r/Cancersurvivors

For me it’s when people say I (people telling me) “beat” cancer. I can’t stand it, I didn’t beat shit, I am still fighting every fuckin day with the physical and mental symptoms from treatment that will never go away. Another thing that bothers me is the amount that “cancer” is used by others to describe diminutive hardships. ie. “X is like cancer”. I know I can’t control what people say and a lot of people are ignorant when it comes cancer. I myself was before I got sick, but it irks me enough to make a post about it I suppose.

The biggest thing I absolutely can’t stand is those that deliberately try to use their cancer to get internet clout, free things, or pity. I understand treatment costs a lot of money, in total mine cost 3.5 million. I was blessed enough to have excellent insurance that paid for the majority of it although I still owe a solid 5 figure sum. Those who need go fund me’s or donations I have no problem with. It’s the people that don’t need it that beg that really pisses me off.

What are things that irk you or your pet peeves when it comes to others, be it family and friends or strangers, or media or any pet peeve you might have when it comes to cancer?

Disclaimer* if you say you beat cancer I have no problem with it at all, it’s just not something I say myself. I am not referring to survivors or those sick. I am referring to others telling me “you beat cancer”.

initially I was told I had a little cancer. just a little. No big deal. A little chemo and radiation I will be fine. My cancer doctor told me I had a 5% chance of survival. ok, 5%.

We drove home about 90 miles and got take out pasta and some soup.

At the time I was told I had cancer I did not have health insurance. Health insurance for someone healthy is expensive and for some sick health insurance is a bargain.

i had the financial resources to buy health insurance but I was being cheap.

I eventually got health insurance and had my cancer operation the day before thanksgiving.

the time frame to start cancer treatment is usually 6 weeks after your cancer operation.

unfortunately I did not start treatment until week 9 which set me back and I needed more radiation treatments because of it.

I had a rare type of cancer about 7 years ago. I was treated at Moffett in Tampa during the beginning of Covid. I had 35 radiation and 7 chemo treatments. At times I was not sure I was going to make it.

does anybody want to shared their cancer and treatment experiences?

I glad we started this thread. Talking to other cancer survivors is good for us. If you never went through it, you don’t know what we went through. Yes, we have a family member with us during the treatment, but basically we were all alone going through brutal treatment and fighting to stay alive.

A year ago I was sitting at my own desk when I found out I probably had cancer again.
There was no doctor in the room. No one was there at all. I had pulled up a radiology report from a scan I had done for something else, and I read it the way I have learned to read these things. Fast. Looking for the one line that matters. I found it near the bottom. A small mass on my right kidney. Mixed solid and cystic. About 1.4 centimeters. An outside read called it Bosniak III, the borderline category, the one where about half turn out to be cancer and half do not.

I have been a cancer patient long enough to know how the first hour goes. You read the words. You look up what they mean. You understand in the first thirty seconds that the news is bad, and then your body takes a minute to catch up. I sat there. I did not move. The thought that kept coming back was not dramatic. It was three words. Always fighting this.
I have been fighting this since I was sixteen.
In 1993, I had testicular cancer. I was a kid. I had four rounds of cisplatin and etoposide at Memorial Sloan Kettering, and a long abdominal surgery, and I lived. That treatment did exactly what it was supposed to do. I want to be clear about that, because none of what follows is a complaint about the medicine that saved me. The medicine worked. I am here because of it.
But platinum chemotherapy leaves a long shadow. The drugs that cure you in your teens are linked to a higher risk of other cancers and of heart disease decades later. Not the year after. Twenty, thirty years out, long after anyone is still watching.
That is the part almost no one is told.
Here is what should bother all of us. The formal follow-up for a testicular cancer survivor usually ends at five years. Five years clear and you are discharged, cured, sent back to your life. But the most serious late effects of the treatment do not arrive at five years. They arrive at fifteen, and twenty, and thirty. The science on this is neither new nor fringe. Some of it was built by the same doctors who treated me. The knowledge exists. It just stops at the exam room door.
I learned how true that was this spring.
When the kidney mass showed up, I did what you do. I got it imaged again. One cancer center read it one way: the gray zone, worth watching. Another center read the same scan and called it more than ninety percent likely to be cancer. Same images. Same kidney. Two different answers. If you have ever held two reports that did not agree, you know exactly how that feels. You are the one who has to decide which one to believe, and you never went to medical school.
The first plan was to watch it. Scan every few months and see what it did. I went along with that. It kept growing. From 1.4 to 1.7 to about 1.8 over the year. Small numbers, a few millimeters at a time, but always in the same direction.
In the middle of that watching, two things happened that taught me what advocacy actually costs.
Eight days before one of my appointments, a message came through the patient portal. It said the mass was not really significant, still mostly cystic, and that I could cancel the visit and just get another scan in a few months. I read it twice. Then I wrote back and quoted the other radiologist’s reading, the one that put it over 90%. The appointment stayed on the calendar.
I kept it. At that visit, I sat across from a specialist and asked the question that mattered most to me. I have a history of testicular cancer and platinum chemotherapy. Doesn’t that raise my risk for a second cancer? He did not think it did. He did not think platinum-based chemo was a significant risk factor for a second malignancy.
I had read the research. He had written the research in his own field. And I was sitting there being told the exact thing I had come in worried about was not a real concern.
That is the gap. That is the reason I am putting this on the page. The science is not the problem. The problem is that it does not reliably reach the person in the chair, so they have to carry it themselves. I had to be the one who knew my own risk. I had to be the one who pushed. I uploaded my own scans and asked for the opinion myself instead of waiting for the system to route me. I quoted one report back against the other. I asked the next question, and the next one, until the plan changed.
It is a real plan now. A biopsy first, because I have never had one, and a needle is the only thing that will finally settle what a year of imaging has been arguing about. Then ablation. They enter through the skin, guided by imaging, and destroy the mass with heat or cold. No open incision. That matters more for me than it would for most people, because my abdomen is already a map of old scars. A long incision from 1993. Two hernia repairs. A back surgery. Ablation goes around all of it. Then, a scan a few months later to confirm it worked.
So this is most likely my third cancer. The first one I beat. The second was a thyroid cancer last year, which I caught. This one I am going to treat before it gets a vote on how my story ends. My genetic testing came back negative for the known inherited cancer genes, so this is most likely not something I inherited. The most likely explanation is the treatment that saved my life thirty-three years ago. The cure is still being paid for. This is another installment.
If you are reading this because you just found your own mass, or because you are years past a cancer that everyone told you was finished, here are the things I wish someone had handed me.
A small kidney mass like mine, even if it turns out to be cancer, is very treatable when it is caught early. That holds for a lot of what gets caught late in survivors. Early is the whole game, and you can only be early if someone is still looking.
So be the one who keeps looking. You do not have to be loud. You do not have to fight anyone. You can ask what your treatment history means for the next twenty years. You can ask for the scan. You can ask for a second read when two readers disagree. You can write your own history down and carry it into every room, because you are the only person who sits in all of them. And you can find other people who have been through it, which is part of why I am writing this instead of keeping it to myself.
I am okay. I am treating this on my terms. I am going to keep telling the parts no one warned me about, because the warning is what helps.

I need to do daily saline rinses mixed with a couple of steroids that get added. if I don’t do it daily I feel like a chocking on the muscus.

The radiation treatments rotted out my teeth. After visiting a couple of dentist in Florida who were crooks I got my top teeth removed. besides spending $12,000 on the treatment it left me unable to eat and talk. I am only able to eat cream soup and mashed potatoes. the fake teeth is way too big and I don’t use them at all.

so if you are living in Florida be very careful when visiting a dentist and don’t belong a word they tell you. they are all crooks and are only interested in the money.

5 days on, means 5 straight days and two days to rest. Missing one of those 5 straight days will be big setback for you. The radiation machines at moffit ran from 6am until 9pm. They was about 6 out of those 35 scheduled treatments where the machines broke down and was out of use. They did have an onsite repair men then to resolve any issues.

i always broke balls and i told them I want my treatment as soon as the machine is fixed. I never missed a treatment. Not everybody can make that statement.

Cancer survivors, please reach out to me. My mother finished radiation.

We all celebrated, me, my sister, the doctors. And then.. I could see her playing it off like it was fine. But she wasn't.. she was lost. Scared. Nothing felt the same and no one was telling her what came next - side effects and how to approach them, how and what to eat, how to move, how to stop being afraid of her own body, how to feel like a whole human again. Internet is fullllll of information.

Every programme she found was scattered. She didn't know what to believe.

I didn't know how to help her, so I started building something with leading experts in nutrition, movement and nervous system recovery after cancer treatment.

I want to talk to as many people in remission as possible. I want to build something lasting, with the people who actually need it. Let me know if you are interested to fill out a survey that I have prepared.

And if you want to talk after, I'm here.

(please ignore grammar errors,my first language isnt english). I got bloodtests done a few weeks ago,since it felt like i couldnt catch a full breath of air and my cough started getting more severe.They now came back and it turns out i might have lung cancer.They will do a biopsy tomorow and I will know for sure.My question really is,im planning to go on a trip from 8th of July to 15th.Can I?Or will they started treatments as soon as possible?Google says that it takes weeks until they start treatment because they have to look for certain things to give the right medication,Im not willing to put my trust in ai,so if anyone had lung cancer or any type of cancer,do the treatments usally start rightaway?Or can i still enjoy my trip?

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Hi r/cancer, I’m Lukas’s mom.

Lukas is 15 now. He was diagnosed with metastatic Ewing sarcoma at 12 - thorax, vertebrae, iliac wing. He beat it once at 13.

Last November it came back in his skull.

Now he’s in the REECUR clinical trial. Three years of hospitals, scans, fear.

Last week we took him to the Video Game Museum in Málaga for a few hours. He sat in a racing simulator and for the first time in months I saw MY son, not the patient. He was shouting, laughing, playing like any 15yo. He forgot he was sick for 2 hours.

I’m not here to ask for money in this post. I just wanted to share that moment with people who understand what 2 hours of "normal" means.

If his smile did something for you, his Ko-fi is in my profile. We're raising funds for trial-related costs, travel, and to keep giving him these "normal" days between battles.

He calls this "The hardest level yet". And he's still playing to win.

Thank you for letting me share him with you.

[Link to the museum video clip]

TL;DR: My 15yo has fought metastatic Ewing sarcoma since 12, relapsed in skull last Nov. Now on REECUR trial. Took him to a video game museum and he was a kid again for 2 hours.

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In February 2020, when I (f26) was 20 years old developed a small bump on the bottom of my foot. I didn't think much of it, believed it was a corn and thought it would go away.

By July, it grew into the size of a baseball sticking out the bottom of my foot and made it incredibly difficult and painful to walk. By then I had biopsies, tests etc and found out I had a very rare type of cancer called Clear Cell Sarcoma that about 100 people per year are diagnosed with nationwide.

I was given 5 years left to live and told there was a big chance I wouldn't live past 25.

I had surgery to remove the tumor and was connected to a woundvac and hospitalized for a week. The woundvac stayed connected to my foot for about 6 months with a nurse coming to my home every other day to change it. It was by far the most painful experience of my entire life every single time it was changed. I would throw up and almost pass out from the pain.

For those 6 months I was bedridden and another 6 months after that for further healing. I went through numerous sessions of physical therapy to re learn how to walk and I still walk with a limp today. I also used a knee scooter for a year.

Due to how I walk, I damaged the lower part of my spine and have nerve damage throughout my entire leg, knee and foot. My bone also became deformed in the healing process from the surgery.

I had 4-6 MRIs every year for those 5 years, and thankfully, every single one had came back negative.

Now, I am 6 years cancer free but technically will just complete my first year of remission in a few weeks since the first 5 years I was considered at risk.

I am still in constant, chronic pain that has never went away and I still am limited to some things. I struggle with sitting, walking and standing for long periods. Stairs is a whole nother story, and I am unable to run.

I truly can not remember a time I was not in pain and it's become my normal to be in constant pain. It truly sucks, but I accepted it.

Due to the rarity of the cancer, I am unable to have most procedures and no prescription had worked for me, so I have learned to deal with the pain and grew accustomed to it that it will feel weird to know my life without it.

I do have mental struggles from it all. Sometimes the pain is overbearing that I throw up. If my knee is bent or in a certain position for to long it will lock in place and feel like I'm ripping velcro nails from it to straighten it out. There are some days I ball my eyes out fearing the cancer coming out or if anything in the slightest normality appears on my body it sends me into a panic attack.

But throughout everything, I am thankful to still be here.

I'm sure there are other details I can put into this, but I tried to put in the main details.

Thank you for reading.

You are free to ask questions if you like.

Is anyone else struggling with who they are after being in remission ? I feel like I no longer know who I am or what I like, and I feel like I do not even experience joy anymore. I feel like this has isolated me mentally because I got tired of hearing the “this isnt forever” bs so I just stopped reaching out to people, or people stopped talking to me once I was diagnosed. I just want to feel like myself again and stop feeling like Im pretending to be myself. Did/does anyone else experience this, and how did/do you deal with it ?

(Yes I have a oncology specific therapist, I just feel alone even when talking to her.)

I have stage 4 cancer, but am currently “well”. All tumours are metabolically inactive which is a much better situation that we could have ever hoped for. But I have had a mastectomy (one side only) and heavy ongoing treatment.

But life is hard- the side effects of the medication and the constant medical appointments leave my life a bit tricky to manage. My quality of life is pretty low most of the time. As there’s no name for it (can’t say remission and definitely not a cure) I call it surviving semi terminal limbo (not very elegant phrase- I know!)

I try to be positive and live my life as much as possible- but it is really difficult every day!

I’m only 45 and have been battling this since 2020- I sometimes feel like a warrior, but mostly I just feel lonely and flat. My last relationship was a disaster that ran as soon as it was a bit tough- dating a narcissist when you have a disease is not great- they can’t handle the focus being off them.

I’m just wondering if anyone has been in a similar situation and managed to date/ find love?

I am 26F and had total thyroidectomy and RAI post a PTC diagnosis. It’s been a year, clear scans, I’m on thyroid meds, everything normal. How do I bring this up in AM situations? I feel like people will not give me a chance as soon as they hear cancer.
TIA

Any encouraging stories of people going to a second transplant after few relapses? My son is 4 years old and is fighting T cell All that has an aggressive mutation. He relapsed in bone marrow and CNS just 4 months post his first transplant. We went to China for CAR T and he relapsed in the CNS only one month post CAR T . He went in remission again and he is now at day 8+ post his second transplant. The relapse ghost is hunting me , i need motivation 😭

I have a family member who was diagnosed with stage 4 pancreatic cancer in February. The cancer had metastasized into both the spleen and liver. He has been through 4 chemo treatments so far and had a scan this past week to check on the progress. His body is reacting well to the treatments so far. The spots on the spleen are completely gone, the liver ones have stayed the same/maybe even shrunk a little, and the pancreatic tumor has not grown at all. However, it’s hard to tell since they don’t usually see how the tumor is responding until after 5 or 6 chemo treatments so it’s still early. If the chemo stops working correctly then the doctor approved him for the daraxonrasid trial treatment pill. I read that this treatment option along with the previous chemo treatments can shrink or even get rid of the liver spots and even the tumor on the pancreas. Does anyone know if it’s possible for the liver spots to disappear from chemo alone and/or the daraxonrasid? I’d love to hear personal stories through this process. I’m trying to remain positive that remission is possible since his body seems to be responding well to treatment so far but it has been an extremely difficult process.

We just found out that my mom has cancer last week. She’s 72 and is also diabetic. The colonoscopy diagnosis says “ascending colon mass probably malignant”.
We will find out what stage it would be and what treatment she should go or if she needs surgery once her biopsy results are out on Monday.
She has been only consuming liquid for more than two weeks now.

My family doesn’t have the cancer gene (my and my brother’s 23&me results indicate that we don’t have that genetic marker) and this is the first cancer case in both sides of my family so i’m not sure if it was her lifestyle that contributed to it or she’s always had it but just never went to the doctor to have it checked. She told me that ever since she was young she has always been constipated. She hated and didn’t trust hospitals and doctors was what I witnessed when I was growing up (my asthma was diagnosed when I was already 30 because she dismissed it as hyperventilating since i was a kid)

I don’t live with my family as I live far away, and only been providing financial support. She doesn’t have health insurance.
At first I was convinced we can reverse her cancer by focusing on her nutritional diet because she’s not a fan of vegetables before we found out, but the more I read the more I realize that not going to any treatment might spread the cancer even more. The regression of cancer is like one in a million.

I read that aside from chemo therapy, there’s immunotherapy and targeted therapy.

I just want to gather data and statistics from this community of what treatment you or your loved one did that made you/them cancer-free.

Thank you all for your support.