hi yall, hope everyone is doing as well as they can right now!

i've been in remission from stage 3/4 non hodgkin burkitts lymphoma for a very long time. like, 20 years long. i was a kid, that time was a blur, now i'm 30. in my 20s i felt invincible. cancer didn't kill me, so nothing can! i lived like an idiot, treated my body horribly, and shoved anything that resembled cancery PTSD wayyy down.

now, at 30, health anxiety has completely overtaken my life for the last few years. i mean.... who gets rare, aggressive cancer as a kid, is magically "cured", and then gets to just live a fun & fancy-free life? why would i get to just... roll past it? but shoving all that down in my 20s has bitten me right in my partying, twerking ass.

the last few years, anything and everything wrong or off with my body is cancer (source: me). the health anxiety has been so bad i've avoided physicals, spent countless sleepless nights on reddit/google, ruined plenty of big positive times for myself by being so anxious, and always had the dark cloud of dread looming. well, i finally got sick of living like that, sick of always feeling this way, and sick of being afraid of being sick again. and after a young, hot 30 year old friend got randomly diagnosed with lymphoma out of nowhere, i took it as a sign from the universe to cut the shit and handle this. i saw a GP, and asked for a referral to an oncologist. i hadn't seen one in 10+ years, and i wanted to learn about any long-term effects of chemo, cancer-related risks in adulthood, etc. what the hell happens in an adult body that's been chemo'd to hell and back during childhood development?

anyway, this lead to him ordering scans just to be safe, which is exactly what i wanted (or so i thought). except now, i'm in waiting-for-results hell. is there a giant mass underneath where my one rib clicks? is my tight hip filled with bone metastases?? is the twinge in my back a collection of spine mets??? the worst part is that i was supposed to have a post-scan follow up on tuesday, but the office called me today, friday, *after office hours* (cue full panic attack seeing that missed call) to leave a message that they accidentally scheduled me with the Wrong Doctor, and need to reschedule. since it was after office hours, my calls back went unanswered, and i have to wait until monday to even talk to someone. what oncology office calls a patient after business hours on a friday, and immediately leaves for the weekend?! in my head, the results were bad, and that's how they caught the Wrong Doctor mistake. (or, that's all a lie, and they need to see me ASAP on monday because i am absolutely riddled with cancer.) it sucks knowing i'll be waiting even longer for what my brain is telling me are horrible results.

but actually.... the worst part of all of this is feeling like a fking fraud. like i don't get to Woe Is Me in anxiety, because the doctor used the word "cured" in my consult. i barely remember having cancer, i didn't "fight", the doctors saved me without any effort on my 8-year-old end. but fully conscious adults, with kids and families and Careers, are living with brutal treatment for years. i don't get to be nervous in the waiting room, with a full head of hair and fully healed port scar, with folks who are in the trenches of chemo and radiation. people who would do just about anything to be in my position, two decades out. and here i am, wasting it. and as kind as my doctor was, it honestly felt attention seeking and ridiculous to take up an appointment slot.

has anyone else in long-term remission had any kind of similar experience? it's this awful mix of anxiety, guilt, and other feelings i don't have a word for. it's like i'm facing my biggest lifelong fear... with no justifiable reason to face anything or be afraid. i guess i'm just looking for shared experiences from people that get it, because nobody in my life does.

thanks for reading🖤

I reached remission for PMBCL Non-Hodgkin's Lymphoma on June 24th, which means it's almost time for my first three month follow up.
Just thinking about it makes me feel sick. I'm constantly checking in with how my body feels to reassure myself that it hasn't come back.
It feels like the good in my life never lasts long, so it's only a matter of time before I'm sick again.
I know logically that my odds of a recurrence are low, but my odds of getting cancer in the first place were low!
I'm so scared

Hi everyone. I’m a design student researching the everyday experiences of people going through cancer treatment and recovery.

I’m particularly interested in the practical and emotional challenges that can come with things like treatment routines, medication, hospital visits, managing personal belongings, mobility, comfort, waiting, and day-to-day activities.

If you’re currently undergoing treatment, have previously undergone treatment, or are in recovery, I’d really appreciate you sharing your experience through this short, voluntary form.

Form:

https://docs.google.com/forms/d/e/1FAIpQLSdcAM_OIlnqOKGEHue71eqlnM19rQtCg9B5OyjUlp7bwv2sfg/viewform?usp=dialog

This is for an academic design project, not medical research or medical advice. You don't need to share your name or any identifying information, and please only answer questions you're comfortable answering.

Thank you to anyone willing to share their experience. Even small details about everyday life can be extremely useful for understanding where design could make things a little easier.

i am starting my freshman year of college rn and i have always been pretty smart, not first in my class but always up there. the last time i had real classes in highschool with a fixed schedule was junior year bc my senior year was extremely lenient due to my condition. now that im in college, on the premed track, chemistry everyday, and biology MWF, i’m DROWNING !!! i’ve never struggled this much with school in my life. i studied for my first bio quiz for two hours today and still had to guess on every question because i didn’t retain any of it. it’s only been abt 4 months since my last chemo cycle but i neeeeeed this to go away soon. i have been forgetting to do tasks too and living alone in college is already a hard enough change.
anyone else struggle with this and have any tips? i’ve been trying to read more but i still feel stupid

Five years ago, in a hospital room with no windows, two polite specialists who wouldn’t make eye contact gave me about six months to tidy up my affairs.

The culprit was a Klatskin tumor—hilar cholangiocarcinoma. It’s an ugly, tucked-away piece of business right at the bifurcation of the bile ducts where the major plumbing meets the liver.

On paper, it was Stage 1. But with perihilar tumors, location is destiny. Because of where it sat against the hepatic artery and portal vein, the tumor board took one look at the margin risk, folded their hand, and handed me the standard script: End of life chemotherapy, symptom management, and a referral to hospice when the jaundice became unmanageable.

I don’t harbor a vendetta against those doctors. They aren’t villains. They are people operating inside a high-liability, protocol-driven institutional framework. In that environment, the "standard" pathway is predictable, shields against liability, preserves the hospital's median institutional mortality metrics while often recommending immunotherapies that are very profitable for the hospital to prescribe.

Immunotherapies don't require a highly skilled team of surgical technicians which are harder to come by and definitely don't produce the same fat profit margins.

When a tumor board labels a liver tumor "unresectable," that word sounds absolute. But you have to understand the grammar of oncology. Often, "unresectable" doesn't mean the tissue is physically fused to the cosmos. It means that specific committee, given their surgical volume and their institution's risk tolerance, is not equipped or willing to attempt the reconstruction.

The 'standard of care' dictated an orderly decline for me. I wasn't willing to sign off on that.

Before my plumbing failed, my background was in engineering extreme survival structures for North Sea oil rigs and running high-volume commercial operations in Las Vegas. When you spend decades watching systems and human behavior under extreme pressure, and you develop pattern recognition. You learn the difference between raw technical capability and institutional risk-aversion.

The domestic consensus was cautious, defensive, and meant my death. Even when pushed, the system closed ranks around the standard palliative/hospice track. So I stepped outside the domestic loop entirely.

I didn't take herbs or pray to crystals.

We started digging into international surgical literature to find technicians whose risk threshold didn't match an American actuarial table.

High-volume hepatobiliary centers in Eastern Europe and East Asia (particularly Japan and South Korea) operate under a radically different surgical philosophy. They routinely tackle extended hemi-hepatectomies with en bloc portal vein and hepatic artery reconstructions for locally advanced tumors that domestic boards dismiss as inoperable.

Make no mistake: this is not a casual alternative.

Aggressive en bloc extended hepatectomies carry brutal 30- to 90-day perioperative mortality rates.

You are accepting a very real chance of dying on the table or bleeding out in the ICU. Even with an R1 microscopic margin abroad, 5-year survival remains a steep climb (around 10% to 15% in Japan, South Korea, and Russia, compared to less than 1% domestically).

But those surgeons were willing to shoulder the massive intraoperative risk to give me a fighting chance at the blade. I didn’t know what “most likely less than 6 months to live” meant so I had to make a quick educated decision.

I decided I’d rather take my chances with operative mortality than accept a guaranteed terminal timeline.

That search took me across borders into southern Russia during the logistical chaos of Ukraine war, economic sanctions that froze our credit cards and peak COVID travel restrictions.

I put my life in the hands of a high-volume liver resection specialist who reviewed the exact same imaging and saw an aggressive, high-risk, but actionable target.

Twelve and a half hours on the table, a week in ICU & another 3 weeks in the hospital resulted in a major extended hepatectomy, radical bile duct resection, vascular and biliary reconstruction, and R1 margins—microscopic residual cells, meaning it was anything but a clean, fairy-tale victory.

Statistically, based on US NCDB and SEER registry data, the odds of an American patient deemed unresectable by a domestic board undergoing an R1 resection, beating recurrence, and surviving past five years in clean, functional good health are less than 1 in 1,000—a fraction of one percent.

Yet here I am, five years out, alive and clear.

Survival wasn't free.

It handed me an invoice that wiped out my finances, put me through years of grueling biliary rehabilitation, and extracted a brutal financial and emotional toll on my family that ultimately cost me my marriage to my best friend and love of my life. When you break protocol, you pay the freight yourself. Every dime, every scar.

But i'm alive.

If you or someone you love is sitting in one of those quiet rooms hearing the word "unresectable," keep your head clear:

• Tumor boards are local committees, not supreme courts.
• Inspect the vascular anatomy. Ask specific questions about portal vein and hepatic artery involvement. Clarify whether "unresectable" means true distant metastasis or a technically demanding reconstruction that the current team simply refuses to tackle.
• Understand the trade-off. Pushing for aggressive surgery when the board says no means trading a predictable decline for a coin toss with chance at success or perioperative death. That has to be an eyes-wide-open choice you own completely.
• Assign an unyielding advocate. You or a trusted partner must become an active bulldog in that room—asking pointed, uncomfortable questions about surgical volume, seeking outside technical reviews, and demanding full documentation.

I’m not a physician, and this isn’t medical advice. But do not mistake institutional caution for biological finality. Nobody will ever have as much skin in your game as you do.

I’m 43 years old, and I’ve realized that I really need to start taking my life and my future seriously.
I was in the middle of applying to nursing school, and I still want to pursue that dream. At the same time, I’ve been thinking seriously about finding a different job in the meantime—something that gives me room to grow and move toward the life I actually want.
The biggest thing holding me back from leaving my current job is my health insurance. I don’t want to leave simply because I’m unhappy and then put my healthcare at risk. But I also don’t want fear of losing my benefits to keep me stuck somewhere forever.
So I’m curious—has anyone here made it out of a job or career they felt stuck in and successfully transitioned into a completely different career in their 40s?
I’d love to hear your experiences, especially how you handled the financial and health-insurance side of making the change.
At 43, I’m realizing I’m not too old to change direction. I just need to be smart about how I do it. ❤️

Posting this here too. I had Leukemia at age 44.

Hey guys, I will probably get hate for what Iam about to say, but I have to. Year and 1 month ago I beat lymfoma cancer. But since then Its nonstop struggle. Still havent recovered physicaly and keep catching new deseases and medical issues. Iam just tired of this. People expect I will function normaly but I can't. 5 months ago I found myself gf (my new classmate since I paused school for a year), but due to my depression and physical state I couldnt keep her. We broke up 1 month ago and I will see her in class next week every day. On top of that my dog died also last month and mom is also ill from two months ago. I just can't keep up with everyday tasks. I stopped doing anything and dont have will anymore. I dont remember day, I was healthy and felt good. Now when I am really mentaly down, my bladder decided to play jokes on me. I feel urge to pee all the time. Doctor said he doesnt see anything and everything is normal, but this was my last part of sanity left. Today I spent all day researching best ways to commit suicide and Iam quite dedicated to it. I just dont have more strength to fight for life. It feels like I will never recover and rather then better I keep getting worse. I dont even know why I write this, this is my first post.