Serous Endometrial Cancer

After a D&C and biopsy, I was advised I had polyps.  A week later I was advised I had Endometrial Cancer.  My first OMG moment.  I had a hysterectomy and biopsy on two lymph nodes early last week (two weeks tomorrow) and was told by the surgeon last thing before I left hospital to take it easy dont stress as my cancer was not agressive, slow moving, and they could see it was contained.

ON Friday two days ago, my surgeon rang and I knew I was in trouble as she wanted to know if my husband was with me.  So my pesky little inconvenience has finally been diagnosed as Stage1A Grade 2 Serous Endometrial Carcinoma.  The cancer was contained in the uterous, ie they said it hadn't spread.  My massive OMG moment.

I have been in shock since, and feel even worse after trying to find out about this cancer the literature is very disheartening.

It has been explained to me I can expect to have four cycles of chemo every three weeks, followed by 28 radiation therapies and then possiblly 2 more three weekly chemos.  Also explained they are going to hit me with the really heavy duty stuff if I can take it.  This regime will be confirmed on my next appointment as I have to wait another four weeks to heal from the surgery.

This treatment will obviously have a lifespan of nearly six solid months.  Is this normal.  I know so little, cannot find too much on the internet except awful statistics and not a lot about serous.  I am trying to keep a clear head but its challenging me big time.

If this cancer is as bad as it appears, is there an argument for not having treatment.  I am so confused, I hope someone can help me or guide me somewhere.  I need some positivity, and being in Australia there are no forums here.  Thank you in advance, Ella.

  • Hi Ella  and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here. I am so sorry to hear that you have been diagnosed with Endometrial Cancer and that you have come all the way to a UK forum for help an support.

    I am Mike Thehighlander and I help out on the Community and I will do my best to direct you to the best place for you to find the support and help you need and on my long journey I found the best way to navigate the various challenges that a cancer diagnosis brings was by talking with people who are on the same journey.

    My cancer journey was rather different but if you follow this LINK to our Womb Cancer Forum you will be able to connect with people who understand the journey you are on.

    Just join the group and hit the 'Start a Discussion' tab and introduce yourself to the group and remember to go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.

    You may also find our various Macmillan Support Line Services on 0808 808 00 00 to be helpful as you can talk to a friendly person that can help in lots of ways.

    When you have the time it would be helpful if you could put some information about yourself and the journey that brought you to the Community into your profile as it really does help the Community members to help you and get to know you. 

    Click on your username and that will take you to your homepage. Look for ‘Edit my Profile’ click on it and start to tell us as much or as little about yourself as you want then click on save before closing the page. 

    All the best.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile

  • Hi

    I am so sorry to hear about what you’re going through. I was in a very similar position five years ago. GP thought fibroids were causing my symptoms. The gynaecologist diagnosed womb cancer but she said it was the slow growing kind and contained in my womb. The surgeon told a different story - grade 3, stage 3c2 serous carcinoma. One pesky lymph nude inoperable. 

    All of which is to say that you are not alone. They threw the kitchen sink at me too - six months of chemo, six weeks of radiotherapy and then brachytherapy. I was advised “give yourself over to this for the next year”. It was good advice. 

    So what helped me through that year? This community for a start. The womb cancer group is an amazing source of support where women with womb cancer (wombies. Too early for a joke?) share their personal experiences and support each other. It was - is - my lifeline. 

    Here is a link: https://community.macmillan.org.uk/cancer_types/womb-cancer/

    Get yourself over there and say hi. You’ll find a warm welcome and plenty of love and hugs. 

    Xxx

  • PS step away from Dr Google. He’s not a good companion right now. The statistics about uterine serous carcinoma make for poor reading but it’s important to remember that that they refer to populations, not individuals. They don’t tell you what’s going to happen to you. As someone wiser than me has said “looking for comfort in statistics is like trying to quench a thirst with salt water”. 

    Mike has given you a link to the excellent Macmillan womb cancer information. You might also usefully look at the info from The Eve Appeal. I helped write it along with two leading clinicians. I think it’s rather good. 

    https://eveappeal.org.uk/gynaecological-cancers/womb-cancer/understanding-womb-cancer/

    Xx

  • Hi 

    Can I offer a second welcome to the community and I'm also sorry that you had to reach out to us and I hope by following the advice from Mike and Daloni that you will engage with the members of the Womb (uterus) cancer forum group, you will find that the members are all very friendly but above all they are very supportive of each other and share their experiences with each other.

    You may be interested to know that we have quite a few Australian members who might be of help and support to you.

    We also have an active Chemotherapy forum group and you might find it beneficial to join the group and introduce yourself to the group and within the Breast cancer forum they have a monthly club where members chat and swap stories which might be of help to you on chemotherapy whilst you don't fall into this group it might be of interest to you if you follow some of the chats.

    Can I also suggest that you stop googling for information it's so out of date misleading at times and very depressing to read use this forum to get information and you are also very welcome to post questions to our specialist nurses in the Ask a Nurse where you can ask them anything you need to know and they will give you a lot of information and answer any questions you may have.

    But please do join the groups suggested and start to meet people who know from first hand experience what you are going through.

    I am tagging my friend  Lynne into this conversation and I hope she will be along soon to welcome you into the family.

    Ian

    By clicking on any of the green text above will open up new pages for you and will you join the groups and start new discussions.

    With 2 Certificates in Stoma Care and Management.

    You can find me in * Stoma Support * Bowel * Carers * Anal * Family & Friends * Bereavement * Diagnosed at a Young Age * Parents of Young Children * New to the Community * Living with incurable cancer - incurable patients only / End of Life (and others)

    Macmillan Support Team 0808 808 0000 Monday to Sunday 8 am to 8 pm, a delay in answering might be experienced.

    What is a Community Champion?

    The BODACH is LIVING WITH A ST● MA

  • Hi

    Sorry I should have included the following link into the April chat although it is in the breast group the chats on chemo might be of interest to you for information.

    Ian

    With 2 Certificates in Stoma Care and Management.

    You can find me in * Stoma Support * Bowel * Carers * Anal * Family & Friends * Bereavement * Diagnosed at a Young Age * Parents of Young Children * New to the Community * Living with incurable cancer - incurable patients only / End of Life (and others)

    Macmillan Support Team 0808 808 0000 Monday to Sunday 8 am to 8 pm, a delay in answering might be experienced.

    What is a Community Champion?

    The BODACH is LIVING WITH A ST● MA

  • Dear Daloni,  Thank you so much for responding.  I have felt so alone, and very scared.  I know so little about this cancer, as most of the literature is on the common variety, no pun intended.  They alway says except for serous, and all grading for serous is grade3 regardless.  The main adjectives I read repeatedly are rare, agressive, poor prognosis.  Scary stuff.  To hear from you and your situation has given me hope, and for that I will always be truly thankful.  Kind regards, Ella.

  • Hi Ella

    you are so very welcome. There is hope. There is light at the end of the tunnel and it’s not necessarily the oncoming train. There are several women in the womb group with USC and they’ll tell you the same. 

    For now, breathe in, breathe out, repeat 

    xxx

  • Hi , I know this post is 2 years old but Its the only one i have found specifically for SEROUS . I had a Total Robotic  Hysterectomy on 8th July ( 3 weeks today) which included Bi-lateral Salpingo-Oopherectomy, Pelvic node Dissection with Bilateral Central Node Biopsy and Omental Biopsy...  My discharge summary confirmed '  Uterine Serous endometrial cancer stage1 on Imaging '    I am now awaiting a telephone consultation booked on 6th August to hear my fate. I hadn't in all honesty realised how serious SEROUS is.  to me it was just one of many different strains of cancer., and when I did look it up what I found frightened the life out of me and as a result I just stopped looking and decided to wait for the dreaded phone call...I am quite  a strong person and tend to deal with things thrown at me, but when your own mortality is thrown in to the equation...well...that's a whole new ball game.....I don't know what else to say ..what to ask  ?..do I even want to know,?   do I just want blissful ignorance,  ?.. truth is I think I need to know so I can deal with it, I have a family to think of,  what do I tell them..? One of the truest statements iv read is " It's the waiting that is the worst "  

  • Hi  I'm one of the Champs for the Womb cancer group. I was regraded after exactly the same procedures (together with a peritoneal wash) you had to Stage 1b, grade 3 (high grade SEROUS). I had 3 adjuvant sessions of Brachytherapy and have just had my 3rd three month consultation and all clear.

    Yes, it's the waiting that's the worst but having read this & my profile please do not despair!! I feel absolutely fine but when I was where you are at the moment yes I was climbing the walls too!

    It's not long until you'll hear but if you need more reassurance, come back and post on our forum.

    Big hugs, B xx

    I'm a community champion

    Womb cancer forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    "Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett

  • Thankyou so much for your reply I find this a little more reassuring and not so 'alone' I know everyone is different but it's made harder when there's not a lot of positive info about.. One of the things that's causing confusion for me is having 2 or 3 different reports on staging and grading since my journey began. so i have conditioned myself to wait for my surgeon to ring me on the 6th August to get a definitive diagnosis and I'm compiling my list of questions to ask.. I will re-post when I have a better understanding about what comes next.

    Thanks again and I wish you well for the future x x x