Hello Elowen, 

I am sorry to hear about your mum's diagnosis and I hope that her appointment with the oncologist goes well on Wednesday and that she gets and answer to all these unanswered questions. It is unfortunate that she was initially misdiagnosed and I hope that she finds out very soon what her treatment options are. 

Several of our members have also been diagnosed with endometrial sarcoma so you've come to the right place to talk to others who have been in a similar place to your mum's and they may be able to guide you and answer some of the questions you may have ahead of your mum's appointment on Wednesday. For example, [@Alissico]‍ posted this thread only a week ago and would be a great person for you to connect with as well as [@Sundial]‍ and [@gamechanger]‍  who are also mentioned on this thread and have had this diagnosis before.

I will now let them or anyone else with endometrial cancer that comes across your post share their stories with you. 

I hope this helps a little and that your mum gets the answers she needs soon. Our nurses are also available on this free number 0808 800 4040 - their line being open Monday to Friday from 9am to 5pm so don't hesitate to give them a call if you want to talk things through with them. 

Best wishes, 

Lucie, Cancer Chat Moderator

Hi Elowen, sorry to hear about your mum. Although the moderator tagged me to see your post, my situation was quite different to your mum, and the diagnosis was different. What I would say is, try to take one step at a time. Hopefully you will find out more shortly.

regards, gamechanger

Hi 

I’m sorry to have missed your post but can now  see that Lucie has answered and mentioned me as someone you might talk to. Firstly it’s natural to want to rant. I did long and hard for a while. I was diagnosed last year with endometrial cancer. I had a hysterectomy and internal radiotherapy and am just about to attend my second post treatment appt. i presented with post menopausal bleeding which was misdiagnosed three tines by my GP over a period of eighteen months. It was only when I saw an out of hours doctor that I was referred to the hospital. So I know the worry that you and your mum must be going through. It is tough waiting for results and a treatment plan but I can assure you once you know what you’re dealing with you will then have something to concentrate on. Hopefully the appt on Wednesday will clarify matters and a way forward can be seen. I was told that endometrial cancer has a high cure rate but treatments vary between individuals depending on the grade and stage. I had an MRI to determine the stage after an initial biopsy to determine the grade. I imagine the CT scan is to assess spread and therefore the stage.

i know you have lots of questions so fire away and if I can answer them I will based on my experience. I hope everything goes well on Wednesday and you come away from the appt with more idea of what faces your mum both in diagnosis and treatment,

Sundial

Thank you for your kind reply :-)

Thank you for replying gamechanger :-)

Hope things get sorted today Elowen. I will be thinking of you.

Sundial

It’s not good news I’m afraid. The sarcoma that mum has is very rare and it has spread to the bone which is not a huge surprise as we were expecting that. They are considering a hysterectomy but because of the size of the tumour there is a 60% chance that they get in there and find they are unable to complete the procedure because of the risk of bleeding out on the table. If they do get in there and find that they are able to do the hysterectomy, this will only be to relieve symptoms and stop the tumour from growing any more and impacting on other organs like the bladder and bowel. Because of this risk they are unable to advise us one way or the other and they have effectively said that it’s a decision for us as a family to make as to whether mum has the surgery or not. If she does she’ll have 6 weeks of recovery which will eat into the time that she has with us and it won’t necessarily buy her more time anyway. One way or another, it doesn’t change the ultimate outcome because of the spread.

They are unable to give a prognosis because they just don’t know how quickly this thing is going to grow and where else it will spread. It seems like they are in unchartered territory. Chemo may slow the cancer but the nurse said that this particular type of sarcoma doesn’t react well to chemo and it’s a very gruelling and hard going type of chemo anyway which again would affect quality of life and the time that she has left with us. I have asked the nurse to speak to the specialist about proton beam therapy or any other options even if we have to pay to get them but honestly I think I’m just clutching at straws. All the hope that I’ve been clinging to is draining away. I can’t stop shaking. The thought of losing my mum has suddenly become incredibly real and I don’t know what to do.

I am so sorry. Take time to let it sink in and for you and your family to think things through.

I am sending a virtual squeeze from my hand to yours and hoping you all find strength in being and working out things together.

Sundial

Thank you again for your kind replies. It has now been a few days and after getting over the shock we are all ready to fight. Because of the rarity of this cancer, the team dealing with it have little to no experience of it and have readily admitted that. To quote them, they 'feel useless.' Mum hasn't even seen a sarcoma specialist yet, just the gynaecology oncologist. We are down in Cornwall, which is not at the forefront of medical innovation! We are therefore in the process of getting a referral for a second opinion from a hospital in London. We don't expect the diagnosis to be different but hopefully this will open doors to more advanced treatment options. We're not giving up yet!