Very rare anal cancer

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Hi everyone , 

  • I’ve just seen my oncologist and start chemo radiotherapy  in 3 weeks . Unfortunately my cancer has spread via lymph nodes to my retrorectal cysts .. this has never been seen by my doctor and has made me very anxious . I wonder if anyone here has heard of this ? 
    big hugs to all of you going through this nightmare 
  • best wishes Chrissie xx
  • I don't know anything about this, Chrissie, but I'm betting someone here does! This is the best place to be while you go through your treatment. We got you!

    Hugs

    Suz

  • Chrissie

    I had to look them up too!  But from what I can see, if yours are in the area I saw in the diagram, it looks as if they will be treated by the radiotherapy.  I am sure if this isn't the case there would have been a different plan for you.  This is why so much care is taken in the planning stages and probably why no two people have an identical experience of radiotherapy.  When you go for your planning session they will do tiny (painless) tattoos in the 'triangle' as a guide to the area to be treated and when your sessions start, they spend some time lining you up so that your tattoos are in the right place.  But I am not surprised that you are anxious, the planning stages are fraught enough without complications.

    Big hug, Chrissie.

    Irene xx

  • Thanks Suz .. the fact it’s rare makes me question what why where !!! 
    take care 

    Chrissie xx

  • Hi Irene , 

    you are so right about the planning stages , very fraught !!!

    I wanted him to say this is curable and not this is rare , so my confidence has reached an all time low … but I’m learning a lot about this cancer and I’m sure my oncologist will at least try to get me over the finishing line 

    take care 

    Chrissie xx

  • Hi  

    I was just wondering if the oncologist has maybe not made himself clear which has caused you to worry? Did he mean that the type of anal cancer is rare or where the cancer is was rare to him? I think that’s an important difference. Most anal cancers are squamous cell, so have you been told the type? 

    It may be that your doctor hasn’t seen before the particular way your cancer has spread, so he might describe this situation as rare. When I was diagnosed with my cervical cancer, my gynaecologist used the word “rare” which scared the life out of me! It turned out it wasn’t rare as it was adenocarcinoma, but it was less common that the more usual squamous cell carcinoma. But we hang on their every word, don’t we?

    Just trying to offer another explanation for you. But whatever is going on, there WILL be a doctor who has seen it before.

    Sarah xx


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  • Hi Sarah , 

    it is a squamous cell anal cancer that has spread to some cysts behind the rectum . I think this hasn’t been seen before but it’s the same cancer .. the oncologist was honest but brutal in his delivery , so felt a tad shocked by it all .. I have learnt a lot about anal

    cancer from this amazing site but yesterday took me back a few steps , especially when he asked me “had I informed my family “ 

    thanks for your reply , it means a lot 

    Chrissie xx

    t

  • Hi  

    Ah, thank you. I was drawn in by the post heading saying “very rare anal cancer” and at first thought you  meant one of the much rarer types of this cancer but it seems it’s the most common one.I think Irene is right in thinking this area will be targeted by the radiotherapy.  

    So in fact the cancer itself isn’t a rare type, but the location of the spread to these cysts was rare for this particular doctor. I honestly think some of them need a lesson in charm school! When we are at our most vulnerable they are delivering life shattering news as if they were reading the news! 

    I wouldn’t focus on him asking if you’ve told your family yet-that’s entirely your choice when you’re ready, and nothing to do with him! I chose not to tell mine until I had a treatment plan in place and was able to answer questions more easily rather than worrying them by not knowing what was going to be happening. 

    Sarah xx


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  • They see this every day so bedside manner is rather matter of fact .. its forums like this that put things into perspective and I thank you again Sarah for doing that … 

    Hope you are well ?

    chrissie xx

  • Thank you  I’m doing ok. I sometimes pop up in this group though I had recurrent cervical cancer as I had a total pelvic exenteration, and one of the many consequences was losing my rectum and having a stoma. I tend to appear in groups where I have lost a body part(!) or there is a discussion about hpv, but I did have my surgery over 4 years ago now. This is an excellent group, and I am very fond of the knowledgeable ladies here so I keep coming back! 

    Sarah xx


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