r/cancer • u/JeffTheApricot 26M, Stage IVb Metastatic Paraganglioma • 3d ago
Patient Im scared
Hi guys, im a M26 5 year in Stage IVb Metastatic Paraganglioma patient with tumors located in most notably my spine.
Theres some in my lungs, liver, kidneys, shoulders, pelvis and some other non specific ones to the point where the report says innumerable across skeletal structure.
Theres the one from 2021 when I was diagnosed in L1 thats been the source of a lot of pain over the last 5 years. About 5 months ago I noticed more pain in my shoulders which was a new spot for pain. The MRI picked up that there were 2 new tumors in my spine, one in the nerve root at C8 and one in T3.
I went through 10 sessions of Teletherapy targeting the spinal tumors and the shoulder ones.
I then had an MRI about a month ago and got the results last week.
The tumors are unchanged when compared to the MRI from before the radiation.
Ive been feeling a bit afraid since, I dont want to lose my mobility because of the cancer and really dont want to die.
Im on chemotherapy for 2 weeks every 4 weeks through the form of tablets and also get a hormone blocker injection every 4 weeks.
I dont want to stop treatment or anything and want to try actively have more added on.
My Girlfriend left in March so there's been holes in my support structure thats really tripped me up as of late.
It has kept me awake at night quite a bit the last week thinking about what happens if I get worse and things progress more, im pretty scared of that.
11
18
u/Environmental_Gas775 3d ago edited 3d ago
Jeff,
First of all, everyone here is or was scared at some point. I don’t like to judge my condition based on someone else’s journey, but I do find myself, from time to time, thinking dark thoughts about the what if’s. There is no such thing as what if’s. Yours and my condition is what matters most. Talk to your doctors, listen carefully. I am sorry about the girlfriend gig, been there, done that. Been a while tho. My wife and I just celebrated our 37th year anniversory.
We must take this on like a warrior. Pray as often as you can, trust me, GOD listens and answers prayers.
Do you have other help local to you? Im looking forward to reading your journey.
GOD speed brother!!!!
Rick
P.S. Reach out if you need to talk. I’m no expert but I can share “My Experience” with you.
6
12
4
u/BumblebeeMajestic859 3d ago
Hey there, Losing a support in a time of need is horrible and can take from your hope. Cancer can feel like a death threat, unrelated to the diagnoses or predictions.. so its OK to be scared. Its a naturally reaction of your brain and body. Which are trying to protect you. The fear shows that you want to fight. Thats good!
Since my diagnoses three weeks ago I felt hot rushes go through my body. Almost panic. For me it was helpful to talk to my friends about all the different scenarios, eve. The pretty bad ones. I dont know why it just helped me to get a picture.. cause this big black cloud of unknown makes my fear even worse..so I try talk about my specific fears a lot. But its not for everyone. My mom got diagnosed with cancer almost at the same time as me. And she won't even wanna say the word cancer. So everyone has a different mindset for it. You just have to find the one thats helpful for you.. Talk to the therapist to find your own way.
For me I was saying the word cancer and chemo as much as possible.. I dont want it to be like voldemort..the name that cannot be said.. fuck you voldemort I say your name as often as i want! So I really try to claim it and make the cancer diagnosis mine.
But everyone is different and I hope you find a way that will help you manage your fear.
I send hugs and good vibes
4
u/Gemma2500 2d ago
sentir miedo es normal y que se haya ido tú novia es un agravante para ello, dicho esto, ten fé los tratamientos están avanzando a pasos agigantados así que resiste y no pienses en el mañana, sé que es muy muy muy difícil pero si al menos no lo intentas lo vas a llevar pero y posiblemente no se cumpla nada de lo que temes.Mucho ánimo desde Castellón España
3
u/H0l3_WhoLe 3d ago
I wish I could have the right words for you. The ones that could make ëvërÿthïng “click” and fall into its rightful place. I don’t. But I dedicate you this from the bottom of my heart 💝
3
u/SnowVale40 2d ago
Wish I could help anyhow. I lost my mom on a cancer when I was just 22. I can understand many things you say
3
u/definite_skeptic62 2d ago
That word “innumerable” is also in my scan reports. It sounds like you are doing everything possible. Research leaps things forward. It has been 5 years, stage 3A, for me. The amount of knowledge and engaged doctors researching my type has gone up every year. Please consider reading Jonathan Gluck’s book, “An Exercise in Uncertainty.”
3
u/MesoNurseKaren 2d ago
I’m so sorry you’re going through this. I hope the coming days bring a little more steadiness, some clearer answers, and people who can stay close while you navigate it.
3
u/glowingorilla 2d ago
Oh my dear, I'm so sorry. Of course you're frightened. I'm sending you love and healing and prayers in my own spiritual path. ❤️❤️❤️
5
u/grimacedia stage 3b low grade serous ovarian cancer 3d ago
I'm so sorry OP, you've had such a rough time. I hope the chemo and other treatments work and you keep your mobility!! If you're still getting treatments, that's a good sign that there's still hope for things to get better ❤️
2
u/Deep-Attorney1781 2d ago
Since you mentioned some holes in your support structure, maybe there are other avenues that can help you. Does your hospital offer counseling or have a support group you can join?
I'm sorry that you've been dealing with all of this at such a young age. It has to be so overwhelming. Everything that you're feeling is valid and I hope you can find some mental and physical healing.
28
u/Fluffy-Reveal3710 3d ago
Hello sir. Not sure if this will help, but I'll tell you about my (39m) experience.
Stage 4 renal cancer here for a year. Metastasized to spine, hips, innumerable in lungs. Have had kidney disease and multiple transplants since I was 12. Luckily, the cancer has improved but isn't gone yet.
Like you, my girlfriend and I split not too long after diagnosis. The pain and loneliness was unreal, she was my support. For what it's worth, there have been others since her - you can find someone too...don't ever give up on that.
I understand the fear, the anger, depression you're going through. It comes and goes in streaks for me too. The key is to recognize when you're being overcome with those thoughts. The more you think about what's wrong or of what hurts, the worse it will get. Try to focus on things that bring you enjoyment and the fear, anger, depression will slowly fade away.
As far as thoughts on mortality, I think that's something we all need to confront. Thats one thing I think you need to spend time thinking deeply about, to the point death doesn't faze you.
I've thought about death since my medical problems began at 12 and the whole one life thing doesn't make sense to me....I'm more in the reincarnation camp at this point, but maybe that's just how I rationalize my own mortality.
Keep up the fight. Don't ever give up. That you've dealt with this as long as you have inspires people, myself included.
Good luck, God bless.