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

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

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

Thanks Jane for your reply I will follow the link x

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 

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

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 

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

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 

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