Post-treatment follow up for clear cell endometrial cancer

Hi - I have just read your post! Its bitter sweet, i too had stage 3 clear-cell , the words "Aggressive" made me feel already dead! We had a very rare cancer , mine was on the wall at the top of my cervix/womb , im reviewed every 3 months , i had a full Radical-hysterectomy in October 2024 , i am now 7 months in and praying daily its gone for good! I was told if i didnt have it done (as i asked my life expectancy) my Surgeon said 3-9 months, my world shattered! I had it done , recovered and started 5 weeks of intense Radio and 5 days a week and every Monday i had the Chemo, 5 sessions completed of "Platinum therapy" - i asked my oncologist "when will i have a scan again" she said "Corinne there is nothing to scan, Mr Kumar removed it" we will keep a close eye on you now as we dont know how this type acts 🙁 ..... well , shit is all i think daily but it does go away! I have really changed my diet and i go the gym 5 days a week for an hour each morning , now i am also flat out in Surgical Menopause , i turned 40 March just gone and i am doing all i can to make this body a temple, however , i dont know how to determine a "pain" as i get which isnt possible, like period cramps but i am doing a lot of sit ups and crunchs etc to make my abdomen strong once again! It hurts throughout the day and goes off towards the evening. Totally gone in the morning until i go again! I hate living in this "what if , whats that , could it be , whats ok and normal" thoughts and feeling everyday now. How are you getting on? I see your 2+ years thats flaming fantastic and bring me a happy sense , so thank you for putting that! I am only 7 months in and i want to see my family grow up. I have this due to a genetic gene called " Lynch Syndrome" they have never seen clear-cell on the area it was at! My Mum is convinced it did its job to that area and it has been taken away and i pray daily its gone for good! My Mum had Womb Cancer too due to the hereditary Gene , Mum was lucky stage 1 got it and it was taken out again with a fully Hysterectomy! Mine i had 38 Lymph-Nodes removed and what i am gratful for is that it was in the Two just next to the Cancer, the remaining 36 all tested clear so i take that as a positive every time i think about it that it hasnt actually spread into any others. Dealing with the hormonal change and the dark cloud that lingers is so shit , my knees, shins , ankles and feet hurt now 🙁 i was so active before and i am pushing to still be that way! But it comes with aches and pains now and that gets me down! I am back again in June with me Oncologist for my second catch up! Last one Dr Sangah said all is looking good and i have bounced back fabulously! She told me , any pain during intercourse , any unusual pain, any bleeding, or rapid weigh-loss , oh and if i cant shift a cold to call them straight away! So thats my life now .... i go the toilet and dread wiping! I was misdiagnosed too and currently in the middle of Suing my Practice as they have admitted failure to act on my symptoms and my Gene and it got to stage 3 advanced and aggressive! Its horrid to live with, i sit here now writing this and re-living it however when you see someone with the same type its somewhat of a comfort! I hope you are doing well! x God Bless us and fellow Sufferers (Amen)

Hi - I have just read your post! Its bitter sweet, i too had stage 3 clear-cell , the words "Aggressive" made me feel already dead! We had a very rare cancer , mine was on the wall at the top of my cervix/womb , im reviewed every 3 months , i had a full Radical-hysterectomy in October 2024 , i am now 7 months in and praying daily its gone for good! I was told if i didnt have it done (as i asked my life expectancy) my Surgeon said 3-9 months, my world shattered! I had it done , recovered and started 5 weeks of intense Radio and 5 days a week and every Monday i had the Chemo, 5 sessions completed of "Platinum therapy" - i asked my oncologist "when will i have a scan again" she said "Corinne there is nothing to scan, Mr Kumar removed it" we will keep a close eye on you now as we dont know how this type acts 🙁 ..... well , shit is all i think daily but it does go away! I have really changed my diet and i go the gym 5 days a week for an hour each morning , now i am also flat out in Surgical Menopause , i turned 40 March just gone and i am doing all i can to make this body a temple, however , i dont know how to determine a "pain" as i get which isnt possible, like period cramps but i am doing a lot of sit ups and crunchs etc to make my abdomen strong once again! It hurts throughout the day and goes off towards the evening. Totally gone in the morning until i go again! I hate living in this "what if , whats that , could it be , whats ok and normal" thoughts and feeling everyday now. How are you getting on? I see your 2+ years thats flaming fantastic and bring me a happy sense , so thank you for putting that! I am only 7 months in and i want to see my family grow up. I have this due to a genetic gene called " Lynch Syndrome" they have never seen clear-cell on the area it was at! My Mum is convinced it did its job to that area and it has been taken away and i pray daily its gone for good! My Mum had Womb Cancer too due to the hereditary Gene , Mum was lucky stage 1 got it and it was taken out again with a fully Hysterectomy! Mine i had 38 Lymph-Nodes removed and what i am gratful for is that it was in the Two just next to the Cancer, the remaining 36 all tested clear so i take that as a positive every time i think about it that it hasnt actually spread into any others. Dealing with the hormonal change and the dark cloud that lingers is so shit , my knees, shins , ankles and feet hurt now 🙁 i was so active before and i am pushing to still be that way! But it comes with aches and pains now and that gets me down! I am back again in June with me Oncologist for my second catch up! Last one Dr Sangah said all is looking good and i have bounced back fabulously! She told me , any pain during intercourse , any unusual pain, any bleeding, or rapid weigh-loss , oh and if i cant shift a cold to call them straight away! So thats my life now .... i go the toilet and dread wiping! I was misdiagnosed too and currently in the middle of Suing my Practice as they have admitted failure to act on my symptoms and my Gene and it got to stage 3 advanced and aggressive! Its horrid to live with, i sit here now writing this and re-living it however when you see someone with the same type its somewhat of a comfort! I hope you are doing well! x God Bless us and fellow Sufferers (Amen)

Corrine,
It would seem to me a CT scan would be done at intervals to check for spread. Yes, your uterus and assorted parts are gone but reoccurrence can occur in the vaginal cuff and cancer could have spread out of the uterus via lymph nodes or even through the fallopian tubes during surgery. It is good you were able to do both radiation and chemo as the combo is synergistic giving better results.