Hi
2 weeks ago I was told I had endometrial cancer - MRI & CT showed it is at Stage1A on the MDT report but my consultant said Stage 1B.
I saw the surgeon yesterday and was also told it’s an aggressive cancer - High Grade (3) this was on the biopsy report so I need total hysterectomy & removal of lymph nodes too as high grade can spread. I was expecting to be given my op date there and then but the surgeon said she’s so busy but it should be within 4 weeks! My husband asked the question “well if it’s aggressive type of cancer will it nit spread within 4weeks” to which she replied “no” and to go home and forget about it all and I should get a letter soon with the date! Nerves are in tatters obviously - just thought I would put my experience out there incase anyone else has similiar
Hello P.Pitstop,
Welcome to the Online Community. I hope that you will find it as supportive and informative as I have done. Just reading through the experiences of others on the same journey helped me. A diagnosis is such a worrying time and the waiting around just makes things feel worse.
I was also stage 1b and a grade 3. There are different types of grade 3 and the aggressiveness just means that they are ones that tend to spread rather than lower grade ones that tend to stay where they are. That is what my doctor said to me before my hysterectomy. After the hysterectomy they look at the pathology and confirm stages and grades and then they make the decisions regarding what follow up treatment, if any is recommended.
I can understand you feeling concerned with the surgeon saying the surgery will be within 4 weeks. As soon as I had my diagnosis I just wanted it all out. In the end my surgery was exactly 4 weeks from my first symptoms. I first saw the oncologist on a Friday and I was in for surgery on the following Monday. My oncologist was very understanding and that helped. I know that they experience these things all the time but to be told to go home and forget it- I can understand how your nerves are in tatters. It may well be that they get you in much quicker and maybe you could ask to be put on a cancellation list- if they have one?
I will pop a few links on here in the meantime in the hope that they may be of help.
Womb cancer | Macmillan Cancer Support- this one has some general information that I found helpful, it tells you a bit about stages and grades and treatments.
Just been diagnosed? | Macmillan Cancer Support
Hysterectomy for womb cancer | Macmillan Cancer Support- this is a bit of information about the surgery.
I hope that this helps but please do reach out on here as there are many lovely ladies on here who have been where you are now.
Take Care
Jane
It's fine to ask.
If you click on my name you can see the treatments I had.
It was a laparoscopic hysterectomy plus BSO. That basically means womb, cervix, fallopian tubes and ovaries. Personally I didn't find it too painful. Had a general anaesthetic and spinal. When I woke up my pain was well managed. I was back in the ward early evening. My throat felt a bit sore and my skin on my face felt a bit irritated (from the mask) Around 9 that night I was given diclofenac. I was stood up shortly afterwards. Catheter was removed in the early hours and then walked to the toilet. 5am I was wide awake an able to walk up and down the ward, just a bit slower than usual. I went home at lunchtime. I didn't need anything stronger than the odd paracetamol or ibuprofen, although I could have asked for stronger if needed. I had a couple of very easy days and then started moving a bit more. Just had to take things steady. No lifting, hoovering and lots of rest. By 7 days I was able to walk to local shop with my son. I did feel a bit of tenderness if I moved too quickly or overdid it but didn't need anything for it.
Most of my discomfort came from the bruising from anticoagulant injections that I had to give myself for 30 days into my tummy. The tiny cuts were slightly itchy until the glue dissolved.
After the operation I had to wait around 3 weeks to get my pathology results back. The pathology will confirm what if anything needs to follow. They will also confirm the 1b and grade 3. Grade 3 can be different types. Before the operation the oncologist looked at the scans and said I was likely stage 1-2. He didn't mention grade. He said chemo was unlikely and perhaps some radiotherapy.
I have noticed that different hospitals favour different treatment and it will depend on your personal medical history and what the pathology results are before they recommend treatment. My treatment was adjuvant treatment which means the aim is to try to prevent any recurrence.
I had 4 cycles of paclitaxol/carboplatin chemotherapy.( May-Aug 2022) I then had about 3 weeks to recover and I then had 25 sessions of external beam radiotherapy. There is a type of internal radiotherapy called brachytherapy that some ladies have but I was told I did not need it as there was no cancer in my cervix.
The treatments were not easy but they were doable and I would do them again.
I think that it is good to be a little prepared and think about the different treatment possibilities but until the pathology comes back after your hysterectomy its hard for anyone to be able to tell you about further treatment.
1 year on, I am fairly well. No problems left from the operation. Am just recovering from the treatments. I have checkups every 12 weeks and will do so until Nov24.
Anything else, just ask
Jane
