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

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 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 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.

Lex

Hello.

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?

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 !

Maybe look into these:

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

https://www.mayo.edu/research/clinical-trials/cls-20472113

CHOP: Childhood Cancer Survivorship Program

https://www.chop.edu/centers-programs/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.

yes! Anxiety. Depression. Survivors guilt. PTSD. It’s hard to find anyone that can understand the complexity of what we’ve gone through. If you have any strategies or solutions- please share. I’ve had great counselors in the past but im beyond their scope of issues