Ewing Sarcoma Survivor. Need Advice.

ryanm Member Posts: 1
edited February 2018 in Sarcoma #1

Hello everyone.

I have been an Ewing Sarcoma survivor for about 13 years now. It was definitely one of the better highlights of my life, beating cancer and all. It's something you can never really get over, and all these little scares sometimes pop up to make you think it will come back again.

I had my Ewing Sarcoma on my pelvis bone. One of my pelvic rami was rescted, and my bladder needed to be supported... by something. I'm not really sure. I was 11 years of age when I was diagnosed, so I was told very little of the technical details besides 'it's time for chemo' and 'chances are you'll be alright'. So... I can assume my cancer was largely local, or regional. The oncologist said it was putting pressure on my bladder. 

Anyway, that is my story, and now something is happening to me: 

The left groin appears swollen. However, it is largely painless, save for a 'full' sensation inside it. It feels like something is amiss, like something is wrong with my left hip joint in addition to my groin. I've always had trouble with my hip abductors. I can use the hip adcutor machine at the gym pushing out using the outside of my legs, but pushing in is... impossible. Those muscles had a loss of function, on bothsides it would seem. (Perhaps both rami were removed, then. I am simply not sure. I do know not much about the technicalities of my surgery, though it important to note that I do remember my surgeon saying that my bladder may need some kind of corrective surgery in the far future... given the far future might be here, perhaps it's time I went to a urologist?)

At any rate, I did go to the ER for this, because I did not want to wait anymore. The ER doctors agreed that my left groin did seem a little bit bigger than the right. This is mostly notable when I stand up. Laying down, the groin rests easy. I got my bloodwork. Everything was cool. They ran the necessary tests given my history. They checked my urine, nothing bad there. They ran a Cat scan of my pelvis and... nothing was wrong. Except for the missing part of the pelvis bone, and my bladder being a little bit 'off' (I forgot the words on the paper, disjointed, maybe?) My lymph nodes were great, there were no masses... just nosthing wrong. They DID refer me to a urologist and family doctor, so there is that, so I will get the necessary followup.

Anyway, I am very sorry for the long post, but that's kinda what's happening in my life right now. Are there any late survivors who had to endure a similar surgery? Could this be a late effect? I mean, I feel fine. What amounts to 'pain' right now is mild discomfort. *shrugs*.

It is also notable to point out that that portion of the groin shrinks when I need to take a long piss. 

Weird stuff, I guess.

TLDR: I had my pelvic rami removed after ewing sarcoma of the pelvis. It's been 13 years. I am 24 now. My left groin is swelling, there is little pain, but rather a fullness. Could this be a late effect in relation to my bladder? When it empties, it shrinks a bit. Hips don't function when pushing in.



  • AUM
    AUM Member Posts: 2
    edited February 2018 #2
    U r a survivor. All the best

    U r a survivor. All the best to u. 

  • NicoleMarie91
    NicoleMarie91 Member Posts: 2
    Did you get the advice you

    Did you get the advice you needed??