I found out last week that I had low grade endometrial cancer and what appears to be a 10cm tumor, although by the point I had my Hysteroscopy and the fact that I already had CT and MRI booked in before results came back I knew it was not going to be a favourable outcome. I understand there regular treatment for this is take everything out and to tell you that you need a Hysterectomy however I do not want to go this route I'm still quite young. if someone had lung or brain cancer we wouldn't be trying to remove the whole thing as a first option to kill the cancer. I do not want to cut parts out of my body as I personally feel that I wont be whole and I want to try alternative methods first. Did anyone else feel like this and try alternative treatment before opting for such a radical method of treatment.
I am cognisant that this is normally the most successful method to get rid of it and I know my choices are not backed or understood by many a fact I have found when talking to my family which has left me with nobody to talk too as I am currently getting the cold shoulder for not agreeing to what they feel would be best for me, but i am set on trying to keep my womb for as long as I possibly can.
Hi Kellou
Welcome to the Online Community and the Womb group.
I am sorry to hear of you diagnosis of endometrial cancer and it is very natural to want to explore all options and to have a say in what happens now. It is always your body and your choice and the important thing is to have all the information you need to be able to make it an informed choice.
I will pop a link below that I found helpful. It will give you the up to date information and some of the treatment options that may be offered.
Womb cancer booklet | Macmillan Cancer Support
Have you had the scans yet? If not you are still in the diagnosis stage- where they are checking the provisional stage and grade- all this means is they are pinpointing exactly where the cancer cells may be and what type they are. Normally when ladies have a hysterectomy there is post op pathology done to confirm the stage and grade. It is this that is used to decide whether further treatment is needed.
You are right in that the usual suggestion is to have a hysterectomy but there can sometimes be alternatives with very low stage and low grade cancers where they can use hormonal treatment in the form of a coil. Whether this is an option that you would consider and whether it would be an option for you is something that you need to talk to your doctors about. I have not heard of other surgical options but it may be worth asking. I know that some ladies can be offered chemotherapy and/or radiotherapy to shrink/control the cancer but I think that is more unusual.
if you click on my name, my profile will come up and it shows the treatments that I had. For me the hysterectomy was pretty straightforward and I recovered well from it. My feeling at the time was I didn't need my womb anymore, I was a Mum, and I just wanted it out in the quickest possible way. For me it was the right decision but I understand that not everyone wants that.
It must be difficult with your family not understanding your decision and maybe they are just finding it all hard to deal with, the diagnosis can shake everything up and overwhelm everybody around you at the time.
My suggestion would be to get all the facts and then make the decision that is right for you, after talking it through with your doctors. It is promising that they believe it is a low grade cancer and hopefully when the scan results come back it will indicate that it is contained in your womb and no cells have managed to escape. There are several different types of endometrial cancer and lots of factors to consider. There are also various other markers that show from the biopsy- and sometimes these can be the critical information.
If you feel talking it through with someone outside of your own circle would help, then perhaps give the Support Line a call and speak with one of the nurses. They may well be able to suggest other options for you.
I hope this helps a bit. I know when I had my own diagnosis it can be very overwhelming and at times feel out of control. Have a look at the booklet perhaps, get the information and talk things through with one of the nurses. Perhaps make a list on paper of questions/pros and cons etc that you can put to your own doctors when deciding your next steps.
I wish you well whatever you decide and we are here if you need us.
Jane
