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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 in reply to 444

    Hi Claire,Hope you are ok ?I've had 2 Brachytherapy now and my last one is this Monday.The actual treatment is not bad at all.It's just all so undignified!!I have not had a problem with my bladder or bowel at all.I do feel a bit tired about 2 days later but not much.It's nowhere near as bad as I imagined.My follow up is in January.I remember you said you could not have treatment, is this still the case? Are you going to get regular scans ? Hope you are feeling better.

    Amanda x

  • Offline in reply to Flores

    Hi Amanda

    Glad the brachytherapy is going ok, yes, so many undignified processes aren't there . I've just found out I've got to have scans every 4 months for 2 years then every 6 months for 10 years ! Not much time to stop thinking about it, but I know it is better to have regular checks and detect anything early as the main treatment is surgery as from what I understand this type of sarcoma doesn't really respond to chemo or radiotherapy.

    Im hoping your last dose of brachytherapy goes well and you remain side effect free and then that's the end of it and that you and your family can have a really good Christmas together xx

  • Offline in reply to 444

    Hi Claire,

    Thanks.I'm glad you're having all those regular scans.It looks like they are really taking care of you.It's a pity there is no treatment you can have to help stop it returning.Having the regular scans at least will keep on top of it.

    I had my last Brachytherapy.I haven't had any side effects.Maybe only been to toilet a little more but nothing else thankfully.

    I have a follow up next year and I hope I will be offered some scans hopefully after 6 months but I've no idea what the plan will be.

    I hope you have a lovely Christmas with your family too.

    Best wishes Amanda xx

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