Hi there, so sorry to hear about your Mum's reoccurrence of her endometrial cancer. I, too, have been had a reoccurrence of a low-grade endometrial cancer that I had removed via Total Abdominal Hysterectomy 6 yrs ago. I didn't need any follow up treatment after mine other than regular gynae check ups, so therefore hadn't given any thought of it coming back, especially since I no longer had a uterus! However, here it is! I have a tumour in my groin and lesions in my lungs and I'm being treated conservatively with hormone drugs. Although my specialist has not said as much, it is Stage 4 and incurable. So far the treatment I am on is working in shrinking the tumours, however there's no real timeline as to how this will progress. There is also very limited information or research available re these type of recurring cancers. I can tell you that I have been well throughout all of this, it was only picked up randomly during a routine examination, I am in my 50's and have not been unwell at all. The main problem is that the hormone treatment strips me of all oestrogen in my body so menopause is full on! My diagnosis is metastatic endometrial sarcoma. I hope the treatment options are positive for your Mum and her diagnosis is different to mine. Wishing you both well
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Hi there, I had a Total Abdominal Hysterectomy 6 yrs ago for endometrial cancer, thankfully I didn't need any chemo or radio afterwards, just regular checkups. I guess the best advice I can give pre op is just try to be as fit as you can, but it will take awhile to get back to any sort of regular exercise other than slow walking! I didn't really have any complications post-op other than pain, and opening my bowels which created complications. Mine was done through an abdominal incision, not keyhole. The pain was quite intense for a few days but did subside in due course, definitely don't try to do too much too soon. I had to self administer Clexane injections for about 6 weeks after, that was fun! As my ovaries were also taken I went into instant full-on menopause which was an ordeal in itself. With the type of cancer I had I was able to go onto HRT which was a godsend! However, just be aware that endometrial cancer can return, even if you don't have a uterus! Mine has returned into my lungs and is incurable. The return of the cancer has not been any way linked to the HRT however I would suggest you take the advice of your specialists in regard to this. Hopefully if you need chemo/radio post-surgery this may prevent this happening. I was really not aware that it could return so have been a bit blindsided, make sure you gather as much info as you can! Good luck with it all!
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Hi there, 1st time contributor. I was diagnosed just over 12 mths ago with metastatic endometrial sarcoma which was found in my lungs and groin, following a Total Hysterectomy 6 years ago for a low-grade endometrial tumour, for which I didn't require any follow up treatment. This recent diagnosis came out of the blue and was a total shock as I had thought the hysterectomy had "cured" me. I have been told this cancer is incurable, however it is being managed with medication at this stage. I am on a hormone treatment that strips all oestrogen from my body, so I am unable to continue with HRT which had kept my menopause symptoms at bay after my hysterectomy. I'm fortunate in that my cancer is not causing me any pain or discomfort, and the treatment, at this stage, is easy, however if anyone is on a similar type of treatment I would welcome any advice on how to manage some of the menopausal symptoms. My main issues are with continual hot flushes, and constant vaginal dryness to the point that intercourse is painful and non-existent! I would appreciate if anyone on a similar type of medication has any advice as to how to combat these problems, without using any hormone based remedies. Also, if there is anyone out there who has a similar diagnosis I would be happy to connect with you. As it is classed as one of those "rare" cancers there is not much information to be found online or anywhere, even my Dr's have had trouble finding any real useful information. I'm thankful for this safe space.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.