Endometrial Stromal Sarcoma found after hysterectomy

Hi again KaSmi 

We spoke before and I’m sorry you’ve not had a response here yet. I will tag a fellow community champ chellesimo and hope that she will pick up on this and reply to you.

Sarah xx

Thank you SarahH21 

Hi KaSmi  I too was diagnosed with low grade endometrial stoma sarcoma, on the 4th June 2009. Mine was also discovered after a routine hysterectomy. Back then there really was very little known about the disease, unlike now. That is why your oncologist has advised you not to google, the internet is very outdated. Yes LGESS is very rare, and it is extremely scary to be told you have this disease, but it can also be controlled. 

When I was first diagnosed, they did not realise that LGESS feeds off of oestrogen so they wrongly put me on HRT, which fed my sarcoma and it is now in my lungs. You can read my full profile by clicking on my name and going to my profile page. The way to treat LGESS is to starve it of all oestrogen, so if your ovaries were not removed then now will be a good time to do so. If there is no reoccurrence then you may just need monitoring, but they may also suggest you take an oestrogen blocker like letrozole, or anastrozole. You are right, these are not easy drugs, but everyone reacts differently, and I’m grateful for my little tablet that saved my life. 

You will be in for a bumpy ride for the next few months if you are having further surgery, and you will get all of the menopause symptoms which unfortunately you will not be able to take HRT for, but you will be ok. LGESS is an incurable condition, but it is one you can live with.When I was first diagnosed I never thought I will be celebrating my 16th year cancerversary in a couple of weeks time. 

Have a read of my profile, any questions please do ask and I will answer what I can for you. X 

Thank you chellesimo .  You've been through so much and I really appreciate you replying to me. Thanks for sharing your story too. 

I have bad menopausal symptoms and have been on hrt for five years but I have drastically reduced it with the aim to stop oestrogen and progesterone by next week. And I'm going on a major diet to lose belly fat. So I'll do what is possible to reduce oestrogen now. And then wait for the CT scan results. Hoping it hasn't spread but it will be what it is. I'm just trying to as prepared as possible! xx

It is hard stopping the HRT, I went cold turkey over night, but I just keep telling myself it’s better than the alternative. Are you under a sarcoma oncologist or a gynae oncologist? X 

I am cutting it down in a matter of days so that my ovaries don't go into overdrive. But it'll be gone by the end of the weekend. 

I'm seeing a menopause team at a cancer centre tomorrow to see what they advise as potential alternatives. 

I don't know yet who I'll see.  My gynaecologist isn't an oncologist. So one of my questions when I see her will be who is in the team. Who is the oncologist etc. I've been told nothing. Her phone call to me was very direct - hello we found cancer, going to do a CT scan to see if it's spread into lungs, it's a sarcoma, need to take the obariyand cervix out. I could have been in Tesco! She didn't ask where I was, who I was with or anything. So I asked her to repeat it all so I could write it down. Then she told me not to Google it. And then she asked if I had anyone around. 

So I'm doing a lot of research to make sure I ask all the right questions and that I'm central in the discussion. 

Your story is very moving. You've been through so much and I've taken a lot from it, including drugs to ask about. But what a journey. Thank you so much for sharing xx

Because it is an endometrial cancer you may get a gynae oncologist, but push for a sarcoma oncologist. This cancer is so rare, every one in one million endometrial cancers are ESS. Yes you are one in a million and make sure you keep telling yourself that. 
I was only swapped to a sarcoma oncologist when it went to my lungs. At the time I was only the 2nd patient with ESS that she had seen, and my hospital is one of the major oncology hospitals. She now has 26 on her books. She explained that developments and understanding of ESS have come along so much in the past 10 years, and testing had become more vigorous that more ladies are being diagnosed, many had gone undetected before. I was one of the lucky ones. 

I am so sorry your consultant told you in the way she did. I think these doctors think we should know asap, and some of them are so cold and matter of fact. My GP phoned me to tell me my cancer had spread to the lungs, he simply asked if I was driving, I said no, but I didn’t tell him I was on my own just getting back into my car either. 

Thank you. I definitely want a sarcoma oncologist if there is one. My previous hospital in London does have them. But I'm now in Edinburgh. A gynae oncologist isn't specialised enough (in my humble opinion) but I'm going to a cancer centre at the hospital today to discuss menopause, so I'll ask if we have them here.

How do you manage day to day on the meds? Do you have energy to exercise, do you have to eat a special diet? It's a lot to deal with. 

I'm lucky in that it's such an early diagnosis and hopefully it won't have spread. But I won't know until the CT (no news as yet as to when that is) and when I go back in for more surgery. 

It’s not the answer I would want to give you unfortunately, as these meds have not been kind to me. I am over weight, it is hard to lose any weight on these oestrogen blockers, and my mobility is currently poor because of my pelvis issues. Other people have done better than me though. The treatment for ESS mirrors breast cancer medication, you will find a lot of threads on the breast cancer forum about letrozole ( this seems to be the first line treatment) and anastrozole which I am now on. 

I wish I could tell you better news, but hormone therapy is not a walk in the park. I suffer with extreme menopause symptoms which unlike the natural menopause will never end. The first year was the toughest as my body adjusted to the lack of hormones, I suffered terribly with migraines which lasted days at a time, and I had to leave my job. The hot flushes have eased during the day, I still get them but not as bad, but night times are the worst. Fatigue, brain fog, I sometimes struggle to hold a conversation because half way through I have forgotten a word or what I was saying. Unfortunately you will not know how this medication will affect you until you try, but with my stage of diagnoses I have no choice but to take it. They may remove your ovaries and not put you on letrozole, it will depend on the staging I think. Xx 

Thank you. A few people I know have been on that and not got on with it, so I'll ask about anastrozole if it comes to that. Testosterone will help with some symptoms so hopefully I'll still be able to keep that (brain fog, energy in particular). But your advice is invaluable and I'll add everything to my list of questions x

Please let me know how you get on xx