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Oestrogen and endometrial stromal sarcoma

444
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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

  • Offline

    Hello,

    I've just been diagnosed with womb cancer.I haven't been told which type yet and I'm waiting for a hysterectomy that they said would be done by keyhole surgery.I hope I don't have to wait long.I have read some oily fish produce more oestrogen but I think it's more important to try and have a balanced diet.I have been reading that alcohol though has a bad effect on oestrogen,multiplying it.This is only what I have read on the web though.Hope you're ok and keep strong x

     

  • Hello 444 and thanks for posting, 

    I am sorry to learn about your situtaion and can understand you wanting to look into ways of staying well. 

    The general advice after cancer treatment is to follow a healthy lifestyle which includes eating a varied and well balanced diet, maintaining a healthy weight for your height and taking regular exercise. In terms of preventing a recurrence, the benefits aren't well established from a research angle but this can vary a bit depending on the type of cancer, the thinking is that this sort of lifestyle advice is unlikely to cause harm and can reduce the risks of other things like heart disease that can kill us and even the development of a second primary cancer. So it is sensible and exercise can also improve well being.

    You are right in saying that a lot of research about this has been done in breast cancer - I haven't been able to find any specifically looking at  sarcoma - but the American Cancer Society explains what is know about lifestyle and breast cancer which can also be hormone sensitive.  They also have some general Q&As here. 

    When you get the chance, do talk this over with your specialist, but I think their advice is likely to be just to eat well rather than avoid or include any specific food types.  The NHS has an Eat Well website which might be worth looking at. 

    If you want to have a chat please do give us a call on Freephone 0808 800 4040. We are here weekdays 9-5. 

    Best wishes,

    Julia

  • Offline in reply to Flores

    Hi Thanks for your reply, how are you doing ? Any news on your surgery yet? How are you feeling? 
    Take care x

     

  • Offline in reply to 444

    Hi,I'm due to have my surgery on the 7th September.They will grade the cancer then.It can't come soon enough.I've never had an operation before or GA.The nurse said I was very healthy with perfect BMI (!!) but I thought 'yes but I have cancer !!! 

  • Offline in reply to Flores

    Hi

    I had my hysterectomy 4 weeks ago, so know exactly how you feel. It's like your life has stopped and everyone else is carrying on. I found I hadn't really prepared myself for how I would feel physically or emotionally after the surgery as I focused on the I've got cancer and need to have surgery and found it hard to get past that. Four weeks on I'm on holiday with my family, nearly back to normal ( I've declined the mountain biking and difficult walks for moderate ones ! ). It is a frightening time , you are allowed to feel like this as my CNS said to me she would be more worried if I didn't feel this way before and after the surgery. I haven't had my staging yet, I get it on the 2nd, so I am distracting myself as much as possible, but have to admit the odd panic sets in. 
    Good luck on the 7th and if you want to chat or ask anything before or after feel free. Xx

  • Offline in reply to 444

    Hi, thanks so much for your advice.Did you have keyhole surgery? Your recovery sounds really good.I hope you have good news soon.I think the GA makes you feel low and emotional too.I appreciate you telling me what I can expect.

  • Offline in reply to Flores

    Hi yes I had robotic assisted surgery. My bladder was stuck to my womb so it took a fair bit longer and was more painful than normal also my womb was very bulky so I was again a bit more sore , but this all healed with time. This did mean I was in pain for a few days which is not normally the case with keyhole surgery. Another lady who was 20 years older than me had the same but no complications and she didn't even need paracetamol and said she didn't have any pain at all, so hopefully you'll be fine. I was very tearful from when I woke up for a couple of weeks, I think some of this was the GA and some the cancer diagnosis and I think this is quite normal. Make sure you've got someone to help you out a bit as you can't lift for a while which gets frustrating as you feel better ! The wind pain from the surgery can be quite bad I used peppermint tea and wind cheaters which seemed to help !  Take care xx

  • Offline in reply to 444

    Thank you so much for your advice.I really appreciate it.I'm stocking up on organic green tea but maybe I'll get the peppermint tea and the wind cheaters too ! I hope all goes well for you on the 2nd.I might be in touch again if that is ok ? Thanks 

  • Offline in reply to 444

    Hi, How are you feeling ? How did your staging go ?Hope you are feeling better.My operation is tomorrow x

  • Offline in reply to Flores

    Hi 

    i was thinking of you this morning and was going to post you and wish you good luck for tomorrow.

    my staging was 1b so no further treatment but it was a sarcoma so there is a higher chance of it recurring so I need to keep an eye. 
     

    I hope tomorrow goes well for you, and you recover quickly and well. Let me know how you get on, I'll be thinking of you. Xx

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