I was Diagnosed on my 18th birthday with Stage Four Ewings Sarcoma with roughly 15 masses in my lungs. Before the diagnosis i had felt pressure in my right thigh and heat coming from the lump. In HighSchool i was running track and cross country, so at first i thought it was a pulled muscle, i had not felt the heat till i touched the lump. i went for my physical so i could do the same sports (Track and Cross country) i told my doctor about it and he was worried. I dont remember what i had said but he told my step mom to call the oncology office later today after the appointment. They did a biopsy on the tumor, took extra to do some tests on it. I had to go through Aggressive Chemo And Radation. this all happened in 2016. its 2024 and have been dealing with more health issues all linked to long term side effects of Chemo. Two complete hip replacements from getting Avascualr Necrosis. absolute horrible chronic pain, It just keeps adding on more and more as time goes on it seems like. Im 25 dealing with all this, whishing this could've been different I'm burnt out from just about everything (Surgery included).

After All of this, the Aggressive chemo and radation i haven't fully coped with it, like my way of thinking is so diffrent than my friends who havent dealt with anything like this. i Feel like a black sheep in my own friend group, usually when my depression gets really bad, i have this unhealthly but helpful coping mechanism where i push everyone away and deal with it alone, i dont want to sound like a broken record with telling them how i feel. I never really had great exspressing my feelings. Honestly i just would like to talk and meet To others who i can connect with since no one in my friend group has dealt with a situation like or similar to mine.

Are there any other childhood cancer survivors who’ve developed a secondary cancer from radiation treatment???

I (28F) had Ewing’s sarcoma 24years ago from age 4-5. At around 14-19 years old my health declined significantly. I developed scarring on my lungs from radiation treatments I did for the sarcoma. All that lung fibrosis developed into repeated pneumonia infections and now I’m battling Lung cancer for the last few years. All my doctors say this lung cancer diagnosis is a direct link to the radiation damage.

Are there others???? How is everyone dealing with this?

Firstly, I just want to say this may be a trigger for fertility related issues and the last thing I want is to offend or upset anyone! After several decades of being told I couldn't have children I had a miracle baby.

I had 3 years of chemo between the ages of 7-10, just before I reached puberty. This gave me the 'highest' chances of being fertile. I spent most of my 20s in long term relationships not using contraception after being told I probably wouldn't be able to have children (and didnt). At 32 I managed to conceive naturally and unexpectedly with my husband. There were some congential abnormalities found at the 20 week scan. 3 years on we are still investigating what the issues are and whats caused them. I know of one other childhood survivor who had a child with a similar issue.

I can't find any research out there about potential genetic issues that may be caused as a late effect and effect the children born from those who had treatment as children themselves?

Has anyone experienced this, read anything, heard anything? Anything to reduce my child going through the experiences we had!

The reason I am writing this post is to get everything out of me, I have really not been able to share this with anyone, so I guess sharing it here will help me and others going through this fucking disease. Am currently 17m was diagnosed when I was 15 and I'm in remission from 2 years. It was a completely normal day. Came back from school, hung out with some of my friends. In the evening suddenly I started feeling pain in my stomach area, I thought it was normal and neglected it, but the pain worsened at night. We just thought it was a kidney stone so we waited for like 3 hours (we thought that tomorrow we'll go to the hospital). 

at around 12 am  the pain around my stomach region became unbearable and me and my dad drove to the emergency room of a nearby hospital. First they put an iv needle in me and gave me saline and paracetamol to help through my pain. Then they did a CT scan of me. They told my parents I might have cancer (my parents told me nothing) I was just sleeping in the hospital because of the paracetamol. I thought everything was normal it's just a kidney stone and I will be discharged soon.

(There was a mistake of mine too there was blood in my urine from 3 months and I told it to no one l, just like a complete idiot i beleived what Google said (according to google it was just kidney stone and it will get better in a while) so I thought it not much of an issue and kept it to my self for months didn't even tell to hospital people when I was in the er, they only got to know when they asked a sample of my urine).

The doctors were telling my parents to get surgery done immediately but my parents talked to a different oncologist and I was moved to a bigger hospital. Now it had been 3 days in the hospital and around the fourth day I was moved to another hospital. They did a CT scan again and then did a biopsy. They couldn't identify the type of cancer in the first attempt of biopsy after 3 more days we did another biopsy and sent it to a even bigger lab for testing, there they found out I had a very rare type of cancer ewings sarcoma that too on the kidney. My parents got to know about this and still didn't tell me I had cancer. I thought that I just had a stomach infection. The doctors told my parents I'll have to go through 14 rounds of chemotherapy, radiation therapy and a major surgery. After they found out what cancer I had they scheduled chemotherapy and after a week of staying in hospital I was sent home.

So how did I get to know I have cancer ? My parents were not letting me out of the house and i started arguing with my parents and in heat of the situation they told me I have cancer, I just went silent for a moment, didn't cry, and told my parents how could they do this, they knew it from starting and didn't tell it me (i deserve to know what treatment I'll be going through and what illness I have ). During this time I was in 10th grade. One of the most important years of schooling, well I'll come back to this later.

The chemotherapy routine was as follows I was given 5 main types of drugs Doxorubicin Vincristine Cyclophosphamide etoposide ifosfamide This was split into two parts First I had to take VDC (full forms above) then after 14 days IE this would continue for 7 cycles then a surgery and then again 7 cycles with radiation therapy.

My experience on chemotherapy It fucking sucked I fucking hated it to the core. I had to stay for three days at the hospital for VDC and 5 days for IE I would just be lying on the bed, everything I ate just came out, my hair, eyebrows started falling out, I would be sleeping for the most time, it make me feel so fucking weak. I seriously lost my will to live after the first two cycles only. I had to still go through 12 more cycles + radiation therapy.

Chemo port Had installed a chemo port around my chest area because the veins cant handle this much chemo

The time i had to fucking learn to walk again One of the side effects of chemo is that it does nerve damage, some people get in the hand, but I got it on the leg. It fucking hurt. When I told that to doctors they just thought it wasn't that much and maybe I'm just lying to pain killers or something like that. They told me to go to a psychiatrist. But the damage progressively increased there was a time i couldn't walk and had to go through physiotherapy and walk with the help of a stick. Anyways the pain became less and I learnt to walk again.

The surgery I took the chemo for 7 cycles then the big surgery came I just thought, they'll remove a part of my kidney. My parents told me the same. But a week after surgery I fucking get to know they removed my while kidney and I have only 1 kidney for the rest of my life. I researched I bit about it and got to know the other kidney gets larger and does the work of both of the kidneys and it wouldn't impact much of my lifestyle. After surgery they had stopped chemo for around 1.5 months. This the best time I ever had started feeling normal but I knew i wouldn't last for much time and I'll have to take another 7 fucking rounds of chemo.

Chemo again and radiation therapy It sucked but I had been used to it now but then after 3 more cycles they decided to add radiation therapy had to go to the hospital everyday single day except Sundays for a whole fucking month. It seriously sucked. I had been taking chemotherapy and radiotherapy together. Made me more weak. I lost around 20 kgs of my weight in the duration of cancer.

The time i almost died It sucked to go to the hospital. The doctors told us  to come to the hospital with the slightest fever. Guess what I got fever one day and I didn't want to fucking to to the hospital again cause it sucked. I took paracetamol and didn't tell my parents that I had a fever but by night it increased rapidly. After that my parents got to know, we rushed to the hospital. I thought everything was normal. I got admitted and my heartbeat and bp were constantly measured. After 1 hour my bp dropped to 30/60. The normal range was 80/120. Nurses started crowding my room. They put saline at full speed and the blood pressure got normal after a while. If I hadn't told my parents that day I would surely have died if I didn't go to the hospital.

Last chemo I couldn't sleep the night on the last day of my chemo I was so happy that this shit won't happen again.

Blood transfusions Had to go through many blood transfusions in the duration of my treatment. Chemo made my platelets and haemoglobin to drop a lot.

I was in the hospital most of the time during the 1 year of my treatment

Removal of chemo port Got chemo port removed 8 months ago

School test During all this shit I had to write the 10th grade school test which was pretty important otherwise I would have to repeat the year which I didn't want to do at any cost. I was not even sure that I would be allowed to write the exam or not but started studying for it. I got inspired by the doctors saying  that there was a girl of my age that was going through the same cancer years ago and wrote the test and got  good marks on the same test (and I felt like if she can why can't I?). The main issue of me writing the test was that i shouldn't catch any infection cause that could be life treating for me. They gave a little break to the chemo during my exams the doctors were very understanding. Took a dose of vincristine in between my exam. and guess what even I got good marks on my exam.

Remmision I'm currently in remission from 2 years living a pretty normal life no one even knows other than my family and close friends that I even had this terrible disease am very grateful to God for keeping me alive he has done that probably for a reason. I'm ready to help any of you guys struggling with cancer. Text me anytime on reddit and I will reply.

Aftermath I got anxiety and became too self conscious about my looks cause I had seen myself during that time and i hated myself. Also developed anxiety to talk to people. I'm trying to get rid of the anxiety one step at a time and yeah it's working.

Edit: i really want to write a book on this, do you guys think it would be interesting?

I was diagnosed with malignant pleural mesothelioma on this day 19 years ago. It was 1:30 in the afternoon. I still remember every detail of that 30-minute appointment, mostly the look of fear on my husband's face, the very sorrowful look on the doctor's, and me thinking this was NOT how I would die... They told me I would only live 15 months without intervention, so I took the most extreme intervention available at the time. I had my entire left lung removed, but ultimately it's what saved my life. 19 years later I'm still here, living well with one lung..

Hey all, I am M-25. I had osteosarcoma when I was 14 and pulmonary metastasis when I was 17. The 2014 sarcoma surgery was done to replace my femur with an internal prosthetic from germany, however I have lost most of my mobility on my right leg with just 20 degree movement and a limp. I was in a 7 year relationship that came to an end this year beginning and the person has moved on with someone tall and sturdy. I know I should not be comparing myself with anyone but I can’t help it and always feel insecure about my scars (legs and chest) and body. I am trying to come out of it, but it feels like even if I had fought all this and came on top (academically and professionally) I am still valued as less of a person. It stings so bad and Idk how to get a motivation to move forward. Help please?

As the title says, it's been 1 year since my first clean CT. I'm not certain if it's the disease or the treatment that's changed me more. I still have constant, distant nausea. Not like I will imminently vomit, but at least once a day, I get a wave of, "Wow. If I stopped concentrating on preventing this I could throw up right now." On top of that, I still have like a fogginess that makes it challenging to focus sometimes and some memory and problem solving issues. Recently, my boss told me that I lost something through the last two years that affected my ability at my job and she gave me my first negative review in 4 years meaning I don't get a raise or a bonus. Since then I've fallen into a deep well of apathy and depression. Went on leave from work and I don't want to go back. I'm worried that she's right. Am I now less than I was? Am I broken for good? Chemo may have cured my cancer, but I feel like a piece of what made me functional is gone. And because of that, I'm creating challenges for my wife and our family. It's not fair to her. She deserves better.

I has been two years now since I had to have my thyroid, one parathyroid and a lymphnode removed due to thyroid cancer.

sorry if some of this doesn’t make sense, i’ve only realized these feelings and thoughts within the past few weeks so putting them into words is still tough. for context before reading, i’m 22 now :)

i was diagnosed with cancer at 10, out of the blue. the initial diagnosis was a whirlwind, i had a tumor wrapped around my trachea so putting me under anesthesia to try and get a biopsy was incredibly risky. i made it, obviously, and then did about 4 months of chemo. not too bad, all things considered, i guess.

the hospital where i got chemo was 3 hrs away so my family would make the drive there and back all in one day because they didn’t want to/couldn’t afford to pay for hotels. my mom would always go, and then my dad and grandma would rotate as the second adult. my younger sister was 2-3 at the time and would stay at home with other family for the day.

less than a month after i finished chemo, my dad had a massive heart attack and triple bypass surgery, and he wasn’t even 40 yet. all this time i attributed it to his family history which i’m sure did play a factor but i also just realized that maybe the stress of everything from me having cancer was a contributing factor as well?

unfortunately my father is also a raging undiagnosed narcissist. i can’t really remember a time when he and my mom displayed a legitimate model marriage to me, but i also know it continued to deteriorate with every passing year. not sure if this was just a matter of time thing, or if the stress of my diagnosis and associated emotional/financial toll strained the relationship even more. obviously it’s not a concern now, but things haven’t improved. my parents aren’t even sleeping in the same bed anymore and my mom says she would leave if she financially could. i don’t think i’ll ever really know.

my younger sister, from ages 4-9, had a myriad of behavioral issues. she spent quite a bit of time with several child psychologists and therapists who evaluated her and her history, and determined that being tossed around and being the second priority while i was sick, was a childhood trauma in and of itself and likely the underlying reason for her behavior. she has since been diagnosed with autism as well and is definitely behind in social skills and just life skills. i worry about her every day especially as she gets to the ages where her decisions start to matter. i love her so much, and i always wonder how different she might be if she hadn’t gone through what she did when she was so little.

the way i’m presenting this sounds utterly selfish, but i swear it’s not meant to be. it just feels like i’ve accidentally left a trail of destruction when i was running for my life and didn’t notice until i turned around and thought i was safe with a sigh of relief, only to see the debris.

and i’d imagine it feels this way regardless of what age you are when diagnosed, but you just kind of have no choice of who you’re with/around when you’re a kid. thanks for reading this far if you have. sometimes it’s just very emotionally exhausting to be here, and it’s been one of those weeks/months. ❤️

My mother passed away from a massive hemorrhage at the end of October after a prolonged battle with cancer.

I myself (M43) overcame cancer in 2003 at the age of 22. What began as testicular cancer spread to my pleura and lymph nodes. Three surgeries, one round of radiation therapy, and two different chemotherapy regimens (one of which included stem cell treatment and was extremely tough) later, I was declared cancer-free.

In the years following, I attended regular check-ups but was discharged from the Danish healthcare system after five years.

For some years after, I lived a rather unsettled life. In 2009, I moved to the other end of the country, landed a comfortable job, met my wife, and had a son (with the help of fertility treatment, as I became sterile due to the cancer treatments).

I have struggled a lot with depression and anxiety over the years and eventually developed a severe alcohol addiction that nearly cost me my family. Last year, I went into treatment for my addiction and have now been sober for about a year.

I had actually started to feel somewhat okay. My family life improved significantly, and I have grown much closer to my son, whom I, to my shame, neglected because I was in such a bad place.

Then my mother passed away. Aside from the natural grief of losing a parent, it was also deeply traumatic to find her lifeless on the floor after the hemorrhage she'd had.

We held her funeral last Wednesday, and her urn was buried last Saturday. Afterward, my two brothers and I had to clear out her apartment and we divided the belongings that held sentimental value for us.

Among her things, I found her diaries from my time as a cancer patient. She'd written them about me and for me, so she wrote at the end of them. I read them yesterday, and since then, I have just been profoundly sad. It seems I had repressed much of what I went through, and reading my mother’s account of it in her diaries broke my heart—also for her sake.

I think I now understand why, in the years following my recovery, I almost completely fell apart. I had never considered myself as someone suffering from PTSD, but it’s now crystal clear to me just how traumatic that experience was for me as such a young person.

I wish my mother had shown me those diaries earlier. Now, I find myself with an overwhelming need to talk to her about all of this and I can't cause she's gone.

I just neeeded to get this off my chest, I guess.

I’m (33)M brain cancer survivor. Got diagnosed in 2006 and had radiation treatment. I go for yearly skin checks with my dermatologist. I went at the end of September for my yearly checkup. This appointment was very rushed. I have this open wound looking thing on the back of my head that hasn’t been healing. I meant to ask my dermatologist at the appointment but I forgot because he was rushing. But he should have spotted it regardless. Fast forward to November after I ask him to finally check it out, he does a biopsy which is Mohs skin cancer. There are tumors detected in it and it’s has rapid tumor growth along with rapidly growing tumors. It’s a more aggressive basal cell carcinoma. I’m really mad and upset that my dermatologist missed this. I plan on switching doctors. How would you feel if your doctor missed something like this? Maybe I’m overreacting?

P.S. I also wanted to add I recently learned that anything that pops up on your skin that won’t heal is a possible sign of skin cancer.

My brother after 2 years of battling multiple cancer issues and side effects rang that bell today.

I’m (33)M tired of all the tests, doctors, and problems years later from treatment. I had radiation treatment for head and spine tumors. It’s seems like I can never catch a break. My sugar and cholesterol are sky high. I workout regularly. I’ve been have skin rashes my dermatologist has no idea what’s causing it. So I’ve been in his office every other week trying new medicine. I have this saliva build up on my tongue that i just got rid of months ago. Next week I see the dentist. My Oncologist made me get an echo done on my heart. Now I have Diastolic dysfunction I have to worry about. Then an hour after my doctor messaged about it, now I have an appointment with an Oncologist cardiologist in two weeks. I still have to make an appointment with my gastroenterologist for January. Next I’m due for my allergy shot. When does it end? If I would have known my whole life would be nothing but doctors and tests I would have said screw the treatment in 2006. I’d rather die than deal with these risks.

UPDATE: Last week my dermatologist did a small biopsy on this scab looking thing on my head. They called today and told me it skin cancer. Mohs skin cancer. I told them it’s over my V.P. Shunt. First they said to get permission from my neurosurgeon to get the approval for the Mohs skin surgery. Then they said the doctor doesn’t feel comfortable with performing the surgery. Now I have to find someone to do it. When does it end?

I was diagnosed dec 05 2022 left kidney removed jan 24 2023 just had my bi annual scan a week and a half ago still no signs of reoccurrence

Hi everyone,

I'm Talia, a senior student at the University of Illinois Chicago, working on my thesis about patient experiences in oncology waiting rooms. I’m reaching out to hear from oncology patients, caregivers, and loved ones who have spent time in these waiting rooms.

If you’re open to it, I’d be incredibly grateful if you’d share any details about your experience—especially aspects of the waiting room that stood out to you, either positively or negatively. What helped make the environment more comfortable or calming? Were there any features or approaches that made the experience more challenging?

Your insights could play a key role in shaping my senior thesis and in helping improve waiting rooms for future patients. Thank you so much for considering this!

Kind regards,

Talia

I found out this morning that one of my friends is in hospice care for her cancer. I’m feeling guilty for a couple of reasons.

1. I feel like I shouldn’t be as upset as I am because I haven’t talked to her in awhile.

2. I’m feeling really triggered by finding this out but I feel guilty and selfish for feeling this way.

I don’t want to be the person that only reaches out because she isn’t doing well especially since it’s been a couple of months since I’ve last talked to her because while I was going through chemo it really bothered me when people only reached out when I was sick and no other time.

I’m just feeling so overwhelmed and confused. I don’t really know the point of posting this but I don’t know what to do with how I’m feeling.

Thanks for reading my rant if you’ve gotten this far.

I just found out that my breast cancer has metastasized to my spine , hip , pelvic bone. All this time I thought I had sciatica . This is my third time battling cancer . Please keep me in your prayers . I feel defeated. I have a 10 year old son , and thought I had an amazing life . I know that God has the final say, I’m just really down right now . Please keep me in your prayers .

In just a few minutes I’ll see the oncologist. Last Wednesday they saw something on the CT scan. A spot on my lung. I’m barely a year out from my last chemo. I had 4 different types of cancer 2 being liver related. I’m very nervous.

I’m (33)M tired of all the tests, doctors, and problems years later from treatment. I had radiation treatment for head and spine tumors. It’s seems like I can never catch a break. My sugar and cholesterol are sky high. I workout regularly. I’ve been have skin rashes my dermatologist has no idea what’s causing it. So I’ve been in his office every other week trying new medicine. I have this saliva build up on my tongue that i just got rid of months ago. Next week I see the dentist. My Oncologist made me get an echo done on my heart. Now I have Diastolic dysfunction I have to worry about. Then an hour after my doctor messaged about it, now I have an appointment with an Oncologist cardiologist in two weeks. I still have to make an appointment with my gastroenterologist for January. Next I’m due for my allergy shot. When does it end? If I would have known my whole life would be nothing but doctors and tests I would have said screw the treatment in 2006. I’d rather die than deal with these risks.

I’m 30 now, had neuroblastoma from birth to age 11. I am NC with all of my siblings, LC with my mom. I have a phone call with my dad every couple weeks but that’s it.

The older I get the more confused I feel about how my family treated me. I recently watched a nature documentary clip about an eagle that would starve its other children and only take care of the one that looked most likely to survive. It makes me wonder if humans have the same inclination.

Hi all, I am a 34 y/o F 5 years in remission from stage 2B Hodgkin’s Lymphoma. About 4 months ago, I began noticing a rash/itching. It occurs randomly and all over my body. It turns red, gets a burning/intense itching and welts when I scratch. Before my diagnosis, I had eczema, which turned out to be a symptom of my cancer. This definitely isn’t eczema. It’s kept me up a few nights. I have taken Benadryl to sleep but idk if that stopped the itching or just made me tired enough to fall asleep. My oncologist says my bloodwork is “stable” where some things are high and some things are low, but they’ve been that way for a bit so he seemed to brush it off. I have an appointment with my PCP coming up and I just have this thought of- why am I doing annual bloodwork if they aren’t going to look anything further. I try not to spiral and focus on every little thing but this just feels… different. So I guess my question is- anyone who has “itchy skin” as a symptom- did it present like this? Am I overreacting? Is there anything I should request my PCP look at? Is it just nerves about potentially being “cut off” from regular monitoring? I also may have night sweats?? Waking up hot and taking a layer down/pulling an arm out doesn’t do much. But I didn’t have that as a symptom before so I’m not sure?? I feel like these are such vague symptoms. Like I said, I’m trying not to spiral but I also want to be vigilant about my health. Any help is appreciated…. I hope you are all happy and healthy. Thank you.

So I want to keep this short but I was diagnosed at the age of 3 with T-cell lymphoma. I was cured at the age of 5 and have been in remission for over 24 years. But recently I have been struggling with a lot of survivors guilt recently. I have had some major trauma events occur in the past year. Some of them have been life changing for family and friends. Which I feel has added to my mental health struggles. I also suffer from anxiety and depression with anxiety both that I have and my family having it. I am just needing advice on if anyone else is going through the same thing and what are good coping mechanisms? I am seeing someone in the next couple of weeks. But I definitely feel alone right now because I can’t describe to my friends what I am going through.

Sorry for the long windedness. I am an adult childhood cancer survivor. I was diagnosed with non-hodgkins lymphoma at 8 years old and went into remission about a year and a half later. Treatments included chemo, meds, pokong, prodding, surgeries. I am now 48. Over at least the last decade I have experienced some significant symptoms including cognitive decline, muscle problems, joint problems, and even personality and mood changes which seem to progress more and more every year. Overall, I feel like I am wasting away physically and mentally. Maybe aging faster than normal? I've see rheumatologists and neurologists and none of them seem to want to help me. I am a father and husband and have a family to support. This is getting harder and harder every year and I am concerned I am going to get to a point where I can no longer provide for my family.

It just recently occurred to me that I could be suffering from some kind of paraeoplastic syndrome or late effcts. My original cancer never showed in my blood work. It took them awhile to find it even though my mom insisted to my doctors that something was wrong due to my constantly getting sick and even not being myself. Finally, a tumor popped up in my neck which they biopsied and found the cancer. By then, it had spread throughout my sinuses and throat. Luckily, it stayed local.

I am an investigator by trade and researching and investigating come naturally to me. There is research that suggests an increased timeliness for aging of childhood cancer survivors. Also, a decreased lifespan. Also, I've been reading that though they are rare, paraneoplastic syndromes can pop up well before a cancer is found and even after treatment is completed. Is anyone else going through something similar? Does anyone have a suggestion for what to do? I've of course let my doctors know about my previous cancer but none of them seem concerned. Everything I try to insist something is wrong I have been treated with disdain. It really is sad. I feel lost and am struggling with what to do. I appreciate any suggestions or even common understanding. Thank you!

Josh

Hello.

I'm M31. Before I was diagnosed with a neuroendocrine tumor I had some mental health issues. I was diagnosed with bipolar II at 16, and ADHD in grad school. I grew up in a fairly abusive household which certainly contributed to the bipolar diagnosis. Despite my mental health struggles I managed to keep in shape, maintain good relationships with a few friends and a gf (now wife), and progress through university, achieving a PhD.

In the middle of my PhD I got my diagnosis after nearly 3 years of being ill. Neuroendocrine tumors are fun because they randomly dump neurotransmitters and hormones in addition to the normal symptoms of being unwell. Typically when there's an episode you sweat profusely, your heart rate skyrockets, it feels like you can't breathe, and depending on where it's located, you get terrible GI problems. Unfortunately, sweating, heart pounding in your chest, and and feeling like you can't breathe are also symptoms of an anxiety/panic attack. Thanks to my biplor diagnosis I was dismissed for ages.

It was tough going through my mid to late 20s missing out on so much because I was sick. People would always tell me I didn't look sick, which as most of us know is infuriating. Anytime I felt too unwell to go somewhere it felt like I was faking it because I didn't have a real diagnosis. Thankfully my wife understood and recognized something was wrong, I'd have never made it without that support. Anyways, I got my diagnosis, did my treatment, had the surgery and "all is well." Execpt it isn't.

It's been nearly 4 years since my surgery, plus the 3 years of being sick before hand. I lost a lot of who I was, physically and mentally. I'm currently between job contracts so I don't have much structure in my life. It feels like I'm back living those days when I just did nothing at home while waiting to heal. I don't feel the exhaustion anymore, but I'm terrified of feeling it again. Therefore, I refuse to push myself. If I feel the slightest bit tired I won't do anything that day. I'll watch youtube videos, play video games, read, and otherwise do nothing, which, makes my mental health worse. I feel like I'm withdrawn from my friends and family. I don't spend much quality time with my wife. I have a dozen projects and ideas that I've started and given up on, some of them are deeply important to me. I know I won't feel fulfilled in life if I can't realize those projects.

All of this makes me wish I didn't fight so hard. I vividly remember my last time in and out of the ICU. It took every bit of energy to keep from slipping away. A large part of me wishes I had just let go then. This isn't a cry for help about it, with my mental health diagnosis its been on my mind for half my life, but the thoughts of doing the big "S" are powerful. The life I live isn't worth living. However, I know it can be.

I have the foundation I need to thrive. Yet, I'm trapped in this pattern I existed in when I was sick and I don't know how to break free. I'm on medication for all of my mental problems, the same stuff that has worked for years. I did therapy for a year, but it mostly focused on the issues that happened in my early years, and helped me meet some of the grad school goals I was worried about missing.

Has anyone else felt trapped in this post treatment purgatory? What helped you get out of it?

Thanks for reading, I know it was long.

Anyone have a traumatic experience with their cancer as a young child and developed debilitating mood disorders as they grew older? I’m having a very hard time and have suffered with severe depression and anxiety for as long as I can remember. I was diagnosed a couple couple months ago with CPTSD (even though not essentially in the DSM yet) and/or BPD. I have tried every combination of medicines under the sun and exhausted all forms of alternative treatments as well ketamine, ECT, TMS and others. I’m beat and don’t know where to turn. Anyone have similar experiences and found or working on peace?

Hi all,

Obviously, I prefix this post by saying that I am looking into some counselling/therapy in the future.

So, my (30m) cancer journey started out late last year. I have Crohns disease and had some recent flare ups, leading to me getting some scans. Upon follow up with my Gastro doctor, he advised me that they had noticed something growing on my kidney and he was sending me for further tests and referring me onto another team.

I got the scans done, followed up with my GP (unfortunately i didn't hear back from the public health system until a few days before my surgery) and he referred me to a specialist. The specialist showed me the scans and there it was, a big ol' tumor taking up about 50% of my kidney. Needless to say my partner and i instantly broke down (we didn't even know it was cancerous yet, tests had shown otherwise).

A couple of weeks go by, payments and arrangements are made and I'm in the hospital, recovering from having just lost the whole of my left kidney with successful surgery. A week after i get home i get a follow up call from the specialist, telling me that the tumor was in fact cancerous and it was a good thing that we got it out. I was so hyped up on painkillers i didn't even take in what he said. I shared the news, in an extremely nonchalant manner, to my partner. She suggested immediately I call back and confirm, as well as get a copy of the report.

We received the report and yup, a rare type of kidney cancer taking up 55x55x50mm of my 135x65x55mm kidney, also making my kidney weigh about 3 times the average (I know I'm a bigger guy at 6'2, but my kidney shouldn't be that much bigger). Still can't believe to this day how big it was...
In a timespan of less than 2 months, i went from living a normal life, to being told i had a growth, to it being a tumor, to then losing a kidney and being told it was a massive cancer.

Now to today, 8 months have past, surgery wounds healing nicely, back playing ice hockey (and won with a shutout in my first game back). Saw my specialist for a follow up and all bloods and scans show that the cancer was completely removed by the surgery and it was confined to the kidney, hooray!!!!

But, i don't know. There's a part of me that feels like a fraud, like i can't call myself a cancer "survivor". I didn't go through the months of appointments, the shock discovery, the therapies and treatments, the recoveries. I just had 1 surgery and 2 months of recovery and that was it. No prior symptoms or treatments or appointments. To this day I still don't quite believe what happened as it all happened so quickly.

Had anyone else had a similar experience?

So, lately I have been asking myself (26F) this question a lot. I survived AML 5 years ago, the battle was hard af, mentally and physically draining. Going back to normal was some next level thing to overcome, my self-esteem went down, I couldn’t date or have sexual relationships( especially now with CHB diagnosis). After all of that I thought I will be done with it but recently I got diagnosed with Chronic Heart Failure (due to treatment)and Hepatitis B,in a spame of 2 weeks, and it completely destroyed me. I have bad reactions to medication and every day is super difficult to overcome due to side effects. I can’t find a reason why did I survive to still struggle and knowing I will never be a normal 20yo is a hard pill to swallow.

I do know there are worse things in life and worse things to live with but yeah..

Edit: Thank you all for making me feel heard and understood 🫶🏼 I send love to all of you who go through similar things

Hi All,

I felt compelled to come here and share a bit of redirection I’ve had on my survivor journey. 18 months in(uterine cancer).

I believe many, if not most, of us can relate to feeling lost and unsure what we want out of life, what the point of it all is or how to rebuild after experiencing cancer.

For me, upon diagnosis, I had so many random thoughts and almost regrets for how I had spent my life for the 36 years prior to that point. Post cancer, I thought I had to make all these drastic changes in my life and the truth is- I did need to make many.

One thing that weighed heavily on my mind was my career, I had this big idea it needed to contribute to some well-meaning , bigger picture, “life purpose”. I quit my long-term toxic job 5 months into recovery and took 8 months off to deal with my emotional and mental well being.

8 months in a job popped up that I was very much qualified for at a cancer treatment facility. I thought “This is it! This is my purpose!”. So I applied and interviewed. They extended the offer to another candidate and I took a job at another company that was still in the industry I had left.

Being in the industry for as long as I have been. the new job wasn’t very challenging (which I felt was a priority in my work life), nor was it connected to some greater meaning or purpose for the greater good. It did have a great team of people that I connected with, management that appreciated their staff, flexibility in work hours and the ability to WFH when convenient though.

5 months into the role, the cancer treatment facility had another job opening and hired me for the role this time. Amazing! My work would finally have purpose and meaning.

To make a long story a little shorter, day 3 into my new role at the hospital I reached out to my previous employer and asked for my job back. They happily obliged - with a raise.

The office employees at the cancer centre were all miserable, on autopilot, and barely interacting with one another throughout the day. Came in in the morning, locked down at their computer, and may have spoke a few sentences throughout the day. Had they hired me the first time I applied for the role, I may have become one of them as I wouldn’t have known better!

Their original rejection was my redirection to a work place where I didn’t dread waking up in the morning, we have laughs, enjoy each other’s company, get our work done and go home happy at the end of the day.

My purpose, post cancer, is just to enjoy the now! Appreciate and be grateful for sunsets and sunrises. Soak in the beauty all around us and connect with other people. I never want to be a ghost of a person just collecting a pay check again.

Cancer reset a lot for me. I hate what it took away- my fertility- but I’m grateful for how I’ve grown.

My Mother was diagnosed with uterine cancer in 2011. She had a hysterectomy, chemo and radiation and has been in remission. That said, she is still experiencing extreme side effects 13 years later.

Due to the radiation in her bowel area post hysterectomy, she has scar tissue built up in her colon / intestines. Ever since radiation, she has experienced what we call “episodes.” These include bouts of nonstop vomiting, diarrhea, pain, and not being able to eat.

Without getting into medical detail, she has had surgery and multiple hospitalizations due to these episodes. Her doctors say there’s nothing they can do and that she has to deal with it for the rest of her life. These unexpected episodes cause a great deal of physical and emotional stress. Her quality of life is suffering.

She has changed her diet time and time again over the years and has met with dietitians. She can’t have fresh fruit or veggies, or anything with seeds or skin. She has to have minimal amounts of meat, no coffee, etc. etc.

I am reaching out on Reddit for the first time ever to see if there is anyone else out there experiencing something similar. Whether it be themselves, a friend or family member. We are seeking guidance and support as we explore next steps. Mom is in the hospital now and we are desperate for help.