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
How are you keeping? Any news on your second opinion yet or are they still sitting on it? How have to tumours behaved are they starting to shrink now? .
I went to my GP a couple of weeks ago regarding pains in my feet, which I have had for a couple of months. By the time I go to bed my ankles are huge. My GP said that whilst I'm on the progesterone nothing will change and the older I get (55 last wk) I will get various problems. I told her that I'd had my all clear at the hospital the previous week and they told me to carry on as per usual and would not reduce the tablets, so I just have to put up and shut up. She is trying me on diuretics, but that isn't working and now that silly finger trouble is back. I can't even brush my teeth without the brush getting stuck in between the finger. Sorry that sounds really pathetic compared with other peoples problems at the moment.
Thanks for keeping in touch. This is my second attempt at replying, the first time my computer just ate the message.
I am sorry to hear about your swollen ankles and trigger finger, not much fun even when you know that taking the drug is a good thing. I hope your GP can come up with something for relief.
I got my second opinion last month: it was quite straightforward in the end, I think my GP just misunderstood the process. The doctor at Christies was lovely, he said that if I had started treatment there I would be on Letrozole but since the provera seems to be working, I should carry on with that. (my first scan showed that the 3 biggest tumours had each shrunk by 5 mm after only 4 weeks of the drug).
My biggest question was whether they could/would do surgery and he said no - too much risk of serious harm vs very little benefit. I must admit I was quite upset about this at first, but I wanted a clear opinion and I got one. However, if I can get good shrinkage, I will be happy. It helps me to know that you have cancer cells on your bowel but the drug stops them growing. That gives me hope, though my tumours are so,big and that makes it different. (I mean, I wish you didn't have the cancer cells at all, but since you do I am glad to know your story).
My next scan/appointment is October, so just crossing my fingers till then. How often do you have check ups?
I'm glad you got your second opinion, at least you know that you were given the right information and that there wouldn't have been any gain. There seems to be various hormone therapy that they use for ESS but presume they are all progesterone based. I understand what you mean about my cells, but mine are minuscule in comparison to yours. In fact they were so small that is why they couldn't be removed and as far as I know are the same that is if they are still there as there was never a scan done after my reversal op, so they couldn't have been that concerned about them. I don't know if they disappear, hang around or stay the same. My checks ups are annual now. 3 for the first year then 6 monthly for the next two and now annual. I expected it all to stop after 5, but they still wish to keep an eye out, that way they can tell if there is any growth of significance. Better to be safe than sorry.
How are things with you? Have you managed to get more accustomed to your situation now, it's a heck of a shock at first isn't it, I know I was quite numbed by it all and just went along with what everybody wanted me to do and was grateful everybody about me would laugh along with me once they realised that was how I was coping with it all.
Keep in touch and if we can help you with anything just ask.
Thank you for your messages and for your warm welcome to the site. Apologies for not replying to you both sooner.
I'm 6 weeks post op now and everything seems to be going well. I am seeing the consultant tonight for final post op follow up, and then onto regular monitoring visits. In response to your queries, the docs have decided that I should have no follow up treatment at all, so no progesterone prescribed. In terms of follow up it is the usual 5 years - every 3 months in year 1, every 4 months in year 2, every 6 months in year 3, and annually in years 4 & 5. Thereafter my understanding is that it will be my choice if I still want follow ups. Like Ruth, I don't have any children.
Ruth, I'm glad to hear your tumours are shrinking with the Provera, that is great news. I've not looked into the Sarcoma UK group as yet but thanks for the tip.
My parents have come to terms with my diagnosis now, particularly when the post op histology advised the low grading and early staging. Unfortunately they live 100 miles away from me, so they dont see me as often as they would like. They didn't quite believe my telephone assurances that I was OK post op until I finally made it down to see them in person 3 weeks later. We keep each other updated regularly by phone.
The shock is wearing off now, and I am thankful for the early diagnosis. My research on ESS will however continue, as it is always best to know the facts about what you are dealing with.
Hope you are both feeling positive, and I promise to reply more quickly next time!
It is good to come across this site and hear of others in the similar position. I have also been diagnosed with LGESS after a planned hysterectomy just to remove the uterus due to enlarged fibroids in August. They discovered LGESS so then had a full hysterectomy where they discovered local spreading to tissues and a few lymph nodes. So I had radiation therapy. Now getting over the effects of that and waiting for the next CT scan.
I am glad you are finding the site useful. I find it really helpful to share our experiences and knowledge, particularly given the rarity of LGESS.
It's good that your doctors were able to diagnose this during your initial routine operation, thereby catching the condition at an early stage. My own experiences were similar, and although a shock at first, I'm thankful that they did so.
How are you feeling after your hysterectomy and the radiation treatment?
It is helpful to read of other peoples experiences i.e. to read that there can go many years before cancer comes back if at all. And there are different methods to treat it. So the outlook is not that bleak. Doctors are not always willing or have the time to discuss all the details. I cannot complain about the treatment that I have had. However each time I have had an appointment, it has been with a different doctor.
I have now returned to work, part time. I seem to get fairly bloated by the end of the day, so I am glad I can come home early. I went to my local GP and she said I should lie down in the middle of the day - cannot really do that. Sometimes it helps to take a short walk, even though it is brass monkey weather. However it is good to be back on the mend. I have actually thought about trying yoga evening class as I feel so stiff, however still quite tired in the evenings, and it is so dark.
Trying not to think too much about the CT scan, Just enjoying the moment.
How are things with you? Are you totally over the op or does it just take time.
I'm 6 months post op now. Feeling good on the whole and much more energy than in the early days. Back at work full time so tired in the evenings and lower back can be a bit achey at the end of the day (I have a desk job with a train commute at either end). I had some Pilates sessions with the local physio pre Xmas which were good, and I'm trying to get out walking whenever I can for the fresh air and exercise. It's just a case of taking it gradually.
I've recently signed up to the Yahoo group for ESS. The members are predominantly in the US and, like here, are very friendly and full of advice and info on treatment so I'd recommend it.
Hello I am looking to get in contact with anyone that has been diagnosed with endometrial stromal sarcoma. I was diagnosed with stage 3 breast cancer in November 2008 and got diagnosed with ESS in December 2012. I had a full hysterectomy on 8 January and am due to start radiotherapy in early February. Any suggestions on what to ask when discussing ongoing treatment with my consultants would be great as i have found it difficult to find any real source of informaion due to its rarity.
