I wish I hadn't googled.

If I have learned anything about my diagnosis stay away from google 

Your daughters are right, google is outdated. When I was diagnosed with endometrial stromal sarcoma, google gave me about the same odds that you have just seen. That was 12 years ago.... 

Hey, I am 28 and diagnosed with high grade endometrial stromal sarcoma in my vagina this year. It is so incredibly rare I don’t expect to ever meet another like me. I fell down the google hole, it is traumatising. You have to stop looking and focus on yourself. I don’t look anymore. I was in a state of terror for about 3 months. You will get through it. Every case is so unique , what happened to others cannot tell you what will happen to you. Xx 

Hi Deborino,

I was diagnosed with this in January, 2 surgeries later and currently clear. I feel your pain, I'm 46 a mother of a 23 year old and didn't think this would ever affect me.

I limit my Google searches and reach out to others on here, though there are few with LMS.

I just wanted to say you're not alone, we're all uncertain of the future but here for anyone that needs to talk through this.

I'm in Nottingham, on 4 monthly reviews and yearly CT scans.

Take care, Chris xx

Hi Chris, thanks for your message. I wouldn't wish sarcoma on anyone but I do wish there were more people to post on the sarcoma forum. I live in Manchester and I'm under the sarcoma team at the Christie hospital. I will have three monthly scans etc and see the consultant two weeks later. It seems like no sooner will I have my scans and consultations and it will be time for the next one. When I was leaving the consultant he said that it usually returns within two years. I also worry about the lymphovascular space invasion. My consultant said that chemo and radiotherapy doesn't work against it. Best wishes to everyone. Deb

Hi Deborino

I can totally say chemotherapy worked with my wife's Leiomyosarcoma; my wife's though is not leaving but has essentially gone to sleep - a stable cancer - we will take that. It has been like that for 6 years.

<<hugs>>

Steve

Hi Steve, this is what I'm confused about.i know other women have had chemo and it has slowed things down. When I went to Christie's I fully expected some sort of treatment for the LVSI. The consultant said we should watch and wait and have 3 monthly scans and consultations to check for mets in the lungs and liver and because there will be such a short time between scans if necessary they will remove them. He also said that it doesn't tend to return to the pelvic area. I do have non alcoholic cirrhosis of the liver and was in hospital 8 times between September and December last year with internal bleeding. I don't know if anything would be done if I had liver mets as my liver is in a bad way. As I mentioned before, my scientist daughter is coming with me to the Christie at the beginning of November and she will grill him at length! Deb

Hi Again. Another LMS person here! My latest is that it was re staged from 2 down to 1b. This is due to them initially taking my uterus but leaving ovaries and cervix stump. But now they've removed those and they were ok.  I found this quite confusing. But i agree about Google.  It's scary.  Yes it can come back. But if they pick it up on the scan then it can be treated.  Thats good enough for me right now. Let's stick together and get through this scary time.

Hi Deb's, I'm so relieved for you that your stage has been downgraded. I think I'm winding myself up again as my next scan is in a couple of weeks then two weeks later I'll see the sarcoma consultant. I was watching something this evening and a CSN was saying that 80% of cancers return. What is the plan for you regarding monitoring? I'm sorry I'm being a Debbie Downer but I'm going through a low mood phase! I wouldn't wish this sarcoma on anyone, but I wish that there were more people on this forum. I feel like I can't really relate to the ladies on the womb cancer forum.

We'll fight this together, Deb

The plan is scans every 6 months. They're only checking lungs .x