Hello

Hi R1M2 and welcome to the group although sorry to hear of your diagnosis. The early day s of uncertainty and not knowing can be anxious times. We know squamous cell is one of the rarer types of cell, but we have had members in the past  treated successfully.  Hopefully someone with experience of this type will be along to share experiences. Have you been given a treatment plan yet? You will get plenty of support here going forward. Best wishes.

Hi R1M2,Welcome to this friendly group.I had Squamous cell and am currently cancer free.I hope you find lots of support and advice here.Best wishes Jane

Hi Jane, that is good to hear - but I think you will have had an arduous journey to get to where you are now. Do you have a bag for urine? Sorry, don’t know the right terminologies yet. If so, how is it to live with? 

Hi Riley, thanks for your support. The Consultant laid out the options for me to consider. He appeared to be in favour of a cystectomy, but still has to take my case to the multi disciplinary team. 

Hi,Yes I do have a bag for urine.I had my bladder removed in 2019 and had an Ileal conduit.They bring a piece of bowel out through a small opening in the abdomen.This is the stoma and the pouch/bag goes over it.I haven’t had any problems adjusting to life with a stoma.You get taught how to look after it by stoma nurses and once you know what to do it’s amazing how quickly you can adapt.There are people on here who travel abroad and play sports with stomas so you can still have an active life.Can I ask what options you were offered ? 

• The options he spoke of - Radiotherapy, but but he said that this is not so effective with this particular type of cancer. The second option was the cystectomy. He mentioned taking a piece of intestine to create a pipe connecting to the tubes running from the kidney and coming out to a bag which would collect the urine. Does that sound similar to your operation?

Your account of the stoma sounds very positive - that is heartening. 

Thank you so much for replying to me - it is so helpful.

That’s the same as I had the Ileal conduit.Unfortunately Squamous cell doesn’t tend to respond to radiotherapy.I only had surgery.

Ah! Sounds as though I need to start facing up to the idea of the surgery and the bag. Thanks for this - you are confirming today’s conversation and that feels really helpful

Hi R1M2 . I had radiotherapy, but as mentioned it may not be suitable for you as they need a solid target to aim at. Bladder removal sounds daunting, but hopefully as a bit of reassurance, dozens if not hundreds have passed through here over the years and go on to live full and active lives without bladders. Jane and others have stayed around to help others in the same situation. Best wishes going forward.

I hope you don’t have to wait too long to find out whether surgery is recommended.