Help please

Hi I am writing on behalf of my mother- she is 80 and a fighter - she was diagnosed with ppc in November - she has had 3 sessions of chemo - which in itself has been difficult - she couldn't stand the taxel - anyway yesterday the Macmillan nurse rang to say that they would not do the debulking surgery - there had been some response to the Chemo but the distribution of the tumors meant surgery was difficult. Devastated and frightened are 2 words that spring to mind. She is to go on with some more chemo - I have no understanding at all of what is going on or what I can do to help her - is this it? 3 more sessions and then goodbye - the hospital said she will see her consultant on Monday ..... That's nearly a week of agony and anxiety - do I seek a second opinion ? Do we do more chemo to see if she can be operated on I don't know - my mother is low - can anyone give me advise please?

16 Replies

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  • Hi, I too was diagnosed with PPC and they refused surgery for me after the first 3 chemos due to the spread and loxation I was taxol & carbo also however after 3 more sessions (6 on total) they did operate as things had shrunk enough for them to go in. When you go to the appointment have all questions you and mum want to know i found this so useful as my mind would go blank and having my notes kept us on track xxxx

  • Hi - thank you for your reply - we will keep going - I will keep you updated back to the consultant on Monday xx

  • It might help to ring Ovacome as their nurse specialists are very good at explaining these decisions and helping you to formulate the right questions.. I am sure they would know how to go for a second opinion.

    I can only add that from my experience the surgical team know that they only have one go at debulking surgery ...so they do it when they know they can get the most out all at once...so don't despair. XxxLyndall

  • Lyndy thank you for your reply - I need to understand the regime but the collective responses have been marvelous - I will keep you posted xx

  • The chemo will be reviewed on a regular basis, it's not here's your cycle all done now and that's it. They will explore alternative treatment, and many people have complete or partial remission. Try not to worry and let the team do the work, they will be working for your Mother's best interests. You could call Ovacome or Macmillan for a chat and some reassurance.

    Good luck

    LA

  • Hi there .. I have PPC too and wasn't offered surgery. I'd had a hysterectomy anyway, but I'm told surgery wouldn't have been an option in any event.

    Surgery isn't without its own risks so, on balance, the specialist may have thought chemo alone was the best option. It doesn't mean to say that the chemo won't be effective though. Your mum may have a very good response.

    I was wondering if your mum has been offered a laparoscope so that the growths can be biopsies?

    I agree that Ovacome's nurses may help you think things through. There is a free helpline. Xxx

  • Hi - thank you for your help - it's a frightening voyage but I will ring tomorrow to obtain as much information as possible

    Thank you for your supportx

  • Hi. I was diagnosed with stage 3c PPC in 2011. I was never offered surgery and was treated for 6 months every 3 weeks with Carboplatin and Taxol which I responded to thankfully. They only want to see me now every 6 months and I'm hoping it stays like that. I do worry that I didnt get the debulking surgery everyone on this site talks about so I hope that I am on a winning team. I tell you my story to give your mother hope . However do ask all those questions at your mothers consultation . You have written all those questions in your post so please write them down so you can remember. The anxiety and worry is part of all our lives who suffer from this disease and for loved ones like yourself. If you can find a support group in your area it would be good as you can share your worries. The best of luck and Let us know how you get on

    XXX

  • Thank you for bothering to reply -I am reinvigorated for and on behalf of my mother and will keep the updates flowing x

  • Hi my mum has ppc , diagnosed may 2014 operation wasn't an option for her either so she had 18 sessions of carboplatin and taxol then was put on avastin this kept her stable until August this year , she started carbo again in September but this isn't working so she is going back to carbo/taxol again starting this week ,18 more sessions, so there always hope. She's 77 in April and I never thought she would make it, but she's still fighting and prepared to carry on., hope your mum does the same.

  • Thank you for your thoughts - we will keep fighting - tough but let's carry on - so relieved it's more than one session!

    X

  • I would just like to thank you all for your responses - I am so pleased that you felt you could share - will keep you all updated - I am going to ring tomorrow - let's keep fighting x

  • You are so welcome. I will look forward to positive news of your mother. She is lucky to have a loving daughter ( or son maybe ! ) who cares. Take each day at a time . I do find that living in the moment really helps and I learnt thst by doing meditation in my support group. Take care. There is always someone on this website with a word of encouragement.

    XXX

  • Hi. Could someone tell me what Ppc is. Thanks

  • Primary peritoneal carcinoma

  • Just wanted to wish you and your mum well . Hope the responses here have reassured you . It's all so new and daunting And hard to get grasp of as well as going through the shock of a diagnosis. . I'm sure your phone call with ovacome nurse will help a lot .best of luck

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