Leiomyosarcoma of the Inferior Vena Cava

Pattie R

I am a 71 yr old female in excellent health, felt good and looked GREAT (so I was told constantly, LOL) until March 2017 when I was diagnosed with Stage 2 Leiomyosarcoma in the retroperitonal area. The tumor was 5.5 cm when it was found. The tumor had invaded and blocked the Inferior Vena Cava, which compromised my right kidney. My body miraculously created collateral veins to continue to function as required. After a biopsy confirmed the diagnosis of LMS I was referred to University of Miami Sylvester Comprehensive Cancer Treatment Center, which has Sarcoma specialists.

The treatment plan called for pre-surgery chemo to shrink the tumor. After 4 cycles of Gemzar and Taxotere, the tumor grew to 8 cm. I lost all my hair and felt tired during the chemo but tolerated it fairly well. I was hoping for surgery but the surgeon and oncologist agreed that we needed to try different chemo to shrink the tumor and make surgery less risky and more likely to get clear margins. Today is day 1 of the 2nd cycle of Dacarbazine and Doxorubicin, (Adriamycin) which is nicknamed "The Red Devil". I didn't find that very reassuring. I got the Dacarbazine via IV and the "Red Devil" was combined with saline and infused at home over a 3 day period using a CADD pump. I had to go back to the CTU each day to get a refill of the chemo bag. This chemo combo seriously kicked my butt. The mouth sores were painful, but I kept them under control by religiously swishing my mouth with baking soda and salt water. The fatigue and shortness of breath was so bad I was afraid to go to the grocery store. I will have a CT scan after completing this 2nd cycle. I sure hope the tumor shrinks so the surgeon thinks the surgery will be successful. He has told me I will probably lose my right kidney and perhaps part of my liver. This rare cancer is so darn scary.

I guess I am blessed that they found the tumor before it metastasized. I just felt a little discomfort since 2013 that would come and go, was not seen by an abdominal ultrasound in 2014. In February I told my PC Dr the discomfort seemed to be occuring more frequently and lasting longer. I thought I might have kidney stones. She sent me for an abdominal and pelvic CT scan and they saw the tumor. The biopsy was a nightmare too! The first biopsy was the most painful experience I have ever experienced, and I have given birth to four babies before they gave epidurals. I had minimal local anesthesia for the procedure which was a CT guided needle inserted through my back. The procedure itself took almost an hour because they were having trouble targeting the tumor. Apparently it is in a very precarious location, right on a major vein, close to the liver and adrenal gland. The biopsy report came back that the tissue retreived was from the adrenal gland and not the tumor! I was petrified to learn they needed to do a 2nd biopsy, but my oncologist assured me he would take care of it. He made sure I was given an adequate amount of local anesthesia and an IV with something to relax me a little but not put me out. The 2nd biopsy was with no pain and only took about 15 minutes. I don't know why they couldn't have done that right the first time. 

I'm not sure what will happen if the CT Scan does not show this chemo is working to shrink the tumor. I had read on the internet that LMS does not respond well to chemo but my Sarcoma specialist assured me they have had successes with chemo. I know I have to trust the experts!

DaveGiz

My wife has Leiomyosarcoma it

My wife has Leiomyosarcoma it is stage 4, she has one large tumor and it is also in both lungs, liver, Kidney, hips and was in her leg.  She is on her 3rd different chemo, the first one did not work and it was the newest one they use, she than was put on one that damaged her heart and now she is on a combo that seems to be working.  The main tumor has shrunk but we will not know for sure until she gets her CT scan on the 12th of Oct. Gemzar and Taxotere is what she is on now and it seems to be working.  I know it is hard but nothing is written in stone and the chemo does work.

Pattie R

surgery to remove retroperitoneal leiomysarcoma of the IVC

My latest CT scan shows the tumor has shrank and my oncologist and surgeon agree I am ready for surgery. So frightening, I am excited and anxious at the same time. I know this is a complicated surgery but also know it is the only chance for long term survival. I meet with the Drs. on Friday to find out when the surgery will take place. If you have had this type of surgery, please tell me how it went. How long did the surgery take? How long were you in the hospital? How much pain did you have? How long was your recovery period? Were there complications?