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
Hope that you are recovery from the hysterectomy. I had my first in August just removing my uterus, and then they found the cancer, so a second in September removing the rest plus quite a few lymph nodes and tissue (where they also found cancer cells), and then in mid october almost 6 weeks of radiation. How many sessions will you have and is it every weekday?
As regards the actual radiation, it is ok but there are side effects which effect different people in different ways. Ask the doctors about that and later side effects. Sometimes it is difficult to differentiate between the effects of getting over the hysterectomy and the radiation effects.
I found that I should avoid eating an hour or so before, otherwise I would feel very queasy afterwards. Suggest that you fill the freezer now with meals for the days you don't feel like cooking. One thing they emphasised was that you should not lose weight during treatment, so it was like job no. 1 - getting the calories in. Also there is diarrhoea - so if they can give you diet tips aswell.
Actually because you go there and sit in the waiting room you meet the same people (this was the case in Denmark where I llive), and it was actually nice to share each others ailments, thoughts and stories. There was a very positive feeling in that waiting room. It is big hugs when it is someones last time.
Hope it all goes well. It is tiring going there everyday however you will be finished just as Spring comes. Hopefully the weather won't be that bad when you have to go back and forth all the time.
Hope this helps - anymore questions, I will try to help.
Have you been to your first check-up yet? Did they do a gynacological examination - just so I am prepared, or is it only CT?
I rang the hospital about this bloated stomach - they would like to check on it and perhaps refer me on to a physio, as she didn't think a ordinary physio would probably not be able to help. Feel a bit lame complaining - but they were very understanding. Thought about evening classes of yoga, however I am so tired when I get home - so I just make tea for the family then crash out on the sofa.
I haven't quite worked out the Yahoo thing, although I have tried....
I think a desk job, and then sitting in a train/car is probably the worst for recuperation - I can see that in the weekends when I am up and about, it takes longer time for my tummy to be bloated.
I am only having four doses of radiation and the appointments are quite well spaced out. the side effects are bothering me though, and I am wondering quite how soon I will be able to return to work. Our office is about 16 miles a way, and I have a desk job so am I am expecting quite a bit of discomfort to start with so your tips are very helpful.
I had a laporoscopy in December so knew that it was Sarcoma before the hysterectomy, so am quite lucky in that respect i suppose, especially as there is no spread beyond source.
How soon did you have to wait for your first check up? Also, have they put you on any drugs? I have been on tamoxifin for the last four years to treat the breast cancer but have been taken off it as the Doctors believe it could have caused the ESS. One theory is that I should go back on the same drug long term but I am still waiting to hear back about that.
The tips about speaking in the waiting room are really good, as I guess Brachythearpy(?) is given to treat a range of cancers.
I had external radiation and not brachytherapy I read an article that brachytherapy does not give such severe side-effects than external radiation, as it does not damage so many of the healthy cells and is more localised - so I hope this is true for you. But perhaps the the tiredness is similar. Perhaps there are others on this site that have been through this type of radiation therapy. It can't be easy for you having to face this after breast cancer.
I am having my first CT scan in a weeks time and will get the results two weeks after. I am feeling more fit for every week that goes by, and am working more hours each week. It is difficult to assess when you will be able to return to work, I really though I would be back full time in 2013, but I was still extremely tired. Now the tiredness is not so bad, just the bloated tummy that makes me need to lie down. I hink these things just take time. I am not on any drugs at all and I cannot recall them mentioning any.
Apologies for the radio silence. How are you all doing? I've signed up and been more active with the Yahoo (closed) ESS group which is great for discussions and is also private.
Hope everyone is keeping strong and coping with life and their treatments.
Hi Ally and everyone else on the thread. I've had ESS for ten years now. I was diagnosed after a hysterectomy in 2004, they told me I had fibroids so it was a shock to be called back in six weeks after the op to have further surgery and the diagnosis.
Unbelievably in those days the link to oestrogen was not considered and they put me onto HRT. No surprises then that I had a recurrence two years later, in the lung this time. More surgery to remove that nodule, I gave up the HRT and the ESS popped back again, this time in my pelvis. I had chemo and then radiotherapy to the pelvis.
That was back in 2007 and since then the tumours have been shrinking and calcifying, so although they remain, I don't tend to think about them much these days.
Mostly I have shied away from forums and discussions about cancer because I feel that while I don't give it too much thought it will leave me alone but I did see this thread and decided to 'out' myself and let you know there are long term survivors out there x
I am newly diagnosed and yes, I had a hysterectomy (kept the cervix) for fibroids and was given the news of the cancer 10 days later. I am still a bit confused as to where this starts - in the ovaries or the uterus. Anyhow I was told I had it in the uterus, the left ovarry and also on the omendum. The next couple of weeks will see all the lab tests redone and an MRI and CAT scan so guess I will know more. Has anyone else had this spread to anywhere else? I was told today that treatments are surgery (not likely hopefully with me since it is all gone anyway) and chemo but that radiation therapy is not likely.
I lost my Mother, sister and Father to various cancers - lung, throat and stomach respectively but today they said these are environmental and do not relate to what I have. They also said I do not need to worry about my two daughters getting this which is a huge relief.
Any details from anyone else with this would be appreciated.
It certainly is a shock so i know where you are coming from. It was totally out of the blue for me too especially as I have actually been feeling and looking better than for a long time!
Have had the first results from the CT scan which says there are slight signs within the pelvis, i.e. either on the omentum or perhaps on the intestines (waiting for MRI results) but it does not appear to have spread elsewhere. When I had my hysterectomy (removed ovaries, fallopian tubes and uterus) they put in two hormone replacement implants which I now have to have removed so a minor op coming up. As of now they are talking about putting me on hormone blocking medication but that will not be decided until Friday. The thought of going straight back into the menopuase horrifies me but obviously not as much as cancer does. It is all such a roller coaster of emotions. Finding good information is hard so I have decided to wait until I have all my results and know what meds I will be on to narrow down the search field and hopefully save myself some worry. I feel blessed to be under the care of the Royal Marsden in London - the most professional hospital I have ever been to. They truly make you feel that you are in good hands.
