Horrific diagnosis today

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Hi,

I went to the docs after a few weeks of increased weeing and latterly a bit of bloating and discomfort. I didn’t delay too long at all. I was told on Monday I has a prolapse and after an examination, was told there was nothing to worry about, but do a CA125 just to make sure.

Four days later I’ve had the most horrific result , my CA125 was 49,000, yes you read that right, 49,000. I was rushed for a scan and today  a cold and horrible GP rang me to tell me I had multiple nodules in the peritoneum and I couldn’t even understand what she told me about my poor beleaguered womb.

She said there’s nothing they can do,but  I was already given a gynae appointment at the hospital , which she didn’t know about and seemed in denial of ,as though it was a waste of time.

My poor family today, just horrific. I felt so much worse today than yesterday ,couldn’t eat, loads of pain, but I don’t know how much of that is anxiety.I think it’s hopeless and I have days left. That’s what she implied. 
I hope someone out there can talk to me. I am devastated.

  • HI Spongeit welcome to the forum. I am so very sorry to hera what is happening for you. First thing Monday morning pick up the phone and speak to someone at your GP surgery and explain to them what has happened for you, they should be able to get more information from the hospital for you.  It is disgraceful how this has been communicated to you with little or no explanation and left you  and your family in bits and at a weekend when there are fewer people around for you to be able to speak with. However, if you felt up to speaking with someone until Monday the Macmillan Line is open from 8am-8pm tomorrow if you felt able to speak to one of the lovely advisors there. 08088080000.  Please believe me when I say to you they are great and there is nothing that they have not heard before. It may help I hope in the interim just to know that others are there for you. xxx

  • Hope you are doing okay. 

    If any comfort my peritoneal cancer (secondary to bowl cancer) was caught before any symptoms but prognosis is still poor. 6 months life expectancy  I do have the option of brutal treatment that will destroy the quality of my life. In a way I wish I never knew so I could live life as normal until no longer naturally possible 

    Normal chemotherapy would only extend my life a few months. So it is a brutal road, with no guarantee. 

    I am grateful for the hope but realistically it may come at a very high cost and ultimately fail. Living normally without the knowledge may have been a blessing. 

    Peritoneal cancer has poor outcome no matter how early you find out.

    However still the option of a second opinion. Or perhaps request a laparoscopy. They would not tell me the extent of my cancer until that procedure was undertaken. Take care. 

  • I am so sorry to hear you are going through this . My husband is going through the same , peritoneal metastasis treated with chemotherapy. How are you getting on with chemotherapy?

  • Hello. I wanted to reach out to you as my husband is awaiting a diagnosis currently ‘cancer from and unknown cause’ however the cancer found is in the stomach lining so it is either ppc or it has spread to the lining from elsewhere. We’ve had scans done last week so I should know soon. 

    what is really worrying me is how poorly he is. In just a short two week period from having his stomach fluid pumped and a couple of days of seeming to be much brighter although still in pain, he’s gone downhill so much. He barely eats anything only comes out of bed to use the toilet and feel sick and in pain all the time, even with morphine and cocodomol. He’s only 47 and we’ve got three kids aged 6,8 and 12 and I’m finding this so hard to see him this way and not be able to fix this.

    how is your husband? Has he had any treatment? 

  • Hi Tuna Fish

    On Folfoxiri. So far working well. Will be assessed for HIPEC at some stage. Fingers crossed. 

    Hope it goes well for your husband.

  • I’m so sorry you are going through this it is just awful. My husband is young also and we have 2 children. He had colon cancer 18months ago . It has come back in to the lining of his abdomen now . He has lost loads of weight , he sleeps a lot. He has started chemotherapy the same as he had for his colon cancer . It’s just palliative chemotherapy this time , they will check if it’s working in 3months . Are children are 10 and 13. How are you coping? I cry a lot and am finding it so hard . About 4 weeks ago all he did was sleep a lot. He was in a lot of pain taking co codamol. The pain seems to have got better . He sleeps a lot but not as much. It took a while for him to be able to have the chemotherapy because of his bloods being out . Hoping it  gives us more time . He can not eat a lot at all, he went downhill quite quickly from

    end if May to June . I am so sorry you are

    going through this .

  • I’m sending you a huge hug. I really get it. We sound very similar although my husband hasn’t been through any previous cancer. It’s good to cry a lot and give yourself time to process everything. It’s just a completely rubbish situation and more so when you have to try to be normal for the kids. 

    I feel like I’m doing ok but can feel myself getting a bit narky with the kids and husband and then feel bad for it. Last night was the first time I made myself sit in the lounge once the kids were in bed, on my own, with a bar of chocolate and just music on. It was the first time since the initial diagnosis last week that I have really cried and I needed it. 

    im glad the pain killers have helped your husband feel more comfortable. How did he feel on the chemotherapy. 

    my heart honestly breaks for you, but do feel free to reach out and chat to me. 

  • Feel free to chat to me anytime as well. He tolerates the chemotherapy really well and did last time as well. Is tired for few days afterwards, gets difficulty with hot and cold things on his hands . I’ve been snapping a bit also at times and feel angry. It’s a rollercoaster of emotions isn’t it .I’m thinking of you and your family 

  • It certainly is. Let’s stay in touch. Thank you for sharing. X

  • Hello  I was trying to figure out how to send you a message rather than write on this thread but I can’t work out how to do it. Doh!

    just wanted to check in to see how you and your husband and family are doing. 

    chemo starts for us weds. Jon had a couple of weeks of constant sickness and another 7 litres of fluid taken away but now we seem to be on top of the nausea. We even somehow managed a trip to Anfield this weekend which none of thought would be doable but we managed and created a great family memory. X