Hello fellow forum members from a male with a new diagnosis

Hi

Well hopefully everything will go well. The advantage of an RC is less follow ups, but whatever choice you make I'm sure you will make the right one for you.

Ok, I have to tell you, I find that this site fulfills the needs of so many different types of people with different needs, and the people that  share advice and experiences are as different. I see you as an active guy in body and mind as am I. I made decisions about my treatment based on the best estimates of how long It could guaranty I could continue my life in the way I love to live it.. PERIOD . I feel you will make similar choices. (Sittin in the yard , phones on… listening to the “Doobie Brothers”  loud , a pint in hand , and wishing all of you moments that bring you as much joy.

I just finished levelling up my schooner, parked at an island and awaiting dinner 

Ok… we’ll that that sounds like it’s right up there.

Hi Orilla,

I had a chat with a nurse about a neo-bladder and she told me a few things I was unaware of. In particular that as the neo is part of the digestive system it extracts 'stuff' from the urine as it would from food and sends it into the blood stream. This can cause problems. In addition, it secreates mucus which will need washing out.

Are there any other considerations you have come across?

BTW, the day I was given my biopsy result, I was given a fast tract MRI appointment 4 days later to check as far as possible if the cancer had managed to get through the bladder muscle. My problem is at least two of these tumours which have penetrated the muscle plus others which have not. Radiation would mean whole bladder radiation. I must have had these tumours, undetected for some time.

My surgeon is on holiday atm but is considering an extra clinic on his return. I now await the 'official' letter detailing my results and suggested course of action. I still have the impression an RC is favoured and the nurse system is there maybe to point people in that direction for whatever reason. Maybe I was lucky that my body age is more like 75 than 85, without other complications. She seemed to agree to my alternative suggestions.

Good morning Makem, concerning the 2 points made by the nurse …. One I am very acquainted and the other I I have wondered about. First off the mucus , for me it has been a very minor concern.It is always present in various forms. Sometimes your urine is almost clear ( during the day when you are hydrating appropriately ) , some times (when you haven’t ) you may feel some discomfort and when you go it comes out in globs. Some speculate that the variation can have something to do with what you had to eat , but for me , other than the the hydrating , I haven’t seen a pattern . For some it can be a problem as it can form a plug that demands clearance through self catheterizing. I have never had to do this. I have a theory on this which is not backed up by anything that I’ve read, on this site I have heard of many patients whose Foley catheter is removed after three weeks, I thought this was odd because mine was left in for six weeks. At 5 weeks I developed a bad urethral infection  and when I spoke to the surgeon, he refused to take it out and told me to go and fill the script for the strong antibiotics that he had already given me upon being discharged at the hospital ( like he was fully expecting the infection) He said that he leaves it in to avoid blocking scar tissue . My thoughts are that if you are the type that develops keloids the chances or a urethral stricture is greater. NOT SCIENCE simply my thoughts. For me the mucus has never been an issue.

As for the absorption thing… I’ve been thinking about that recently , they use the terminal end of the Ileum to fashion the neobladder and that is the primary spot where B12 is absorbed ( it is important then to supplement this vitamin or make  sure that at it is tested yearly in your blood panel ) I was wondering that if the neo continues to produce and secrete mucus , could it also be absorbing B12. Anyway , I’m doubting that since it didn’t use to absorb and dump pathogens into your blood stream when it was attached to your bowel why would it do it as a bladder. These are things I had no knowledge about when I had my surgery but find it fascinating to think and read about it now. Hope this helps.Orillia.

I think I read somewhere that the neo extract2 acid from your urine and dumps it the blood. To counteract this you take an anti-acid.

Having fully read the two printouts, one for the neo and one for the RC, I am going towards RC. The neo printout describes more possible problems than the RC. I suppose that is to be expected as it depends on the recipient to a large extent.

I read today about trimodality therapy for muscle-invasive bladder cancer combined with imunotherapy and it appears the outcome is on a par with RC.

I expect to speak to oncology and the surgeon about this route as it may be possible to have two bites of the cherry.

Hi makem . As mentioned before, this is pretty much the treatment I had. The site you pointed to is American. According to my oncologist, The USA is about 10-15 years behind the UK at treating muscle invasive with radiotherapy but has been recently been fast catching up with the treatment. Best wishes.

The link I pointed to is American but is dated 1 year ago, perhaps they have caught up? I will take this link to show whoever at the hospital and ask for comment if I get a chance. We know that surgery can be done after that type of treatment if necessary but of course it is somewhat more difficult, but possible.

Neo can cause metabolic issues, so there is close follow up with blood tests. Some do have to take a vit B12 supplement. What neo does do is try to neutralise the contents & will take fluid from the body to do that, hence urine output more at night than with normal bladder.

I haven't had any metabolic problems with mine, & mucus not a significant issue.