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.
HI, I was diagnosed with metastatic U
terine Leoimysarcoma and have been told that my cancer is incurable as well. I have had 3 tumours removed surgically from my lungs and abdomen and have been placed on what I can tell similar medication to remove all oestrogen from your body by stopping its production. I am on letrozole which is a form of aromotise inhibitors I think they call them. Yes the symptoms you are experiencing are some of the common one. I have gotten these symptoms and much more. I have really noticed the changes in my body without the oestrogen and other symptoms are starting to occur. Stay on top of this and through my reading, you can ask about the brand given to you or other types which may not cause these symptoms in such severity.
I hope all gos sell for you....
I Also found contacting the rare cancer website of Australia quite helpful with people you can speak to for further referral. I asked one of my doctors do I have cancer and they looked at me and Said "well" so yes make sure you do your own research and be informed. Also make sure you keep asking for regular scans. My oncologist didn't want to so I went elsewhere and pushed for scans to put my mind at ease. Unfortunately, I have a rare for of cancer as well and have been told reoccurrence in 2 years, especially as it has already spread.
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