rather confused re ovarian cancer stage 3

1 minute read time.

please can anyone help, i was diagnosed with secondary peritoneal cancer in 2009 suspected primary ovarian cancer but couldnt detect tomour,i finished chemo in jan 2010, had regular check ups with oncology and gynae every 3 monnths, please note not even secondary was picked up on ct scan was only found after pathology for an emergency op on bowel. c125 level was at just 19 end of oct 2010 although ct results wernt avalible, i had a call week later asking me to go n see gynae consultant who adviced that some cyst were getting bigger on ovarys and suggested a total hysterectomy which i had on 10th jan 2011 on my consent form it said to relieve symptoms n diagnostic, left hospital again had a phone call requesting i go to hospital to see gynae consultant in his office , who said i dont know how to say this then said cancer, i said its back n his answer was i believe this was the primary n it was never gone the chemo i had may have shrunk it but once chemo stopped it started growing again, i asked had he suspected cancer during op n he said no he showed us pathology report n it said stage 3 ovarian cancer , he said he would arrange a mdt meeting but it would probly mean more chemo, now today oncology nurse said they may not give me any more treatment and this is my question why wouldnt they give me chemo please help im worried sick thankyou for reading this i havent half gone on but need to explain it all, love to you all xx

Anonymous
  • FormerMember
    FormerMember

    Hi Julie,

             I can understand how worried you are and you need to have answers now for your own peace of mind. Phone your hospital and ask to speak with your consultant. If he is not available, say why you are ringing and what you need to know and ask if they will ring back. Keep asking until you get the information you need. I don't know all your circumstances but I see no reason why they would not offer more chemo. I was diagnosed with stage 4 ovarian cancer in 2007 and have had three lots of chemo in four years, (carbo/taxol). In future, I would hope to be offered more should the need arise.

          I hope you get the answers to your questions very soon.Please keep in touch and let us know how you get on.

          Take care ,

           Very best wishes,

                lizzie xx

  • FormerMember
    FormerMember

    No wonder you're confused.  I think you need to do three things.  Firstly ask the hospital where you were treated why you weren't debulked when the peritoneal cancer was diagnosed.  Ask for your records.

    Secondly get a second opinion from a major cancer centre - London or Leeds.

    Thirdly contact AVMA, Action for Victims of Medical Accidents.  It's - as far as I know - standard procedure to operate (debulk) with peritoneal cancer.  It's dubious in the extreme not to explore surgically.  Ovarian cancer can spread in sheets that can't be seen on scans.  It may be that you had negligent treatment initially.

    I know that is little consolation, but I hope this helps.  Of course you need to have chemo - many women with PC/PPC have many courses of chemo.

    I wish you all the best.

  • FormerMember
    FormerMember

    I think you need a full explanation from the begining with somebody else present that can ask the questions you may not think about.  A specialist Macmillan nurse would probably be able to help you decipher all the information, but I think another opinion should be sought.  It seems a bit like your medical team are confused.  My onc says he will give me chemo as lomg as my body will take it and it improves my quality of life.

    Good luck with getting it sorted.

    Viv

  • FormerMember
    FormerMember

    thaqnkyou all so much your kind words have made me feel so much better, i feel totally let down by my local hospital , to be honest i feel i am strong enough to go through more chemo and everyone says how well im looking, im going to ring the hospital back 2day n see if i can get some answers to my questions ,thankyou all once again,wishing you all the very best love julie    will let you all know how it goes xx