Stage 4 Anal Cancer

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Tomorrow morning I will find out the pathology of a tumour in my gluteas Maximus. I had anal cancer and the standard 5fu and 5 weeks of radiochemotherapy at the beginning of 2021. I am told this would mean so would be a stage 4. I don’t know any more yet but looking for those out there who had a stage 4 diagnosis. Where did it spread? And how are you doing today? Any bit helps thank you

  • Hello B00mz

    I was stage 4 at diagnosis as I had spots on both lungs.  I had six months of Paclitaxol/Carboplatin chemo first to control the spread, and a couple of months later I had the standard chemo/radiation.  The week after that finished I had an ablation on my lung, followed by an ablation on the other lung.  I am fine, still having the three monthly scans and follow-ups and haven't had any treatment since March 2022.

    I am so sorry you have this hanging over your head and I hope that they will be able to offer a solution.  I would be guessing as to how they would treat this tumour (surgery/radiotherapy) but almost certainly Paclitaxol/Carboplatin will be used as part of the treatment, it is standard for stage 4 anal cancers and has very good results in controlling spread.

    I will be thinking of you tomorrow, please let us know how you get on, and if there is anything else at all I can help with just ask.   

    Irene xx

    • Thanks Irene for your reply. When did you get initial diagnosis? 
      i found out this morning that it has spread to my muscle in my buttocks. My onco said it was impossible, I am proof it isn't. My lungs are clear, everything is clear! But this 3cm mass in my gluteas Maximus which my biopsy confirmed is SCC.
      also, I would love to here from other stage 4s. 
  • I was diagnosed in March 21 but it took until June to establish exactly what type of cancer I had as all the biopsies showed negative. But as I had a scan which clearly showed the tumour they knew that wasn't the case.

    I'm pleased to hear that everything else is clear, hopefully they will now press ahead with treatment.  Remember we are always here, even if you just want to have a rant!

    Irene xx


  • Hi  ,

    I’m so sorry you’re dealing with this incredibly rare scenario!  I can imagine it is not only scary, but also pretty isolating.  I mean, a cancer diagnosis sets a person apart from the crowd already, both emotionally and physically, so I’m sure this feels even more lonesome.  I’m glad you’re engaging here…we may not know exactly what you’re experiencing, but we sure try to be good at empathizing, I think!

    Like  I was stage IV at diagnosis.  I, too had carbo/taxel systemic chemo before beginning chemo-radiation.  I tolerated the carbo/taxel very well, and it worked very well for me.  You can read my full treatment passage by clicking on my screen name, but the short story is that through a combination of systemic chemo, chemo-radiation, and surgery, I’ve now been NED for almost 18 months.  My team is optimistic that I’m quite done with cancer, it’s just a matter of checking-off these follow-up appointments…they are still nerve wracking, I still have a lot of anxiety, and I am not counting my chickens, but life feels more and more normal every single day.  Physically, I feel great— I run 3 miles almost daily, I teach ballet, I am active at my kids’ school, I have some volunteer projects, we do family vacations, we host parties…life is busy and full and GOOD!

    Please remember that cancer research is moving quickly, especially under the colorectal cancer umbrella.  There are many treatment modalities, and cure of this cancer, even at stage IV, is possible.  It’s great to read that you have no spread beyond the muscle, so hopefully they can use a targeted approach to address that.  Know that if you also need systemic chemo, it is a much more tolerable experience than it was a generation ago.

    You’ve got this, Friend.  You’ve got this.  Update us as you’re able, and very best wishes to you.



  • thank you for your reply. It’s comforting to know I can check back in if needed. Xo

  • I would like to ask you something off forum. How can I connect or send a private message?

  • I just sent you a Friend request, then we can message off forum.