    Please, contact with me , if you want, of course. My name is Iris, i’m spanish teenager and i have a similar problem.I would like to talk to you

  • Nicole Memolo

    Hey guys I’m nicole and I’m 15 with the same cancer …Im honestly so grateful for every single thing i have ! Some people are just so lucky lucky ! It’s a gift to be healthy ..see most people really don’t know what happened to me or how it happened .. But that’s because it all happened so fast .. And it was painful, every little bit of all started in January &February I started getting really bad back pains and i wasn’t able to sleep much.. Some nights not at all. I would go to school tired as hell,go to rehearsals and lay down , not dance , not rehearse I couldn’t it hurt so much …and then in March I started getting really bad stomach pains and I was always in pain and I’d go to school and I couldn’t even sit it was so painful.. Kids would laugh if I laid on the floor and ask what was wrong and I would just deal with the pain .. I was always good at that ..I had a lump in my stomach and the doctors asked me if I was pregnant and I was just like HELL NO.. Like I’m still a virgin .. That would be impossible .. So they treated me for constipation and gave me all this medicine for it .. And it wasn’t working .. Nothing was happening .then one night me and my sisters just decided we’d spend our Sunday night at the park little did we know it would be spent at the emergency room…I went on the swing and as soon as it went up my stomach turned and I just dropped to the floor .. I couldn’t stop screaming and moaning that whole car ride in complete pain.. So we went to the hospital and they demanded an X-ray immediately .. Once they got it back they sent us to another hospital because they found out that it was the tumor and it was the size of my whole stomach crushing my intestines,bones..etc.I couldn’t even eat I always felt full because there was no room for food !The size of a 5 month old baby ! Like I thought I was just getting fat..And then they did a biopsy to see if it’s cancer and of course it is and it’s 3rd stage Ovarian Cancer …it’s called ‘dysgerminoma’ its a rare form of cancer too .. I’m just lucky let me tell you .. and the doctors said I could have had it my whole life one even knew !

  • yen mendoza

    hi, iam yen, 26 years old from the philippines. i am a 4th year lawstudent but needed to stop because of germ cell cancer. i am a very active individual, i can do things at the same time. a usual day for me is waking up lat beacuse i have to study till dawn, eat my brunch, go to school, recite all my readings, sometimes i have to go to court to defend my client. usual 6 days regimen. but things changed when i failed to get my diploma from my former school, i called it the biggest injustice of my life. i kept of thinking about it cause i know i did good but they refused to give my diploma. i had to move out of school ampnd transfer to other school just to finish my studies and take the bar exams the follwing year. May 2014, i felt something inside my lower abdominal area. i felt it on the part where the doctors surgically removed my appendix 5 years ago. it kept on growing bigger and bigger. i became prone to infections, fever, diarreah. august 25, i went to our family doctor because i felt something big inside my tummy. the strange thing is that i am only recovering from a urinary tract infection (UTI). UTI is a my common disease when i get stressed. but this time the feeling is strange. the doctor touched that part with her hands and she felt that something is growing inside. she said that it could be 3 things: i am pregnat, there is an ovarian cyst or i have myoma. she stricken out the myoma idea cause im too young for that, i could not be pregnant cause i had a period a week before my UTI. she asked us to see a obgyne. we, me my mom my bf my auntie, went to manila where best hopitals and doctors are, to see an obgyne.

    • yen

      i had with me my ultrasound picture. the picture shows a mass on the right ovary, 6cm in size, the obgyne asked me to undergo bloodtest, interrectal ultrasound and ultrasound again. the bloodtest shows that i am negative in ovarian cancer but the ultrasound shows that there is a tumor. they had to remove the tumor a week after, september 8, 2014 and to their surprise it is not located on the ovary but on the part where they removed my appendix. plus they had to remove 1 foot of my intestine because of 11 lymph nodes present but thank God, they are all negative for cancer cells. the tumor is called yolk sac tipumor with 12 cm in size and almost 1 kilo. thats the reason why i look 4 mo ths pregnant the whole week after i consulted the obgyne and before the operations. now, im undergoing chemotheraphy, week 3 of 2nd cycle. the doctor uses BEP and planned to have 4 cycles weekly. 1st week of chemotheraphy, 6951 AFP cells were present plus a lymph node on cardio vascular part, 2cm in size. i felt the dizziness, nausea, difficulty in breathing which i called “minimheart attack” which lasted for hours, back pain, adbominal pain om different part especially the part where they removed the tumor, head aches, vomiting. i also had blood booster because of low RBC and WBC count, to this date i already had 6 :( so painful. now, im feeling good. hope to hear from you and im willing to share my experience during chemo days

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