Update on my journey

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I have posted previously regarding reoccurrence of cancer during recovery from dual therapy 

I seen the consultant and Surgeon regarding my Mri result. 

Consulant told me at the  MDT meeting the radiologist said the option that it could be a ulcer from Radiotherapy( I finished Radiotherapy end feb) could  re scan in couple months. 

Consultant said he is concerned and wanted to see me. 

Examined by both him and Surgeon.  Decision was made  for biopsy in couple weeks to see 100% before next steps can be decided. 

If cancer the surgery will he removal of anus and remove whatever else is affected and stoma fitted. I understand this is a huge surgery. I got a good 4 weeks before I'll know so anxiously got to wait this out again. 

Jinnie x

  • Oh Jinnie, i'm glad they are planning to be 100% sure before proceeding- cuz that's a tough call. Even the biopsy means more pain, but getting the information is so vital.

    Thank you for the update. You're in my heart. 

    Suz

  • Jinnie, I am so sorry that you are in for yet more waiting but pleased that they are considering all possibilities, but I know it doesn't make the going easy for you.  The waiting is so stressful and we all have experience of that, one way or another.  I am keeping my fingers crossed that it is side effects.  Please keep us posted, and sending you big hugs.

    Irene xx

  • Hi  ,

    The waiting game really does mess with your head doesn’t it? It’s so anxiety inducing! Having a biopsy of the area of concern is the only way I suppose you’ll get a definitive answer to what’s going on & as Suz has said it’s vital that they’re 100% sure before proceeding with surgery. I’ve got everything crossed for you that things move quickly & they find that it’s something easily dealt with & not residual disease. 

    Thinking of you.

    Nicola 

  • Time has come, Biopsy and EUA happening this Wednesday. Really feeling anxious as I've been here before and know what's coming. Although I feel this one will be worse as this New growth is more into the anal canal and bigger and quite sore. 

    I'm also still having side effects from the chemo radiotherapy that ended end Feb. I've ordered a sitz bath as only found out about them on here. When I spoke to the "specialist nurse" she never heard of them. She also informed me that it is not her role to contact me, But for me to make contact for support if I need her. (Not happy that I told the consultant that I feel I'm not getting support from my team as don't hear from anyone and don't feel I'm under any teams umbrella as no-one knows enough about anal cancer to give advice. 

  • Jinnie, I am so sorry you are feeling so anxious about Wednesday and I can completely understand why.  I think the not knowing and waiting is the absolute worst and my heart goes out to you. Unfortunately (for the people who need help) anal cancer is relatively rare and I think that is why this site is so valuable for passing on hints and coping strategies.

    The nurse could have delivered the information about it not being 'her role' a bit more compassionately too.  If she has many many patients she may well assume that if she doesn't hear from you or others then all is well.  Do you have her number now?  I would make sure that any problems you do have let her know immediately so that you are on her radar.

    I will be thinking of you on Wednesday, please let us know how you get on.

    Sending a big hug

    Irene xx 

  • Thank you Irene 

    I must sound like I'm having a whinge all the time, but being on your own (I do have a hubby) with no one to sound off too who knows what I'm going through is hard. 

    I will be ringing  "my specialist nurse" if I have any problems. Hopefully I won't need too. 

    This forum is a god send, thank you all for being open and honest in your journeys 

    Jinnie x

  • Jinnie, NEVER worry about 'whingeing' here (you're not......you're asking for support from people eager to give it to you.)

    I often feel alone too. Husband is a lovely fella, but he feels as if it's been long enough (it seems) and I need to be over it. 

    In many ways I am. In others, it's shaky. In a few, I'll never be.

    Whinge away, sister.

    Hugs

    Suz

  • Jinnie, I don't think for one minute you are having a whinge - where else can we comfortably talk to people who really understand.  We are always here if you need to chat.

    Irene xx

  • Hi Jinnie

    I’m so sorry to hear that you potentially have a recurrence. Firstly I really hope the biopsies come back as nothing and then you can be on your merry way! Well as best you can after cancer at least. 

    If there is anything you would be interested in the knowing about the APR surgery (which I think you might be referring to?) I am currently recovering from it and I am finding it quite therapeutic to diarise how each day has roughly gone. Hence why I am up at 5am! Although my children wake me then anyway actually.

    I don’t know if you might find these of any use but I believe if you go on my profile then the info should be there. I am literally only 5 days post surgery so you may want to hear of people further ahead into their recovery. 

    Really hoping for those biopsies to show nothing anyway!

  • MrsKS, just read your profile and am in awe of you continuing to journal throughout your process! What a gift for those who follow on this particular path. You are amazing.

    Suz