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New Diagnosis Peritoneal malignancy surgery

Hulse
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Hello

I am new to this group, looking for someone who is going through the same as me or has already been through this.  

My appendix burst back on mothers day ( not the best mothers day I've had).  But I wasn't prepared for what was to come.  I was discharged from hospital about 4 days later.  Took 3/4 weeks to recover at home.  This was only keyhole surgery. Then I thought my life was going to go back to normal..... who knew...

On Monday 8th April, I started a new job, all was going well, then Friday 12th April arrived, I get a phone call at 7am in the morning, from Lister Hospital, the bowel nurse, she tells me I have cancer...  Wow, that's one way of telling someone, What took so long to tell me, no-one said anything when I was discharged from the ward back in March, that something had been found.

So my journey starts my life start's spiraling...  I have a CT Scan on Friday 19th April, have bloods taken, the scan confirms not spread to my liver and lungs..

Then have a colonoscopy on 27th April. Nothing in the back Bowel.  Then I get a phone call from a nurse down in the Hampshire and Basingstoke clinic, arranging appointment with the consultant.

So I am just unlucky I get told, who knew the appendix carried cancer, I certainly didn't think of it...  So on the 9th July I will be going in to have a 5 hour surgery, obviously I am going to be cut open, then spend a couple of day's in ICU with a NG Feed tube, Stoma and Catheter.  The whole thing scares the life out of me.  I was hoping that someone could give me some advice what to expect what is going to happen after.  How long the recovery is?  Are you still being treated or has the cancer gone?  How did you cope?  I am scared if and when I get through this, will I ever be the same again, this whole process seems really overwhelming.  I know everyone heals and gets better at a different pace .  The more I read the more scared it makes me.

Thank you for taking the time to read this.x

 

 

 

  • Hi. Sorry to hear your news. I was diagnosed with Pseudomyoxa peritonei in August 2023. My abdomen was full of mucin by the time i had my op at Basingstoke on 21 September. My op was 11 hours long including 2 hours hot chemotherapy. I lost my spleen gallbladder appendix both parts of my omentum and my peritonium. Luckily my bowel was clear so no stoma. I was in Basingstoke for 4 weeks. I was only in ICU for one day abd spent 2 weeks in HDU. Recovery has been long and hard and can 6 to 12 months. I am almost at month 8 and consider myself on the road to recovery. I don't feel that I will ever go back to pre op normal. I have had an early follow up and am waiting for my CT scan results to come back. I expect them to show no evidence of disease. Please don't be scared about the op. It is long and it is complex but it will save your life. It is not like normal cancer as there was no after chemo fir me. Everything was dealt with during the op. I had several complications including blood clots on my lungs a chest infection and pneumonia which is why I was in hospital for 4 weeks. All of the staff at Basingstoke are wonderful and will look after you with the greatest care. Take care xx my thoughts are with you

  • in reply to Sallycat

    Thank you so much for your reply it is most helpful.  I am glad your are on the road to recovery, at least I have some sort of idea what to expect. I didn't think some how it would be a quick recovery.

    I will let you know what happens.xx

  • Hi, I went into Basingstoke last September, I had a full hysterectomy, my peritoneum removed, a tumour the size of a tennis ball removed from my bowel and appendix, plus a couple of lymph nodes and a few other things as well, I had CRS and HIPEC. Surgery took 8 hours, I didn’t need a stoma, but had everything else that you are worried about, I was in hospital for 2 weeks, but the time passed so quickly, 

    You can’t lift anything for 3 month, and only now 9 months later I am starting to feel normal again, so hang in there you will get through it.

    Best wishes

  • in reply to CPie

    I had my surgery on 21st September. We're you at Basingstoke then?

  • in reply to Sallycat

    I had my surgery on the 30th September.

  • in reply to CPie

    Thank you so much for replying.  Sounds you had a lot going on as well. I know that having a full hysterectomy takes time to recover from but having add others, must of been full on.

    Thank you for your kind words, Have you gone back to work? Do you feel like you or do you have a different out look on life now?

    Regards

  • in reply to Hulse

    Fortunately I retired last year, I’ve had two CT scans since my surgery, and both came back clear, I only need a scan once a year now, and bloods checked every six months for the next three years but you can’t help thinking that it might return, I just try to stay positive and push these thoughts to the back of my mind.

  • in reply to CPie

    My follow up plan was for 20 years!! CT scan and  blood test every year for 6 years then every other year. Then colonoscopy after 3 years then every alternative year.  Definitely keeping a check on me

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