Newly diagnosed

FormerMember
FormerMember
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Hi,

Recently diagnosed but i'm in no mans land, been diagnosed but not yet on a plan. Unfortunately my tumor has transferred across lower rectum and vagina so half and half in both organs. Looks like a lemon shape so named it Lenny. I already know ill have to have a permanent stoma, but because its complicated now waiting to see what concoction of radiology and chemotherapy I'll need prior to any operation.

I'm quite young and it was a shock being diagnosed since going back and forth to the doctor just feeling unwell and losing weight but no other symptoms  but I persevered and wasn't willing to accept it was a figment of my imagination  thank goodness I did, but now I'm.not sure I'm better off knowing what made me feel so unwell.

I'm scared but bounce between ok and feeling sorry for myself.

Friends and family don't know what to say and I don't know how to talk to them  none of us have known anyone with this. Just feels pretty lonely whilst I wait for next steps

  • I just want to welcome you to the forum . Hopefully we can support you as your team works out a plan to successfully evict “Lenny” ! 
    A lot of people here have had a combination of radiotherapy and chemotherapy prior to surgery and I am sure will pop along soon to help reassure you .

    I think everyone here could associate with your feelings of isolation during the waiting period ! Getting the treatment plan does give some structure and a way forward ! Hopefully it will come quickly . 

    So glad you kept advocating for your health ! That took a lot for you to persist and you were correct ! You listened to your body and did the right thing !

    You can ask anything you like and we will try our best to answer ! Even if you just need a safe place to say how you really feel !

    Take care ,

    Court 

    Helpline Number 0808 808 0000

  • Hi,

    I was diagnosed at Christmas with a large Sigmoid tumor. It was touching the bladder so there is a worry it might have affected it.

    I had a stoma (ostomy) fitted first and then after a couple of months had 5 weeks of radiotherapy and chemotherapy. I next have a scan in a few weeks when they decide upon the operation to remove the tumor.

    Very worrying at first but it then becomes part of your life. Looking back none of it has been nearly as bad as I feared.

    It all takes a long time, bowel cancer is slow growing so they like to do things right and have lots of discussions. I have had loads of support from the hospital and stoma care nurses.

    You have come to the right place. Discussing any worries or just talking about the experience really helps.

    I have a friend who has had a stoma (ileostomy) for 40+ years. She treats is as a friend and copies just fine living a normal life.

    Do feel free to talk about anything on here. I hope all goes well for you and that Lenny will become a thing of the past. 

    Look after yourself.

    Bearwidower

  • Hi MeMee92,

    i echo what court and bearwidower have said.

    Very well done for persevering with your gp. Take comfort from the fact that you are now in the system and a huge team of professionals are going to do their very best to cure you. 

    I was diagnosed at Christmas with a 4.5cm lower rectum tumour and had a permanent stoma within a week. My plan was 4 cycles of Capox chemo followed by 5 weeks of radiotherapy, then an op,  but the Capox worked so well that I only had to have 1 week of radiation and the op is not necessary as the tumour has disappeared and the swollen lymph nodes have melted away.
    It has been a scary and worrying time, but I found huge comfort in this forum, reading about other people going through the same process. You really are not alone. It is okay to feel sorry for yourself, we all have down days. I think that is a completely natural and normal reaction. Friends and family always say how positive and cheerful I have been.... that is just the bit they see!

    I’m sure you will feel better once you have a plan in place and you can start saying goodbye to Lenny.
    Very best wishes x