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Endometrial stromal sarcoma

20 Mar 2015 10:21

Hi

I was diagnosed with ESS in November, after arriving at hospital with a blood clot and kidney problems. After scans,  tests etc I was eventually diagnosed 6 weeks later.  I had a hysterectomy 8 years ago at which time I had ESS but it was missed and now I have a tumour around my ovary (which where not removed during my hysterectomy) cancer in my omentum and some nodules on my diaphram. My tumour is inoperable and I am currently taking Megastrol, but wonder if this is the same for everyone. 

It seems to me to be a very lonely place as I know no one with ESS. I am interested in how different people are being treated, how they cope day to day, and their experiences. here's hoping!!

I am a married mum of 4 teenage boy, who's feeling very isolated.

Nic x

Endometrial stromal sarcoma

20 Mar 2015 20:30 in response to Nicola47

Hi Nicola

We have a long running thread on ESS here.

The last person posted in November so if you post on this thread I'm hoping you will get a response.

Welcome to Cancer Chat!

Jane

 

Endometrial stromal sarcoma

24 Mar 2015 20:07 in response to Nicola47

Hi Nic,

My tumour was on my pelvis and I had it removed 2 years ago .... I have low grade  ESS. Just like you I have not heard of anyone with ES Sarcoma. I have a few side affects from the medication and from the radiotherapy but manage and have Reiki and accupuncture every week which helps for me.  I don't feel that I get a lot of support as I don't have any groups around where I live and attend Christies in Manchester which is over 50 miles from where I live. Stay strong and let me know how things are going. I don't have a nurse or McMillan that I can contact if i need support so just have to manage.  Take care Wx

 

Endometrial stromal sarcoma

24 Mar 2015 21:24 in response to Woo

Hi sweetie

There is someone else out there! I know how hard it is when there is no one who understands or has even heard of our cancer, my oncologist is taking advice from a large hospital near by to where I live but I would really like to see someone who specialises in sarcoma's. I have been invited to join an ovarian cancer group by the oncologist but I would really like to meet other ESS patients, I know she mean's well!

I have had a few side effects with the medication such as weakness in my arm's and legs and an incredible appetite, so I am gaining some weight. I'm glad to hear that the 'alternative therapies' help, there is an holistic centre at my hospital which I will research now.

Take care and keep in touch Woo xx

 

Endometrial stromal sarcoma

24 Mar 2015 21:24 in response to Moderator Jane

Thanks Jane for your reply I will follow the link x

Endometrial stromal sarcoma

30 Mar 2015 23:16 in response to Nicola47

Hi Nic, please let me know how you get on with your alternative therapies. I do reiki myself and would have given you a therapy to see if you enjoyed it and had benefits If you lived  near. 

Are you on any medication? I am on Anastrozole which does cause hot sweats and bone ache for me Grrrr! Take care and keep in touch, Woo x 

 

Endometrial stromal sarcoma

31 Mar 2015 14:48 in response to Woo

Hi Woo

Hope you are keeping well? I take a hormone treatment called Megace (Megatrol),which also causes hot sweats and I do  have a lot of aches and pains in my bones and joints however it's worse so under my arm's, which the oncologist has never seen before! I am also constantly hungry which isn't helping the waistline! Are you hungry too?

I am off for my 3 monthly CT scan next week and then the nerves kick inuntil the results on  20th April, I will take the opportunity to ask the oncologist what treatments are available at the holistic centre.

Take care of yourself xxx

 

Endometrial stromal sarcoma

31 Mar 2015 21:22 in response to Nicola47

Hello again Nic,

I certainly have gained weight with Anastrozole, it is so difficult to lose the weight too! It is a rare cancer and like you say nobody has ever heard of it which does make it difficult at times as Dr's don't seem to know what is best for us! 

Which area do you live and what hospital do you visit? I am presuming they do not have a Sarcoma unit! 

Good luck with your CT scan, I am sure you will be fine, positive thinking all the way!

Take care and catch up soon, Wx 

 

Endometrial stromal sarcoma

7 Apr 2015 20:12 in response to Woo

Hi Woo

Hope you've had a great Easter, getting very nervous about the scan on Thursday, but as you said positivity all the way, getting more and more joint pains so this will be something I will be bringing up when I see the oncologist!!

No my hospital does not have a sarcoma unit, but they do take advice from one............hmmm doesn't give me much confidence really??? My oncologist has never treated ESS before.  Especially when I was told I would need chemo on initial diagnoses then I was handed a small box of pills. 

Feels really odd putting all your faith in someone as new to this as I am?

How often do you have to have scans??

Take care  yourself sweetie x

 

 

 

 

 

Endometrial stromal sarcoma

7 Apr 2015 21:14 in response to Nicola47

 

Hope you have had a good Easter too!

I have scans every 12 months unless I have any symptoms ........ I did have my scan early again this time as I had a few symptoms but pleased to say my scan was good. 

I have chest x-Rays every 12 weeks as this can go to the lungs pretty quick Grrrr! 

My oncologist does specialise in Sarcoma which is good although it seems that never 2 are the same  ......... Like you say it is a difficult one x 

All I can say is you will be fine, good luck on Thursday .... You will be fine, take care and keep me updated on your progress, love Wx 

 

Endometrial stromal sarcoma

30 Apr 2015 17:37 in response to Woo

Hi Woo

Hope you're keeping well and looking forward to the bank holiday weekend!!

I've just been in hospital to have my kidney stents changed for the first time this week, as my tumour presses on my bladder and stops my kidneys from working, it was much better than  thought it would be.

Got my scan results back, everything is static at the moment, however my oncologist confirmed that the nodules on my diaphragm are secondary lung cancer so that was a bit of a shock, somehow it all feels very real at the moment! Onwards and upwards I suppose.

Hope your ok sweetie

Love Nic xx

 

 

 

 

 

 

Endometrial stromal sarcoma

9 Jun 2015 14:03 in response to Nicola47

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

 

Endometrial stromal sarcoma

9 Jun 2015 16:21 in response to 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

Endometrial stromal sarcoma

10 Jun 2015 09:18 in response to RosemaryB

Hi Rosemary

Great to hear from you and I can't thank you enough for your shared experiences and general knowledge, which couldn't have come at a better time for me as tomorrow I am going to Freeman's hospital at Newcastle for a second opinion, having had lung cancer confirmed at my last scan (now staged at 4b) I need to know that my current treatment is appropriate to put my mind at rest.

I was struggling for the right questions to ask but now I have a list.

I will certainly look to join the Yahoo group as I would love some support from ladies who understand. I was told I could join an ovarian cancer support group!!!

You give me hope and confidence for a life beyond diagnosis, in October last year I doubted that I would see my middle boy all dressed up for his school prom and now that is just 2 weeks away. 

Thanks for taking the time to reply Nicola x

Endometrial stromal sarcoma

1 Nov 2015 15:49 in response to Nicola47

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