Hi,
This post has taken me multiple attempts to write.
Following an appointment with my GP for some abdominal pain in late November I found myself on a rollercoaster that I was not anticipating.
The GP asked me about my periods and as soon as I said that I had been bleeding for a few months having not had any for 2 years alarm bells were ringing.
A few days later another GP visit resulted in a 2 week wait referral. As a ward manager of a paediatric oncology unit I knew instantly what this meant 
.
3 days later I was having an ultrasound which showed thickened womb lining. Fast forward 2 weeks and I had a hysteroscopy which is one of the most painful things I have ever had, it was during this procedure that the consultant told me that she was very certain that it was cancer.
2 weeks later I was called to attend the hospital that day and the diagnosis was confirmed. In the following 2 days I had MRI and CT scans and then it was a waiting game with Christmas and New Year to contend with before my appointment with the Oncology team.
The day after New Year I saw the oncology surgeon and was informed that I had stage 1b disease as there was no spread - phew I thought, but then the bombshell that my disease is high grade with a mutant P53 gene!!
5 days later I am attending hospital to have a total hysterectomy with bilateral ovary removal.
That was 5 days ago now and I am trying to come to terms with what has happened. I just feel tired and emotional all of the time and have to now wait for 4 weeks to see whether I need to have any further treatment.
I can’t stop thinking about the genetic mutation and what this might mean for the future.
If anyone else has any experience of being told that they have this genetic mutation I would love to hear what this has meant for you.
Sorry for such a long post!!
Sharon
Hi Sharon
Welcome to the group.
I am sorry to hear of your diagnosis of high grade endometrial cancer.
It sounds promising that you have a provisional stage 1b.
My own cancer was stage 1b and a grade 3- mine was carcinoma sarcoma- but yours may well be another grade 3. There are several ladies on here who are being treated for grade 3 cancers.
I did not have the p53 mutation. There have been other ladies on here who have had the p53 mutation and also other genetic mutations.
From personal experience and through being on here- most grade 3 cancers will be offered some form of follow up treatment- even at stage 1 but it will be the post op results that influence what is offered.
I had surgery first. This was then followed by chemo and then 5 weeks of radiotherapy.
When discussing my post op results it was explained to me that because grade 3 cancers tend to behave more aggressively, then any adjuvant treatment tends to be offered at an earlier stage. I was advised that both chemo and radiotherapy were needed. I did not have brachytherapy myself as I was told that no cancer cells were found in my cervix. I did ask about the genetic markers/info in my results ( MMR, p53, ER/PR positive etc)and was told that they would not change my first line treatment but they could be helpful in determining the most effective treatments if there was a recurrence.
Jane
