Have any childhood cancer survivors experienced mental difficulties in their adult years?

Renago Member Posts: 2
edited October 2023 in Childhood Cancers #1

I've had this overwhelming depression on my shoulders ever since I hit my late teens. A lot of simple conflict situations in social environments give me a life or death feeling like I need to either escape or my life is in danger. I have anxiety at times that seems to make the people around me feel uncomfortable. They'll never straight up say it, but their body language seems to speak for itself. I have trouble connecting with others. I feel like that's what I want most but have trouble making friends or knowing what to say or how to act in order to make it happen. Also have trouble with finding direction in life. I am 25 now. Age 6 is when I had cancer in the kidney. Six months later it relapsed in the lung. I went through much chemotherapy and breathing exercises for the lung cancer. I had a bone marrow transplant as well. And spent over six months in hospital beds. Now as a young adult I seem to be having mental difficulties.

Anyone experience similar difficulties?


  • kevinposton
    kevinposton Member Posts: 4 Member
    edited September 2018 #2
    Yes, I have

    Yes, I had brain cancer whan I was 11. Struggled with depression and social anxiety till about 4 years ago. I became worse and now I have bipolar disorder and panic disorder. Had to get on disability for these and some physical, and learning became worse and worse. Could not learn my job tasks. These things we are experiencing are late term effects. If you look into Long term follow up study at St Judes hospital. You can read about these problems that are experienced by many childhood cancer survivors.

  • luvmyfam
    luvmyfam Member Posts: 1
    edited February 2020 #3
    I am a parent .

    My daughter is a cancer survivor. She had stage 3 kidney cancer at age 2. She has struggled mentally and emotionally significantly into her later teens.I will say anxiety started in middle school. I have done tons of research. There is a chance childhood cancer survivors can have PTSD. Everything you have said my daughter is dealing with. All the social issues etc. She is seeing a therapist and improving, You hang in there and I hope things are already better. 

  • LexSurvivor99
    LexSurvivor99 Member Posts: 5 Member
    edited June 2020 #4
    luvmyfam said:

    I am a parent .

    My daughter is a cancer survivor. She had stage 3 kidney cancer at age 2. She has struggled mentally and emotionally significantly into her later teens.I will say anxiety started in middle school. I have done tons of research. There is a chance childhood cancer survivors can have PTSD. Everything you have said my daughter is dealing with. All the social issues etc. She is seeing a therapist and improving, You hang in there and I hope things are already better. 

    I am a childhood cancer

    I am a childhood cancer survivor of stage 4 hodgkins lymphoma and I understand those feelings. I wasn't diagnosed until I was 17 but, this summer I was officially diagnosed with generalized anxiety disorder, mild depression, and PTSD due to the treatments I experienced and what happened leading up to getting my diagnosis. I have been seeing a therapist for 3 years now and it has helped a ton. Tell your daughter that she isn't alone and to focus on those around her, it gets better.


  • ccarr9231
    ccarr9231 Member Posts: 3
    edited June 2020 #5
    I understand exactly where

    I understand exactly where everyone is coming from. Honestly, the long-term mental side effects of having cancer as a teenager have been much worse than the physical ones. The anxiety about having a recurrence or starting a family have kept me up at night more times than I can count. I also experience survivor's guilt. If I'm not eating healthily or if I do something that I don't view as "healthy" I feel like I've wasted my second shot at living. I started going to therapy as an adult, and it definitely has helped me develop ways to cope with it, but it's hard. 

  • Spark_el
    Spark_el Member Posts: 2 Member


    My son was diagnosed with ALL when he was 22 months old in 1979. He was on chemo for 2 1/2 years and also 10 sessions of radiation. After going off chemo, he relapsed in testicles and stronger chemo fir one more year. He is now 43 years old!

    He is unable to have children and should be taking testosterone shots. But doesn't. He has always had social problems and learning problems. He got through school with C's and D's. The family just got used to him and his behavioral problems. He was over active and a handful:) But he was a survivor.

    He has not had great success with jobs. He misses work and oversleeps until he is fired. He is getting progressively worse and suffering even more with depression and anxiety. Once ending up in a suicide prevention hospital. He is seeing a psychiatrist but all the meds they use on him are not working well. Some making things worse. Although not diagnosed with it, I am sure his IQ is low and has mental cognivity impairment. Unfortunately, his psychiatrist says he only observes depression and anxiety and sometimes sleep problems. I really feel he should be on disability as he can't hold down a job and he feels so hopeless and so severely depressed. He lives a small lonely life and doesn't take care of himself. At all.

    Records stating his ALL over 40 years ago can't be found and I don't think the Dr. even believes he had this and does not know anything abt late effect problems. I am in the process of looking for hospital records.

    Any thoughts? Any one that can relate to this?

  • stapejr8383
    stapejr8383 Member Posts: 9 Member

    I was diagnosed February 14, 1989 with a mixture of cell brain tumor. Everybody was thinking I had the flu. I am now 43 being cancer free but realizing I’ve been having problems mentally with commitment and holding jobs dealing with society I’m currently now looking for treatment to find out what exactly is wrong with me. I got this website from the cancer research center and I just hope that I can find answers.

  • shannonbh88
    shannonbh88 Member Posts: 3 Member

    Hi, interestingly enough I was going to post a similar question. I’m a 29 year survivor of Acute Lymphoblastic Leukemia. In 2021 I started having bizarre and random symtoms: intense head pain ; banding, throbbing, pulsating, hammer-like that ping-pong’s ALL over my head. These episodes would last anywhere from 10-36 hrs. Within 4 months new symptoms occurred which called for an EEG, those results showed some seziure activity. After a 4 day stay in the epilepsy monitoring unit we ruled out the type of seizure activity that eeg logged. Looking back at previous MRI scans again, the doctor noticed “marks” on the scan that resembled strokes. To my knowledge I’d never had one. This doctor concluded I was exhibiting the symtoms and signs of SMART syndrome; Stoke Migraine After Radiation Treatment. Essentially although I didn’t go through the physical onset of a stroke…at some point in time and on more than one occasion, my brain had multiple. Now ff a few more months of trial treatments ( all prescription meds as there is no cure for SMART), those were not working. I was in bed for sometimes 2-3.5 days at a time. Mind you i was still trying to work remotely though this. By the middle of 2021 I was exhibiting even more new symtoms including: spotty vision, other visual issues, balance issues,a feeling of displacement almost as if I knew what was happening around me but it would either happen at a slower rate or a faster rate then what it was in reality occurring. This is what caused me to voluntarily stop driving. A few times at work I was on zoom meetings where my audio and or vision completely left me. Both came back, but didn’t do so for a good chunk of time. I would recall,anything that happens in that time, but the preceding part of my day I had full clarity and memory if. Soon after that I realized my ability to multitask was suffering, causing me to go into these attacks where the pain was beyond bearable. These new symtoms led me to a new neurologist. After a few months with the same tried meds at new doses she left me with a diagnosis of FND. Functional Neurological Disorder. This is not proven to be diagnosed for cancer survivors, but rather a general neurological issues. It’s been 3.5 years now since this all started. The only thing I have added to my listed diagnostic issues is migraines. I am NOT convinced this is anything but a bandaid diagnosis for a doctor who has hit a wall and isn’t sure what to do with me. After seeing a radiation oncologist he told me there are not many adult survivors in my age gap ( I’m 35 ) who are still alive from the equivalent time I was treated ( mid to late 90s). In 2005 I also found out through NeuroPsych tests that the part of the brain that processes number reasoning was damaged …likely from cranial radiation and intraveinious chemo to the brain. In May of this year, I had a craniotomy to remove what the first round of neurosurgery thought was a glioma. Long story short I’m 5 months post op. The mass had nothing to do with all of these symtoms and they cannot assure me that it was “ your average” tumor they removed. I was told it was very rigid and rough and even its shape was odd. They’re now questioning was this a calcified collection of sick cells. My pathology was completely clean. My neurological deficits have put me out of work completely. Just last week I started seeing a late affect doctor as I was on a wait list for when the program got up and running. Best to all the fellow survivors on here. I’m new to the whole group here so ty !

  • shannonbh88
    shannonbh88 Member Posts: 3 Member

    in addition to that, I started seeing a neuro-ophthalmology doctor last year and he put me through 8 hours of tests which concluded damage t the back of my right eye; 4 micro diagnoses in one; all of which he’s placing blame on the cranial radiation. These 4 pieces of things all affect a “twizzler like” tendon we all have that connects to the brain and is used to help the brain and eyes communicate with us. Mine is 95% damaged. As of right now there is no way to heal or repair.

    I have been thankful enough to find a wonderful therapist who is working with me though my cptsd and anxiety. I only wish she was covered by insurance. I do wish as survivors we had more recourses to high quality therapy with professionals who were educated. My therapist happens to be a former nurse which is helpful and was coincidental.

  • MysterySage
    MysterySage Member Posts: 2 Member
    edited October 2023 #10

    Maybe look into these:

    Mayo Clinic - Study to Identify Late-Occurring Complications in Childhood Cancer Survivors


    CHOP: Childhood Cancer Survivorship Program


    I have no personal experience with these programs, but I'd found them while looking for help on my healing journey. I believe the Mayo researchers had been looking at long term adverse neurological effects from radiation therapy.

  • MysterySage
    MysterySage Member Posts: 2 Member
    edited October 2023 #11

    I had a stage 4 neuroblastoma at T10 and abdomen in 1974. Paralysis started when I was 3 months old but it took several months to diagose.

    I have been in trauma therapy (EMDR mostly) for CPTSD for the past three years and it has helped a ton. I had no idea I had Trauma, but it makes sense now for me. Months of inconsistent care in a hospital that ended with two 5 hr surgeries without painkillers or anesthetic. This was common until the mid 1980s. Look it up if you if this might apply you, and sorry.

    I never really felt like I survived, but I don't like to admit this to people. Parts of me died back then and my body still remembers the experience everyday. I'm almost 50 years old now. Trauma therapy has saved my life in so many ways and I'm so grateful.