I Wasn't Expecting This

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So, I thought I had hemorrhoids, fissures and skin tags after my hysterectomy (I had huge tumors pressing on my colon and rectum and associated "trauma poops" getting my system going again.

Moving my bowels caused extreme pain, and I always felt constipated even when liquid fecal matter was leaking all over the place 24/7 (I go through more pads in a day now than I did when my uterus was trying to kill me) I'm in pain 24/7, I can't remember the last time I wasn't in pain.

In January I was referred to a colorectal surgeon by my OB/GYN because it wasn't getting any better. I had to wait four months to get in to see her because there was such a long list.

I finally saw her on April 8th, she took one look at me and her face just dropped. It was not tags, hemorrhoids, or fissures, it was an ulcerated tumor that she said looked like a squamous cell carcinoma., My anus was so messed up (at least I know I wasn't being a big baby) that she wouldn't attempt any kind of scope or internal exam.

I walked out of an appointment where I expected a cream for fissures or an appointment for a hemorrhoidectomy with a surgical order for carcinoma excision.  

I had a CT Scan (insurance won't let the doc go straight to MRI) yesterday and the results show:

The Impression is:
Masslike thickening of the distal anal canal consistent with the provided history of anal malignancy.
Left-Sided enlarged mesorectal lymph nodes suspicious for metastases.
No evidence of more distant disease in the abdomen or pelvic shown in CT.

So from what I know now... IIIA?

I've read up on the chemoradiotherapy and I just don't know if I can put myself through that.

I just want the pain to stop, but it sounds like the treatment will just make it worse for 7 weeks.

I don't know if I can do this.

I just don't know that I can do this. I live alone, have no immediate family and am my own sole support. 

 


  • Hi ,

    Firstly I’d like to welcome you to the Macmillan online community although I’m sorry that you find yourself here. I’m also so sorry that you’re suffering so much pain & discomfort right now. 

    I’m presuming from some of your terminology that you’re in the US? Treatment regimes differ slightly in certain medical centres in the US to here in the UK but all are a combination of chemotherapy & radiotherapy. The treatment is short & sharp but very effective in many cases, there’s lots of us here that are testament to that, we’ve all been diagnosed at different stages & we’re still here to tell the tale. 

    Please don’t ever feel alone, I know we’re not there in a physical sense but the support offered here is wonderful & got me through those dark days following my diagnosis & carried me through treatment too, I made a connection with a lovely lady that began treatment at the same time & we supported each other throughout staying in daily contact. 

    If you have any questions please don’t hesitate to ask. 

    Nicola

  • Hi 

    So sorry you have experienced such a shock but you can do this! Nikki is this sites hero and is right we are all here to support. Read through the many posts and you will find there’s lots of advice, guidance and support available for you. I was diagnosed with 7cms tumour and 3 swollen Lymph nodes last Oct, treatment Nov-Dec and now have all clear! Be brave, be strong and be positive - you can do this and come back with any questions.... 

    Sending lots of positive thoughts

    Ruth

  • Hi  and welcome to the Group. As  has said the treatment regimes in Uk and US clinics do differ but the chemo offered in the Uk (mitomycin and capacetabine ) doesn’t usually have any dreadful side effects. The only side effect I had was some nausea for about 5 days in week one (which was controlled by anti-nausea drugs) & that was it. I found the side effects from the radiotherapy worse although tolerable. I managed with over the counter ibuprofen painkillers and had no blistering of the skin. Everyone reacts differently, please don’t not go through with treatment because of worry about the side effects. You’re always given the worst case scenario by the doctors but very often you don’t suffer from all the possible side effects and there are lots of drugs, eg anti diarrhoea medications and so on to help if you do. Please do come back with any further queries or concerns. Bev 

    1in1500
  • hi 

    i am so sorry to hear this.  I felt like you a few months ago, and also live alone.  I had made up my mind to decline treatment.

    Please be assured that, although this is painful and unpleasant, that isn't constant for 7 weeks.  Some people don't get symptoms at all until the 3rd week I have been told, and often it doesn't get back until the last, or week after treatment. But the most important thing is that, even when the side effects kick in, you will have lots of good days interspersed, it's not constant pain. 

    Are are there any friends or family you can stay with, or they can stay with you, because I think that emotionally, this is draining, and will be such a help to you if there is someone there with you.   

    Keep up all updated, and write down all of your concerns and worries for when you speak to your consultant.  

    Rosie xoxo