Lynnie

Definitely have hope! Mine was poorly defined borders, into my cervix as well, ovaries and pelvic lymph nodes. Not one thing showed up on scan! So know it is possible!

Have had you on my mind. Hope your appointment with your oncologist gave you some answers.

Hello, Lynnie. Sorry for the delay, I am just learning to use this sight effectively. Initially I went to the ER, they told me I had a 15 cm mass on my left ovary, believed to be benign. I was referred to an oncologist who told me that he wanted to save my ovaries as to not launch me into menopause, I don't have children and don't plan to, so I wanted it all out afraid of recurrence. I signed for him to do a full hysterectomy if he found out during surgery that there was cancer and a more radical approach was necessary. Well, that is exactly what happened, uterine carcinosarcoma, Grade 3: The cells are poorly differentiated, Stage IIIC1: The cancer has spread to the regional pelvic lymph nodes. Recovery was supposed to be 6-8 weeks, but I think I am just now starting to feel normal again, after about 90 days. Initial recommendation was 6 rounds of Carboplatin/ Paclitaxel every 21 days. Radiation was mentioned, but I wanted to try just chemo first as that was what was recommended for my stage. If it doesn't work a more aggressive approach may be necessary. I do believe with Stage 1,surgery is standard. The way I understood it was that it could not be fully assessed until surgery was performed and specimens were sent to the lab, which was done while I was still in surgery. Do your research, ask questions, and constantly advocate your own care. I don't know how you know the Stage prior to surgery, but maybe yours is different. I would sign a waiver so they can do whatever is necessary if they should discover otherwise. Wish you all the best, I will keep you in my prayers.

It sounds like you don't really have a definite diagnosis or stage. They do the staging during surgery. They will remove all female organs and lymph nodes in the area to determine the stage. If it spreads to a lymph node, you will be diagnosed with stage III. It sounds like you have endometrial uterine cancer, instead of leiomyosarcoma, which is better. I don't know much about leimyosarcoma, but it sounds like it is more aggressive. If you truly end up being stage I, you will probably only need the hysterectomy. My friend had it about 2 years ago, and she only had surgery. Of course, she was terrified after hearing about my treatment (which was surgery, chemo, and radiation). So, it will take some time, but my surgeon assured me that waiting 3.5 weeks for a surgical appt wouldn't make a difference in the outcome. He was very reassuring, which was great because I went to my consult by myself. I recommend bringing someone with you, if possible. It's scarey just walking into a building that says 'cancer center'. I wish the good results and good health soon.

Hello Lynnie, I am happy you found this site, but sorry for your diagnosis. I was diagnosed in May 2010 at age 49 with stage I uterine leiomyosarcoma. I had a complete hysterectomy at that time. Afterwards, I had quarterly PET/CT scans, but no chemo or radiation. There was no evidence of the disease until the beginning of 2013, where it metastasized to both lungs. I have been on multiple chemo drugs and nothing has seemed to work up to this point. One tumor is quite larger than the others, so I am currently receiving external radiation on that particular tumor to see if it will shrink. Tomorrow is my last radiation treatment, then I'll have to wait until March for my next CT scan to see if the radiation was successful. Though I have been going through treatment for two years, any side effects I have had have been minimal. I feel really good physically, just tired at times, and continue to work. I wish you all the best in your journey and if I can be of any help, please feel free to reach out. Karen

Hi Lynnie. As you've already seen, there are lots of great people here. I'm glad you found us but glad you found us. Wishing you all the best.

Hello and welcome, we are happy to have you with us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

https://www.whatnext.com/conditions/cancer/endometrial-uterine-cancer

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

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GregP 3X Survivor
WhatNext Community Mgr.

Hello welcome to whatnext but of course sorry for what brings you. You will find much support here. If I can help in any way please let me know.

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter