Hi I was wondering if there is anybody else out there that has had Endometrial Stromal Sarcoma which was diagnosed AFTER having a hysterctomy and how things are going?Endometrial
Dear Carol and Aniseed
I'm sorry to hear that you have ESS. I haven't checked the forum for a long time but I saw your posts and wanted to reply. I was first diagnosed after hysterectomy in 2004 and had a recurrence in 2012. I haven't had any further surgery - I am on 400mg of provera and I know the appetite problems well. I am just managed to lose the weight I have put on since I started taking it. But it's working so far and is holding everything stable. I hav númerous tumours in the pelvis and some spots in the lungs but I am physically very well and carrying on with life pretty much as normal.
Good luck to you both, I hope you are both well although no doubt scared and anxious. Two years down the line I am much calmer than I was when the recurrence was diagnosed.
Ruth
Thank you for the reply and kind words. It is very interesting and somehow reasurring to read the experiences of other ladies in the same boat. I have been put on Letrozole (only been on it two weeks) but am already starting to feel the muscle aches and joint pains for which I have started taking CoQ10 to see if it helps. I am amazed at how many people seem to be living with this. I have not read through all the treads on this disease yet but am getting the impression that living with this is more common than being given the all clear from it. Is that the case? I have a couple of very good friends who had different types of cancer but who both had to have chemo and radiotherapy but both have now been clear for some years. This is certainly a good place for getting information to formulate questions for the specialist!! Good luck and continuing 'good' health to everyone.
My Mum has this cancer. She also found out after having a hysterectomy. It was a shock! That was in 2012, they found that one of her lymph nodes was enlarged so they took it out as precautionary but found some cancer in it. She ended up doing 6 months of chemo which was great and she was in remission for 18 months. Its since come back though and had surgery and it was a long one and now she'll start chemo again. Hopefully it works again. Her cancer is not hormone responsive apparantely. Not sure if anyone else is in this position. Its so rare there isn't anyone we can find who has this. But reading of people that are living with it is a great relief!
I just wanted to welcome you to this forum and hope you will meet others here who have or have had Endometrial Stromal Sarcoma.
I noticed you posted in a thread from two years ago and I do hope some of our members who posted on this thread will see your post and respond to you soon.
I also found another Endometrial Stromal Sarcoma thread which received a more recent reply by dixie62 in January 2014 so it might be a good idea for you to post a response on this thread too. I hope this helps and you manage to connect soon with others who have experience of Endometrial Stromal Sarcoma.
I had a hysterectomy in 1996 and in October 2015 I was diagnosed with ESS. I had surgery in November to remove a total of 5 tumors. Dr said very rare but I was on hormone patches the whole time after my hysterectomy so that provably contributed to the problem.
Hope you have recovered well from your surgery. I had ESS in July 2012 and am currently no evidence of disease. I've only just re-registered on the site and am happy to discuss any of your questions.
Hi I was diagnosed after a full hysterectomy for endrimetriousis so I was shocked. My consultant does not deal with this type of cancer much if at all. I was told there was no treatment for ess and radio and chemo would not work just make the cancer grow...I was told all the cancer was contained in my womb and was lucky as it was at the top of my womb .. It is now 7 months after my operation and still feel terrible I have some good days but get aching pains in my stomach area and in my joints elbows and knees but not all the time when I get it I find it difficult to walk I was first told I had a viral infection but not any more. My bloods seem to come back fine from my gp but with inflammatory markers raised. My gp has now referred me for further investigations as she thinks I may have fibermygela? Not sure if that's the right spelling .. does anyone else have any symptoms like this? and would the cancer show up in the blood tests? as it didn't previously as I thought it was endrimetriousis and my surgery was not done by the cancer team ? Xxxx♡
