Presacrel tumour

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Hi I has anal cancer which went into remission in November 2021. Since then I have had issues with leakages and bowel sometimes feeling as though not emptied from radiation damage but was managing. They have now found cancer which is residue from the anal cancer on back of rectumnear lower spine. They said they can operate but as complicated will be newcastle. However despite numerous calls not getting anywhere as when they are going to remove it. Now getting pain in my coccyx especially on a morning which eases when I go to the toilet but now finding I am needing to to go alot during the day having leakages and having to massage anal area to go it's then mushy and sticky with weird smell and where anal cancer was seems to be a space that takes me ages to wipe clean.  Has anyone else gone through this

  • Hi  ,

    I’m really sorry that you’re facing another battle with this god awful disease! 

    Although I don’t have experience of your situation I didn’t want your post to go unanswered & replying will boost your post back to the top. 

    You've mentioned that the surgery you’ll be having will be done in Newcastle, will this be at the RVI? I’ve been under the colorectal team there since my diagnosis & have always found them really good where information & communication etc., is concerned. Mr surgeon there is Mr Coyne & if I have any concerns I just give his secretary a call & she’ll email him & usually gets straight back to me. Haven’t they given you even an idea of when this surgery will take place? If you haven’t already done so I would make them aware of your worsening symptoms & don’t give up until you have something concrete in place.

    Sorry I couldn’t be more helpful.

    Nicola 

  • Hello Sinbad1965

    I am also really sorry that you have more treatment on the horizon.  I had a quick look at your history and you really have been through the mill, without this added issue.

    I don't know anything about your type of recurrence but it must be so frustrating not knowing when this is going to be operated on.  Forgive me if you have already tried all this but have you tried ringing the team who said they can't operate and well as ringing Newcastle.  Sometimes (inexplicably in my view) transfers between hospitals can cause delays, and perhaps if you ring every department in the chain between hospitals someone might give you an answer.

    The best of luck in getting this sorted out Sinbad65, I hope you hear back very soon.  Keep pushing.

    Irene xx

  • Hi Sinbad,

    Nothing practical to offer, I'm afraid, but just wanted to pipe up and add my support. I'm so sorry you're facing this, after all you've been through and overcome. I hope your team is able to give you a clear path forward and move on it promptly. 

    Hugs

    Suz

  • Thank you for the support it has been referred from middlesbrough to Dr coyne so pleased to hear he is good 

  • Thank you it's nice just getting some support I have always just gone one day at a time it's pointless worrying and with my history has proved a good way of coping 

  • Thank you just getting support helps and brings a warm smile 

    Ian

  • Hi again  ,

    I remember visiting my GP shortly after my diagnosis & when I mentioned I was having surgery she asked who I’d been referred to, I told her it was Mr Coyne & she said he was a registrar when she was in medical school & said I was in very safe hands as he was at the top of his game. He’s always been great each time I’ve seen him, explaining things thoroughly & is very aware of the enormity of the situation from the patients point of view, which can’t always be said of some Dr’s, I think many are so used to dealing with chronic illness that sometimes any bedside manner or sympathy for the patients situation goes a bit by the wayside. 

    Nicola 

  • I will try and get hold of him tomorrow thak you it's reassuring

  •    check your messages, I hope this might help you get through to someone a little quicker. 

    Nicola

  • Just to let you know I had my surgery on the 03/10/23 by Dr coyne. Plastic surgery and spinal team at the RVI in newcastle. My anus. Rectum and lower colon have now been removed and the whole area reconstructed. I now have a stoma. The main thing is pain now in pelvis and around reconstruction site as well as some of spine being removed . I have been in 3 weeks now and hopefully can get discharged in 2 weeks at the moment concer free