Confused about Staging and Treatment

Hi, I had an external perianal tumour removed and was diagnosed SCC. I’m now awaiting next steps and told about various appointments. At the moment they have not said whether I will definitely need further treatment, is that normal? The tumour removed was 2cm x 3cm from what I’ve been advised but beyond size I don’t know much more. How long is it usual to wait for updates and decisions? I’m frustrated and the mind just keeps ticking over with alsorts! So far I’ve had an operation to remove lesion/tumour, a CT scan and blood tests. Any advice on usual protocols would be great. Thanks so much x

  • Suz that’s disgraceful!! It’s our diagnosis & we derserve to have all of the relevant information about it & personally I think staging is pretty relevant don’t you? It should be thoroughly explained to you & it amazes me how many people are expected to agree to a treatment plan yet are still unaware of their full diagnosis!

    I’m a pretty patient, laid back person until someone pushes my buttons & that would have pushed them all!! I remember when my eldest daughter was a baby, she had open heart surgery at 9 months old & was pretty sick in the cardiac ICU for 4 weeks after the surgery, I had a room at the hospital & I sat with her every day, one day a nurse was administering some new drug & I dared to ask politely what it was & what it was for & she replied ‘have you ever heard the saying a little knowledge is a dangerous thing?’ & following a very heated reply from me with a few choice words involved I promptly reported her! I’ve learned as I’ve got older not to be afraid to question things especially regarding mine or my loved ones health!!

    Nicola 

  • Hi lar4577,

    when I was going through my journey I kept asking what my staging was, I never got an answer until the day I was just about to go down to have a colostomy done due to the size of my tumour, the colorectal surgeon asked me a  question and I said I didn’t know and that I don’t even know what my staging is as I’ve not been told he said in a matter of fact way oh your advanced stage 4 N1 omg i nearly fell off my chair, that they didn’t think it was important enough to tell me I’ve was advanced the tumour was 10cm, maybe they felt it was best I didn’t know but surely I have that right!!

    anyway I’m now in remission and just need to have a reversal fingers crossed I won’t have to wait to long, good luck with your journey and hope you don’t have to wait to long.

    laura x x