Hi Nicola,

I was diagnosed with ESS 14 years ago. It's a cancer with a good survival rate. It's very scary to get that diagnosis though, and it can be difficult to find out about this cancer which is quite rare (though becoming commoner).  A few months after diagnosis I found an internet group for ESS sufferers, which I have found a tremendous support. It's good to be able to share some of the anxieties and concerns that other people don't understand. The group I joined is a yahoo group, and I'm still a member, though I don't visit the site so often now. Members share tips about medication and other issues and give general support. They also share information from their doctors and pool knowledge acquired from researching. Some doctors know very little about ESS, while others know a lot. My own gynaecologist had never had another case before mine. 

Several doctors and researchers have worked with the yahoogroup, including two American doctors, Dr Ramondetta, a researcher, and Dr Robboy who wrote a text book on ESS. Also a research team from Austria has used volunteers from the group for research. At the start there were fewer than 20 members, but there are now over 350 members worldwide. So you are not alone! If you think you might like to share experiences this way you'll find the group by searching on Google. I am not sure if it's okay to give the address here, but the name is written as one word endometrialstromalsarcoma if you search that and yahoogroups you'll find it.  I am sure this will help you with your feeling of isolation. It was such a relief to me. 

From the group I'd say Megestrol (Megace) is the basic treatment for ESS. Some ladies in the group have been on it for years, but for some it does have weight gain effects, and some people can't take it, or only for a short time.  It's a progesterone and the effects can be like PMT. For me progesterone gives me headaches and moodiness.

In the last few years a more common treatment is an aromatase inhibitor (AI) to drastically reduce levels of oestrogen in the body.  The ones used are usually letrozole or anastrozole or exemastane (Brand names Femara, Arimidex and Aromasin). There are quite a few ladies who had secondary nodules that shrank or disappeared with this AI treatment. They are only useful if the tumour is oestrogen-positive.

There are several ladies in the group whose experience was like yours, that the ESS was only found when it recurred somewhere else. The group's longest survivors whose ESS was discovered from secondaries have lived between 20 and 30 years with the disease. Some had tumours as big as 12 cm initially. 

What I learned first was that the size of the tumour is significant, that oestrogen should be avoided including oestrogen mimics in the environment and HRT, and that the treatment may depend on whether your tumour had oestrogen and progesterone receptors in the cells. Believe me, you are not alone. There are a few hundred of us. I know the feeling.

I sympathise with your position. My own younger son had just started university when I was diagnosed, and I doubted I'd see him through it. I not only did, I saw him get his masters degree after that, and was able to enjoy his wedding in 2012.  

In UK the Marsden hospital in London is the main expert centre, but my own follow up was at the Northern Gynaecological Oncology Centre at Gateshead (Newcastle upon Tyne medics), and has been very good.

I hope this cheers you up, and if you want to join the yahoo group you will find me known as Rosi there. You need to write and a moderator (probably Suzy) introduces you, then share, sound off, ask questions or whatever you want or need!

Good luck! 

RosemaryB

Thank you for your message Rosemary, I will take some tips from you ....  Do you have any tips on what to take for hot sweats? I am on Anastrozole and have terrible hot sweats and have gained weight too. Thanks very much once again, all the very best Wendy x

Hi mic

1st time email. 

I have had ess  6 times in 35yrs. My treatment is arimidex (Generic name anastrozole) for  last 13yrs. It is in multiple places now but I still believe I can get rid of it. When I was 1st diagnosed little was known about it. My oncologist of 13yrs had never had a patient with it and the future wasn't good. Progress  has  been great recently, just get an oncologist who understands it or has access to someone who does. Hope your scans were  OK,  I  have one next week. For 35yrs I had no one besides my  oncologist to discuss it with, progress is being made. By the way, I hope no new patients get the info I received, but another story

Hi , I have just found your thread I was diagnosed with ess in august after a hysterectomy for endometriosis it was a massive shock. I too get achy bones and I'm hungry all the time? I also get swelling in my hands do you? I joined a Facebook private group womb cancer support group, one of the ladies has it may be worth you joining xxx it's been great for me. I too have a teenage son :) 

I hope you're keeping well. Have a great christmas.

Marie13

Hi nic.  I was diagnosed in may 2015 .with low grade ESS. Like you I had a hysterectomy 10 years ago when I was 35. They left my ovaries but this year found a tumour on my bowel and around my ovaries. Again like you i was misdiagnosed as severe endometriosis.  Unfortunately I have a small spot in my left lung as well. 2 years ago I had collapsed lungs and again was misdiagnosed  after surgery to the lung.  I was given letrozole initially but has such bad pain with it I had to stop. I have since started on Aromasin.  They said radiotherapy would not help . It is lonely. The doctors are fascinated and happy to see you as they have never seen a case like this but otherwise there is no one to talk to. I just try to get on as normal. I am not even sure I want to talk anyone about this . I just wanted you to know you are not the only one. I think when something like this happens we all feel alone. I think that feeling is natural. I have no answers for you but keep going......it's all we can do. 

Yve. X

Hi Yve,

Sending massive hugs and your not on your own and I feel scared a lot but then get everything  in to prospective and feel ok. Have a great christmas and new year. The private support group on Facebook womb cancer support you can read and not comment if you prefer, it may help to know your not on your own ...not ever ...and theres lots to read and people just like you xxxxx

Hi Ladies

I had ESS in July 2012 and am currently no evidence of disease.  I've just re-registered on this site and am happy to discuss any queries with you.  I'm also on the same private Yahoo site as RosemaryB mentioned and find it useful too, albeit I am an infrequent visitor.

ms2016

Hi ladies 

I am also diagnosed with ESS last march and go through hysterectomy and removed the right ovary,the scan after operation said that there is residuce tissue on the right pelvic and tummer thrombosis in the VIC (the main artery) which is very dangerous could couth heart attack or stroke suddenly anytime,after 3 month from my operation my PET scan confirmed the situation.

The doctors was confused some say chemotherapy.,some say hormontherpy,that make me go and take the responsibility of my health in my hand I read and read about the alternative therapies I mean here the holistic health mind,body,and soul.

I told my oncology about my plan and refused to take the drug ,my doctor wasn't support me at all in spite of she was very angry and challenged me and said you will never success in whatever you are doing and even refused to do follow up scan .

No problem, as long as my intention empowering me with the right direction, I hear deep sound inside my heart saying I am on the right direction.

My general health is amazing I am doing things when I am 39yrs wasn't able to do it when I was in twenties,running and walking for one hour daily,fasting,meditate,vortexes,water,juicing,eating raw food (friut&vigitables),supplement , coffee enemas,sleeping early,relax,breathing.

My body detoxify step by step No rush, I am happy to see myself grow younger and healthier.

My oncology confirm that in my last visit in July and give me another appointment after 3 months if there any new symptoms he will do scan for me if not  he will give me another appointment after another three months.

I wish I can afford to have private Pet scan to show me what is inside my body ,but no problem I am not said I know that everything come in its time when my body totally clear itself from ESS the scan will come  confirm that I am sure that will happen.

Ladies I am sorry I wrote too much ,this my first time to share my Story on line,because I feel good actually very good and want everybody know that.

All love shery