I’m nearly 50 years post cancer, but the effects of the cure live with me still. Do any long term survivors have issues with muscle weakness and/or poor muscle tone? With a personal trainer, I’ve been working out twice a week for over two years with very little progress in how much weight I can lift. My thighs have very poor stamina and the side of my body that had the radiation and chemo is significantly weaker than the other. I know for certain it’s a result of the treatment, I just want to know if anyone else has similar issues.

Anyone else have cancer during their childhood? About 15 and younger?

I had mine at 11-12 years old and suffered bad “brain fog” as they call it, from all the chemo and drugs I endured so young over a year. With how toxic chemo and other drugs you get are, it has to be proven that it affects the brain and brain chemistry.

I’ve had severe anxiety, PTSD and depression since;(I’m now 28) that had never went away 100% and I struggle alot. I feel lost in life and don’t know where to fit in.

Has anyone else felt this way after chemotherapy?

I survived breast cancer but then I lost my teeth after the chemo and the radiation treatments its very hard for me now. To remember what my smile looks like. Has anyone else gone through this or is it just me? It's hard for me to meet new people. As soon as people see, my teeth are missing. They tend to think that I am a drug addict. How do I explain this to them?

I finished chemo a year ago and it was so hard on my body. I was 145 then dropped to 115ish during chemo. I couldn’t anything down, not even water for almost 4 months. After chemo I was able to eat normal and I feel like my body just takes everything that I eat and stores it. My body was in starvation mode because of not being able to eat for months and now no matter if I eat less or cut things out, I can’t seem to lose any weight. It seems like I can only gain weight, and while I know working out is important, I’m also struggling because I don’t eat awful but it’s like I just can’t stop gaining weight. When I moved to another state I was around 150 in July and now I’m around 165. I’m 5’3 so I’m not tall. I know I need to be more active but it’s frustrating to feel myself getting bigger when I know I don’t eat like complete shit. I’m almost like I want to get on a weight loss shot to give a kick start to my body. Anyone else experience this after chemo?

Family member currently battling with naseau and dizziness as they are 3 months post chemo. Not looking for medical advice but just any suggestions or experiences on remedies to help aid them to a smoother recovery/relieve symptoms.

Ina Jaffe was an NPR reporter who was living with metastatic breast cancer when she wrote these two articles about what it’s like to live with metastatic breast cancer. She passed away recently at the age of 75.

The topic of what it’s like to live with metastatic cancer is something that is often not discussed, but it is the reality for a lot of people all around the world. These articles give some insight into that experience, and are written by someone with firsthand knowledge of how difficult that can be.

I hope that if you are someone living with metastatic cancer that these articles help you feel less alone in your experience. If you are someone who hasn’t had that experience, I hope that these articles might widen your perspective on what it means to be a cancer survivor.

A cancer survivor is anyone that has ever received a cancer diagnosis, and that definitely includes people living with metastatic cancer. The stories and experiences of people living with metastatic cancer are so important, and I wish that we heard more about them.

https://www.npr.org/sections/health-shots/2021/12/12/1061099577/living-with-breast-cancer-metastatic

https://www.npr.org/2021/06/22/1009065462/breast-cancer-research-funding-metastatic-disease

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National Cancer Institute definition for cancer survivor - a big thanks to one of our amazing members for sharing this definition of a cancer survivor in a comment on another post.

“An individual is considered a cancer survivor from the time of diagnosis through the balance of life. There are many types of survivors, including those living with cancer and those free of cancer. This term is meant to capture a population of those with a history of cancer rather than to provide a label that may or may not resonate with individuals.

Adapted from the National Coalition for Cancer Survivorship”

https://cancercontrol.cancer.gov/ocs/definitions

Anyone is this thread had cervical?

I really wonder if it is 5 years...because I had it 2 years ago & now it is back....I never considered myself a "cancer survivor" 2 years ago...because my thought process was....well "now Cancer is in my body".

And on my most recent checkup there are 2 new small specs...I go back in October.

So are you only a Cancer survivor after 5 years of being Cancer free?

I had this exact cancer, about 2022 I was diagnosed with it, around last year in November I finally was considered cancer free, which was amazing, it felt amazing. But yes. After a while after I started trying to regulate myself once more to how I used to be, it was a hassle because I wasn't as I used to be. While I hadn't changed much I had in fact changed, my personality wasn't much different but also it was if that makes sense. Before I was... a lot like pinkie pie from mlp.. During it though I notice now that I was in a deep depressed state, though I didn't do anything seriously harmful, I wasn't good to myself, I stayed in bed for days and I ate very little, I had no strength to do anything, and I didn't want to do anything anyways... I became closed off and as I lost my hair I took down my mirror, I no longer wanted to see myself. I pride myself on my hair, It wasn't very long maybe down to my shoulders. But it was a sign of growth for me, this is because I used to cut my hair when things weren't going to well because it's what I could control, so loosing all of my hair took all that growth away from me and I despised it. I wore hoodies after my hair was all gone, and I never took them off, I tried smiling around others because I didn't want sympathy. I didn't want to hear people feel sorry for me. I was angry, sad, and confused, I wanted to know what I did to deserve this torture... After my doctor said it looked like I was cancer free I was so happy to be back, but it wasn't just a normal bounce back, for me I had to go through physical therapy and therapy itself before I was able to function even slightly to what I used to, granted now many months later I'm doing well, healthy and my hair has grown back okay ish, mainly just mega curly, I'm still not even close to what I used to be. And I never will be again. So for anyone out there, who is surviving, or is free from cancer, just know you most likely won't be that person again in your life. BUT you will be a mew person. And you will grow to like yourself like this, your hair will come back in time, and you will feel healthier over time, you may need therapy if it all still haunts you and you might need physical therapy but in the end you're still you. I know my message might come off as rude or unkind I do mean it with the most kindness and support I can send. Just know you aren't alone. And everything will be okay. There's a light at the end of the tunnel...

Take care of yourself and please speak up if you notice your mental health is being affected. Don't suffer in silence ♡

Cancer treatment can affect fertility so some patients might be interested in fertility preservation.

The Livestrong Foundation has a fertility program for people that have received a cancer diagnosis. They have a list of over 150 fertility clinics on their website that offer at least a 25% service discount for qualifying patients. 

They also mention on their website that their program helps to provide free stimulation medication to patients approved through their fertility program.

You can find more information about the program here - https://livestrong.org/how-we-help/livestrong-fertility/

My partner is struggling with intense anxiety (understandably) and has asked me to find resources to help him shift his mindset.

Can you recommend a website, a podcast story, a book - anything where someone who faced life threatening cancer and survived shares their learnings and offers advice for a more positive mindset.

Please help. My best friend has severe hiccups and burpes that are making his life hell.

I posted this handout in a comment on another thread but I thought that it would be easier to find in its own post.

This is a handout on energy conservation techniques for cancer survivors with more info on managing cancer related fatigue during and after treatment that you can look over with your medical team and see if it might be helpful for you.

https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/Using_Your_Energy_Wisely_Cancer_Related_Fatigue.pdf

For some survivors cancer related fatigue can last years after treatment. Hopefully more research is done on long term cancer related fatigue in the future as so many survivors live with it on a daily basis.

Working with a cancer rehab provider can help with fatigue to a certain extent. Eating a healthy diet is also very important and having frozen fruits and vegetables in the freezer can make eating meals easier on days when you don’t have much energy.

It’s important to prioritize resting and pacing. You don’t bounce back to the person you were before cancer, you grow instead into the person that you will be after this trauma and this experience so please be kind to yourself.

If you have any advice or techniques for living your life while managing fatigue please feel free to comment below and let us know what helped you. :)

edit: I wanted to mention that these are occupational therapy techniques in the pdf, so working with an occupational therapist might also be helpful when dealing with fatigue.

(I never know how anyone will react, this is Reddit) I wanted to share something. I have Hodgkins and I didn't want to do a biopsy or other surgery or anything that would take me out. Atorvastatin (4× the dose, 40mg) has actually been shrinking my tumors. I'm actually surprised how well it seems to work. You can look up "statins and tumors". This has been a game change for me, but the side effects of sleepiness is the only issue.

Cancer treatment can cause long term health effects called “late effects” and unfortunately sometimes average daycare centers and schools don’t have the resources to care for children with complex health needs.

However, about 20 states in the US have Prescribed Pediatric Extended Care Centers or "medical daycares." These daycares are staffed by nurses, paid for by Medicaid, and can offer other therapies as well for children including speech therapy, and physical therapy.

I don’t much about them (I only saw this news story on these medical daycares) but I thought that this information might be helpful if you live in a state with a PPECC and are in need of services like this for your child after cancer treatment.

This isn’t a specific cancer survivor story, but many cancer survivors do become disabled after cancer treatment so I thought that this would be a story worth sharing.

Link to YouTube video - 'Medical daycares' on the rise in the U.S.

https://www.youtube.com/watch?v=kfZncE-YvYk

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This is a list of possible late effects of childhood cancer treatment from the Children's Oncology Group website.

https://www.childrensoncologygroup.org/lateeffectsoftreatment

Hey there, I was diagnosed with AML and had a transplant (from an unrelated donor) on October 26, 2023. I am 27 years old. Almost done with my first 100 days, and I'm on cyclosporine. I'm a dancer and choreographer, and I've definitely lost some stamina and strength. But I'm gearing up to restart my training and get back to my normal life. Any tips or ideas on how long it takes to bounce back? Appreciate your thoughts. Thanks! Shoutout to all the survivors – let's grow through what we're going through!

I just don’t see anyone outside of this experience being able to accept me as I am. I want to entertain the idea of finding someone. There really isn’t any interest in a 130lb hairless dude on the popular apps. Just wondering if anyone out there has any helpful tips. To say I “miss” the touch of another person is a grand understatement. I have all but forgotten what it’s like to be kissed, and I just want to know that feeling again. I know I can find affection and possibly love, I just don’t know how

Hi,

I survived Hodgkins Lymphoma stage 3, finishing up treatment this year in May.

The hope, comfort, and general positivity has worn off since I stopped taking the pain meds. My life has been in free fall since I’ve been unable to cope with the stresses of undergoing cancer, treatment, and toward the end all by myself. Further, my life had changed in ways that would have been incredibly stressful regardless of the illness on top of it.

I couldn’t handle trying anymore. It feels like I decided to let everything just get worse and worse until I eventually wouldn’t be able to take it anymore; as if that was the goal. I’ve realized I’m terrified of tomorrows and my brain is begging me to run from them, but my heart wants to keep going and undue what I’ve let my life become. My brain is punishing me with guilt while my body is trying to forgive. It’s hard to explain.

Does anyone relate to this? What can I do? How do I do anything?

Hello everyone, this is my first time posting and I am hoping I could get some ideas or help here. This may be long, but I need to everyone to know what kind of person my mother is, and why she deserves all the help possible. If you don’t want the filler you can skip to the last paragraph!My mother was diagnosed with breast cancer in 2020, and went through a very long and grueling battle with chemo and radiation. She is now thankfully in remission and doing a lot better, although she does have some residual side effects such as some nerve pain in her feet and frequently watering eyes.

My mom has struggled with her self image ever since I was a child, there aren’t many times where my mom has felt beautiful. She is a truly amazing woman who has had an incredibly hard life and lost her entire family slowly throughout her childhood and finally her father when my oldest sister was born. She did her best to distract me and my sisters during the recession when she lost her job and my fathers addiction problems had reached its peak, and she did it all alone. (he is now sober and dedicated himself to helping my mother recover from cancer, treating her like a queen and taking on all household responsibilities. He also got her chickens like she always wanted so she would have something happy to focus on). I am also bipolar and struggled a lot in the beginning of my diagnosis, all of which she was so supportive and loving. I truly do not know if I would still be alive without her there. Throughout all of her struggles my mother is still one of the most positive and caring people I’ve ever met. She spends her weekends cooking for families that are struggling financially through a program she found, caring for a half blind and geriatric horse she adopted, and I do my best to see her most weekends.

Since her remission my mom has been struggling to find a hairstyle/color that she likes. She used to have a long blonde bob, but after chemo her hair grew back brown. She’s also always struggled to get the hang of wearing makeup and finding something that makes her feel good. I do consider myself good at makeup and I’ve helped her over the years but I’m no makeup artist. I’ve been doing some searching on doing makeup on more mature skin (she’s 60), and all the base makeup we have down. However as I mentioned above she has a lot of problems with her eye makeup smudging due to her watering eyes. I wanted to scream and cry when she told me over the phone she feels like an idiot and hideous when she goes to the bathroom at work and sees her mascara smudged everywhere.

So to the real questions,does anyone have advice about getting her eyes to stop watering? I would also be very interested in meeting with a makeup artist that is practiced in more mature skin that could help us, I work two minimum wage jobs but I will pay whatever they charge. Any recommended hairstylist would be amazing too. She lives north of Scottsdale in Arizona but I will take her anywhere, distance doesn’t matter. My mom is the most beautiful person in my world, and she deserves to feel like it. The thought of her sitting in front of the mirror thinking she’s ugly makes me literally cry. If there’s anyone with advise I would be so grateful.

I was diagnosed with cancer at 3 and diagnosed cancer free at the age of 8 for 5 years i battled and for 5 years i felt left out. I missed the major learning days of school for things like math, cursive, hand writing, computer knowledge, even in kindergarten i missed days. I am now 15 wondering if i can make it to that next step, the next day, next hour, next minute, next second in constant fear of it coming back. I decided to become a Norse Pegan which is the worship of Norse gods like Odin, Thor, Frey, ect. but that was 2 years ago my parents still think im Christian at least on im fairly confident one already knows but im concerned my mom wont accept it. As i write this there is still that feeling of will it come back at this moment but i won't know until my next appointment. A family friend of mine died yesterday of brain cancer his family just spent the wonderfull day of 4th or July mourning over him. I work at a summer camp and spend my days teaching scouts younger than me how to properly use tools but i still smile for them hoping none of them have to go through the pain of cancer in the family. Long story short my life just feels done its a constant battle every day with my body to work right because chemo has multiple side affects and my maine one is joint issues i blame myself for my families poorness because we were middle class citizens before i was born and with 4 sisters who all take everything out on me and no brothers my only outlet is games and writing but sorry for my rant i just wanted to say that cancer has both ruined my life and made it great because without it i wouldn't have met my best friend or joined scouts or lived my life so far i have long hair now and a full scraggly beard that throws people for a loup im pretty sure some people think im lying but thats ok i don't care its always a blast everyday doing what i love even though i had cancer and even though im in constant fear of it returning i dont shy away from living bold and i urge those with cancer or those who have relatives or those who survived live your life go climb down the side of a cliff go ride a horse at full gallop go shot a gun go fishing go on a boat go live your life how you want but remember dont ever loose hope don't ever be afraid to tell people who you are even if they wont accept you. A quote from a friend of mine that he got from his friend " it doesn't matter, it doesn't matter if your gay, straight, white, black, zebra, donkey. It doesn't matter because the only thing you will ever be remembered for in life is the things you do."

Hello

I should be wrapping up my chemo treatments at the end of this month and will have to go back to work. Was wondering if anyone had any suggestions for low stress/ low physical demand type jobs. I previously worked in the medical field and I am unwilling to sign up for that level of stress again.

If anyone could share their experience with going back to work after chemo I would greatly appreciate it.

Before I was about to start college, I got diagnosed with stage 3 Hodgekin's lymphoma. I had to cancel my in-person plans for my fall term to do chemotherapy. I was able to go full-time starting my first winter term. It has been over a year since I finished chemo, and I still have trauma and anxiety over it.

I am in my second year and I am planning to move in with three of my friends. However, two of them don't know about my history of cancer. With previous roommates, I told them in case something medically happens. Since they are people that I have known for a bit and am close with, it feels different and I am afraid to tell them.

To anyone who had cancer, how do you tell people that you had cancer?

I don't know why but sometimes I just randomly think about what happened almost 5 years ago. I read this... In patients with massive pulmonary embolism, 50% die within 30 minutes, 70% die within 1 hour, and more than 85% die within 6 hours of the onset of symptoms.

It was not even a first but rather a second cancer and a rheumatologist was diagnosing me with lupus about a year prior. My nephrologist was shocked when test results came back saying the reason my kidneys weren't functional was due to some kind of weird autoimmune attack, completely separate from the lupus, clogging the filters which led to severe fluid retention and the massive clots that filled my lower leg veins.

But FIRST they had to address the ass cancer, then lucky for me rituxan infusions shut down the part of my system attacking my kidneys.

You wouldn't believe looking at me now how near to death I was five years ago. The only real clue is the port in my chest that is usually visible because I can't stand wearing crew necks. I have a tat on my chest that means immortal. My kids joke sometimes that they think it's actually true. I hope not in this body at least 😄♥️

The doctor told me that my numbers are what they want to see post radiation to call it a cure.

A doctor told me I'm cured

I'm shaking as I type this....

I'm cured.

I'm actually cured.

How do you process this? I'm cured!!

When my oncologist told.me.that I was in remission, he said that if I was still in remission in 5 years time, I could call myself 'cured'.

Well, guess what day it is today!

I fucking did it! I won!

Anyone who had renal cancer and had their kidney removed? I need help talking out please.

I was 5 y.o. when I was diagnosed with Terminal cancer.. Ten years later it was removed by causing a concussion and repairing my brain, it took a toll on my memory doe =[, But at least I survived!! Yay!!! I'm not bedridden anymore woohooooo!!

Hi I'm new to the group 15m I was diagnosed with Lukemia at 10 and my 5th grade year was taken from me

I had a decent life my family had money and we never worried about if we would have enough money for food or rent or anything. I was skinny happy had close friends and pretty good grades.

Then I was diagnosed and ripped from my world. I was in the hospital for 3 months and hopped up on chemo and pain medication. My father was with me the whole time and my pregnant mom would come visit me with my two younger siblings and my older sisters. My dad couldn't go home because he had to stay with me and that is when money got tight. They were barely making ends meet and had no money for anything else. After making it out of the hospital I was able to walk again but all the pain, anxiety and depression from the hospital stayed with me. I was always on antidepressants but they hard did anything. I had pain medication too but then I got addicted and they took it away completely so I was left with pain and depression suicidal thoughts were flooding in.

I tried therapy and everything but they never went away. Then my mom had her baby but the baby didn't make it and dies 30min after birth. All I could do was blame myself I still do. If I hadn't put her under all that stress and anxiety then that baby could have lived. But I got cancer it is my fault money is always tight and that the baby didn't live. Everyone always tells me that I should be grateful for the second chance at life and stuff like that. But I wish it had gone to someone else. I made the stupid mistake of getting a new best friend who also had cancer and when I thought things were looking up two of my friends died and one was my best friend. After that I closed my self off from everyone the girl I like is also a cancer survivor but I force myself not to love her because if I do and I lose her I don't know what I would do.

I graduated 5th grade with my old class because it took classes while in a hospital bed and barely made it. I went and I was so excited to see my close friends. But they had forgotten me they weren't excited to see my. They were scared to catch cancer for some bullshit reason one of them who I considered very close asked who I was cause the didn't recognize me. At that point in time cancer hadn't physically changed me so I looked like the old me but he didn't know who I was. Another asked me why I skipped school so much. This broke me so bad cause i thought they cared for me but they didn't.

After going through cancer at 15 i got remission but through the years cancer took its toll I can't run anymore because I can't breathe at all after I can't exercise because last time I did a little I ended up having a seizure and landing myself back in the hospital. So now I'm fat and the few old friends that I had left don't want anything to do with me because of how I look. (They flat out told me). I can't go back to normal school because of cancer so I'm online. Cancer took my 5th grade middle and now 2 high school years from me. I barely scrape by with my grades. I don't have any friends, I don't go out anywhere and every night I lay in bed cursing my self for living because now I'm never going to have friends or a girlfriend because of this. I tell myself that in college I will make friends but I don't know if I can go to college because it costs too much I would have to apply for every student plan I could get and work myself to the bone just to have a chance of going.

What was this all for why did I get cancer. Why did I have to survive all of this why could my second change get given to someone else. This breaks me and eats me up inside everyday. But for my family sake I pretend nothing is wrong I am happy and everything. I'm sorry for the long rant but my real question it does it get better? Will I get friends and find love and happiness? I wish I knew