It's 3 weeks since I was told by phone I had endometrial cancer. I think I went into shock and then the anxiety( for which I've been taking Prozac for decades) kicked in.
I'd had some post menopausal bleeding, seen GP, had hysteroscopy ( privately. I wanted a GA which hospital was unwilling to do. They said it would delay the procedure which I felt was concern for their targets rather than anything to do with me. Glad I did. Large polyps removed. Took several weeks to feel like me again.)
Gynecologist phoned with the results and said I'd have CT and MRI, which I've had.
Yesterday another phone call to say come in for preops in 2 weeks time.
I'm feeling rather alone. I've read all sorts of posts on here and that's been helpful and supportive but people refer to teams of support. I've only had phone calls, either from gynaecologist or a secretary. No nurse, oncologist or anyone else. I try to be positive but whenever the gynaecologist phones it seems to be with worse and worse news. I think he said grade 3.
I spoke to a Macmillan nurse from here early on who was lovely but of course she could only come out with platitudes because she knows no more about my case than I do!
Could really do with a boost from someone.
Hello PA52
Welcome to the forum.
I am sorry to hear of your diagnosis of endometrial cancer 3 weeks ago. I can remember what an anxious time it was for me. It sounds like they are moving ahead quickly and hopefully you will be able to have your surgery soon and be back home recovering.
I remember being told over the phone and felt quite numb for a couple of weeks and then the worry kicked in.
This link will take you to some info that may be helpful.
Womb cancer booklet | Macmillan Cancer Support
I found that there was a sort of limbo time between getting the diagnosis over the phone to actually seeing the surgeon and finding out what was going to happen and when. I remember at the time I had seen different people for different parts of it and didn't really know who to contact and how. In the end I contacted my GP who was able to contact the right dept and I was then called in the following day to see my surgeon and have my preop. That was on the Friday and the surgery was on the Monday. Possibly this is the stage you are at. You have the diagnosis but not yet the specific plan and introduction to your CNS.
I found also emailing my consultants secretary was a good way of getting a response. You could also go on your hospital website and look under gynae oncology and there are normally contact details.
I know what you mean about when you get phone calls it feels like worse and worse news. However the good news is that they have found it and it is treatable. What I would expect is for you to be told a provisional stage and grade of cancer before surgery and then this will be confirmed post surgery.
Stage is about where the cancer is in your body- stage 1 is where it is contained in the womb. Stage 2 is where cells are found in the cervix (still considered contained) Stage 3 is where there is spread within the pelvis and Stage 4 is where there is spread outside of the pelvis.
The grade is about the type of cancer cells and how they may behave. Mine was grade 3 also and it is where there is quite a lot of difference between the cancer cells and normal cells.
For some ladies surgery is enough. For others there may be some follow up treatment needed but this is decided when the post op results come back.
It sounds like in 2 weeks time you will have a much clearer idea about what is going to happen and I found once I had my treatment plan, it did all feel more in control. The thought of surgery for me was scary but I found in the end it was pretty straight forward. I had little pain and was home the following day. I recovered quickly. I was really well looked after and I am sure you will be too.
I hope that your pre op appointment goes well but in the meantime we are here if you need us. Do ask if you have any questions as there are many lovely ladies on here who have been where you are now and will want to offer support.
The Support Line is there if you want to talk things through- although they can not tell you about your own diagnosis they can offer a listening ear and can answer any questions in general.
If you click on my name my profile will come up- but I am 2 1/2 years post treatment and well. In March 2022 I was feeling very much as you are - worried and in limbo- but I am doing ok now.
Jane
