Monday, December 16, 2013


Ilene Fishman Goodman
The feedback from our series of personal stories has been incredible. View all of the stories here. And please consider joining us over on Facebook for more discussion, information, and support. 

When I approached Ilene about participating, her response was quick: "I would love to be interviewed. . . I really like sharing my story with others to give them hope." 

This is her story ...

What was your sarcoma diagnosis?

In what year were you first diagnosed?
1995, when I was 24 years old.

How are you feeling today?
Really good.

Tell us a little about yourself.
I’m married. No children, two cats. Right now, I’m unemployed, but I did administrative work for 20 years. I live in Baltimore, Maryland, and I like to go shopping, go out with my girlfriends to dinner, and exercise when I can.

"They said it was a virus"

What is your diagnosis story?
Before I found out I had cancer, I was pregnant with our first child. At 28 weeks, I started getting swelling in areas you shouldn’t get swelling from pregnancy. Eventually, I went to the hospital and they found out that I had a lot fluid around my heart and lungs. They said it was a virus. I stayed in the hospital for a week to have the fluid drained off from my heart and each lung.

I went home and felt much better.  At 32 weeks, I went for an ultrasound and they couldn’t find the baby’s heartbeat. Unfortunately, the baby had passed away.

Two weeks later, I wasn’t feeling well. I had a rapid heartbeat and was out of breath. My parents took me to the hospital where I was told I had fluid around my heart again. They decided to put a window by my heart so the fluid would just drain out if it happened again. It was when I went in for that surgery that they found the tumor.

Did you have surgery, chemotherapy, radiation, something else?
I had eight rounds of chemotherapy (called MAID) over a period of around eight months. Every three weeks, I went to the hospital as an inpatient for four days for the chemo treatments.

After chemotherapy, I had a ten hour surgery to remove the tumor. It was growing from my diaphragm, close to my heart and into my liver. They removed my diaphragm and replaced it with Gortex and mesh. They removed the portion of my liver that was involved with the tumor. However, the liver can regenerate itself.

"I feel really good about my health now"

Was your life on hold while you battled sarcoma?
As far as my job was concerned, it was. I was very fortunate that I worked for a small company – they kept my job until I got better.

As far as my life and living it, I would say when I felt good, I would go out and do things as much as I could. I had six weeks between the end of chemo and my surgery so my body could recover from the chemo. In this time, I planned and did so many things with family and friends. Not because I didn’t think I was going to make it through the surgery, but because during the chemo, at times I felt like a prisoner and having this break before the surgery – I wanted to do as much as I could.

Have you had any long-term side effects from treatment?
Not really. I do sometimes feel I have chemo brain, but other than that, no long-term side effects.

Are you still seeing your treating physicians?
I see the surgeon who did the surgery once a year and get a scan before I see him.

How do you feel about your health now?
I feel really good about my health now. During the first ten years or so, I would definitely get anxious, but only right before my scans and check-up with my doctor.

The rest of the time, I wouldn’t think about it because I have always felt that if I thought about it or worried constantly, then the cancer would have won and I won’t allow that to happen.

As an 18 year survivor, it really is never on my mind anymore.

How were relationships with your family and friends impacted?
Although we were a close family before, my relationship with my family grew closer.

As far as my friends were concerned, I found out who my true friends were. A friend I thought was close turned out to abandon me during my illness while another friend who I wasn’t very close with was there during my entire illness.

How is your life the same or different now?
My life is very different since I was diagnosed and treated for my cancer. I am not the same person I was before I had cancer. I am a stronger, much more confident person. Once you beat something like cancer, you can never be the same person again.

I have given speeches and talked with people who were newly diagnosed and met some amazing people. I also try to live every day to the fullest because you never know what will happen tomorrow.

I appreciate the small things that I never really noticed before – like when the flowers bloom in the springtime, stars in the sky, and the smell of the ocean.

"...they only expected me to live six months"

And, finally, what is your biggest piece of advice for someone who is newly diagnosed with sarcoma?
No matter how dim it may look, never ever give up.

When I was diagnosed, I was told they only expected me to live six months. Here I am 18 years later.

Surviving and going strong.

A reminder: Ilene's story is her own personal story. Nothing here is meant to be medical advice and any views expressed here are not necessarily those of Sarcoma Alliance. (Though we do believe in living life to the fullest.)


Anonymous said...

Amazing woman!

Sarah Robinson said...

and beautiful in every way!

ilene fishman goodman said...

thank you both so very much!

Karen Armstrong said...

What a beautiful and inspiring story. Thank you for sharing it. Your an amazing woman !

Anonymous said...

ilene Fisherman goodman, you are amazing and your story is similar to my mom's in that she also had a pericardial effusion 3 years ago and was diagnosed with high grade pleomorphic ST Nov 2014. Seems the inflammation in the body seems to be an indication of this cancer that needs more research. If you could please get in touch as, that'll be great.

James Darr said...

Fantastic! as a fellow Sarcoma survivor I can relate...