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.

Hi Corinne,
Thank you for sharing your experience. I applaud you for turning your body into a temple and for working out daily!! Your experience as a young woman certainly makes this disease & treatment more challenging for you than for me, but we share the fear of recurrence and all of the unknowns (even to our oncologists) about this aggressive cancer. And I don’t know if having or not having Lynch syndrome makes a difference in any way.
I wish you well and will continue to read posts for updates. It is good to have “sisters” who understand and support each other.

Hi corinne1985. I'm 15 years your senior and I was diagnosed with mixed uterine clear cell and serous cancer 3A diagnosed 6/2024. I have exactly the same thoughts you have and I'm doing all the life style things you are doing. In addition to that I'm working with a holistic doctor. I also have Crohn's disease and it went undiagnosed for probably 15 years. Once it's was identified I want on an immune suppressing drugs to control the inflammation and gut damage. I think that created a perfect storm. My goal is to get my immune system to work properly without immune suppressing drugs. I can't figure that out on my own. That why I'm working with the holistic doctor. So I'm mixing both medical and complementary therapies hoping my body will be able clear cancer cells as it should.

I write to help with anxiety. If you go to my profile you will see my writing and how I've been processing my situation.

@corinne1985 I agree with @beebe. It's good that you are doing both radiation therapy and chemotherapy.

Are you located in the U.S. or Canada? I am asking you this because scans seem to be the standard in North America. You wrote: " 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 🙁 " I find this comment puzzling. From what I have experienced myself and read from others we have periodic CT scans to detect signs of cancer at the original place and in other places in the body. For instance, I had CT scans with contrast for pelvis, abdomen and lungs because this is where it is most likely other cancers or metastasis would be seen.

I completely understand your anxiety and fear too. All that you went through is traumatic. Of course you feel anxious and frightened. I still feel that at times although I have been NED (no evidence of disease) since 2022. Every new pain I have I wonder if it's cancer. I cannot seem to get away from that.

What is your next step? Are you still in chemotherapy?

@ffr I wonder about that too. Anyone else worry about whether or not new aches or pains could be cancer?

Sadly i think those thoughts are with us for life! I didnt have any pain before now i do and thats what rattles me as Dr Sangah said any Pain let us know .... but how do i work out what is "pain" from "pain" i have had a huge surgery and i am very active again with parts missing sent into Menopause without any warning , how do i differentiate what "is" what from the "other" .... then i get myself into a tizz-woz thinking i am done for! Just a horrible thought and why us?
Its the mental damage too not just the Cancer or the Operations , i feel like i have had my brain removed too! I have a very demanding career i am back at work and currently working now but dropped on as i seen an email saying i had a response. I now sit at my desk and completly forget what i am doing! I have a family too my daughters 16 and Son 10 , they will need to be tested for this gene too , i sit and wonder if i have gave them the "penalty" now too! This came from my Grandfather , he died at 35 but the research wasnt around then and my mum was 1 years old, so i never knew him. Then my Mum 16 years ago had Uterine Cancer , removed and Mum is still here and turns 70 in June , then it was my turn , im 40 and mine was Clear Cell .... i want to and WILL get to 70 , im going to keep at my fitness and diet and just have to embrace the pain in the process as i want to see my family grow up and retire with my Partner and have a nice life. I wish you all the best , may i ask how long you have been clear? x