Diagnosed yesterday.

Hello Julescariad 

I am just so sorry that you have had this diagnosis, you must be in utter shock and disbelief.  

Five years ago I was Stage IV at diagnosis; I had very little symptoms apart from skinny poos.  My GP was on the ball and sent me for investigation which came through within days.  And a few days after that I was told I had an aggressive submucosal tumour that had invaded the wall of the bowel, was in several lymph nodes and also a spot on the lung.

I had six cycles of systemic chemotherapy first to shrink the tumours and prevent the cancer cells from spreading elsewhere.  I then had a two-month break before going on to have the combined chemo/radiotherapy, and a couple of weeks later had ablations on both lungs ( the second lung had also developed a suspicious area).  That took me to March 2022 and was the last active treatment I had.  Only this week, on the 4th anniversary of the end of treatment, I went for an MRI and CT scan, I am still checked very regularly.  I have never been told I am in remission or cured.

Please hold onto the fact that many people live, and live well, with cancer.  I would be surprised if the doctors give you any definitive answers on what will happen as there is no way of knowing how a patient will respond to treatment.  If one treatment is successful, it may well open avenues to other treatments or surgery.

My heart goes out to you; I had a chill reading your post and what you are going through as I know only too well the devastation this diagnosis gives.  But, here I am, loving life (with a few niggles!) and enjoying my family and grandchildren.  If anyone had told me this would be me, five years ago I wouldn't have believed them, the future looked so bleak.  I cannot say that what has happened to me will be your experience, your treatment may take quite some time and may well be ongoing.  But once you get over the shock of what is happening to you and treatment starts, the darkness does lift a bit.

If I can help in any way at all, please let me know.

Huge hug

Irene xx

Hello Julescariad

At diagnosis my tumour was anal and rectal, it had broke through the rectal wall, invaded the fatty tissue and was pressing against my ureta,lymph node and vein involvement. 

Chemoradiation was given as palliative and surgery was expected. The chemoradiation was that effective it cleared the main tumour and localised area.

I have some spread to distant lymph nodes, but surgery, chemo and possibly more radiotherapy is being deployed to contain it. They may not cure it, but they can hopefully get control and give me more time. Many people live good lives for many years with maintenance treatment. I hope to be one of them.

It's a big shock now, but as Irene said, the darkness does lift. There are still lots of options and as treatment progresses new paths will open up.

Wishing you all the very best with your treatment.

Ally xx