Newly diagnosed Endometrial cancer spread to the omentum

Hello everyone I'm a healthy 76 year old lady or was,  till I had post menopausal bleeding went immediately to my GP had all the relevant tests biopsies and MRI scan and was told I had stage 1b endometrial cancer hysterectomy arranged then during keyhole surgery which was sadly abandoned due to a deseased omentum biopsies was sent off during my procedure frozen test done showed cancer on the omentum hysterectomy cancelled now I have been told I have stage 4 endometrial cancer, and it was never stage 1b :-(  I had one of the team phone me a few days ago, she was  not very sympathetic  said chemo is all I can be offered,  will be arranged at my local hospital, it MAY help,  which I'm waiting to hear from the clinical  oncology team,  telephone appointment arranged for the 28th February 22. I asked her why could the hysterectomy not go ahead even if cancer was on the omentum she said it was not feasible, as it's inoperable. I have seen and read if  the omentum was removed during  the hysterectomy and then chemo carried out as adjuvant therapy. Was a better prognoses.   I have also read that sadly the prognoses is not good with this stage cancer if surgery is not done. Has anyone been diagnosed stage 4 cancer and after just chemo survived this. Or do I need to get a second opinion my kind understanding GP said he would arrange it but I don't want to waste time, maybe another few months.  I have a huge family I haven't shared the negative parts as yet with them looking for something positive to tell them first. Thank you  

  • HI i read your post yesterday and today i notice you still have had any replies.
    Im afraid I cant offer any of the answers to the questions you posed in your post, but i just wanted you to know someone cared 
    I am waiting for results from endometrial biopsies and I know how you life changes after a single phone call or letter that to everyone else, including the people delivering the news, just seems an 'everyday' occurrance but to you its your whole future.
    Take care of yourself, and let your family share in the news whatever it is Im sure they wouldnt want you to protect them and suffer in silence. 


  • Hello Mandi67 thank you for your reply it was so kind of you. I have started chemo and another gynaecologist oncologist in the team reviewed my case and has agreed to do the hysterectomy and removal of the omentum after my third cycle of chemo and CT scan praying chemo does shrink the tumours. I feel a lot happier now. Thank you again All the very best Scarlett1945

  • I also have been diagnosed with Endometrial cancer which has spread I cannot understand why chemo firsrt and surgery after - I have been told this isto shrink tumour does it?

  • Hello IGUANA I'm sorry to hear you too have been diagnosed with this desease. I wish you good luck with your treatment. I prayer it all goes well. Yes the reason is to shrink the tumours first.  Are you on  Pacitaxcil and Carboplatin.  

    I had my hysterectomy in October after being told my cancer has responded so well no desease anywhere now  just in the womb where it started. So happy. Yes there's   a " but "  coming. But when a different Gynocologist oncologist to the one I had do the keyhole assessment investigation to check it hasn't spread to the peritoneum etc that was in June.  Took several biopsies and removed every lump and bump No desease found in any of them.   At my appointment he said   " all gone " with tears in his eyes and the cancer nurse too was so pleased, they were  so amazed and happy for me,  I carried on with my chemotherapy till my hysterectomy in October.  Sadly during my hysterectomy  she found it had spread to the vagina and abdominal wall. She did a full hysterectomy and also tried to remove as much from the abdominal wall by cytoreduction surgery,   but couldn't remove it all. Took biopsies from the vagina and abdominal wall and both confirmed cancer had spread :-(  had another 3 cycles of Carboplatin as suggested as no more surgery was possible.  This time only Carboplatin,  as pacitaxcil gave me really terrible periferal neuropathy. After the 3 cycles another  CT and another appointment with my Oncologist to discuss CT scan etc. Carboplatin on its own didn't work. Now it has spread to 2 Lymph nodes not far from the abdominal wall. Prognoses not looking good.    He said that's not what he wanted to see, lymph node involvement.

    Anyway because I have the type of cancer that MAY respond to immunotherapy the MDT agreed to me having Dostarlimab hailed as the new miracle drug ;-) So I started that on the 21st February. Next one due on the 14th March. Have got on well with the first treatment.  4 cycles planned then another CT scan then see oncologist again hopefully there will be good news then another 2 cycles larger doses of 1000 mg it's an open ended treatment, so may continue with it if it's shrinking tumours and controlling this cursed disease.

    I feel very well. Just a little tired as any 77 year old would feel I guess. Strangely I'm in no pain. I guess that's yet to come. I hope you get a surgeon that can remove every bit of your cancer when you have your hysterectomy. I think mine was very good but wasn't confident or experienced enough when it came to cytoreduction surgery. A friend of a friend had similar cancer and spread and her surgeon was amazing took every bit out. 3 years later still all clear. How wonderful is that. 

    We are all unique I prayer you respond better then I have to the treatment planned. God bless. You maybe younger too, prognoses is better the younger you are. Take care please let me know how things go for you. Good luck I'm sure that plays apart in all this too. Scarlett...

  • HI SCARLETT, Thanks for your reply my thought was for about 6 weeks chemo and then hysterectomy seems there is no end once in the system, test after test, and a stressful life under someone elses control, how naive I am there seems to be no end to waiting for the next letdown you must be very strong to withstand all you have gone through.good luck on your journey.

  • Hello Iguana You too are strong and will get through this. I have my Faith family and good friends I can climb any mountain We are all so unique I hope you have a smoother and shorter journey then I have had. Many  ladies have had great success and have been cancer free for years.  Is your chemotherapy pacitaxcil ( taxol ) and Carboplatin seems to be the gold seal treatment. Some hospitals are better then others, they have surgeons that specialise in our type of cancer. You can choose any hospital, also if in doubt you can get a referral for a second opinion. I cannot name the hospitals that have a better track record on here, as the Website will delete the names but do ask your oncologist. I found this out after my surgery. As I said she did an amazing full radical hysterectomy but couldn't carry out the whole cytoreduction surgery, removing the cancer that had spread to the abdominal wall area. I prayer the immunotherapy works I have read amazing stories I prayer all goes well for you. Take care God bless Scarlett 

  • Scarlett Thanks for your reply at the moment The whole tests and diagnosis consume me and I have work at not constantly looking for answers, instead of just following the consultants advice, in a nutshell it is surreal. I am s senior lady like yourself. Best Wishes you are soo positive 

  • Hello Iguana how are you doing. I’m still here been on Dostarlimab was doing well on it. The cancer hasn’t spread lymph nodes Have Strunk but not the cancer on abdominal wall. But it hasn’t spread. I did have a set back as Dostarlimab affected my liver. My oncol9gist stopped it and pu5 me on a huge dose of prednisalone did the job 8m now back on my treatment being monitored now blood tests every week to keep an eye on my liver function. I’m praying with all my heart that it doesn’t affect my liver again. Next treatment is on the 16th November feeling fine so far. Celebrating my 78th birthday with my huge wonderful family thanks to God and  my wonderful oncologist. 

  • Hi Scarlett… I will be starting Dostarlimab in a couple of weeks. I’m just finishing radiotherapy and was hoping that was it, but no. My last scan showed I have secondary’s in my lung. 

    im so gutted, hysterectomy went brilliantly all cancer removed and last document i received stated cancer was curable. Like yourself I had carbo only for my last 2 hemoptheapy. Should have fought for both..too late now. 

    How you finding Dostarlimab… many side effect.


  • Dear Kim I’m so sorry to hear your news. There’s lots they can do. We are lucky, years ago there wasn’t much going for us endometrial cancer ladies. Now on to Dostarlimab. I have been pretty lucky only side effect was my liver function went really high. My oncologist halted my treatment put me on a high dose of prednisolone started on 18 5 mg a day 14 days then I was weaned off. Only draw back was I had a round face and a Buddha belly. But off it now and everything is going down. But that was a small price to pay. I feel a little fatigued nothing like when I was on placitacil and carboplatin. OMG you know how that feels. I have started my treatment again the big dose every six weeks… blood test showed liver was putting up a good fight against Dostarlimab. I have been having weekly blood tests when I was put on the steroids and still having them. It’s a pain but it’s good they are keeping a close eye on everything. I cannot fault my team from my clever caring oncologist to the girls in the chemotherapy suite and the pathology department they all know me well as I have rubbish veins. Sorry been rabbiting so the side effects I have been lucky only the liver function and the fatigue even that wasn’t bad. So good luck with everything Kim. I celebrated my 78th birthday with my huge family 3 children 6 grandchildren 7 great grandchildren and 1 great great grandson I loved every minute, and thanked God for being blessed with a loving caring family. Please keep in touch Kim, I wish you all the best.  God bless you Scarlett