I'm (m) 31 years old from Germany and am dying of germ cell cancer! AMA
I was at work the 23.12.2019. I had already seen a few videos people ( namely fourious pete https://www.youtube.com/channel/UCspJ-h5Mw9_zeEhJDzMpkkA) who had testicular cancer. So because why not check my marbles on the company clock? I felt a small bump and decided - so that i can have a peaceful Christmas to go to a the urology immediately - take the rest of the day of. Christmas is HERE :)
My doctor got down there to feel ma ball and said ' I cannot feel anything but lets make an ultrasound of the ball. He saw something now i'm here!
Still, go for you checkups people, its over immediately and if you don't get a freak of nature cancer (like me) then u will be fine! Recovery rate is >90%
From someone I know: when it was double the size of the other.
Regularly check for the size of them. But not too often, because gradual change might make it less noticeable.
while size is a factor - any unevenness of the testicle and partly hardening of regions are very relevant symptoms - i'm no doctor though. Just go every half a year- all of this takes maybe an hour and you can have a relaxed half year :)
Do you still undergo therapy or do you plan a goodbye tour with friends and family?
I have brain radiation right now - because you need those treated - you decline pretty bad if this goes untreated. (Might also come of a bit confused in these answers radiation is no fun bear with me :))
I cannot to any tours - if have have to shower i need 10 minutes regeneration time.
But people are visiting and i have a lot of videocalls :) I say my goodbyes to my friends and spend time with my wifey. Its very calming and i feel good with it :). ( OH YEAH AND DRUGS! mainly cannabis) My German heritage forces me to to do what i normally hate with fiery passion: bureaucracy. But somehow i want every taken care of. I don't want my loved ones to have deal with sending out 15x (probably not correct number) Fax Papers, that have to be stamped by three different government entities AND those have to be probably singed by Kanzler Olaf Scholz?
GET A GRIP ON OURSELF GERMANY ITS 2023. That kind of shit was maybe ok 1990 but we got a few years maybe take take a look at some processes and MODERNAIZE. (sorry rant over :P)
You should really get into opiates before it is too late (too late as in building up resistance to them and not get the buzz) since you do not have to suffer any consequences from withdrawal.
Hello if you ave inside i love take it - i have benzos - the feel is ok, but i'm more of a weed smoker so maybe my dosage is to low? - i take 2mg Tavor in the morning and two in the evening - i would nothing that i feel describe as a buzz.
Two days ago, i took 1.3 mg of hydromorphon acut - i did feel nothing, did not even sleep. It was 3 in the morning. this night i took two of the hydromorphone tablets - i was able to sleep and felt 'good'? but i had no buzz?
I was very atheltic/muscular 1 year ago - and i now weigh ~110 kg and am 185 cm big - if you can give me info i would appreciate it. You can also send me a pm if you like :)
Whats your happiest memory?
- Getting together with my wife
- Finished my Bachelors Degree in Computer Sience
Cancer and Alzheimers are my two biggest fears in life. How does your brain cope, knowing there's a high chance of death? Do you feel peace or are you depressed? Thanks for this AMA and good luck!
My brain does not have to cope anymore - my dead is 100%. There is nothing that can be done anymore. My life was good - i feel at peach - and i get to try the good drugs now - without having to be afraid of addicted :D
How has your outlook on life changed now? (If it has at all)
Hmm i hope i can answer this, so that I'm satisfied - bear with me English is not my first language:
I hope you mean how i do see my life as whole, in regards to that i know now its is over in a few weeks?
Actually, since they said there can nothing be done anymore, and i hat halve an hour to process, i felt relieve and until now this has not changed. Don't get me wrong the initial message this like bricks. But I would my describe myself as realist. After there was tumor in my lungs and liver after the invasive surgery, i prepared for not being able to make it. At least mentally. I told this my family and friends. But People actively WANT to believe 'ahh its gonna be ok'. I'm not that type of person. I see data - I interpret data - i hear professional options - i make conclusions. So until now i can say that i'm not:
- Angry - at whom?
- Negotiate - with whom?. Cancer is nothing that you can fight - you endure the treatment and if you're lucky you get to life.
I'm: * Sad of course for my newly wife - The love of my live, i know her since 2016 - i fell in love with her instantly. I know how se looked what first said to me. I remember thinking this is be the one. She had a boyfriend so i friend zoned for 8 years - just being a good to her. Permanently working on myself to deserve her, but not to interfere in here relationship. I lost 70Kg, threw myself into sports - Crossfit/Olymic weightlifting/Marathon running and nutrition. I went on to become really good Software-Engineer - my dreamjob nonetheless!
The first week we got together - after almost 8 Years - had the most crazy week of my life. We said our first 'I Love you' at 20.12.2019. Three days later i got my diagnosis. I asked here - you gonna to this with me? She didn't even think about it. After my initial treatment was done and everything look good, she got diagnosed with cervical cancer. So we dealt with that - because that's how i always imaged being in a relationship - as a TEAM! (she my first everything by the way). Then Corona hit but we had the most fulfilling and loving relationship i could have ever dreamt of. We went from being colleagues to seeing each other the whole day as we worked in the same team. It was wonderful.
Which brinks me to my outlook of life now. * I did always what i wanted to to with my life * I achieved more academically and in the workforce than i could have ever imaged. I was the first one in my family go study a STEM mayor no less with grades i'm very proud of. After being 160kg heavy - i made myself into the most capable me that i could. I was able to squat > 150kg for reps, > 180kg deadlifts for reps, i ran a half an a three quarter marathon. I was (for what was possible for me) peek fitness. * I got to be together with "MY PERSON" alone this means more then the rest that i wrote down here.
I did all my treatments to ensure best chance of survival - even if it destroyed me while doing it.
I did everything 100% or didn't do it at all. By living like this, I can sit here with 31 years and say it sucks i did not get more time - but i have no regrets, and in Summary my life is a win.
I bet there are quite a few people who life to 80+ and cannot say that.
This helps me :)
I'm so sorry, man, that's so tough. I wanted to ask, how do you manage your feelings? Don't you feel extremely sad or angry at life for this happening to you so young? I can't even imagine. I have a medical condition that worsened suddenly at 24, making me lose my career. It's irrelevant compared to what you're going through, and still I can't help but feel so angry, and I don't think those feelings will ever go away. How do you deal with this?
Hey :) I just never quite did grasph the concept of being angry at 'life'. Live wont care? so why whould i not take what i have and make the best out of it. I left this out of my original story, because it has nothing to do with cancer. But at four years old my cousin (by accident) smashed a hammer into my left eye (it should even be visible in proof picture under my post) It basically blinded me on that eye (i see like 7% with that eye). I had 6 surgeries and multiple other treatments. I was not allowed to do sports because it could destroy my eye. So i went couch potato and weight > 160 kg at 24 years old. NOT ONCE in that time i was angry at him or the situation. What would rage change?
Was i sad? Yes of course!, Was i angry? No.
I guess my biggest question would be what you are doing mentally to cope with the knowledge of your own demise? Have you accepted it?
I’m so sorry this is happening to you. At least you can say you put up a hell of a fight and are going out swinging. Fuck cancer and your bravery is inspiring.
When the time comes, rest easy and know you’ll be in a better place than this crazy world.
Thank you :)
I have accepted - and was i wrote somewhere else - we all are born, we all die - this is literally the only constant in life :) All People before me had to die, so i think it has to be ok :)
will you do heroin one of these days?
I would lie, if i say i have not thought about it - but it sounds very exhausting - especially now that i got benzos and morphine?
Whats ur bucket list? Will you be healthy enough to cross shit off?
Also I always wondered if in your position you could take out extreme amounts of loans and just spend it on hookers and cocaine. Is it?
Wouln't those loans not just straight go over to my family? With cancer - in my stage, there is no enjoying of sex possible... But i got me a GOOD share of that beforehand :P always a risk if you together with the most beautiful woman on earth :)
What are your options, Palliative care or continued treatment? Are you afraid? Why/why not?
Palliative care - I'm not afraid at the moment - i have no power here anymore. I have good care everyone tries to help me to have a smooth passing - no more i could ask for
I made peace - Of course i'm thinking about it - but not much. I can just not now (yet). So this would just be wasted cognitive energy for me? At least that is how i feel about it.
I don't really think there is life after dead? BUT i would love to to have some kind of karma thingy so, people who are not good to other people ON PURPOSE have to explain themself on SOME level :D
My heart bleeds for you. What piece of advice would you give those of us who have taken life for granted?
I also took it for granted :) Thats how our brains work. If you can take a moment now - and appreciate it more? That would be a win in your book :)
Anerican here. I don’t know anything about German healthcare, so I wonder how the financial side of this experience has been. My grandmother died of breast cancer after hiding it for years so that she wouldn’t have to put my grandfather through the stress of paying the medical bills. Have the treatments you have undergone been financially straining to you or your family?
Hello, all my treatments cost the german people ~165.000€ I myself payed ~ 300 Euros for staying and eating at the hospital (the cap is 300, otherwise I would have paid double?) I payed maybe 300 Euros for meds, but the most probably for cannabis ( 1000?) as government will take those costs very reluctant.
Befor I got cancer I had a full time job. In germany, if you get sick for less than 6 month you get your full pay. After these 6 month you recive 80% of your income for a duration of up to two years. After that you will get only some basics I guess? I did not have to dealt with that.
But I can tell you, that I'm very happy to be born in Germany at this time and age. I did not once think about money through all this time.
I try repost here :
if it is removed there as well, well at last i got to talk to here for a little bit :) it was fun while it lasted! Have a good life Folks! Be nice to each other :)
Mann, da hast du ja echt die A-Karte gezogen. Was wünschst du dir für die Zeit, die dir noch bleibt? Was möchtest du gerne noch machen oder erleben?
Machst du dir Gedanken darüber, warum es dich erwischt hat, also ob du irgendwo verstrahlt wurdest oder Umweltgifte abbekommen hast? Oder nimmst du es, wie es ist, und versuchst dir noch das restliche Leben schön zu machen?
Eine angenehme Zeit - und einen angenehmen Tod :) Hört sich jetzt evtl hart an, du und ich haben sicher mindestes zwei Sachen gemeinsam - wir sind geboren. Wir (auch du) wirst sterben. Die zwei Sachen sind sicher :)
Ich sehe nicht, warum ich mir Gedanken machen sollte? Was ändert es? Jeder kann Krebs kriegen. Hodentumor ist, glaub ich ,sogar der 'häufigste' unter Männern? Wenn es Umweltgifte sind - wären es dann nicht auf einmal viel viel viel mehr Fälle, die jetzt auftreten würden?
Fakt ist, ich sterbe - Fakt ist Krebs ist ein Arsch - Ich konnte nicht mehr tun. Darauf bin ich stolz :) Ich hab alles versucht :) Auf ein paar letzte schöne Wochen :)
Hey man, this sucks, sorry it’s happening to you.
I’m wondering if they had removed your testicle w the bump instead of leaving it, would that have stopped the same type of cancer from spreading 2 years later?
Wish you happy days, enjoy what your can buddy, and take care.
I asked the same question to my doctor - there is no definitive answer that can be given.
If the cancer would have reoccurred on the same testicle? i would also think about the possibly. But the cancer occurred, after 2 years, in my stomach next do a lymph node. So my guess is good as yours, or any of the other doctors.
hi thank you for posting. are you in pain? i hope you are not. thank you.
No, not yet. And i got morphine so i should be bearable if it really comes to it :)
Yo! Get well soon, G.
Are you: Team Edward
are you: Team Jacob?
Who in his RIGHT f*** mind would ever be Team Jacob?
I now Edward is not perfekt - all this "i have to protected her from ME" nonsense brings my blood to a boild. First of all thats the woman that you love and she loves you THE AUDACITY to decide over her head. I can't even. But he loves her with all of his hearth - i can respect that.
Maybe someone can help me here i cannot by the love of GOD find a good quality in Jacob? Even though i don't like the 'imprint onto Renesmee' story arch, because it feels like lazy writing to me? BUT AT LAST I DID NOT HAVE TO THINK ANYMORE ABOUT JACOB AND BELLA CAN BE HAPPY WITH EDWARD
Well now i have to some some pot - you made me upset :P
I should have CAR-T Cell treatment this monday 30.1
Everything was prepared for me. The only reason i was not able to start on monday where findings of brain tumors - you cannot have CAR-T cell mRNA therapy with brain tumors - the cant remove them as fast as my other metastases will kill me. So basically it comes down to a timing problem.
I imagine you have been doing a lot of reflecting. What is the thing/memory that you are most proud of?
But I’d also be curious to hear what’s something you are least proud of? Or any regrets of not doing?
You mean my life overall?
Best memory: Hitting all of my goals:
- Getting MY person i love her so much
- Studying computer since and graduating with a score of 1.9
- Working as software engineer and making a name of myself
- Overcoming my Body issues and being ripped and CAPABLE ( Even tough i destroyed my skin by being way to overweight)
- Letting myself getting very overweight AND BEING OK WITH IT FOR A FEW YEARS
- Not having the chances i could have had because i was to self conscious and thinking i'm not smart enough - never let anyone tell you you can't do something. Even good friends told me 'you really should think about trying university... its hard!'
I'm so glad i tired. I rather fail then don't try
i saw it in your post history that you made a gaming table with your dad you were really proud of. That’s pretty awesome! It honestly looks really great and I have so much respect and admiration for you. I couldn’t do that.
Im sure your dad is also super proud of you, u/Reiiser!
Thanks :) that one was really cool :)
Did you try to read Stoic philosophers?
Marc Aurel and Seneca!
With their wisdom it is possible to cope with your situation.
dum spiro spero
(Solange ich atme, hoffe ich)
No i haven't and now i don't have the time :) At the moment i feel i cope ok - but a persons psyche is very fragile - who knows how i will be feeling if the end comes. We will see :)
How easy / hard is it to find a good hospital? Are there long treatment queues before you can begin therapy?
I live in Regensburg - Germany, which incidentally is known for a huge and very good University Hospital - lots of young and eager doctors - i could not have been in better care!
Sorry to hear that. Was it a seminoma or non-seminoma? I'm curious cause I just got done with treatment myself and the doctor told me to see him in 3 months, even though I skipped through most of my bleomycine course (doctor's orders, fucking thing fried my lungs), it sounds like you went through so much more and still got worse, is there a reason or a theory as to why?
Yes i had a seminoma - but it turned out to be a mixed seminoma - some cells did not respond to platin (which should theoretically hinder my cancer cells from multiplying and thus dying faster then they can reproduce again).
I'm not a doctor but as far as i know a pure seminoma has over >90% success chance with the standard PEB therapy!
Are you going to wait it out or are you planning to go out your own way? Also, fuck cancer.
I organized both options - the people from the hospital know I want optimal symthom conrolled so if it comes sudden (eg drowning on my own blood) Ill get what I need so I don't realize it.
I joined 'Sterbehilfe' which is a society you everyone can join for money. If I decide existence is to much pain now, they basically prepare a self inflicted suicide for you. You still have to press the 'button' by yourself thought.
Have they told you what it will feel like? Or how long you have to live? Not knowing how soon it is coming or how it would feel would make me anxious.
Regardless, do you have time to knock anything of your bucket list? Anything we can help with?
No, because they can't - Its very hard to predict how someone will die - intial guesses where two month - of which one of, i will feel 'ok'. The biggest problem right know is my lung. I bleed quite a lot. But there are many people here whose only job it is to make my dying as smooth as possible.
Today i joined something that is called sterbehilfe: https://www.sterbehilfe.de/ . you pay money and when you decide for yourself, now every day is just torture - they prepare for you to basically put yourself into a position where you can end your life with their assistance - but you by yourself have to push the button? At least that how we interpreted it.
I’d say keep fighting. But that’s easy for me to say.
Perhaps if you go through with radiation and then do the mRNA treatment, you can pull off a miracle?
:) I'm getting not tired to explain this to people i hope this makes sense.
- With cancer you CANNOT fight - you endure medical threadments that destroy you. But you hope it destroys the cancer faster than you. I know people mean well when they say 'keep' fighting. But the semantics here CAN be interpreted as 'You just have to do more! Fight harder' This is just not true and not fair to people who endure such treatments.
I'm not one for miracles i'm realist. If i get healed then there is a explanation why and how it worked.
Life is not fair or unfair - life happens.
How did you initially realize you had testicular cancer?
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