They are now saying mum has peritoneal cancer (primary) and they will treat it the same as OC. Has anyone had this at all here?

The same consultant who told my mum last week it was OC grade 3c has now told her (before the biopsy arrives next Tuesday) that it is peritoneal(m) grade 3 cancer and it is primary. I am so confused. Should this consultant be saying any of this until they are 100% sure? They said they are going to start chemo and she will lose her hair on the first bout of it. I am so frightened and scared for her but will remain straong. Has anyone else here got this type of ca? Thank you all so much for your help and support since I joined yesterday. You are all wonderful. Much love to you all, love a frightened daughter, Louise xx

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18 Replies

  • Dear Louise. I have this but it is secondary. Treatment is the same as OC. This is a confusing and frightening time for both you and your mum. There are loads of women on this site who have been dealing with and getting treatment for a number of years. Stay strong. I was diagnosed directly from a CT scan the grading was given after my operation. The most important thing is that your mum is being looked after. All the best - Trish

  • Thank you so much trish from the bottom of my heart xxxxxx

  • Dear Louise,

    There are a lot of people on this forum diagnosed with this and yes it is treated the same, my guess is that the consultant is just trying to keep you informed... I wish all consultants were as informative as this... but some won't commit themselves in case people react in the way you are doing... as a patient I would far rather be put in the picture and kept up to date than being kept in the dark.

    Best wishes love x G x

  • Thanks again gwyn for replying. Your support is amazing. God bless you. Will keep you updated xxxxx

  • Hi Louise

    Poor you , this is so traumatic. I was also given several different diagnoses ...they are obviously trying to help but uncertainty is so hard to cope with. Try to keep busy untill you know for definite. Many ladies on here have primary peritoneal cancer and have been around for many years. Have you been assigned a nurse Yuriat all...if not you may want to call our Ovacome nurse who is wonderfully knowledgeable.

    So sorry , wished we could do something.

    Love and hugs xxxx

  • Thanks Charlie, but it is not poor me but my mum. If I could swap places with her I would. I can't bear her to be in this emotional pain....I saw her pain when my dad passed......I just wish I could help her and make it easier for her. I will always, always be there for my mum.....she is my best friend and she knows all my secrets and thoughts..... I am gathering peoples comments about PPC and OC so she can see that it is not the end of the world. Thank you sooooooo much for your support. I am so glad I joined this group yesterday. God bless you xxxxxxxx

  • Louise.. I have PPC which is an Ovarian variant. It's basically dealing with the same cell. Both Ovarian and PPC are difficult diseases to deal with for many reasons. I think you are beginning to realise that yourself. You'll find that you'll run the gauntlet of emotions as will your Mum but she has a lovely daughter who cares about her which will help. Just being there and listening to your Mum will be a comfort and letting her make her own decisions and go at her own pace will make things a little easier to cope with. Like Gwyn, I'd rather I had honesty and information from a consultant than be kept in the dark. It's a confusing and strange time but we're here for both your Mum and you too. Love T xx

  • Hi Louise, I have primary Peritoneal cancer and yes it is treated exactly the same as Oc. It is difficult to diagnose as a primary and my first diagnosis was OC. I was diagnosed August 2012 and have had Chemotherapy and surgery. Yes I lost my hair but it does grow back and wasn't too bad. It is scary but oh so much easier to deal with if you have great support. I have two lovely daughter and they have been there every step of the way. You will have many many emotions but come on here and share and you will get so much support in bucket loads. Lots of love to you and your mum. JacJac xx

  • Hi JacJac, thank you so much for your can't believe how much I appreciate it. They said, well, at the moment, they can't operate but I can't see how they can say any of this until we know for sure on Tuesday what it is all about. I will keep you all updated and i am sure I will have many more questions to ask you all soon. I am soooooooo glad I have joined this group. Thank you all for your replies. I wish I could meet you all personally and give you all a big hug. And Tina b thank you so much too. I so appreciate all your responses and sorry if I don't mention you all personally but I am forever in your debt. Thank you and I will keep you all updated and hopefully get my mum on here eventually to get all your lovely support. Thank you so much ladies. My sincere thanks and love, Louise xxxxxxxx

  • Hi Louise, sorry to hear.I hope my story will help as it comes as such a frightening diagnosis I was diagnosed with primary peritoneal cancer last summer. Mine was stage 3 c and inoperable - it was in too many places to remove without removing my whole bowel . However with a standard 18 w course of chemo ( same drugs and regime as ovarian cancer as behaves in same way ) it completely cleared by the end of the treatment. 6 months later i am still in remission, with no evidence of disease .

    Do hope the appointments go well and you and your mum feel able to ak everything you want. It comes as such a shock, but that settles with time

    Love to you both , Hilary

  • Hi Hilary, That is fantastic news!! I am soooooo pleased for you. I am going to show my mum all the replies on here so hopefully it will keep her positive. Much love to you. Louise xxxx

  • HI Louise I was diagnosed December stage 4 advanced PPC just finished 1st line of 6 cycle of chemo mine is inoperable but have got scan tomorrow and ca125 count as dropped drastically so hopeful it's keeping it at bay it is a horrible time for you and your mum but be assured the doctors will do all they can to help in my thoughts babe x

  • Thank you everyone for your kind words. I have just spoken to my mum and she is in tears. Her partner is getting cross with her for crying all the time and my mum said to me that he is shouting at her. I spoke to him and told him that she needs to cry and go through the stages. then she will become much stronger. I am quite angry with him at the moment for getting cross with her for crying. I am the only one who REALLY understands my Mum. I am very strong when I speak to her on the phone and don't get upset until I put the phone down. I am going to spend the day with her tomorrow. She is rather concerned that her tummy is out of shape after the laparoscopy. I am sure this is to do with the taking of the biopsy but she said she is finding it a bit difficult to walk too far at the moment. Is this due to the operation? Thank you all once again for your kind words and I am so pleased that you are all getting good results from your chemo and treatment. Love to you all. I will show my mum this site tomorrow and perhaps get her to talk about it. Thank you all once again from the bottom of my heart . Louise xxxx

  • What a tough time... it does get better when everyone knows what they're talking about......

    Worry and anxiety take us all in different ways, including coming out as "cross" - I doubt whether that's really what your mum's partner's feeling... but you're right, she needs to go through the stages of getting her head round this herself, even if it makes others uncomfortable. For some of us it's crying, for others it's sitting blankly and numbly. Quite a lot of us on here would probably recognise that what we did wasn't easy for our partners.

    Stay strong and all the best to you both. xxx

  • Thank you so much for your reply. Mum is numb and blank and crying - all three! We just have to stay positive and look forward to the future when all this chemo is over. Thanks once again xxxx

  • Hi Louise this is my first ever post on here, I have just returned home after my 2nd chemo session for PPC and OC. I had a laparoscopy in March and biopsies taken and that was when I was diagnosed with PPC & OC stage 3c. My stomach was very sore and bloated and I was in agony but after a week it started to go down and the pain eased. Tell you're mum that I had a hot water bottle every night and it really helped. Your mum is a lucky lady to have such a caring daughter, take care Pam x

  • Hi Pam... just to say hello... . I'm glad your pain has eased and things are a little better for you. (Apologies for the interruption to Louise's post but I felt Pam's entrance couldn't go unacknowledged) xx

  • I totally agree Tina - I was just about to answer as your answer came up! . Thank you Pam for your kind reply. I will tell my mum to use a hot water bottle. I too, am sooo pleased your pain has eased. Take care. Louise xxxx

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