I am a 61yr old woman..........who in November 2024 after a biopsy was told that my "Histology reported atypical hyperplasia with areas with features of grade 1 endometrioid adenocarcinoma”...to say I was shocked was an understatement.......to say I was shocked was an understatement.
Obviously, I had to tell my family, I think that was harder…because when you tell someone you have cancer, they immediately think a death sentence…. that you do not have long to live…. however, this is far from the truth. Having cancer is not a death sentence, I am not saying it might not be for some, but not all cancers are necessarily going to lead to a shortened life.
So began my week to date of trawling through google, reading as much as possible, both good and not so good! You cannot avoid the negative stories they are plenty, but likewise there are many positive stories of how people have turned their cancer around and continued to lead long, fulfilling lives.
After a further meeeting with a surgeon it was decided that my goal is to have a hysterectomy; however, due to my obesity this would be a higher risk than the cancer cells.
We agreed on a treatment plan, where they would perform a uterus scrape and fit me with a Mirina coil, and keep me regularly checked up every 3 months, and during this time I will lose weight for the hysterectomy.
Roll forward 10 months......my weightloss has been hit and miss........a biopsy in July indicated that I might need another resection etc.....
My 2nd Hysteroscopy + resection + insertion of 2 x Mirena coils took place early September, and the histology report shows the cancer cells have not gone away, they have been held in bay, they are Grade 1 with areas of Grade 2 and after the meeting with the Oncology/Gynae team it was decided that it could be possible to go ahead and perform the hysterectomy.
I would need a CT scan as well to determine nothing has spread.......
I have been trying to process this over the past week and I have been really tearful....hopeful one minute and then feeling like it is the end of the world the next.......I am really struggling to hold it together..........maybe the double progeterone isnt helping, maybe thats making me ultra emotional!
Is this normal? how can I keep it together emotionally......I am a Mum, Grandmother and have a very supportive partner....plus I work!
I would love to hear from others who have and are going through similar......hear their experiences x
Hi Lizzie85
Welcome to the Womb group.
I am sorry to hear that you have had a diagnosis of endometrial cancer.
it sounds like your initial diagnosis of atypical hyperplasia with a grade 1 cancer meant that due to your weight it was safer to treat the cancer with hormones and regular checks initially. This is not unusual and there have been a fair few ladies on here who have had similar treatment to give them the opportunity to try to lose a bit of weight.
Losing weight is not easy, particularly when worrying about cancer, and I hope that they have offered some support.
It sounds like the hormone treatment has worked to some degree in that although the cancer has not gone away- it has been held back.
Because the cancer did not go and there is evidence of some grade 2 cells then it would be normal to have all the information put to the MDT and for them to have a look again at the best possible treatment. A CT scan is the routine next step. What they are doing is getting a provisional stage and grade before the possible hysterectomy.
It is always difficult to process a cancer diagnosis, especially where a treatment has been given and it has not been as successful as they initially hoped. To hear that there may need to be surgery is an anxious time. CT scans also can make you worry. It is very normal to feel ultra emotional and I remember my feelings being all over the place. All I can suggest is to go with the flow a bit and know that you are not alone in feeling like it. I felt better once I had finished the testing and had my treatment plan in place. It helped to know what was going to happen and when.
The hormonal treatment itself can make people feel very emotional.
Talking can help and do give the Support Line a call if it would help to speak to one of the nurses. They are there 8am-8pm daily.
I hope that your CT can be done quickly but in the meantime we are here if you need us.
Jane
