Endometrial sarcoma - so many questions!

Hi. I’ve been reading posts on this site for the last month but I’ve not really known what to say to people or where to begin. My mum (late 50s) spent the early part of this year going to her GP with stomach pains which, cutting a long story short, were misdiagnosed as fibroids. She was referred for tests off the back of an A&E visit at the end of May when her pains were particularly bad. Since then she has been diagnosed with endometrial cancer – a sarcoma. Because of the size and location of it, she was told initially by gynaecology that surgery wouldn’t be an option and they would likely go with chemo. A CT scan showed that there is something on the bone of her pelvis, and as mum has been having pain in that area and her sides, and struggling with uphill walking, we are under the impression that the cancer has gone to the bone. We are still waiting on the bone biopsy to confirm this (but it seems pretty likely) and also the results of another CT scan to see if the cancer has spread anywhere else.

 

Yesterday mum had her first appointment with the oncologist who told her that the cancer is slow moving. This I assume is a good thing but that seems contradictory if the tumour has got so big? The oncologist also said that they would now be looking at going down the surgery route because she thinks that the tumour is too big to respond to chemo. The specialist who deals with this particular type of cancer isn’t in until Monday but mum has been asked to attend another appointment on Wednesday (not with the specialist and not even with the oncologist, but with a doctor who is a link to the oncology team!)  I don't know if this will be to discuss more results, or prognosis which we don't have yet, or what. It just seems like there are so many unanswered questions, so many unknowns, and even after months of initial misdiagnosis things seem to be taking so long.

 

I’m not sure if I’m looking for answers or advice from people who have gone through similar or just a place to vent, but thank you in advance to anyone reading.

  • 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 :-)

  • Hi Sundial, thank you very much for your reply and also for sharing your story with me. I think one of the most frustrating things is the long wait between diagnosis and any sort of treatment. Having no experience with this sort of thing, I don’t know if wait times are indicative of prognosis or staging, or if it’s just reflective of how busy the NHS is? People I know have told me their own stories about treatment starting immediately because their cases were particularly aggressive or the outlook didn’t look good. The hopeful part of my mind thinks well, maybe it’s a good thing that they’re not rushing to start treatment. The frightened part can’t help thinking maybe it’s because treatment won’t be likely to make much of a difference, and that part of my mind is much harder to control! I’m very sorry that you were misdiagnosed too but at the same time it is reassuring to me to know that you went through the same thing but still had a positive outcome! The appointment is tomorrow so I will put an update on here. Thank you again!
  • 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!