Hi, I am new to the group. I have used Macmillan a lot over the last 5 years.
My husband has NHFL Watch and wait,
He had DLBC 2024 resulting in Stem Cell Transplant which he was supposed to be in remission from????
2 weeks ago he started seeing a lot of blood in his urine. Several scans later it shows a mass of 5.8 cm attached the Pelvic wall surrounding his Ureta. To off load the swelling he is having a Nephrostomy on Friday. They believe the cancer is linked to Lymphoma as nothing has shown up in his bladder.
We are anxious about it all as this will be in place until treatment starts. He is expecting a Pet Scan and biopsy very soon. It will be done under x-ray, do they give you loads of information post procedure?
Hi Fuzzbuzz and welcome to the stoma support group.
I can understand your anxiety around the upcoming procedure, especially as it may sound a bit daunting for you both.
I haven’t had a nephrostomy myself, but I’ve got two stomas, hence being part of the group here. I’ve had a search through the group but unfortunately not been successful in finding others talking about the procedure here. I only have experience of friends having this done for the same cancer as myself.
You should be given information after the procedure from the medical staff on how to manage things afterwards. The procedure is carried out under a local anaesthetic, and as you say this is guided by x ray. I’ve had a different procedure done in this manner for another condition, with sedation, and it was uncomfortable but not painful. Being guided in this way lets the medics see exactly what’s going on inside the body and where to site the tube which will come out of your husband’s back to drain his urine.
This link will give you information on the procedure, which includes information on after care.
I hope you might find this helpful while you wait for any further replies, and wish your husband well when he has this done.
Sarah xx
Hi Latestart
Thanks for the heads up on this-I’m not a member of the urostomy association (in fact I confess I’ve never looked at it before!). I’ll join up and have a look once I’m home from my holiday.
It’s always good to learn of new resources we can refer folk to, so I appreciate your recommendation.
Sarah xx
Hi Fuzzbuzz
That’s very good news about your husband’s nephrostomy procedure going well. I hope you’re both managing to cope with the changes this will have brought.
I’m sorry to read that his lymphoma has returned, but I hope he copes well with the chemo regime, and wish him all the best with it.
Sarah xx
