PET scan results

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Hello everybody

Very large anal/rectal locally invasive tumour, no sign of cancer. Fantastic result and so better than I expected.

Three pelvic lymph nodes very slightly enlarged and metabolically active.

Lung glass nodual, no size change and does not appear active, still under observation.

Two lymph nodes near the lung going under observation.

The scan was done in a different hospital, so I got the results in the post before my surgeon. Spoke to him on Monday and we met today to discuss options. He took the results away immediately, discussed it with the radiology team in my hospital and came back with a plan.

He's going to remove the three active nodes, biopsy then further chemo treatment or watch and wait. He says finding 3 nodes with small changes will be tricky to find (I also have a stoma in the way). 

I asked for a surgery date after the 11th and he has booked me in for Monday 16th. 

I refuse to be sad, I am so lucky to have such a proactive surgeon who is able to treat me so quickly. He will inject me with a new dye that hopefully helps him locate the lymph node using ultraviolet, lapraspopic surgery will be performed.

I've managed to clear the monster tumour so anything is possible. If systemic chemo is required, I managed last time and I will manage again. If small cancer cells are floating about, better to try and zap them now, I'm fit and healthy and ready to fight.

Sending positive vibes to everybody battling this 'crappy' disease.

Ally xx

  • Hello Ally

    I am so pleased that the original tumour has gone, and am taken aback at how quickly everything is happening for you; your surgeon sounds world-class.  I have everything crossed that there is nothing going on with the lymph nodes and it is just inflammation.  And I remember you (like me) tolerated the systemic chemo really well and it is good that you are so positive if you have need to go that route again.  But I very much hope that it won't come to that.

    You are such a brave, positive lady!

    Big hug

    Irene xx

  • Thank you Irene.

    Before I joined the group I might have thought I had no chance, but inspirational stories like yours give me hope.

    Ally xx

  • Ally, what an inspiration you are! I have a T4 tumour and am having a stoma (any tips gratefully recieved!!). Sounds like you are doing great and coping so well! You have got this!!! 

  • My stoma was done pre chemo radiation and it has been a life saver Willow. Irene gave me some great tips and I just got into a routine.

    The right stoma bags are so important and for me that's Welland, never had a leak or any soreness. I now eat the majority of foods, chew well and slightly smaller portions. I wear a stoma support belt when I do heavy work, still very active and do regular exercise.

    At the moment you are pre treatment, it's a really difficult time. My tumour was getting really uncomfortable, couldn't go to the toilet and then lymph node involvement. Once treatment started it felt calm and I was in control. I also could feel changes within a week. My tumour was big, anus and rectum, locally invasive, pressing on my eurethra and the treatment has worked.

    Ask anything and I will try to help.

    Ally xx

  • Hello Ally,

    It’s wonderful that you have managed to clear the primary ‘monster’ tumour. That’s a really excellent result and I am so pleased for you.

     I recognise that you’re not fully out of the woods yet but as Irene said, you seem to have an excellent team who react quickly. I’m sure your positivity and self care play a big role and agree that you have been so inspiring.

    Wishing you all the best for the lymph node removal and for a positive outcome.

    Sending hugs xx

  •   same plan for me! I am so pleased to hear re foods and noted for leaks!!! I am looking at it as a positive as it will mean less worries about bowel movements and allow everything to heal. Good to hear re support belt as I too am a very active Mum of three. Also amazing to hear that your tumour cleared. I hold onto this hope xxx thank you for sharing and all the best with the next step in your treatment x

  • I have everything crossed for your surgery and colonoscopy results PEB.

    I also hope your team are extra vigilant with all your future scans and you get only the very best of care.

    Ally xx