Endometrial cancer

Hello  all -  what  a  great  site  to  have  stumbled  upon.    Thank  you  to  Cancer  Research  UK   whom  I've supported  for  yonks......,Only  just  joined.   I'm in  remission,  but  like  to refer  to myself  as a  cancer  survivor,  thanks  to the  NHS, though  got  to  have  tests again..  Good  luck  to you all out  there on here. 

I didn't  have  endometrial  cancer,  but have  joined  to  find    out  the  answer  to  this  puzzling  question.....my  91  year old  mother,  dementia,  so  understandably  gets  confused.   Diagnosed  with  Uterine also  known  as  Endometrial  cancer 7  years  ago,  had  radical  hysterectomy.   Back  in  hospital last  week -  I  caught a  glimpse  of  notes,  Endometrial (pallative)  cancer.    How  could this  diagnosis  be  at all possible  if  she had a  radical  hysterectomy? She  has  no  womb, ovaries,  FT's.    Sadly,  my  mother  is  very  secretive, these days,  due  to the  dementia, and from  what  I can  make  out  from what  she  chooses to  say,  it  seems she has  a  secondary  in her  bladder.  Maybe  I'm being  stupid  or  something,  but  wouldn't  this  be put  on her  notes  as  bladder  cancer,  and not  endometrial?    She's  receiving 2  doses   a  week  apart  of   radiotherapy via  the  vagina. 

 The  worst  thing  is, she lies  to my  96  year  old  dad - been  married  70  years - pretends all is  well,  when I know  it's  palliative. Worse  still,  she  knows  I know  she is  lying. Hostile towards  me. I put  it  down to the  dementia.  As  a  cancer  survivor  myself,  but  waiting  to  see  a  GP  to   undergoing  tests for a  secondary  myself,   I just  find  it odd,  that a  radically  hysterectomised  woman of 91, has it on her notes she  has  endometrial  cancer, not  bladder cancer.  My mother  would  disown me  if  I  even tried to  talk to  nursing  staff,     though  when  she  next  goes in  next  week,  I think   since  being  listed  as  next  of kin,  might  find the  nerve to  ask  a  nurse.. Mum   is  aware  she is  dying  ' I've 'had a  good  life'  etc,  yet  keeps  my poor old  dad  in the  dark.  He  remains  optimistic,  says  she  can be  fitted  with a  bag  for the  urine...... this  would  be impossible,  due to her  age, heart  murmur, and I know  she is  dying.  I suppose  it's  about  quality  of  life  at  the  end.

I'm  sorry,   how  remiss of  me to  go on about  my mother, but   from my research,  it is  IMPOSSIBLE  to get  endometrial  cancer, if  you  have    been  hysterectomised.  Is  there  anyone  out there  who  can  throw  some  light on this  question?  The  worst  case  scenario  is that she lied about having  a hystrectomy: if  so,  what  DID she  have  done?    Once  I'd  heard  she'd  seen  the  lovely  McMillan  Nurse ( I  used  to  run  for them, and  Cancer  research in  my  younger  days) I knew she is  terminal.   She let  my  dear old  dad  wait  for  8 hours outside.   He  missed  his  tablets  regime.......I think  she  lies  to him,  to me,  to protect him, but surely  he  should take this limited time to prepare himself.  But  that's  an  ethical  question....  all I really  want  to know  is an  answer:    how  can  you  have  endometrial  (palliative)  cancer if  you've  had  a  hysterectomy?   I'd  be  very  grateful  for  any  replies.

Sorry, once  again,  for  taking  up  your  time, but I don't  understand  why  or  how  her  diagnosis  is  endometrial  cancer  when  she had a  radical  hysto 7  years  ago?  Can  anyone  be  kind  enough  to  shed  the light  on this  matter?   I thank  you  for your  time,  and wish you all the  very  best  in your treatments, and what  you are going through.  Thank  you   CR  for  this  forum.  

  • Hello Sarah100, and first of all may I say how sorry I am for what you and your family are going through.  It does seem very strange that your Mother's notes state that she has endometrial cancer and yet she has had a hysterectomy.  I think that the only thing you can do is to ask  your Mum's medical team exactly what is going on.  Good luck, xx

  • Morning,  Blue-girl -  just  a  quick  note  to  say  thank  you very  much  for your  lovely  supportive  reply: it  is  indeed  a  mystery,  isn't  it!!!! I  do  hope  I  haven't  frightened  other  ladies diagnosed  with  EC:  a  hysterectomy  is  the  usual  treatment  for  it  and highly  successful,  so I hope  these  words  may  be  of  comfort  to others.  My  point  was  that she  couldn't  have  had a  hysto,  7  years  ago -  basically,  she  is  lying -  which is  a horrible  thing  to say  about  my  own  mother,  but  then  again,  I blame  it  on  her  dementia.  She'd  disown  me  if  I  ever  approached  her  medical  team,   and  she  didn't  want  me  to visit:  she  knows I know!!!!   Anyway,  thanks  once  again  for  your  reply,  Blue-girl.   If  I can be  of  any  support  to  you, please  feel  free  to  contact  me.  Otherwise,  I wish you  all the  very  best  of  luck  and   same  applies  to  anyone  else  reading  this  thread.   Thanks  again :)

  • Well,  today  was  my  91  year  old  mum's - I've  found  out  what  its  called  by  reseraching on here,brancaherapy.   A week  after  her  first.   Called  my  96  year  old  dad,  only to  be  told  I 'interfere',  am not  a  good  daughter,  when  I do  everything  they let  me  do for them. Hurt feelings -  apparently  NHS  transport  was late,  but nothing to  do with me.....   Yes,  aas per  my previous post:  having  spoken  to Mcmillan, and  also  a lovely nurse on here,  it  really  is impossible  to have  Endometrial Cancer  if, for   example  my mother  had a  radical  hysto 7  years  ago.  I asked  her specifically, when  I did sit  by her, in  recovery  and then moved to overnight  ward,   a  week  ago,  what  sort of  hysto  she'd  had.  I specially  asked  about  ovaries,  Fall  tubes, pelvic  glands, the  truth  is,  she  did NOT  have  a  hysto  at  all 7  years  ago. 

    I have  spent this morning, trying  to  find out  what op  she  did  have then...... all  lovely  people,  but   not allowed to tell  me,  as  I expected, and  quite  rightly  so.   I'm sorry to  be  venting  my feelings,  but  why has  she lied,  not  to me, but  my dad, other  family members?    Thing  is   she   knows  I know - as  soon  as  I caught a  glimpse  of her discharge papers  Endometrial  Cancer ( palliative) at  her  bedside last week.  I have  phoned  every  day,  checking her  urine  output ( I personally think it's bladder  cancer)  but  now  told  I am  a  terrible  daughter, not  to come  up,  I interfere,  and my  dad who  adores her,  told  me  I am  no  longer  welcome  to  visit.  Thank  the Lord,  I have strong  mental  health -  but  sadly  my mother knew  I knew  she'd lied again about  her op 7  years  ago.   

    By  the  way,  I   do not  want  to worry  any  younger  ladies: there  are  different  levels of  cancer/grades  and  also  type  of   hysterectomies.... surgeons  usually  like  to keep your  ovaries  and  Fall  tubes  as  younger  women, and  highly  successful.   I am  very sorry  if  I have  frightened  anyone  ...... this    thread is more about  end of life,   and  not  being  able  to  find out why  my 91  year  old mother  has lied  to the  whole  family. 

    Yes, I have  a  vested interest:  there is  something  called  Lynche  Syndrome:  from  what  I understand  just  genetically inherited.   I  say 'just',  but  it  is a  real  thing!    I am  a  cancer  survivor, immuno -compromised, as  it  is,   undergoing  tests for    a  secondary..............   I think my cancer has  reached  to bladder and  breasts too.  Lynche  is   very  rare, but  my  hours  of  research  says, and  I am not  medically  trained,  just giving  my thoughts,   but  a  simple  marker  on my mum's  next  blood  test  would  show it. Usually passed  down  by  maternal,  but  can be passed  paternally  as  well, so it  seems.  She  won't  even talk to me  and via  my dad told  me to keep away.

    Hope  this has been  informative and  helpful. thank you.

  • Hiya Sarah100.  I am really sorry for what you are going through.......it seems that just because you wanted to know the truth about your Mum's condition, you have been made a scapegoat, which is of course very unfair.  I am sorry that your Mum is refusing to see you.  I think that a crisis tends to bring out the best and the worst in people.  I took care of my Mum when she had terminal cancer, and one evening when I went to visit her in hospital, she said something so hurtful to me that even now, almost 30 years later, it  brings tears to my eyes when I think about it.  I now have terminal cancer myself, and I have made a determined effort to treat my family with kindness, because I don't want to leave this world with the knowledge that I hurt anyones feelings while I was here.  It seems that you have done the best you can, and hopefully your Mum will relent and ask to see you before she leaves this life.  I wish you all the best, take care, xx  

  • Dear  Blue-girl.   What  can  I say, other  than  being  humbled.   Thank  you   for your ongoing  support  when you  are suffering  yourself.  I  have  no  idea  how  to  answer  you  privately, but  I  should  imagine  that  this  is  a public forum,  so  what  you said is  for all to  see.  Took  me  ages  to find out  how  to  reply - bit of a  technophobe  here, per  se,  and  been crying  all day, so  a  tad  emotional. and  not  functioning  very  well,  no  sleep,  food,  just  so  upset  today.  My  dad, 96,  has told  me  to  stay  away  this morning.  Don't  come  up,  he  said,   and apparently  I am  to blame for  an admin  mess up   re  her  NHS  travel who  came this morning, let  alone being called  names by him.  Truth  hurts, so it  is  said. But  there is  no truth in any of  this.

        I am a  devout  Christian   and found your  words  very  comforting,  Blue-Girl,  as  I am  sure others will  do.   I have  nothing  but  compassion for  your terminal status,  and  if  you will  allow, will add  you  to my long  list  of those who  will be passing.  You  sound accepting of  your diagnosis, and I hope  you  do have  the love  and  support of your family and  friends.  I  do  not  engage  in  confrontation, am   just  a peaceful lady,  most people  like  me, have  tons  of  friends,  but  family,  been told  to  stay away, even  by  my dad. I was  never  able  to have  children,  due to  life long  endometriosis, 7  ops,  under  the  IVF  in  its  infancy  under  Mr  Steptoe.  I was of   the  Louis Brown  era.   First  IVF  baby,  who  later  went on to have  children.  It's  a  magical  world, the  cancer  scientists  have  found  so  many  different  treatments,   and  cancer effects us  all,  either  having it, or  knowing  someone  living  with  it........  Anyway,  this note  is  not  about  me, or  my  (admittedly) feeling  sorry  for myself that  both  my parents  have   rejected  me  now,  even though  I don't even know  what  I have done  wrong.

    I  got  a  horrid  text  from  my older  sister:  blaming  me,  and to stay  away.   Found  out  today  that she  has  POA over  both  of  them.   I  do  not  know  why  I have been  cast  aside,  when it  really is  a  Bible  story of  the Prodigal  Son.  She  does  nothing  for them,  never  visits, I do/did  everything.  She pretends  she  doesn;t  know  my  address,  even though been here  for  18  years.... lies.... cheated on all  her  husbands....   I know all this, I can prove  it, but  hey  ho.... nasty  text  from her.  I  can't  even  open  it,  just  read  the  first  sentence,  that  was  enough.    

    I  like  to  end  my   posts  with practical  advice:  there  are two  types  of  POA:  financial  and  welfare.  Most  siblings  share both  equally,  just  to put  some legal  stuff  out  therem  but  to put  their  care into  her  hands......  she  doesnt  even   visit......but  that's  my parents' choice.  It's  not  nice being the one who  loves the  most, does  everything, my  sister  does  nothing, but  lie.  Dad  said,  'because  she;s  the  eldest..........  Hmmm.

      But  hey  ho.  I  retain a  sense  of  humour, since  money means nothing  to me.  Life  does.   They all know  about  my  cancer  battle,  but  I am the  blacksheep.  There is  never  any  smoke  without  fire:  sadly  my sister has  created  the  smoke.  My  advice out  there, or  rather  suggestion, is  anyone  reading  this,  try to  bury the  hatchet with  any  siblings.  I have  tried,  failed, but  what  can you do with your parent's  favourite,  who  has lied  her  way through  husbands, and not  really  a  surprise,  now  has  both POA's  over   my parents.  

    Back  to  you,  Blue-Girl.  how  kind  it  is to  reply to me when   I  was  in the  depths  of  depression,   I found  this  site  and you  replied.    Bet  you're  not  feeling  that  chipper  yourself.... bless  you.  I  won't  ask what grade you  are or  where, but  you   are  very  accepting of your  terminal  status.    I find  that  humbling -  cancer  survivor  here,  but think I have  Bladder.  Sorting  out  my own  will, and  no children -  my sister  is  my next  of kin.  Oh  dear..... Any  legal eagles out  there? Did  my Will  over  Covid time,  but now I know  I have  secondaries, not long to sort this out.   Probate,  hmmm.  Guardianship?  I  just  want  all my  estate to   go to  British Heart and  CR.   Sister  next  of  kin.    I  can not  the only  childless,  unmarried  lady on here,  who   is  estranged  from  sister......    there is  some sort of  status,  Will,  made to exclude  next  of  kin who  would  contest  a Will.  I'm  not  worth  much,  monetary,  but a  stands, whilst mum and dad  still alive,  next  of  kin.  MY sister  aalready  knows,  leaving her  two   adult sons  money.  Now, no.  so  any  legal  people  out  there,  please  say........ the  Govt has  some  sort  of  scheme for us  childless,  unmarried,  but  name  of  it  escapes me.


    if you  want to talk to  a  kind  stranger, I am here.  You  and I  both been  around  cancer a  long time,  since you nursed your own mum..... I nursed  my  aunty.....also  about 30 years  ago.  Try  not  to  cry when  you  remember  some horrid  thing she  said  to you,  Blue-Girl.   Drugs  cause  all  sorts  of  effects,  and  I am  sure  deep  down  she  didn't  mean it. Just  words.  I love  that  song  by  the  Bee  Gees....   I hope your  daily  life is  filled with some joy, and  being on  here,  certainly has  helped  me.  You're  a  giver:  so  am  I.  Listen  to  music   poignant  to you.  I KNOW  it  hurts -  I've had  it  double  whammy, triple  whammy today,  with my sister, bouyed  with her  enforced  POA,  has  left  me  a text  asking  me  not  to upset  my  dad. 

     I'm going  to  cook  my dinner  now,  something  unhealthy,  since  hey ho,  why not when dying?     I am too.   Be  too late    for me still   waiting  for  tests  and  can't  afford private,  ,  and  fed up  with  ops  anyway.   I  am rady  to  go to my  God.    So  easy  to cook  a  bit of  steak  and  chips -  . and ice  cream,  lines  the  tummy. and also  yummy!   Ha  ha, that  rhymes.  Blue- Girl,  what a  lovely lady  you are, to literally pick  me  up,  help  my  depressed  mood,  and I thank you.  I only  wish  I  could help you in  some  way.   Always  about,  if you  ever  need  a  virtual  stranger  to chat to.  Thank you,  sweetheart.  Oh, not  allowed  to  use  terms  of  endearment anymore....  this  woke  melarky....  okey  dokey,  night  night.  Going  to call my  dad  again to  check  he is  alright  and not  forgotten  his  tablets.   I won;t  mntion my sistere  two nasty  texts.  OK,  nighty night.

    To  all suffering..... I  am not a  medic,but know  A LOT about  endometriosis.  That  condition  is not  the  same  as  endometirial  cancer.  This  thread is  about  EC  and end  of  life care.  I was  a  campaigner in the 80's.   A certain  newspaper reported it was a  sexually  transmitted  disease.  Got  a  retraction,  now,  a  registered  disabilitiy  after  some  40 years or  so.  Those  who  have  read my story on here so far,   suggest  you  have  a look  at  the  Endometriosis  Society.  I have no vested  interest - too late  for me now,  but  anyway,  just a  top tip!   BLUE-GIRL,  nighty night.   I'm  ok, vented  my  upset in a public  forum,  I  hope you  email me  again, if  I can  help  in  any small  way at all.  OK, off to phone  my  dad  again, even though, my sister has  warned me to  not do so.....ha, ha....  night!

  • Dear  all, apologies -  only  just  realised  that  there  is  already  a  thread  on  EC:  am a  bit of an  idiot  when it  comes  to the  internet!   Anyway,  my stay  on here  has  come  to  an  end  now, after  just  a  week  or  so.  You've  all been  very  kind and  helpful,  especially  Blue-girl,  but  need  some  time off now.  No  doubt  I  will  re-emerge  back on here   some  time,   after all my battery  of  tests for  secondaries.   I have   been  emotional  regarding  my  mother, perhaps  too  much so,  apologies.  Blue-girl:     all  the  very  very  best with your  journey.   I  would  like  to  delete  this  account this  morning,  but  won't  do  so  until you reply:  would  hate  you to  think  I had  just  been and  gone and  insincere in  my best  wishes  for  you.  Ok then,  everyone,   all  the  very  best  to all  of you regarding  EC.  Bye  for  now.  May  catch you on  bladder  and  breast  cancer  pages....  cheerio   and  big  virtual  hugs to  everyone  :)

  • Hiya Sarah100.  Wow........families eh?  Sorry to hear that your sister has basically cut you out of the family.........what is wrong with people?  Doesn't your sister realise that it is times like this when families NEED each other the most?  The main things is Sarah, you know that you have done nothing to be ashamed of, and you can look at yourself in the mirror and know that you have conducted yourself with honour and integrity.  As for me, I have a wonderful partner who helps to keep my spirits up when I am feeling very low.  He is also very ill (though not with cancer) and sometimes we make jokes about which one of us is going to fall off our perch first.  It probably seems like very dark humour, but that is how we face life.  I am a Christian and my faith is what has helped me through some really rough times in my life.  I absolutely believe that when my time comes, I will be returning home to God.  I too am going to take a break from the forum, but as you say, we might well run across each other again one day somewhere on here.  Perhaps we will meet in Heaven?  That would be nice.  Like you Sarah, I never had any children, but that was from choice.  However, I do sometimes have regrets and think that maybe I should have had a child.......I think I would have been a good Mum.  My partner says that I would have been the best Mum in the world!  Sarah, I am very glad that you are going to phone your Dad.  You have every right to be in your parents lives, and your sister is very wrong to try to deny you this right.  Also, thank you so much for your very kind words regarding what my mum said to me when she was dying......you are of course absolutely right......she was on heavy doses of morphine by that stage and obviously didn't know what she was saying.  Anyway mate, I wish you well on this journey that none of us ever signed up for, and I am so glad that I was able to help you in some small way.........good luck to you, and I truly hope that you will be re-united with your mum and dad, and hopefully your sister too (if she is able to see how wrong she is).  Take care Sarah, and once again, THANK YOU for your very kind words, I appreciate it from the depths of my heart, xxx 

  • Well,  yes,  my  faith  has  always  been  strong,  like  yours.  It  does  help  me  maintain  a  sense of  peace and a  sense  of  humour.  Yes,  you  would  have  made  a  great  mum,  but  now  is  not  the  time  for  regrets...... I have  regrets too,  but  for  me,  I knew  at an  early  age,  having a  child  would  be  impossible.  Coloured  the   (bad!)  choice  of  men  I got  involved  with!  So glad  you have a partner   -   so much  easier  when  you  have  support.  Sorry  to hear  he  is  also  not  too  well, poor  man,  but  at  least  you  have  each other.   Sadly,  lived  alone  for 9  years  now - too ill to  even think of  dating!  Least  Jesus  loves  me!!!!!  Want  to hear  something  even  worse?  Dad   let  it  slip  that  they  have  given  my sister  full  power  of  attorney a  few  years  ago.    To  say  I  was  shocked  is  an  understatement.  She  really  is  so  untrustworthy  and  uncaring:  I can't  beleive  we  share  the  same  DNA!  Still,  it's  only  money, and I  cant  take it  with  me -  but  how  unfair!   It  would  have  been  nice  to  have  shared  in  any money  from  the  sale  of  thier  flat.....  could  have  used  it  for  my  favourite  charities. 

    Even  worse, sent  me  a  nasty  text  last  night,  telling  me  to  stay  away  from  mum  and  dad.  I didn't  read  it all - i hope  she  sees  it  as  unread,  but  apparently  I've  upset  them  both, and to   not  ever phone  them again.  Well,  now  I know  the  reason she  is  so nasty to  me -  she  has  full  POA  over  them.  Yes,  could  appeal,  but too ill to bother.    The other  thing  is  I  spoke  to one  of  the  nurses  yesterday -  not  allowed  to  tell  me  anything,  but  clearly  you  can't  get  EC  if  you've  had a  hysterectomy.  My  mum has  lied, which is  why  she  wants  me  to  stay  away.  As  soon   as  I  managed  to  gt a  glance  of her  discharge  notes,  and being the  'expert' on endometriosis,  i knew  she  had  lied.   But  still  a  mystery  as  to why  she  did and  what  exactly  was  her  operation 7  years  ago?  I  guess  I'll never  know.  It might  have  been  very  helpful  to know  if  she  has  the  gene  for  Lynches,  which  is  inherited.  Would  explain  my  illnesses, but  I've  decided  to  keep  away for  good  now.  respect  her  wishes, when  she  said  a  few  months  ago,  she  wanted  nothing  to  do with  me.  She  was  scared  I'd  find  out  she lied, and also  about  the  POA.    Isn't  life  a  mystery?  Anyway,  after  a  complete character  assination by both parents,  and  my  awful  selfish  nasty  sister,  got  to  leave  it  alone for  the  sake  of  my own  stress levels!  I've  done  my  crying, still  hurt,  but  maybe  God  will  help  my broken  heart.  I  just  wish I knew  what  I was  meant to have done!

    Lastly,  dying without  children:  hope  you and  your  partner  have  made  mirror  wills.  My problem is  my next  of  kin will  be  my sister once  parents pass.    I  have  to  find  a legal  way  to prevent  her being  my  beneficiary.   Had a  funny  thought  last  night,  hey,  find a  husband!  How though!  Wouldn't  that  be  hilarious  if   sister  found  out  i'd passed  and  thought  she'd  be  my  only  benificiary  but i  leave  it  all to  my  husband.....  I'd  have  to marry the  man to make  it  watertight,  since  knowing  her,  she'd  contest   any will, if  he  was  just  a  partner.   Hmmm, know  any  nice, Christian  single  men out  there who would  marry  me  in name only.  Been  celibate  for  years,  and  besides,  can't  'do'  sex  anymore,  so in  name  only!    So  long  as  he  can pull  a  pair  of  surgical  stockings  off, that's  all I ask ( ever  tried  to get  those things off on your  own? Hilarious!)    I  am  actually  being  serious,  Blue!   There  has  to  be  a  single  man  my own  age out  there, somewhere,  who  would  be  deserving  of  any money  I leave?     I ought to  start a  dating  site  for  cancer  patients!!!!  Oh,  if i only had  the  time,  and besides, am hopeless  with the  internet!!!!!

    Well,  it's  been lovely  chatting  to you,  Blue -  stay  in  touch,  but  think  it  good  you also  have a  break  from  here to concentrate  on your  lovely  man and your family and  friends.   I don't  know how  to  write privately  to you,  and  maybe you  don't  want  to,  but  in a  few  weeks,  I'll  be  on the  Bladder  site and the  Boob site.   Meanwhile, please  please  please get in  touch if  you  ever  need to  chat about  anything.  I'd  like  to repay  your  kindness to me - meanwhile,  find  me  a  husband  who  can push a  wheelchair and is also  celibate -  maybe  I  should  have  a look at  Prostate  Cancer chaps,  ha, ha!  Apologies  in  advance  to anyone  reading  this,  who  don't  get  Blue  and  mine 's rather  dark  sense  of  humour!!!!  Off  now, my dear!  Catch  you  about  in a  couple  of  weeks,  and  don't  you  dare  pass to  Our  Lord  without saying  goodbye to me!!!!!  ha, ha, ha.   Huge  hugs x