Hello everyone.

Im sitting here, on my bed. My hospital bed.
In a department with 23 people over 60.
I am 23. 23 years young and diagnosed with testicular cancer.

Not in my testicles no. in my bonemarrow lymphs lungs and kidney.

Back in march 2015 i went to the emergency doctors post because i collapsed at work. they tested my blood and told: go home get some rest.

The same night i collapsed again. My girlfriend rushed me to the hospital. stayed there for 3 days. A week later she did a pregnancy test. the test led to nothing. i did one aswell. and it tested positive.

On the same day i was transfered to a diffrend hospital and the day after my semen got frozen and chemo started. 4 terrible months later they said it wasn't gone yet and they had to remove 2 lymphs ranging from 3 to 15 cm. Surgery started at 9:00 and ended at 18:00 they hit my aorta and a vein surgeon had to fix it.

6 weeks passed and i went on holiday to germany everything was great i was having the best time of my life untill i woke up 4 days ago with pain in my shoulder. I called the hospital and drove there 15 minutes later.
After a quick scan they told me to stay. i didnt know what was wrong untill a scan later that evening. i had a lungembolia and the cancer returned.

So here i am writing this behind my laptop on a hospital bed. sweating and in pain from an infected vein and the cisplatin chemo running to my veins.

I'm not asking for donations. im asking to help the young people get past this time as fast as possible. the money will be used to buy art supplies for the family room in the VU medical cancer center in amsterdam.
Most people ask how I found out I had cancer. I went to the doctor 7 times and they couldn't figure it out. Girlfriend did a pregnancy test and so did I for fun.
Result: mine tested positive hers didn't. That's how I figured it out

Heres some more information: http://www.cancer.gov/types/testicular/hp/testicular-treatment-pdq#link/_390_toc

I have nonseminoma testicular cancer.
Scar from surgergy:
http://imgur.com/n2NZw4a AFP levels since start:
March: 150.000
May: 40.000
June: 35
July: 11
September: 0!
Current: 19
As requested:
My gofundmepage to help decorate the family room in the VU medical center. I will post pictures later of how it looks now and what i will buy with the donations.

[b]For cards: [/b]

De Boelelaan 1117
1081 HV Amsterdam Department 3C
Room 44

Here's pictures : http://imgur.com/a/3YaKD Injection: http://imgur.com/NaKnLhw

Edit: Eddited the FP a little bit, grammar ect. Edit2: Editted the FP again story should be more clear now. grammer formatting ect.

Comments: 160 • Responses: 51  • Date: 

justanothercook18 karma

I'm sorry for your diagnosis - cancer is shitty, and I hope you get better. Unfortunately, with any advanced cancer, it's worth asking:

Have you discussed end-of-life care options with your doctor and any important people who will be consulted during decisions (e.g. girlfriend, parents)? Also, have you made a will and filled out a health care proxy form?

If so, how was that experience? I was not prepared to do that stuff at age 23, and I'm curious what it was like.

If you haven't done it, I'd highly encourage it - it's awkward and painful to think about, but if you make your wishes known, you will save your loved ones a lot of trouble if you aren't lucky enough to survive. Even if you don't have much, it can simply be a comfort to people to know that they are acting according to your actual wishes, rather than what they believe your wishes are (especially if 2 important people believe different things about what you want). It can also bring you closer to people, as it can open the door for people to discuss their worries and hopes during a difficult time when they otherwise might not know that's ok.

Voltii13 karma

I did discuss it. Not with a lawyer or anything but with my girlfriend I no longer have contact with my parents / family and I only have a few good friends so I'm pretty sure everything will be fine on that regard. Still should consult a lawyer and / or marry I don't want my family fighting over my in heritage so I consider inheriting it all to my daughter may I pass I didn't expect it to come back that fast but it made me realise I should really get it solved sooner then later

Voltii12 karma

Picture from surgery : http://imgur.com/n2NZw4a

rftvcdd33334463 karma

Is there anything that you want for Christmas? Set up a go fund me page, I will pitch in. =) Stay strong.

Voltii5 karma

gofundme.com/f8bg5bfw Made the page. decided to raise money to redecorate the family room and buy some art supplies to support other young people fighting cancer.

Voltii1 karma

Get better :(
But to be honest. theres a family room next to the department im staying at. im trying to get some books / movies / painting supplies / pencils for the room all the books are terribly outdated and if im no longer there i hope people can enjoy something i leave behind. I will setup a go fund me page and if you want you can donate something for the room. i will post pictures later i can't leave my room while on chemo.

not269 karma

Prior to finding out from the pregnancy test, did you have / feel any other indication that something was wrong?

Voltii20 karma

Yes. Terrible pain in my left leg and later in my back as well barely could walk. Also had some pain in my balls but doctor told me that was more likely for doing it 3 times a day for 7 days a week haha

bogidyboy2 karma

Could you describe the pain you felt in your balls? How painful/benign did it feel?

Voltii2 karma

Its like having blue balls by wanking to much or having to much sex. sometimes theres a buldge on it but it wasn't the case by my kind of cancer. so the having to much sex part did explain it for me. thus i didnt realise i had cancer for about 1,5 years because i was very sexually active.

oldtimeydoctor5 karma

are your nurses the bomb? do you go to pediatric or adult ward? also, sorry :/

Voltii17 karma

Adult ward have my own private room with great view and 2 beds so my gf can stay. Nurses are the bomb they bring me pizza at 3 am and care for me really well

Maybe_its_Dylan5 karma

I couldn't sleep tonight and I've been online trying to figure out why. Part of me thinks it was because I was supposed to see this post, I've been putting off getting checked for a while so I guess I'll take this as a sign. Who knows, maybe you've saved my life by making this. But I guess I'm supposed to ask you a questions right?

What do you do to keep busy in the hospital?

Voltii5 karma

On your last question what I do to to keep myself busy.. eh Netflix and chill haha im interested in starting to paint so I'm watching all of Bob Ross sadly I don't have the tools to paint yet so it's just drawing so far.

Voltii3 karma

The faster you go the better especially If you have great health insurance like I do. Had a little back pain called to be sure they made a lung photo and now it's back.

tinylaughs4 karma

So sorry you're going through this. Fuck cancer. For what it's worth, you'll be in my thoughts and prayers man.

So, questions... What are some of the best/worst responses people have had when they learned your diagnosis?

Have you made any sort of "bucket list" of things you'd really like to experience?

Voltii14 karma

Worst: father telling me I'm not a real man because I can't get kids anymore. Best: the few people who were with me before I had cancer are still with me. Now the rest is just leeching on how a friend of them got cancer and will probably die soon while they never visit. I've only had like 6 friends visit me ever and only received 2 cards while my Facebook is full of replies from people I've seen once or twice in my life. Like I said it's a very lonely process

thehazzanator3 karma

Are you going to be able to have kids one day in thr future still?

Voltii8 karma

Hopefully. They froze my semen so there is a chance

catrien3 karma

What is one thing you wish your friends and family understood about your illness? What do you wish they would say to you?

Voltii4 karma

Accept I have to fight it and they don't have to feel bad for me being like this they support me so much but it's in my mind I can't show my support because I'm to weak / sleepy that's the hardest part for me.

thejpn3 karma

What's your favorite ball joke?

I had an orchiectomy, rplnd, and 2x bep when I was 21-22. I'm 25 and cancer free. I'm a fan of telling people that I can go ball deep.

Voltii4 karma

Haha haven't really though of it. my balls are still intact! they never found any tumors there strangely enough. had rplnd aswell and 1x bep now starting a diffrend kind of chemo.

blandarchy1 karma

If they didn't find any tumors, how do they monitor your progress or stage your disease? (Fellow stage 4 sufferer here).

Voltii1 karma

I didn't have tumors in my balls.
I did have tumors near my kidney though and they can test the HSG value and see small tumors on my organs.

gerryhanes3 karma

How's the chemo?

Voltii4 karma

I'm getting the TIP chemo ( same as lance armstrong at the time ) first round was very tiresome benefit is this doesn't have the lung toxicity I had last time with the bleomycine

mojo__rising3 karma

When they ignored the Lymph Node in your neck, did you have any further testing on it (i.e Ultrasound, biopsy) or was it just a case of them feeling it and saying it felt benign? I only ask because I was in a similar position this summer and after an ultrasound they said it looked normal but your comment has made me a bit concerned?

P.S I have every hope in the world for you to recover, keep going my friend x

Voltii3 karma

Didn't have further testing. If it's tested though u should be fine.

mojo__rising3 karma

Thanks for the reply man, sorry my question was a little bit self-centred. Like I said keep your head up and keep going. You have a great attitude towards it all, your girlfriend is a lucky girl. :)

Voltii3 karma

It's okay I am happy you asked because the diagnosis took me 1.5 years its better to be save then sorry and I'm all for prevention be careful with lymph nodes near your groin btw especially if there's 5 or 6 u can feel easily

TKOWarrior582 karma

Sorry to hear about it buddy, i have a two part question

What keeps you strong?

What are helps keep your mind off of it?

Voltii7 karma

Support from everywhere around the world . While being sick still trying to move around and do the things I enjoy talk to people and visit the hospitals library I've been trying to get into painting so I've been watching the Bob ross videos lately

ZZZlist2 karma

Do you have children? Can you have children after this? And I hope you pull through!

Voltii8 karma

i have 1 adopted daughter who is 7 years old now.

Cassie_HU2 karma

I know how you feel man.

Are you inspired by any stories, like The Fault In Our Stars, or any other story? If not what types of stories do you read to pull through?

Voltii5 karma

Loved that story. Red it before I was diagnosed as my brother had kidney cancer as well. 1 kidney got removed from him he's clean now for 16 years.

DragonToothGarden1 karma

both you and your bro got cancer? what a shitty deal. are any of these cancers genetic?

Voltii1 karma

Diffrent kinds but both my mother was pregnant during a plane crash my brother was born with cancer. U can look it up bijlmer plane crash plane to Israel contents unknown half of our flat got cancer / copd

Voltii1 karma

All coincidence all diffrend kinds. Only coincidence is the bijlmer disaster in 1993 contents of the plane unknown and 3 people cancer in our family..

KazuoKuroi2 karma

Are you afraid of dying?

Voltii14 karma

Not really just feel terrible for my soon to be wife and kid that's the hardest part to cope with I'm pretty open minded and not afraid of death so I'll see what happens and I'll stay positive trying to support my gf and kid

Amecha2 karma

Wow. I don't even have a terminal illness but I'm horrified of dying. I'm glad your not dealing with that on top of everything else your going through. Are there other options or has the cancer spread to the point that this is the only thing you can do?

Voltii5 karma

Stem cell transplantation is most likely the last resort if it doesn't work chances are under 5% I make it

DragonToothGarden1 karma

5% are the odds your doctors are giving you right now?

If I were within a few hours, I'd be right there to visit you. Its utterly shameful how your 'friends' and family have been.

Voltii1 karma

35 5% if the chemo I'm on doesn't work.

GalacticCow-15 karma

Keep going at it, man!

And for god's sake use some punctuation! A period or a few commas won't kill you, you know!

Voltii4 karma

Sorry, was writing on my phone all the time. Just hooked up my laptop so will be better now.

DragonToothGarden1 karma

Don't worry about punctuation. You have more important things going on in life. Anything that helps save a bit of energy - use it. When I was too weak to shower for 5 days at a time I'd use baby wipes and wash my face. I also shaved my head as I couldn't lift my arms for longer than a few seconds, and going pixie cut made life much easier.

Voltii1 karma

Haha I had the same when I was on chemo in march / april was so tired couldn't do shit but sometimes u just have to man up. And similar story with the baby towels either that or my gf washed me.

madcaplarks2 karma

What checks van your average 20 something do for cancer. Is it doctor visit stuff, or are there signs, symptoms or home tests you can perform?

Voltii2 karma

Check for lumps around ur body / balls / neck / if you can feel your lymphs ( feels like small round circles ) something is definitly wrong. Other then that theres not alot you can do. there are certain signs but it varies so much its really hard to get a diagnosis and its even harder over the internet So best thing you can do if you are really worried is consult a doctor and bring him a list of all the symptons you have on paper. I remember googling alot on symtons i had and i made a list of all possiblities what it could be. I showed it to my doctor and he tested me for everything on the list except for cancer ( he didnt think it was nececarry to cross on pregnancy hormone on the blood test ) while that could have saved me tons of pain and stress.

jaznoalpha2 karma

I hope I'm not rude in asking this but how did you feel finding out? And are you hopeful about your situation?

Voltii15 karma

Terrible.. Just moved and got a new job 3 weeks ago. Got engaged after they told me I was clean after surgery and now it's back.. a month later.

About the hopeful part. This chemo is a lot heavier then the one I got last time but I try as best as I can to get through it. It's a lonely process though

dakotagraves10 karma

Fellow Testicular cancer survivor here. Left testi to my lungs and liver when I was 16. Right testi with the same spreading when I was 19. 26 currently.

It is a lonely process man. I was miserable, I had some other social issues anyways and it escalated the problems dramatically. I felt like I lost all of my friends and that I would never be able to connect with anyone again. I got really depressed both times. After the first time I was diagnosed with PTSD, which didn't help when the second time came around.

Don't ever forget about your mental health in all of this. Therapists and mental health professionals are available to you and should be easier to cover under insurance during this time. Your emotional state absolutely effects the way you'll feel about your progress. I didn't believe that the first time and as an angsty teenager I wallowed in my anger and self pity. The second time I sought out help and even though the chemo was much harder, the experience was emotionally much less draining and destructive. Chemo will destroy your body, but it doesn't have to destroy your spirit. Take the time, what little energy you have, and the money to care for your mental state. You will thank yourself.

Most importantly, don't forget people love you. Even those of us who don't know you. Other cancer and Testicular cancer survivors and fighters are only a message away, including myself.

Edit: Thank you for doing this AMA and bringing more light to this issue. Men need to know about the dangers of prostate and testicular cancer.

Voltii6 karma

Wow such an englighting story. thank you so much for sharing this. I do have social workers i can talk to and my mother still supports me. But its really hard for me to get a grip on anything right now.
I kinda feel like i dont have any emotions or whatsoever.
And everyone is telling me my reponses are so 'cold'

The thing you said about feeling to have lost your friends is the same thing i am experiencing right now.

Thanks again.

dakotagraves3 karma

I completely understand. Stay strong. Where are you located?

Voltii4 karma

Amsterdam :) De Boelelaan 1117 1081 HV Amsterdam Department 3C oncology room 44 if you want to send a card :p

jaznoalpha6 karma

I hope you pull through buddy. I can't imagine what you're going through but the bravery to put yourself out there and talk about it is amazing.

Thanks for doing this AMA.

Voltii2 karma

Thank you for your support means a lot to me!

ansedj5 karma

Is there any way to make it feel less lonesome?

Voltii7 karma

Try to make the best of it and go for a walk from time to time speak to other people and nurses but everyone is sick so can feel quite depressing sometimes especially when people start crying after I tell them my story

DragonToothGarden1 karma

How long will you have to stay in the hospital?

Voltii1 karma

4 times a week with 2 weeks break in between.

marcspc2 karma

how did you find out? which were the syntoms doctors didn't associated with cancer?

smurfpride3 karma

He took a pregnancy test which was positive. Some testicular cancers excrete hcg (the pregnancy hormone).

marcspc2 karma

I'm asking about which syntoms where ignored by doctors that were cancer

Voltii5 karma

Lymfe in neck and in my legs were really swallowed pain in my kidney really hurt doctor told me to eat less spicy because he though it was my bowels ( Asian gf how racy )

smurfpride2 karma

And they just ignored swollen lymph nodes?! It sounds so unprofessional! You should make a complaint.

Voltii2 karma

They though it was because i had a cold and the lymph nodes were swollen due to the fact i was sick. they said they will reduce in size soon... they didnt.

marcspc1 karma

recently my aunt got chemo for a metastasis cancer, they found it when it already was metastasis, she went trough 2 chemo sessions and now all the cancer nodules are less than half the size, she feels much better now, I hope you have the same luck and have it under control for a long life

Voltii2 karma

Bless your aunt great to hear she feels much better.
So far iv'e had:
BEP chemo
1 week chemo 3 weeks home ( 4 times in 4 months )
RPLD surgery
And now starting another chemo 1 week chemo 2 weeks home for 4 times.

haileyahn2 karma

What did your gf say as soon as knowing your cancer?

Voltii5 karma

She was terrified even more then me crying for days..

A574K1 karma

How did you feel about that? It is your life.

Voltii1 karma

Strangely enough I didn't feel a whole lot guess I'm a bit more easy going on accepting what's going on.

colmcg1 karma

Hey man. Sorry to hear you're in for another round of chemo. Chin up and fight the good fight!

What are the chances of beating it this time? If you knew the first time round that the chemo wouldn't work, and you had the choice, would you have changed the treatment?

Voltii1 karma

All kinds of chemo respond diffrently. I had to get surgery to be sure the cancer was gone for good ( just to test the lymphs they removed )
They did test the lymphs and it tested positive. which as allready a bad sign. So a month later i had the lung photo and the cancer was back. now 2 days later im on chemo again.
5 year survival rate is 48% a bit less in my condition so around 35%
If the stem cell transplant is neccecary and it doesnt work its under 5%

Completeness_Axiom1 karma

What's your happiest memory from your life so far?

Thinking positively, if you pull through, do you have things that you really want to do post-chemo / post-cancer?

Just like to say I hope everything works out well for you, remember to make sure those who have helped you know how much you mean to them and that you are thankful for everything they've done :)

Voltii2 karma

Hard question to answer right now.
I've had a very moving life to say the least.
Been with many woman had the joy of living quite luxorious even though my parents disbanded me when i was 16 I've had many great moments. but the best thing that ever happend to me was meeting my girlfriend 4 months before i got diagnosed in march. She is still with me and we engaged when i was 'clean' now the cancer is back.
I told her its okay you can go. but she sticks with it. that earns my uttermost respect.

justuz1 karma

There are many new options of treatment out there have you heard of Zelboraf? I don't know if your cancer is an option for you. I am sorry you’re going through this. I went through it in 2012 but mine was uterine cancer. A good attitude and hope goes a long way. Bless you. Did you pee on the pregnancy test as a joke?

Voltii1 karma

Yeah :/ was a joke. Heard of those pills doesn't work for my kind of cancer thougb

hylzz1 karma

I'm interviewing for an Oncology Coordinator job this week at a comprehensive cancer hospital. What could someone like that (non-nursing staff) do to really make a difference for a patient?

Voltii2 karma

Make patients get in contact with each other sharing experiences I think that's one of the best ways for patients to feel better. When I go out for a smoke I love to talk to other patients and their experiences just talk to everyone you meet in the hallways and always be open.

willthrowawayy1 karma

Could you explain the whole pregnancy test thing? I've never heard of this!

Are they using similar treatments to your brother's treatment? That is interesting they he also had cancer. Usually kidney cancer is deadly, but he beat the odds too, I bet you will too.

Good luck man!

Voltii3 karma

The pregnancy hormone HCG is produced by testicular cancer. This is not always the case though! But with more severe tumors it mostly is. My brother had a diffrend kind of cancer he had chemo aswell but it was 15 years ago ( nefroblastoom child cancer ) odds at the time were less then 1% < yet he is still up and running :)

BlackLabradors_1 karma

What do you think about death? Does it bother you? How do you view it at this point in your life?

Voltii2 karma

I don't fear death.
I try to make the best of it and trying to make a bucket list of things i still want to do. Inform and educate people about cancer awareness and how hard it is for people to understand unless you have it yourself. it plays so much games with your mind that the physical pain inevitably goes away. but the emotional pain grows stronger each day. I don't know whats more difficult to cope with. I try not to think about the mysery but the beauty that still remains.

donmartell1 karma

How did you know you first had cancer? Was there any tell tale signs of it?

Voltii1 karma

pain in upper left leg. ( sign of problems with kidney )
pain in balls.
coudn't stand on my left leg anymore insomnia
and several other sympthones which alot of disseases have to it was really hard to diagnose

Danny_Notion1 karma

Is there a place to send cards?

Voltii1 karma

De Boelelaan 1117
1081 HV Amsterdam Department 3C oncology
room 44 if you want to send a card :p

Kathun0 karma

Have you considered radiation therapy?

IAmAPhish3 karma

Radiation therapy is much better suited to a single tumor - before it goes metastatic.

Voltii3 karma

The main tumor near my kidney was split in 2 sections of 15 cm each they removed it surgical picture is on top of page. Rest is all small tumors ranging from 5 to under 1 cm

swangintotomorrow-1 karma

Should I keep smoking?

Voltii1 karma

I will probably smoking didn't rely have to do a lot with it. Did quit for a year though

swangintotomorrow2 karma

Quit smoking for a year, got cancer, took up smoking again. YOLO.

Voltii1 karma

Quit due the toxicity on bleomycine.
Now I smoke 1 or 2 cigarettes a day. Like I said my lungs perform 15% over average including non smokers. Don't think I'm quite the risk factor it's not like I'm smoking 2 packs a day..

sumant28-2 karma

The dietary risk factor most associated with testicular cancer is dairy particularly high fat cheese. Do you think that may have played a factor in your diagnosis of testicular cancer? Have you considered adopting a whole foods plant based diet in light of its health benefits particularly among cancer patients?

Voltii1 karma

Didn't know that still eat high fat cheese and drink milk . Haven't really considered changing diets because I need to gain weight first.