Scared Malignant Sacrococcygeal Germ Cell Cancer Surviver

Elizmcar

A little background: during my infancy for a year (back in 1989) I was hospitalized at Schneider’s Children’s Hospital (Now known at Cohens Children’s Hospital) in Long Island, N.Y. I was treated for malignant sacrococcygeal germ cell tumor. I had undergone multiple transfusions, chemotherapy rounds, bone marrow transplant, and ultimately reconstructive revision of the colorectal coccygeal area. 

I am now 28 years old, and these past 4 months I’ve been experiencing pain so deep within the incision area. My incision extends further left from the tailbone area. Currently it’s a clean, closed but deep scar along the buttock (no change in appearance).

My bowel movements started to change (painful defecation, change in shape, & feeling unfinished) and the constant pain began to get bothersome 2 months ago. So much so I got scared and went to the emergency room. I explained my history, figuring that would matter with diagnosis. Labs all came back negative for infection, but CT of abd/pel showed infiltrating process or colitis to the distal sigmoid colon, 1 small hepatic lesion, 1 small renal lesion, and multiple mesenteric lymph nodes. The ED sent me home with two antibiotics and referral to a GI doctor.

The antibiotics gave me diarrhea and nausea so I felt worse, pain persisted so I went to GI doctor. GI doctor changed the antibiotic (which solved the diarrhea problem), and whole bunch of tests. Now I’m pending a MRI of the abdomen + MRI pelvis, and a colonoscopy. 

I go to my MRI of the pelvis in 2 days and the anxiety + pain these past 2 weeks is unbearable. Its hard for me to walk because the pressure to the left leg while walking worsens my pain. Both of my hands have gone numb at random throughout the days.

Please does anyone have experience or knowledge of survival late effects of malignant sacrococcygeal germ cell tumors/cancers. Do I have to worry about late spine involvement, recurrence, or change of residual malignancies from occurring? 

 

-Liz