So, so worried....PPC advice please xx

Can anyone tell me of their experience with PPC please?? My mum said today that her nurse said it was an aggressive one and I am so upset. Mum is also talking about getting her affairs in order....which I know at some point you have to talk about but I would never, ever be able to live without my Mum. She IS MY WORLD.

Thank you

Louise xx

Ps she is about to start second line chemo

23 Replies

  • Hi. I was diagnosed with stage 4 PPC in March 2014. I was 39 and the prognosis was very poor. Here I am still kicking around with no visible evidence of disease. I had chemo and radical surgery. If you need to get a second opinion. That's what saved my life xo

  • Brilliant Julie. Can I ask where you got your second opinion!

  • Julie has gone on holiday now. I'm sure she won't mind me telling you it was through The Christy in Manchester where she saw Prof Jayson. Ann

  • Hi Ann,

    Thanks for the reply. I am a Mancunian where my family still live although I live in Doncaster. I am a low grader. I am wondering whether the expertise of The Christie would be a more appropriate hospital for me, particularly if I should require any treatments, bearing in mind that I'm a low grader.

    Would be pleased for your opinion.


  • hi Gwen, I really don't feel qualified to advise. I live in NI, as does Julie. She ended up there because the surgeon she saw at our local hospital gave her no hope. He didn't even refer her to the hospital where I was treated, the main Cancer Centre. She went private to see Prof. Perhaps the nurses on the Ovacome helpline could advise you. All the best. Ann x

  • Hi Ann,

    Thanks so much for your reply. I will contact Ovacome.

    Best wishes, Gwen x

  • Hi Louise. I was diagnosed with stage 3 PPC in July 2013. I had radical surgery and chemo therapy. I was in remission until January this year and have since had a further 6 sessions of chemotherapy. After seeing the Consultant last Thursday, I am thankfully in remission again and will hopefully be around for a long time to come.

    As for your Mum putting her affairs in order, it may be what she needs to do so that she can focus on getting through her treatment and getting on with life. Although it may sound morbid, but a big worry for me was how my husband would afford to "deal with me " when the time came. I have since taken out a funeral plan and now feel a lot more at ease with everything. It may be the same for your mum. If she feels happier with getting the necessities out of the way, as a family, you will all ultimately feel the benefits.

    Regardless of what your Mum has been told, remember that everyone is different in how they respond to treatments, and there are new drugs being developed all the time. There are numerous ladies on this site who are still going strong even after being given a poor prognosis. Try and keep strong for Mum even though it's difficult for you. My very best wishes go out to you both and hope Mum gets a good response to her next treatment.

    Ali x

  • Exactly what Alikay said!! As my oncologist said to me in the beginning..."Statistics mean nothing, unless you are THAT number" Everyone is different and everyone responds differently. Best thing you can do, is support your Mum in the things that she feels she needs to do. Support her as she receives a second opinion.

  • My Dear Louise will you PLEASE stop worrying about me so much! I am getting on with this and could not wish for any better treatment and care. There are so many people much worse off than I am - just look at me!

  • Sorry mum.....can't help it. Thanks ladies for your replies! Xx

  • Louise (and Joan), PPC is nearly always aggressive, as is OC. It's high grade serous, but I am learning, as many of the other women here already have, that it doesn't mean an immediate end! On the other hand, It can be helpful to get some tough things sorted out, to free you up. I visited a funeral parlour, a few weeks ago, which was quite liberating. I can't believe how expensive funerals are, and am hoping I can leave my body to science, if they'll have it!

    I am stage 3c, had surgery last summer, then chemo till January. The cancer has come back, already, after four months, and we are now trying hormonal therapy. So many women here, like Ali, have written with great experience on how to cope with the uncertainty of this type of cancer, and I admire them, hugely. It's a steep learning curve. Good luck xxx

  • Dear Louise and Joan, I am in my second remission and having wonderful summer holidays with my children. They are everything to me and since i have had cancer I have come to realize how much I am to them. I am surrounded by love and their lives give mine meaning, normality and joy. AND I have made a point of putting my affairs in order. As a parent one always hopes to be the one who goes first whether sooner or (with luck and a following wind) later. I want to ease their passage through life, whatever the future brings, just as the want to ease mine. For us this is a joint project. They have asked and I have explained to them everything I have done and told them where to find the papers. The practicalities have never stood in the way of love. We see them as a form of love.

    For the nitty-gritty there is an invaluable little booklet published by Compassion in Dying. I found it a useful check list. It is not about assisted dying. That is not our objective in this family.

    I realize you may find this a bit blunt. We all approach these things differently and I apologize if you think me intrusive. I can see that you both think the world of each other and are finding your way as we all do. Whatever your choices, keep using this site. We are here for each other. Love, Liz

  • Dear Louise and Joan

    The diagnosis of cancer has far-reaching effects on friendships and family relationships and this comes on top of the practical issues women have to deal with on discovering we have an incurable cancer.

    Time is a great healer and each person in the complex pattern of relationships needs space to come to terms with their feelings and fears. I discovered after diagnosis that I had to be very selfish and I had to look after myself and what I needed to do to survive and adjust to the disease. Only then would I have the capacity to consider the effect it was taking on my loved ones. I think it's important for our supporters to seek support but at the outset the person affected by the cancer isn't necessarily in any state to provide this.

    I had the same reaction as your Mum in that I wanted to sort out my affairs but it doesn't necessarily mean that life is about to end. I have lived four very full and happy years since my diagnosis and I have derived comfort from feeling as though things are as well-organised and as thought-through as they can be.

    Louise please do consider what sources of support you might access in the short term in order that you can make this time with your mum as good as it can be and relieve her of the burden she will feel with her diagnosis of cancer. It is worth ringing the Nurse-Led line at Ovacome, 0845 371 0554. There is also a great support line at Macmillan: 0808 808 00 00 which my daughter said were very helpful. There are a number of physical resources too such as Maggies Centres that you can visit to talk through your worries because at the end of the day I know you will want to prepare yourself to provide the best support possible for your mum.

    Sending love and hugs to you both. We are all there for you. xx Annie

  • Hi I'm 45 with stage 4, grade 3 oc. When I was first diagnosed in February all I wanted to do was get my affairs in order. For me it was about taking back a bit of control when I had none elsewhere. I did enough work so that I know my options if the disease progresses. It was very very hard for my family, particularly my mum and sister but I found some friends who could see it for what it was. I also cleared the house, a big spring clean, with my sister. Lovely to spend time with her and I felt so much better with all the unnessecary clutter gone. However I have no intention in going anywhere anytime soon, too much to live for! I'm really saying we all do what's best for us and it doesn't mean we've given up, quite the opposite. Xxx

  • Thank you for your replies but Mum is NEVER EVER going to give up and some of your comments even though are heartfelt have been a little unsettling. My Mum is STRONG and will NOT let this bastard disease beat her......we will beat the arse out of IT. My Mum is the STRONGEST woman I have EVER known and to be honest I don't need to hear about funeral parlour visits and all that. My Mum and me have been through all that shit with my lovely Dad and my dear grandparents in the 1990s. I am sorry, but all I would like to know is how you lovely ladies have coped with PPC and how long you have had to endure it. Sorry if I have upset anyone but this bastard disease will NEVER beat my Mum because she is a real fighter and albeit my Dad is in Heaven, he will make sure she does too. Thank you ladies xxxxxxxx

  • Sorry if I upset you, Louise. Everyone has their own way of dealing with things, and that was just my story of how I cope. You will have your own, and have a good rage!

  • Hi, sorry I was so upset last night. Please accept my apologies. We all deal with things differently . God Bless xx

  • You haven't upset me. I've done my own arrangements. I quite understand that your rage is against the disease. Xxx

  • Yes it is Tina.......just sooooooooo angry at the moment but we will all beat it. Positive thoughts to you and my Mum! Xxxxxxxx

  • Thank you so much Annie for telling me your story. I wish you all the best in the future xxxx

  • Hi there, if you need to talk and want to message me please do.

    I didn't want to reply as I lost my mum to OC, 6 weeks after diagnosis in 2013.

    I can tell you are in a very bad place at the moment and I feel protective towards these ladies. I remember the fear and physical sickness I felt. I remained positive for my mum until the day I lost her, I felt she had enough to worry about and to see me break down in front of her was not going to help her- she was very scared, I did though when I went home. I was 43 and my wonderful mum was 67.

    My Dr was very sympathetic and gave me various prescriptions to help me cope, have you tried that approach?

    I miss her every hour of every day but I am ok and have found strength that I never thought possible.

  • Listen, everyone is completely different, I have been living with metasticized stage 4 for 11, count them, 11 years's being treated as a CHRONIC disease, much like diabetes or such. Cancer is NOT a death sentence, just sort of a pain in the ass! We all have something to bear and now your Mom (I'm from America...can you tell) will just go thru and put up with it. Got so use to going for chemo that it was no more traumatic than going to have my nails done. It is now a part of life...hear me...LIFE. Live on and enjoy. Don't even think about dying.... that's stupid. Think about how happy you are that she is alive and in your life. Best part about having cancer is that it gives you so many good excuses for not doing something you don't want to"Oh, I'd really like too, but I'm feeling a bit tired today"...they all buy that one....and then....gobs of great cancer jokes! Yeah, some people have died, but those are the ones who took cancer seriously...get it?'s just a bad joke....once I got that...I laughed and went on with my will do that too! Love to your Mom (Mum?)

  • Thank you Hannah for your positive reply. I have stayed away from this site the last week as I have been so upset but you are RIGHT!!!!!! Mum is having the fluid drained today as she is so uncomfortable but once that it out of the way and she starts chemo she will feel so much better! And yes I did guess you were from the USA!!y sister has been living out there for years!! Thank you once again you have made me feel soooooo much better! Lots of love xx

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