Oestrogen and endometrial stromal sarcoma

Hello

i have low grade endometrial stromal sarcoma and have read most of these are oestrogen receptive cancers. I'm still waiting for staging after my hysterectomy, but am becoming increasingly anxious the more I read about it or peoples journeys with it. I have read that diet can affect the growth and spread of the diet  ( I am not sure if this is researched fact or opinion), I see there is advice for breast cancers, but know ESS is rare. I've looked into oestrogen rich foods and see this covers a huge amount of both healthy and unhealthy foods and I am feeling panicked and confused about what I should be doing. I'm 52 with a teenage son so I need to keep as well as I can but not spend my whole life anxious about recurrence ( which I know is a high risk with this type of cancer) . I would be very grateful for any advice.

Thank you x

  • Hi, I'm glad it's good news for you.I haven't been told anymore other than I have endometrial cancer.I suppose I will find out more after the op.I hope you can focus on your life now and make sure you have enough follow ups to keep your mind at rest.Take care x

  • Thanks, how are you feeling? X

  • I'm feeling ok, I just want the op done now.

  • I felt the same, this time in 2 days you will hopefully be home and on the road of recovery , I'll be thinking of you and am here if you ever want to chat xx

  • Hi, I'm at home recovering now.I was in for one night.The day of my op I received a letter saying my staging was 1b but now they will stage it again in what they have removed.I also had a 'washing' of the abdomen done.Did you have that ? I hope that comes back ok.My scars are healing nicely.Hope you are feeling better ? 

  • Hi Flores 

    Good to hear from you, I've been thinking about you. How are you feeling ? I hope your recovery is going well. Yes I had washings, I think that may be fairly standard just to check for any cells outside the womb. Did you see your surgeon after your op and if so did he say how it went , what they saw?
    im doing really well now thanks my main problems are from now going through the surgical menopause, lots of hot flushes and night sweats! 
    I hope you're recovery goes smoothly, remember it's a big operation and the wait to find out final staging is hard. Be kind to yourself , take care and keep in touch xxx

  • Hi, thank you.Sorry to hear you have all the hot flushes to bear with.That's another problem to deal with.The surgeon just said it was a success but I forgot to ask about the lymph nodes and wether they removed any.I have just spoken to the Cancer nurse  who kindly phoned to see how I was and I have mentioned this to her.I don't know if my results will be by letter or an appointment.As you say, the wait now for more results is hard but I think it will be 2/3 weeks.Thank you xxx

     

  • Hi, How are you now ? It's been 3 weeks since my operation and still no final staging.I received an appointment for the 5th November but then today had a phone call to rearrange it for this Friday as the consultant wants to 'refer me on '.Now I am very worried it is bad news.I hate the fact that there is no communication and every time I go I see someone different.Did you experience this ? Hope you are ok ?

  • Hi Flores

    im doing well now thanks. How are you recovering after your surgery? I know this bit of waiting for staging and any further treatment is worrying, it's a bit like great I've had the surgery but what now isn't it ? I waited 5 weeks to get my staging. I have a sarcoma that doesn't really respond to chemo, so that wasn't going to be an option and they only use radiotherapy if it's more advanced than mine. 
    Is your consultant a gynae oncologist or a gynaecologist? Do you have a gynae CNS you can phone to see what is going on? If so you could give her a ring and ask her if this is normal procedure and should you be worried, she might not be able to tell you results, but I found it useful speaking to mine when I was a bit worried about certain things and this is part of their job so they really don't mind you calling. 
    I saw the same gynae oncologist consultant each time either with or without the CNS, so he would have planned any further treatment for me if needed. 
    it must have been very scary getting a call bringing things forward and saying refer on,and not know who to?  why not call the CNS today and maybe if you want to know then ask her directly what this means, I know on other sites many women have had radiotherapy or chemo and this has cured them, or it's been done as a precaution to reduce the risk of it coming back . I do feel for you and hope things are ok. Let me know what you decide to do and how you get on. Claire xx