Hi runnerduck123

I just read your 'about me' entry and I thought it was really interesting. Just to say not everyone reads these personal profiles so it might be worth adding to your discussion thread. Up to you though.

Welcome to Cancer Chat

Jane

Just to add to the enquiry I thought it would be better to given an outline of my situation. 

In May 2000 I had a total hysterectomy due to several abnormal smears. In October 2002 I was diagnosed with Low Grade Endometrial Stromal Sarcoma. The cancer make-up had leaked into my pelvic area before the hysterectomy and unfortunately grew attaching itself to the bowel. After the rugby sized tumour was removed I was treated with Megestrol tablets 4 per day gradually being reduced to 2. I had a few hiccups along the way with the temporary stoma bag and recurring DVT, so as long as I am on the Megestrol I will take Warfarin, which hopefully will keep the DVTs (and the cancer) at bay. I was told it was likely the ESS would return in the future, but 9 years on I am still free and only have to see the Oncologist once a year for a check-up.  My doctors are really impressed with my good fortune, as the future did appear to be a little bleak.  The reason I asked the above question is that whenever I have searched on the Internet, it appears that stories given are from people who have been diagnosed previous to having a hysterectomy. This type of cancer is rare, I have asked my doctors if they have had any other cases with a similar story, but so far none.

I would just like to be able to speak to another person in the same situation and if there is, please would you let me know.  Thanks very much

Hi Runnerduck123

Allie, a new member, has just posted to say she has endometrial stromal sarcoma and wants to make contact with others with the same condition. I've alerted her to your thread. Here is her's.

I hope you are well.

Best wishes

Jane

hi i have the same as you and was diagnosed after a hystorectomy which was in march 2010, i was told that it was aggressive and not much could be done as it had spread to my lungs and neck but nearly two years on im still here and feel ok, its nice to talk to someone with same cancer as it 's rare, im new to this site and to the computer so dont really know what im doing, hope to hear from you soon

Hi Allie

Thank you for replying, it is so nice to finally be in contact with somebody else who has had ESS after a hysterectomy and I don't mean that unkindly, but I have been waiting since 2002.   I am also new to this site, it is a shame that I was not aware of it 10 years ago as I do believe it would have helped me a lot.  I am sorry that you have this and that it has spread and hope that you are keeping in good as spirits as you can. 

When you say it is agressive is that what they call High Grade? I still have cancerous cells on my bowel, but fortunately they have remained dormant and kept at bay by the Megestrol.  The consultant and bowel surgeon did say that it would come back, but 10 years on I am still fine and  as silly as it sounds, found that a sense of humour helped, especially when I had the colostomy bag.

I gave up work for 2 years, went back part time and now am in  full time employment (not by choice I may add, my husband has had to give up  work due to ill health, so somebody has to pay the bills}.  I was 44 when it first appeared and my one wish was to be about when my first grandchild was born, which was granted in December a gorgeous little girl, so I now hope that it stays at bay.

It may not seem like it but now I can talk to somebody in the same position, I'm a bit stumped on what to say and am waffling. I suppose that is due  to being gagged for so long, so if there is anything you would like to ask feel free, can't guarantee I  will know the answer.  The one thing I do know though, laughing at it helped me a lot and many of my friends who did not know how to broach the subject, I put them at their ease and they were able to face it with me. I hope I haven't scared you off with all the waffling and look forward to hearing from you again

Thanks very much for you help Jane

Hi it's so strange as i also was 44 when i was diagnosed thats almost 2 years ago, im so glad to talk to someone with the same cancer as me i was told it was very rare and that not much is really known about it, i have what they call high grade and was only given 6 months but im still here and feel the same now as the day i was told apart from aching joints due to the tablets not the illness, they told me that i have noudules on my lungs in my neck and underarms but when i had my last scan some had shrunk and some had gone 1 stayed the same but none had grown which was great news, they said it was like they had gone to sleep but they could wake up at any time. Im so glad your wish came true i bet it's great being a granny, that was one of the first thoughts i had when they told me "i cant die yet i want to see my first grandchild" and my daughter is only 19 i also have a son of 13 , sorry i didnt reply sooner but im still trying to work this site and only now seen your reply im not sure how it all works but il get there hope to hear from you soon  Allison xx

Hi Allison

I'm also trying to work this site out and haven't got a clue what I'm doing yet, at least you managed to work out the email request.  I don't normally get online 'til late as I work until 8pm, so my weekend starts Saturday evening. You should have seen me the first time I went on Facebook! I always said I would never go on there, but gave in when my son posted some photos of my granddaughter, I can't get the hang of it though.

My sons were 17 and 19 ( the 19 yr old is the proud father, now 29) when I was diagnosed and they took it quite hard.  In fact I had to pussyfoot around with what I said to them and my hubby, the so the person I could really express my concerns to was my Hospice Nurse who was absolutely fantastic.  Eventually I was able to discuss it properly with my hubby without feeling guilty. When I had my last check up I saw a new doctor. He came in smiling saying 'you shouldn't be here', so like an idiot I showed him my appointment card saying it says 2:30pm today, he just looked at me like I was mad and said 'No,I mean you should not be around'.  I didn't quite know how to reply to that.   I know what you mean about not knowing much about it, before my first appointment with him, the Oncologist told me he had gone to the Royal Marsden for a meeting with a professor and that I had been quite a celebrity and talk of the meeting. He asked to see what details they had on it and there was just one paragraph.

Apparently it is very slow growing but quite aggressive when it starts. When I had the  ultra scan before  my first op, the chap said he thought I may have an ovarian cyst, I explained that  I didn't have any ovaries and he asked me if I was sure.  When I went into hospital a week later the Consultant said if he didn't know better he would have said the same. By the time I had my op5 weeks later, it had grown to the size of a rugby ball.  I know I am rabbiting on but it is so nice to get things off my chest after so long.

Linda

(By the way, I'm not into CB call signs or anything it's just that I used to work for a farming magazine and got really attached to Runner Ducks and love Meerkats)

Hi linda

Thanks for replying, it's so strange i was also told that i shouldn't be here infact my consultant said i should at least be in a wheelchair, I really dont feel any different from the day i was told appart from a few aches in my joints and thats the tablets, I take 1 anastrozole 1mg tablet a day which takes the remaining oestrogen out of my body thats what feeds my cancer.

I told my daughter 2 weeks before her 17th birthday it was the hardest thing i've ever had to do, my son who was 11 at the time still doesn't know i just couldn't tell him and im glad in a way, if or should i say when i get worse then i'l sit him down but i just want him to enjoy his childhood without worry.

I dont talk to my family about my cancer you just dont want to upset them so if they ask i say im fine even when im not, I'm lucky i go to a cancer group every thursday at my local hospital and they are brilliant at the moment we are making blankets for children in uganda.

Funny you mention facebook my daughter set me up last weekend (i said id never go on facebook because i was to old for all that!) but im glad i did because thats how i found this site just put in cancer and there it was, as for facebook well it's easier and faster to pick up the phone as all my friends are my family.

I'm waffling (is that a word or did i just make it up) but it is really nice to talk to someone who's going through the same as sometimes it's hard to cope with the fact you have cancer and you have to live with it every day, If there's any questions you want to ask please do hope to talk soon

Allison

Hi Allison

I can understand why you are not telling your son, he is young. In fact there is never a good time to tell youngsters no matter how old they are. My youngest was very quiet about it and one day we were on our own we had a heart to heart, he was able to let me know how he felt and I was able to reassure him as much as possible .  One of the girls at the place I was employed at the time told me that her daughter knew him and that all his friends were looking out for him, which I was very happy about. 

At the beginning there was not a day that went by when I didn't think about it or it didn't come into conversation.Then I realised one day that I hadn't thought about it the previous day, which continued until it became second nature, so for me it got easier, I was lucky, there were girls  I had made friends with in the hospital in a worse position, I feel that I have had 10 bonus years and am extremely thankful for that.