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Uterine Sarcoma

Priscilla_Flood's picture
Priscilla_Flood
Posts: 2
Joined: Mar 2019

Back in August of 2018, I was admitted to the hospital for Colitus. During the examination the doctor found a mass in my uterus  and recommended I have it looked at by my gynecologist. They did a sonogram and the mass was quite large almost 13 cm. My gynecologist had the mass biopsied and it came back benign so we talked about my options. I decided to have a total hysterectomy performed that way there would be no issues of reoccurrence of what my gynecologist thought was a large Fibroid or from other tumors or possible cervical cancer.  Hysterectomy went great I was feeling better than ever I went back to her two weeks later for a follow up and I’m told when they sent it to pathology it came back malignant.  My gynecologist believed it was confined  but wanted a second opinion anyways. I agreed and was sent to see a gynecological oncologist .  She requested a pet scan which revealed the uterine sarcoma had already spread or metastasized to both my lungs. Reviews of CAT scans of my lungs from August revealed there was no cancer at that point so between the time of my hysterectomy In November 2018 to January 2019, the cancer had spread, how is that even possible. Less than 3 months ago I was healthy what happened.  No one has any kind of reassuring prognosis in fact they said that the chemo is palative care only. I’m looking for anyone who has had some success with chemo or has a positive story to tell that gives me more than a few months .

Priscilla_Flood's picture
Priscilla_Flood
Posts: 2
Joined: Mar 2019

I was diagnosed with Stage IV B Uterine Sarcoma metastasized to both my Lungs. Everything I read is disheartening. I am in chemo now there is no talk of utilizing radiation or surgery on the tumors. Has anyone heard anything positive regarding chemo treatments doing more than palative care. 

kulchudbelle
Posts: 1
Joined: Apr 2019

Hi Priscilla,

Your story impelled me to respond. I was diagnosed with Stage IIIB Leiomyosarcoma in April 2016. I sought three second opinions (MD Anderson, Memorial Sloan Kettering and Emory University- I live in GA) before I decided to pursue care at MD Anderson in Houston. I understand how you feel about reading things that are disheartening. I felt the same EXACT way! I finally had to stop reading those sites so I could maintain an upbeat attitude, stay in faith, and not get depressed. I want to encourage you to hang in there! I chose MDA because they have a whole department specializing in sarcoma. MDA docs are experts in sarcoma and, since it's so rare, that is exactly what i needed. I was even able to secure housing options and other support systems while I was there. WIth the help of a couple of foundations, I also received a little seed money to help out.

Your question of how the cancer could have metastasized in three months is absolutely valid. I've been told that LMS likes to first go to the lungs when it metastasizes. While there really is no absolute way to tell, the metastasis may have already occurred prior to your surgery or it may have occurred after surgery if the surgeon cut into it, nicked it or otherwise caused the cancer cells to spread. Since he/she thought your tumor was benign, it stands to reason that they had no reason to take special care when removing the tumor and who knows if they got clear margins. If your hysterectomy was performed laparoscopically, and a power morcellator was used, it could have spread the cancerous cells around too. I had a laparoscopic partial hysterectomy which started this hellish experience.

Don't give up!! Ever!! Ever!! Ever!!!  

At MD Anderson, my chemo cocktail was doxorubicin and dacarbazine (Jul-Dec '16, 6 rounds), then radiation (Jan-Feb ’17, 35 treatments) and finally, surgery (Mar '17). Now, I continually praise God that I'm two years cancer free. I have a 2-3 of “stable spots" in my lungs (1-3mm in size) that are likely not metastasis, but normal nodules. I forget what the actual name is, but you can get the same nodules from coughing too hard, scarring from a cold, infection or some other innocuous way. Anyway, they haven’t changed in size in three years, so I don’t worry too much about them.

I keep stressing MDA because Emory wanted to treat me with HORMONES!! Now, that may work for some, but in his explanation, the doc said his hormone-treated patient has a recurrence every 18 months “like clockwork”. Who thinks that is a good thing??!! So, I immediately x’ed them out while he was talking. Who wants to have a recurrence every 18 months!!! SMH

For me, MSK was too far and expensive to travel to and fro. Hotels and places to stay were pricey too, so I chose MDA...for it's expertise, lower costs, good weather and proximity to New Orleans. :D I used to live there and needed as much fun as possible when I felt well enough to travel.

If you'd like to chat, I'm totally open to that as well. I will be happy to tell you all that I've learned in my journey. Healing blessings and love to you!! 

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