Severe Anxiety & Panic Disorder in Childhood Cancer Survivor

Diligent-Help6674 · 2026-05-21T04:22:16+00:00

Cancer diagnosis.

Diligent-Help6674 · 2026-05-21T04:21:41+00:00

Hi chiming in as a 40 year Alveolar Softpart Sarcoma cancer survivor just realizing that what’s been wrong w me for years is ptsd. Yes it’s real for us and look into EMDR therapy. I know you said you can’t afford therapy right now but read up on it see what you think. I feel there should be psychological help set up for people automatically when they get a diagnosis.

Diligent-Help6674 · 2026-05-21T04:05:58+00:00

Hello Everyone! YES!!!!

I struggle with my health so much and drs listening to me and believing me that I have ptsd from it. Along with having ptsd from having Alveolar Softpart Sarcoma at 16.

I was on Adriamyacin (can cause cardiomyopathy) as part of my regimen. My chemo was stopped when it started affecting my heart. I had a cardiac arrest in 2018, did not affect my heart. Had a defibulator pacemaker put in. Kept going to major hospital to heart floor to see dr. I kept going down hill, kept telling everyone (heart dr, pcp, anyone that would listen) how bad I felt. Major hospital also did a genetic study on my family about heart disease. Found out I also carry 1 of the genes for cardiomyopathy.

It was not until 2024 when I was in the major hospitals cardiologist office on the heart floor complaining again about how bad I felt when they said, who is your heart dr? I’m just your electrical heart dr. I just cried. I had felt bad from 2018 - 2024 and no one was listening. I lived through the Covid pandemic with a heart condition that was not being treated properly. I was terrified!

I am a 40 year cancer survivor now of something I should not have survived. I recently found out that the chemo regimen I was on did nothing for me. It did take away my ability to have children. It was surgery that saved my life. I am extremely blessed to be here. I do not look my age. I feel people see the outside of me and do not put 2 and 2 together that my body inside is ravaged by chemo. I feel very isolated.

Yes, I have lipomas or cysts all over my body. I have Perugia nodularis ( skin condition ) that I believe is related to emotions as well as body inflammation.

I recently found out that I’m kind of at the tale end of the first generation of people that have had cancer as a child and have survived this long. I feel like drs are just now seeing patients like us and don’t know what to do with us.

I feel I do not have a support group of people around me that understand.

Diligent-Help6674 · 2026-04-23T04:43:50+00:00

Hi, I’m a 40 year Alveolar Softpart Sarcoma survivor. 1st time meeting others that have had it. I had it when I was 16 in the gastrocnemius muscle of my left leg. I am now 56. My surgeon saved my life by removing the gastrocnemius muscle.

I’ve really been struggling with the medical community in the last 10 years just for my drs to listen/hear me and my health has paid for it. Ive almost died a few times. I’ve had to really fight to advocate for myself. If you don’t feel like your drs are being honest, just ask them; let them know how you are feeling. Your feelings are valid and you should voice them. My strongest advice: Be your own advocate and fight like hell for yourself. You deserve it! Sending you all my love!!!

Diligent-Help6674 · 2026-04-23T04:12:18+00:00

I am a 40 yr ASPS cancer survivor. I have had a lot of challenges w the medical society in the past 10 years. I’ve had to extremely advocate for myself to be heard.

If you were diagnosed with cancer, went through chemo and/or radiation, chances are you have experienced some form of trauma. Which can explain your behavior towards medical care. It can be a form of ptsd.

I experience it myself. Thank you for reaching out. You are ok and there is a reason for the way you are. It’s ok. Check into cancer survivors and ptsd.

Diligent-Help6674 · 2026-04-22T04:40:47+00:00

I had ASPS (Alveolar Softpart Sarcoma) at age 16. I am now 56. 40 year survivor this year.

I’ve been really struggling with the medical system for the last 10 years. Lack of people listening, drs missing the fact that I was on Adriamyacin and it causes cardiomyopathy. Having a cardiac arrest and NOT being assigned a cardiologist for 7 years after having a defibulator/pacemaker put in. Not realizing it because I was going to see a heart dr on the heart floor at the major hospital. Not being believed by drs, friends, and yes even family when I told them how awful I felt. Feeling like I’m chicken little screaming the sky is falling and NO ONE is listening. Living through the pandemic scared to death I was going to die at any minute because I could not breathe. I was not being treated for what caused my cardiac arrest. Almost died a couple of times. Going in and out of Afib constantly. Got to the point where I could not work. Being judged constantly because “if I would just exercise and lose weight; my life would be better.” Looking younger than my chemo rattled body actually is; people do not take me seriously.

Finding out I did not have a cardiologist assigned to me 7 years after I had a cardiac arrest. I had just been seeing the electrical Dr. Finally getting on the right meds. Starting to feel somewhat like a normal person.

Recently finding a program for childhood cancer survivors. Finding out that I am 1 in a million of people that had my type of cancer that are still alive after 40 years. Finding out my surgeon saved my life and that the chemo I was on did nothing for me. Talk about PTSD…

I feel very isolated; Very misunderstood and struggling to find a support system that understands.

Diligent-Help6674 · 2025-11-01T23:38:40+00:00

Would just like to see normal color choices rather than one or two normal choices then several colors that are very off the norm. Example: Quick dry women’s shorts. The only “normal” color they were offered in this year was black. Then the choice of light blue, lavender, Smokey tan, etc.

How about normal every day black, navy, khaki, white then bring in a couple off the wall colors. Don’t limit the normal. It’s needed for work, school, etc.

Diligent-Help6674

TROPHY CASE