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 so pleased that you’ve finally had your surgery & that the Dr’s have managed to get you cancer free! Having said that I’m sorry to hear you’re still in pain, hopefully this will resolve soon as it’s still quite early days & you’ve had some extensive surgery. I’ve got everything crossed that you’ll be discharged soon, I do think sometimes we recover quicker in the comfort of our own homes. Please keep us up to speed on how your recovery is going. Take care. 

    Nicola 

  • Dear Sinbad, I don’t post on here very often, as I am now 5 years all clear & have had a lot of personal problems.  Your post really touched a nerve so I wanted to send you some love & hugs for a good recovery.  You have been through so much, I’m sure you will find the strength to get through this. Very best wishes, Pam xx

    Lady Tourelle

  • Sinbad

    It is so good to hear from you and you must be relieved that the surgery is over.  I am sorry you are suffering pain, hopefully this will ease off as the body heals, you really have been through the mill.  I hope you have lots of help and back up at home to help you obviously need a period of convalescence.

    Please let know how you get on, and we are always here to help support should you need a listening ear.  Sending a gentle healing hug.

    Irene xx

  • Wow, Sinbad, that's a big surgery and I'm sure it's a lot to wrap your head around. It's reassuring to see Nicola's endorsement of the doctor. Wrapping you in warm healing vibes.

    Hugs

    Suz

    • After my surgery on the 2/10/23 ian still in hospital  they have put a vacuum in the wound where my spine was removed  and the other wound scwhich were 
  • Sinbad, I'm so sorry you're still in hospital! I'm not sure what's going on but it sounds pretty dire! How are you holding up? I hope you're able to respond soon, very worried about you!

    Suz

  • Sorry it posted before I finished I have vacuum in where they removed part of my spine. My anus rectum and lower colon removed so 3 big wounds due to plastic surgery and stoma fitted.  Loads of pain with spine which has caused problems with walking and catheter removed and then put back in as retaining urine as not being able to go I'm also having sporadic infections and temps. The stoma working well and they managed to remove the cancer which was the size of a golf ball beennin 8 weeks now and hope I can get home for christmas

  • Hi  , I’m so sorry that you’re still in hospital & still experiencing so much pain & discomfort. I’ve got everything crossed that you’re home in time for Christmas.

    Nicola 

  • Sorry to ask? 
    I have an anal cancer and malignant cysts in my presacral / retrorectal space .. I’ve been told it’s extremely rare .. I’m wondering if it is similar to what you have experienced ? 
    take care 

    Chrissie xx

  • I was diagnosed with 5 cm mass pre-sacral space. A 1 CM flat lesion was found in Anal canal just below anal verge.   It is rare and about 10,000 a year with this diagnosis.  I am 54 years old and they gave me boost dosing radiation in combination with chemotherapy.  I am still recovering 5 weeks later.   

     Best,

    Wendy