any advice on what to do next? My mum has just been diagnosed with PPC and the doctors at our Hospital have already given up?! HELP?!

My mum is 61 years old and this has come on very very quickly. She has been in and out of hospital for the last two months, originally with pneumonia which we now realise was fluid in her lungs from the cancer and a blood clot. Before this she was healthy. Four weeks ago she was diagnosed with Primary Peritoneal Cancer (a form of ovarian cancer in the lining of the stomach). They said it was inoperable but when she was feeling stronger they would chemo and there was a high chance of putting it back. Three weeks ago she got a clot on her lung which they have now said should have killed her but she survived and is breathing normally again. She started to get stronger then started to be sick and the response was to stop her eating solids and put her bowel to sleep to relax. Now it seems her bowel is obstructed but we cannot get a straight answer from the doctors as to where (is it one blockage or several/is it the actual bowel or the intestine leading to it/will the bowel restart?!). Last week they said they would restart her bowel, give her chemo on Monday and then send her home later this week. On friday we were all called into her room and told she had less than a month to live?! She has got weaker and weaker because of no food and the hospital say she can eat but dont give her anything with nutrition, only a saline drip. We refuse to give up so quickly and are looking for anybody with any experience of this who can suggest anything or knows a specialist that can help?!

12 Replies

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  • So sorry to hear about your Mum. I would give Ruth a ring on 08453710554. She is a nurse with lots of experience of OC and the treatment options. There may be some mileage in asking for a second opinion, but I am no expert. I wish you and your Mum all the very best. Remember that there are as many outcomes as there are women and there is often an answer where you least expect it. Good luck

    Love Wendy xx

  • thank you so much for the advice, I will ring her first thing in the morning and my family are at the stage when we will keep going with opinions until someone can actually help so we will try for a positive outcome.

    Thank you again

    Amalia xxx

  • Hi amaliag,

    I am so sorry that you are going through this terrible time.....you could give the OvaCome helpline a ring tomorrow..and ask their advice they are very good tel 0845 371 0554 normal office hours and speak to Ruth Payne..I take it that as you enquired about Leeds or Christies that you might be local to me I live in Chester.. but went to the Women's Hospital Liverpool and had chemo in Clatterbridge...ScardyCat had a second opinion in Leeds with Tim Perrin but she goes to Christies I think she found Leeds very good...I think a Secon opinion would be the wat to go....best wishes love x G x

  • Thank you for those suggestions, we need second opinions but had no idea where to start asking, so thank you. Not local at all lol (we are down in Devon) but that it not an issue, even just sending a doctor the scans and notes to get opinions is better than nothing. Anything that will help. Will definitely ring the helpline, am amazed at how many incredible people there are on this site, so look forward to talking to Ruth,

    Thank you again

    xxx Amie (amalia)

  • Hi Amie,

    I am sorry with you mentioning Leeds or Christies I thought this was the case..lots of people have gone to the "Royal Marsden" in London and they are experts in OC...I have read people mention "Addenbrookes" as well. there are experts nearer (I think these are nearer) I wrote my first answer the same time as Wendy... so sorry that I am giving the same advice love x G x

  • By the way pears are good for constipation..it is worth a try my doctor adviced me to cut them in strips and eat as finger food to my surprise it worked xx

  • no worries for replying with the same, all replies are appreciated and thank you for mentioning those closer as well, it's giving us lots of names to contact for other opinions. and also brilliant advice for pears, am gonna try and introduce it tomorrow with mum, she may only be able to have them mashed up or pureed but still gonna have same effect i hope. :) thank you very very much xx

    Amiexx

  • Hi!

    I think there may be a centre at Bristol!

    I was 69 when diagnosed 3 years ago! I had problems with constipation and had to call on the district nurses who gave me enemas and recommended Movicol, which works like a miracle! I also eat lots of fresh fruit including pears and fresh pineapple which stimulated my salivary glands.

    I have found staying positive helps but it is easier said than done!

    Good luck!

    M xxxx

  • Hello Amie,

    I'm sorry - I don't really have any advice to offer, other than what has already been said. I'd just like to sympathise with you and your Mum at this frighteningly worrying time and send positive good wishes to you both.

    Love and (((hugs))), Solange

  • Just to say I hope you get some answers from Ruth today love x G x

  • thanks all, have contacted Jo at ovacome and she has already got us in to see a nurse who was mysteriously taken off mums case about three weeks ago. so now we gotta wait and see what the exeter specialist says today and if not, then take it further. But in the meantime, the whole thing rests on the small bowel waking up even just a little bit so if anyone knows any way of doing this in the slightest, please let me know. any suggestions greatly appreciated.

    Amie xx

  • Have pmd you

    Marilyn

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