Just Diagnosed

Hello Nit.Thu57

Am sorry that you have been diagnosed with endometrial cancer and I understand what a worrying time it is and that you have lots of questions that need answering. 

I remember when I got my results, it's a scary time but now that you know what you are dealing with hopefully you will be able to have a plan for treatment and will soon know the next steps.

We are not medically trained on here and can only give advice on our own experiences but I do recognise some of the terminology in your report. What I would say is that there is an awful lot of information there but after the surgery they will confirm stage and grade and anything else that is important. From what I recognise on there, the important bit is the high grade bit. I was also high grade. The type of high grade for me was confirmed in the post op pathology and that is what will help the oncologists recommend if you need any further treatment or if the surgery alone is enough. They should then also be able to confirm the stage. From my experience it's the stages and grades that are important and I left the doctors to understand all the other bits and bobs.

If your path follows mine, I had a CT scan and then was called in to see my oncologist to discuss the surgery. My pre op check ups followed that appointment and a few days later I had my operation. During the appointment you will have lots of opportunities to discuss your results and what happens next. I also had a nurse in with me who afterwards took me to a separate room and gave me some macmillan leaflets and a chance to ask questions.

Please do ask if there is anything that you need, we are here to support.

In the mean time I will pop a few links here that may help if you wanted to have a look. It is tempting to look online for more information when you have a diagnosis but I recommend that you don't google as I did and it scared me silly. A lot of the information out there is out of date and not accurate. It's best to stick to reputable places like Macmillan as their information is kept up to date and reviewed.

Womb cancer | Macmillan Cancer Support

Recovering from womb cancer surgery | Macmillan Cancer Support

Womb cancer booklet | Macmillan Cancer Support

Hope this helps a bit. 

Jane

Hi Nit.Thu57, sorry to hear your news. It is an anxious time and, no doubt, your head will be in a whirl. Once I had my results I had an MRI and CT scan fairly quickly but did have to wait a couple of months for my operation. It felt better knowing that I had a treatment plan and things were moving forward. I was diagnosed with a mix of endometroid and serous cancer so I was classed as high grade but stage 1a. I've never seen my detailed hospital notes on the biopsies but, as jane2511 has said, the important thing is your staging and grading which determines your treatment. I also found the CNS - Cancer Nurse Specialist - very helpful with any pre op concerns I had. I agree that googling isn't very helpful as there is quite a bit of conflicting information. There are lots of ladies in this group who have had a similar diagnosis so I'm sure you will get plenty of advice and support. xx

So I get my staging CT scan next Friday and then my consultation with the oncologist is July 5 I am wondering why it's taking so long . I thought I would have a date by now for my surgery.  

I don't recall waiting this long 9 years ago when I had breast cancer   

Typically how long after the consultation is surgery normally booked ? 

Hi Nit.Thu57, I was diagnosed 19/11/21, had my predicted staging MRI and chest X Ray on 23/11/21, results of that on 26/11/21, then pre-assessment for surgery on 15/12/21. On 31/12/21 I saw my consultant (extra appointment as new one had joined was taking over some cases) and he gave me my date of 22/01/22. So two months in all, but I didn’t get the op date till 3 weeks before. Different hospitals will have different schedules and wait times. I got my results on 02/02/22 so that was quite quick.

I received my diagnosis on 20 July 2022. I had an MRI on 24 July and a CT scan on 30 July. I saw the surgeon on 11 August when she advised a preliminary stage 1a  diagnosis but the first available slot for the hysterectomy was 6 October. It was an anxious wait for the op, especially after everything had been moving so quickly. The op went well and at the follow-up appointment a couple of weeks later my diagnosis remained at stage 1a grade 3. I was concerned about the grade but the surgeon explained that the cancer was contained within the uterus and there was less than 50% invasion.