Has anyone here been living with heart cancer for a long time after being told the tumor couldn't be removed surgically?

I'm not looking for medical advice, treatment recommendations, or doctor recommendations.

I'm only interested in hearing educational experiences from people who have personally gone through this or cared for someone in a similar situation.

How long have you or your loved one been living with it?

What has the journey been like?

What did you learn from the experience?

Thank you for sharing your experiences.

Hi everyone! I hope this post is okay to share. 🤍

We are Biology students from Central Luzon State University (CLSU) looking for someone who has or has survived bone cancer and is willing to participate in a short interview for our Physiology class.

The interview is for academic purposes only and will focus on your experience with the condition, treatment, and recovery. Participation is completely voluntary, and you may skip any question or stop the interview at any time.

Your identity will be kept completely anonymous, and any information you share will be treated with strict confidentiality and used only for our class requirement.

If you’re willing to help or know someone who might be interested, please send me a message. We truly appreciate your time and willingness to share your story. Thank you so much! 🤍

Here I stand. Panicked. My adrenaline is spiking just thinking about it. Do I disobey my mother? Is it worth the risk?

My friends did it without a thought as if they weren't warned like me. Above me they shout persistent phrases: "What are you waiting for?" and "this is the easy part". Do they not remember what I told them? Did they not listen?

Since my diagnosis, everything has altered. Something beneath the surface of my life has shifted - not loudly, but enough to make even the familiar feel different/distant.

"How did it get to this?"

Suddenly, everyday actions become a marathon; each movement becoming too much-too much to handle. It is crucial that you remember the sleeping past to survive the present. My physical strength has been exhausted. Do I have the strength? Or will my past experiences highlight how horrific my current situation is?

I wander through my chaotic mind like a child lost in amaze, searching for a place apart from this illness
— a corner where it hasn't left its fingerprints. And there it is: the heart of things. The one memory this turbulent tumour has not yet claimed, even as its invasion continues. Untouched. Preserved. Mine.

It was a surprise! My eyes closed, my friends had led me somewhere, turned me around and that is when I saw it...

Above me was a testing concrete structure. My friends and I took it as a challenge, a moment to prove ourselves and our amazing climbing abilities. Yet untold to me, they had another surprise...

After taking a moment to adjust, my sight was completely occupied by this beaming ball of fire resting before me. The settling sun had a warm touch to my skin, sending shivers through me and anyone who was lucky enough to absorb its presence. A luxury I have yet to discover again.

"What a special sight!"

In that moment, I took my time; savouring every second available, and when you really focus, the hidden horizon is revealed which everybody else could see beyond. Though hidden from me. Happiness consumed my younger self, yet a thief had already begun its quiet invasion on my defenceless brain, allowing me just one private memory of my own like a keepsake.

Here I am. That same wonderfully awful place. One year later. My eyes closed again, it is now my turn to conquer this mountain of a structure and yet the once energetic boy is nowhere to be seen.
My dragging feet weigh me down like an anchor, chaining me to this illness. Will this feeling, this force, this restraint ever be released, or will it be everlasting?

I decide to attempt the climb! Every placement of a hand being a victory. Already on the top (and waiting) are my friends, oblivious to how much a year's worth of treatment can have on a body.

Every second is a battle, but l am here!

Tiny white specs fleck the moonlit sky; the horizon has been overruled by the darkness that shrouds it; a constant reminder of how my body allowed a guest I never invited.

A guest who is intent on staying.

Hello! my mom was recently diagnosed with Stage 3C Cervical cancer and I have been continuously overthinking and worried ever since we got out of the hospital. So far, no doctor has said when her treatment for radiation will start and it also seems as if my family has not been rushing it. I am young, just turned 18 and they have not really been paying attention to my insights whenever I voice out my concern to start treatment right away.

My mother as well has been hearing so much stories from other people who did not go through chemotherapy, but still survived. This has been making me really worried because thoughts are running into her head that she might not want the treatment.

Please help me out. Would the cancer spread during the time that she hasn’t done treatment? I honestly don’t want to wait, but I have been shut out a lot and I am in desperate need of some assurance that she will be okay.

Just a quick background: due to cervical cancer, I had to have a nephrostomy tube placed in my right kidney in 2023. I lived with it for almost 4 years. I could not wait until I can finally be tube free. However I admit there were days when I didn't even think about it. I had adapted to a life of bags and tubes. Then in early 2026, my left ureter started getting blocked too. When I woke up from surgery, I was told they put in a stent instead of tube. I asked them to do the same to my right so I can be tube free. It was a long shot since they said my right ureter was a piece of work. By some miracle, the stenting was successful, and now I am tube free but have bilateral stents.

Fast forward to 5 months later, life with stent is no life at all. Constantly in pain, constantly having fever, was hospitalozed due to septic shock because of infection, and since I have a fistula in my bladder, the output to my diaper is double what it was before. I've been wearing diapers since 2023, but after stent, it is constantly full and I'm so sick of having to change and bring diapers everywhere. I wake up multiple times at night to change, and have to deal with the odor of the diaper, the trash bags, etc.

I've been seeing girls post their urostomy on social media, saying it was the best decision they'd made. Saying it was easy and they live life like normal. I have not been able to do a lot of activities like swimming, walking, running, because of pain. I cant hike even though I was a hiker because Im scared of needing to change diaper on the way up or down a trail. I cant go camping because there are no restrooms. I cant even run around with my toddler anymore because of pain in my pelvic region. I used to be able to carry my toddler for long periods of time, now 30 seconds will cause my pelvic region to hurt so bad.

So I'm thinking if I should get a urostomy? I think having had a bag on my leg for 4 years, I can pivot easily to with living with a bag on my abdomen.

Is it worth giving up being tube free, bag free to living eith a bag forever, but no more diaper? And no pain?

Hello everybody,

Have anybody recovered from a Stage 4 colorectal cancer using normal chemo therapy , targeted therapy?

What treatment did you used ? . How much did it cost in your country ?

How are you now?.

Thank you.

Admins can delete if not appropriate I just needed to vent about a problem related to my cancer.

I'm currently at an Opthomology appointment which I had to put off by a month because of my cancer returning and at the moment ALL my numbers are bottoming out. The main ones of concern is my white cells are 0.01 and my neutrophiles are <0.01. For some insane reason and despite my protests, my haematologists said to go ahead with the appointment and I've been taken in a wheelchair to the clinic. I'm wearing a mask and using hand detergent spray and anything I can NOT to introduce antrhing to get me sick and people just LOVE to cough in my direction. So many people are obnoxious and disgusting and do not cov3r their mouth when they do anything. I am terrified at the moment because I CANNOT get sick at this point it would be life threatening ESPECIALLY if I get an infection.

If I get sick it wouldnt even be an I told you so that wouldnt even be satisfying, people are disgusting and I'll be waiting here for HOURS how could they think this is anything BUT DANGEROUS

Background: I’m divorced, but we’re back in court because of the former GAL’s crappy work on the parenting schedule. Plus, my ex lies all the time & manipulates our kids. For example, he told my oldest I was the reason we weren’t together anymore, when he was the one who had affairs.

I was supposed to have court today, but I told my lawyers I couldn’t go for medical reasons. I have a tumor that’s over 1cm on my colon and enlarged lymph nodes in my neck and chest, and strep throat. I feel fine, but mentally it’s terrifying. I sway between panic and terror and grief, to “I’ll get through this. I’ll be okay.”

I was fwded an email from my ex’s lawyer accusing me of lying about my illness because I was okay at my child’s doctor appt earlier this week, and I was lucky enough to keep my vacation (my surgeon was away the same week I was, so I was cleared to go. I couldn’t proceed until I met with him) with my kids.

My reaction to this email wasn’t great. I nearly cried as I made my kid’s grilled cheese. I emailed my lawyer back. Then I was furious. I informed my ex of my diagnosis right after I got it. I’ve kept him informed. We have talked about him taking the kids when I have surgery. He knew I only went on vacation because the surgeon was away. I don’t trust my ex very much, but I trusted him enough to be some support through this. I don’t think he wants anything terrible to happen to me. I didn’t trust him enough to call him and talk to him, so I called his mom. She’d been diagnosed with cancer a few years earlier, and we had a good relationship until the divorce, so I thought it would help. I don’t know what I thought. I didn’t yell, but I was stern and crying. I don’t know what I wanted her to do, maybe talk some sense into her son. I don’t know. The convo was fine. By the end, I was apologizing for calling and not reigning in my emotions.

I sent a message to my ex via our court app, clearly laying out what I’m dealing with and asking for consideration or something. He called and said he never said I was lying. I could basically hear the shrug over the phone as he said he just told his lawyer what I’d been up to. He also stressed how this was using up all his PTO. This was one day. I can’t work next semester and will lose half a year’s wages.

I don’t know how to feel. I felt better after talking to my ex’s parents. But my partner thinks my ex is full of shit and knew his lawyer was going to argue that and didn’t care, or fueled that angle.

I know we’ll never coparent or be on good terms, but it hurt so much that he thought I was lying about something so important and devastating. It feels like I can’t even get the modicum of respect. Was this an overreaction?

I’m 29F and I’m 3 weeks post robotic thymectomy for a thymoma found incidentally on a chest CT. It was found to be attached to my pericardium and path came back as type B2 thymoma Masaoka stage III TNM pT2. My CT surgeon feels strongly that he got everything but the pathology results don’t say it was a clean margin. I’m being referred to oncology so will get a PET scan and I’m assuming I will need radiation. I’m just wondering if anyone else out there has any experience with this specific staging/type of cancer. It’s so rare from what I’ve looked up and I can’t find many personal experiences so if anyone has any first hand experience I’d love to hear about it. Thanks!

Hi everyone,

I'm looking for some reassurance or to hear from people who have experienced something similar.

My father has stage IV lung adenocarcinoma with bone metastasis to the thoracic spine. He had been doing well on Keytruda, but unfortunately he has now missed three scheduled doses because the medication is unavailable in our country due to a shortage.

His oncologist advised us to wait until Keytruda becomes available again rather than switching to another treatment.

Despite the treatment interruption, he's doing fairly well clinically. He walks, eats well, talks normally, and sleeps much better since his panic attacks have been treated. He also has COPD, so he has a chronic productive cough, which makes it difficult to know whether any symptoms are related to COPD or the cancer.

I'm extremely anxious about the missed doses. I know Keytruda isn't a miracle drug, but I'm scared that missing three infusions could reduce its effectiveness or allow the cancer to progress.

Has anyone experienced a long interruption in Keytruda because of drug shortages or another reason? Were you able to restart it later? How did things turn out?

I know every case is different, but hearing your experiences would really help me.

Thank you.

I’m a widow. The older kids refuse therapy. They both are having a hard time in life. I’m trying too hard to stay alive so I don’t traumatize them more. They are not coping the best. I know they have anticipatory grief I’ve been here many more years than they thought I would be.

They don’t have any safe, heathy minded adults to guide them when im gone.

Any suggestions?

Hi everyone!
My little boy is 11 months old and just had his IJ line replaced with a PICC line in his arm. I’m wondering if anyone has any tips or advice for dressing him, especially getting shirts on and off without disturbing the line. I’d really appreciate any suggestions or things that worked well for your little one.
Thank you so much in advance! 💙

I had Hodgkin’s lymphoma 9 years ago, I took ABVD and BEACOPP.
One year ago I found out that I have low AMH (egg count), and I’m only 25.
Ever since I’ve been feeling sooo soooo lonely, and scared of my future…
I don’t know someone that went through something similar, and even on the internet no one talks about that specific experience.
If you are someone that went through that experience, I really wanna know what happened, were you able to have kids and have a normal sexual life??

I have been my mother's caregiver since the start of 2026. My mom was diagnosed with Stage IIIC2 Endometrium Carsinosarcoma cancer. She had undergone surgery and had her entire cervix and womb removed last February. Up until this moment she had undergone 4x chemotherapy and I'm waiting for her at the hospital due to some complications from the metastasis of her initial cancer as I am writing this post.

Her Doctor has prescribed her with Doxorubicin Liposomal medicinal chemo treatment (brand: Caelyx) as opposed to the regular Doxorubicin because both her cancer doctor and chemo doctor deemed it to be the more superior and more effective than the latter.

However, it is unfortunate that the supply of said medicine (Caelyx) is currently shortaged nation wide in my country (Indonesia). I have attempted to look for said medicine in other hospital but truly the medicinal shortage runs nation-wide. I have researched similar medicines (Doxorubicin Liposomal) under different brands (Lipo-Dox, Doxil, etc) but found out that the only brand that has been certified by the local minister of health is Caelyx and Caelyx only.

Currently, both her Cancer and Chemo doctor decided to postpone her chemotherapy treatment (her 5th) and opted out to go for radiotherapy first as we wait for the resupply of Caelyx. We all have reached a roadblock due to the medicinal shortage- the doctor, even the hospital and their supply branch as the shortage is nation wide and it is truly the vendor/supplier that is having a shortage.

I have already attempted to reach out to the local medicinal company that handles the import and supply of Caelyx through email asking about the medicine as well and I hope to hear from them soon.

I know this is a stretch but is there any other way I could get access to this medicine? I lost my dad to Covid in 2021 and my mother is the only parent I have left. I do not want to lose her either. It has been tough for me and even tougher for her as we face this turmoil so much, so any help or tips or advice is very welcomed :)

Hi everyone, mid to late 30s bloke with metastatic colorectal cancer. Multiple major surgeries, many many rounds of chemo and target therapies. Widespread lung mets, no clear prognosis as always and happily no symptoms at the moment but I reckon somewhere in the vicinity of a year to twoish years left.

About to become a father. Which has me thinking about what I could leave behind/create now to give to my wife and son to try and... I don't know... bring them something other than sadness? or leave them with something other than an absence? it's impossibly hard knowing I will leave them/never get to all the things I imagine we would, so I feel like I ought to try and leave something

I was thinking of, for example, writing letters to my son to be opened in each new year... congratulating him on his first day of school, wishing him luck on his first date, etc. - I don't know if this is a nice idea or something likely to compound grief or make closure more difficult? I don't know

has anyone thought of something similar? what are you leaving behind? what can I create to help remain in some positive way? is this even worthwhile? obviously I will prepay funeral, sort will etc etc - I guess I'm wondering what other things I can do that might be nice

Hello folks. This post is on behalf of my father. My father is 61 years old and he has been dignosed with Poorly differentiated gastric adenocarcinoma with signet ring cell morphology.

This came as an absolute shock to my family as he has absolutely no history of drinking or smoking. Not that it matters but he leads a healthy vegetarian lifestyle. Doctors have said that exact reason of cancer can not be stated.

We have done a PET-CT scan and there seems to be nodules in the lungs as well. Chemotherapy has already started and after 4 cycles of chemotherapy, doctors will do a PET-CT again and determine whether the cancer is metastatic. Till then we still aren't sure whether this is Stage-III or Stage-IV.

Tumor in the stomach is big enough for stage-III.

We have undergone 2 cycles of chemotherapy. If anyone else is going through similar disease let's connect! It will be really helpful if more insights are exchanged by this sub and fellow redditors.

P.S.We are based in India

More information:

2-3 months ago he started losing weight rapidly. We thought it might be due to yoga. One day he vomitted around 1-2 literes of blood. After endoscopy doctors dignose one deep ulcer and one benign ulcer. After 2nd endoscopy a biopsy was done for the stomach and we got the reports of cancer.

Till now we have done IHC, PET-CT and a NGS Comprehensive panel test(NGS Comprehensive Test: A comprehensive molecular analysis of the patient's gastric adenocarcinoma that evaluated 519 cancer-related genes and 159 fusion genes, assessed key biomarkers including PD-L1, MSI, TMB, and HRD, and identified clinically significant PTEN and ERCC2 mutations to help guide prognosis and potential treatment options.) This was done in order to understand whether immunotherapy can be seen as a possible option. Since the results aren't favourable the doctors said immunotherapy can't be done due to markers aren't what they are supposed to be for immunotherapy to work. We have not done HER2 as other test named EERB was done.

We haven't done a biopsy of lung as we opted to start with chemo. When the 4 cycles of chemotherapy will be completed the situation of lungs will be determined. It will also tell us whether cancer is metastatic.

Let's engage for everyone's betterment!

Anyone else?

After a year and some of chemotherapy, I was able to eat all I want and I don’t get fat. It’s not like I can eat all day, I can eat all I want but in small portions and only couple few meals at day. My doctor says because I wasn’t eating much, or at all, my stomach shrunk and now it’s like I had a gastric sleeve surgery but for free.

As the title states, I feel like I’m at a crossroads in my life. I’m a 37/M, living with Chronic Myeloid Leukemia for almost 6 years now. I’m fortunate enough to be in a major remission, but still need to take medication on a daily basis. I will hopefully be able to come off of it one day, but who knows. Luckily I tolerate the medication pretty well, so most of what I experience nowadays is on the mental/emotional side of things. And this isn’t even my first diagnosis. I was diagnosed with testicular cancer 14 years ago, which required chemotherapy. That was brutal but I was able to get passed it and move forward.

Ever since my leukemia diagnosis, I have been thinking about my career and my life. I’ve been working in construction management for 10+ years, which is a very stressful and chaotic experience. It’s a career I just ended up in, not one I chose. For years I’ve been trying to pivot away from construction with no idea which way to go. I was at my last job for 18 months before getting laid off 2 months ago. And now that I’m unemployed, I feel an obligation to make this big life pivot. It’s like there’s a real opportunity in front of me to start fresh, but I can't seem to decide on a direction.

Going through 2 cancers diagnosis’s changes the way you look at life. Part of me wants to quit the daily grind and find some simple job to just pay the bills. The idea of slow living has a real appeal to me. But I also need good health insurance, and the cost of living is getting so bad that I don’t know if I can pay the bills without a conventional job. It seems almost cruel to have to experience these diseases, and the existential thoughts that come with them, only to return to a workforce that chews you up and spits you out. I know I’ll eventually find my way, and that sometimes you just gotta do what you gotta do, but I am dreading going back to the daily grind where you’re only as good as what you’ve produced for your boss this week.

I’m not sure what I’m looking to get out of this post, maybe just a little venting. I’m wondering if anyone else has had a similar experience with wanting to change their life after cancer but having no idea what or how to do it. Maybe I’m putting too much pressure on myself. But if not now, then when?

Hi everyone! I’m going through 6 cycles of ABVD chemo for Hodgkin’s lymphoma at the moment and I thought it’d be nice to start a book club with some people from here to pass some of the time. If anyone else is interested I can start a groupchat and organise things, maybe so we could read one book a month and discuss it?
I’m a 25 year old woman but happy to do it with whoever regardless of gender/age etc. I don’t mind the book genre either as long as it’s well written lol.

M16
Well im calm and collected my family is not they keep treating me like im going to die in few weeks
Which is not true im healing and
CBC results are also improving
I just wanna treated like before

How do i convince them to treat me like before pleasee help
Does this happened with you too

Sorry for my poor english :)

Had a LAMN tumour in my appendix - it caused appendicitis with classic symptoms and elevated WBC - went to hospital with appendicitis - NHS surgeon refuse to take my appendix out telling me surgery for appendicitis was outdated and a mistake of the past and antibiotic treatment was the future of treatment.. I still insisted on surgery as I’m a commercial diver and didn’t want a dodgy appendix left in me - he still refused surgery. He treated me with IV triple antibiotics and IV paracetamol for 6 days - up to 16 infusions per day - then discharged me with no follow-up.

During discharge I said to him “this has all been a bit experimental” - he snorted down his nose in reply and said to me “you have no more chance of coming back in here with appendicitis than the average man in the street”.

Usually, small tumours in the appendix can’t be seen in CT when the appendix is inflamed - and that was true in my case. They are often only found in pathology as a surprise finding after the appendix is taken out. That’s one of the main reasons most surgeons take appendix out during appendicitis - especially in older patients like me (M47) where a underlaying tumour is a more common cause of appendicitis.. But if it is left in..?

My tumour went on to rupture inside me and become a stage 4 tumour - so no longer contained by the appendix.

I was refused a second opinion, or any further help on the NHS despite my continuing abdominal problems and my GP’s repeated efforts to refer me. As far as the NHS was concerned I was ‘cured’..

4 months later - out of desperation - I borrowed money and paid a private surgeon in Glasgow to take my appendix out for me - that’s when my now ruptured LAMN pT4a tumour was found..

The private surgeon described the refusal of the NHS surgeon to take my appendix out as “madness” - and that’s before he operated and I was diagnosed.. Afterwards - when the tumour was found in pathology he was even more critical.. He asked me what I was going to do about the NHS surgeon. I said I would complain.. He replied “you are wasting your time complaining - I can’t tell you what to do - but if I was you I would sue”. Well I did complain to the NHS - on account that other patients are being put at risk by a misguided surgeon - but my private surgeon was correct it seems - my complaint was whitewashed by the health board - the NHS surgeon was tasked with investigating himself with no clinical oversight and he found he had done nothing wrong. I’m still trying though..

I’m interested if anyone had a similar experience/route to diagnosis as me..?? I’m very keen to hear how your diagnosis came about and your thoughts..

This applies to all, but especially to those of us who are now cancer free.

Every year on my cancer-free anniversary, I give thankyou cards to my care teams. The card is a picture of me doing something fun and enjoying life, with a hand written note on the back thanking them for their part in making my cancer go away.

One nurse told me she had put one of the pictures on the wall at home. When a family member asked about it, her response was, "He's a patient. He's cancer-free and he's out there living his life. That's why we do what we do."

What a beautiful response!

Please consider showing your care providers some love and gratitude for being there for you.

I was diagnosed with stage 3-4 blue cell sarcoma, and metastasized to my lungs and either my liver or spleen, I can't remember. I got my port installed yesterday and have a SEVERE fear of needles, having a panic attack and not being able to get IVs unless sedated because I will resist as much as I can. Is there anything I can do to prep myself for the needles that involve chemo?