Primary Peritoneal Cancer (PPC)

I had a meeting with my consultant today. I had a CT scan almost 2 weeks ago and whilst there were no cysts on my ovaries there was some spotting and shadowing on my peritonetum so I have been diagnosed with PPC.

I see the oncologist next Monday to discuss chemo. I'm thinking about giving up my job and moving back home to live with my mum.

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  • Hello!

    Sorry to learn of your diagnosis - you will be in a horrid shock at the moment. It sounds as if there is a lack of certainty about what your scan shows, so now is a time to formulate the questions to ask of the Oncologist.

    Firstly, is there someone you would like to come with you - someone who can take notes and remember what was said? When we are diagnosed with cancer life goes into a spiral of fear and panic (often), so it's important to get information and corroboration, as you'll soon start not believing what you heard if you are anything like me! You will probably be asked to make decisions about chemotherapy with very little information, so ask, ask, ask, and don't just sign up for anything you are not happy about. Did they assign a Specialist Nurse to you? If so ring her and talk about your fears and any big decisions- it's what she's there for. If not, ask for one!

    As to your job; your employer has to protect your job, and cancer is an illness which is the subject of anti-discrimination law. Talk to your employer about taking a length of time off. If you have chemo, it might well be for several months and you might not feel able to return to work fully for up to 2 years afterwards, so if you retain your job, you might be in a better position. Of course, if that is not important, and returning home is, get your GP on board as you might (I expect) need financial support from the state.

    Very best wishes with all of it. You can get through this, and there will be very positive aspects too (surprisingly). Get hold of some support, energy and information, and start working out and demanding what you want!

    With love,

    Isadora.

  • Thanks for the excellent advice. My diagnosis isn't just based on my scan my CA125 levels were high, I had ascites and analysis of the fluid found adenocarcinoma cells but there was no cysts on my ovaries and my pelvic exam was normal. I also had a MRI on Monday and more blood tests to make sure it is not in my colon.

    With regards to work I don't particularly enjoy work and I live alone and right at the other end of the country to family and friends. I also don't have very much sick leave left as I was off with depression a couple of months ago so pretty soon I would be down to occupational sick pay and having to claim benefits anyway.

    I am in shock and today was my grandmothers funeral. I'm not sure where my grief for her started and my own grief ended particularly as she died from stomach cancer

  • Of course your grief for her, and for yourself are inextricably linked. I'm sorry to read of her death, and you will need to grieve for her too, and for the changes in your own life that are now necessary. The difference is; you can find a way for your grandmother's loss to spur you on to overcome the problems that beset you. I'm sure she would have wanted her illness to motivate, rather than undermine you!

    Clumsily put, but I hope that makes sense.

    Thinking of you with love,

    Isadora

  • It does make sense and I want this too. I was inspired by my cousin who came along to my recent appointments. She has ME and she said that at the time of diagnosis it felt like the end of the world but looking back now 4 yrs later she feels like it was the best thing to have happened to her as it took her life in a completely different direction.

    My nanna would want me to come home.

  • I really know what your friend means! I have often (from the exhaled position of being in remission!!) thought 'if I'm honest, cancer is one of the best things that ever happened to me'.

    I was in a job which I loved, but despite being in the caring professions, colleagues used my illness and absence to make me redundant and protect their jobs. I lost many 'friends', but have discovered other - real - ones. I discovered my true needs and priorities, and put them first, thinking that time might be short! I now do some work on a s/e basis, and have a life I enjoy.

    These shocks give you the permission to see some things more clearly and grasp nettles you've been putting off grasping.

    Go for it, if you want to go/come home. Essentially, it was what I did, and I couldn't be happier. And later, if it turns out you want to head out again - you can and will.

    Big hugs,

    I.

  • I'm so sorry to read your comments, especially with today being your grandmother's funeral. It would have been a difficult day whatever is going on in your life. Isidora has given you some good advice -- especially about enlisting the support of a specialist nurse. Mine was a real tower of strength and I'm still in contact with her, 8 years on. They are amazing people, there to help in many ways. I can quite understand your instinct to move back to be near family and friends. It's so important to have people who can cheer you up and help you when you are having your treatment. Also, I found the Penny Brohn Centre very helpful. They support people with cancer in many ways and the website is well worth a visit. I got a tape of relaxations, visualisations and meditations. I think they now do a CD to support if you look on their shopping page. I found that the tape was comforting and really helpful in relaxing, especially when my mind was working overtime and I couldn't sleep. It never failed me! The website is well worth a look.

    Keep in touch, too, through this site. It's good to let off steam, share thoughts and hopes and fears. There's always someone who can send you good wishes. I'm sending you positive vibes, thoughts etc. Let me know how you're getting on

    Love, Wendy x

  • Thanks Wendy I forgot to mention that I was assigned a MacMillian nurse at my very first consultation and she has been brilliant.

  • I went to Christies today and basically they are not confident in my diagnosis so I'm seeing a gynecologist tomorrow and sounds like I'll be going through the diagnosis process again. On the one had I think its right to get a second opinion but on the other hand I hate all the waiting and uncertainty especially as I've made radical decisions based on the understanding that I had cancer and was going to be having chemotherapy

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