Mum's diagnosed with anal cancer

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Good evening, I hope you are all well, or as well as can be. 

My 70 year old mum has been diagnosed with stage 3 anal cancer with 4 lymph nodes affected. Her tumor on the left cheek is around 4.5cm and she is in so so so much pain with it. Morphine is not touching it. 

We have seen the consultants and she is due to have a pet scan on Wednesday at the queen's centre in cottingham. 

She said she doesn't want the pet scan, I advised its more of a mapping out of where they are targeting. She then advised that she doesn't want the treatment she wants the thing removed. This unfortunately was not an option that they have gave her. 

I just don't know what to do for her or if I should just say if she doesn't want the treatment to not have it? She's scared, I get that, I am also scared and its not happening to me. She is currently staying with me but when her treatment starts she will be admitted to the hospital for 5 days of chemo and radiation along side. 

What do I do? I am.still working full time and work is not being flexible with me even though I am looking after her full time. 

Sorry its all a bit jumbled. 

  • Hi  ,

    Firstly welcome to the Macmillan online community although I’m so sorry to hear of your mum’s diagnosis. 

    I’m sure I don’t have to point out how devastating & frightening receiving a cancer diagnosis can be. The choice to not accept treatment is a very personal one & we’re here to support you both whatever the decision may be. Your mum is at the worst point right now, she may feel a little differently once a treatment plan is put into place, the chemoradiotherapy is generally very effective in treating anal cancer although local resection surgery tends to only be offered in cases where diagnosis is very early (stage 1) or APR surgery if chemoradiotherapy is unsuccessful  

    Regarding your mums pain management, if the morphine isn’t doing much (it literally never did anything for me) then please ask for a review as there are other options out there. 

    I would also seriously seek further advice where your work is concerned, the Macmillan helpline would possibly be a good place to start. If you’re caring for your mum now & will be during her treatment you may need to take some time off work & if your workplace are being pretty unsympathetic about your situation then advice on which way to approach this would be helpful. 

    We’re more than happy to support you here on the anal cancer forum & answer any questions you have on the treatment etc,, but for a little extra support for yourself we have a Family and friends forum which is specifically for family members &/or friends supporting someone with cancer where you will probably find others in a similar situation to yourself. 

    Please just ask if there’s anything that we might be able to help with. 

    Nicola 

  • Hello KLPettit

    What a worry for you.  I am so sorry to hear of your Mum's diagnosis and also your stress over the situation, especially when your work aren't being understanding.

    Your Mum will be absolutely terrified and in utter shock over hearing that she has cancer, all of us on here can remember that only too well.  The PET scan isn't too bad, you are correct in that they need that to make sure that when radiotherapy starts only the cancer areas are targeted with the least possible damage to healthy tissue.  The waiting around at the beginning is unbearable, but there is a lot going on behind the scenes where MDT meetings (multi-disciplinary team) are help to make sure your Mum gets the best treatment tailored exactly for her particular case.  The gold standard treatment is chemo/radiotherapy unless the tumour is so small it can be excised with safe margins and crucially that there is no spread to lymph nodes or other areas.

    Hopefully, once there is a plan in place, she will start feeling a bit more positive.  The treatment is short, 28 days, which actually pass quite quickly.  It can be tough but not all side effects come at one or in the early stages.

    As Nicola says, the decision not to have treatment is a very personal one, but see how your Mum gets on when she sees the professionals - they are very aware of the distress that a newly diagnosed patient goes through and are very good (hopefully) at outlining the considerable benefits of the course of treatment.

    Your Mum is fortunate to have you looking out for her, don't forget to take care of yourself too.

    Irene xx

  • Hi KL,

    I"m so dang sorry to hear about your mom's diagnosis, and how scared she is. Boy, can we relate to that.

    Yes, just taking it out is rarely an option, it seems. The PET scan (or CAT scan if you're in the US where insurance companies refuse to pay for the more expensive and precise PET) is necessary for them to be able to exactly target the tumor with the radiation.

    I totally get you mom just throwing up her hands and saying NO to everything. Unfortunately, as much pain as she's in now, it will just increase with no treatment. 

    The treatment is no picnic. Its saving grace is that it's short, although it sure doesn't seem like it when you're in it and recovering from it. 

    I'm glad she's staying with you, and sorry that your work isn't cooperating, but even if you're not there 24/7 it will be so helpful for her to be with someone who cares. Hopefully you can arrange rides to get her to and from treatment when she's just got the radiation to deal with. 

    It's a mean, awful cancer, but it IS very treatable and I hope she agrees to try it.

    And we're here with you both all the way.

    Hugs

    Suz