Urology phone appointment

Hi,I’m not sure what to do.I had my op just before the pandemic.I haven’t seen any urologist face to face since 2020.I had a letter saying that I would only be having phone calls now.Phone calls are ok but it would be good to see someone.xx

We haven’t had any face to face appointments with Drs, only seen them for procedures, I have only seen one, at the first appointment when I was allowed in. All the results and information has come from the nurses via a telephone call, I’m not sure if this is the best, it’s a 50 mile round trip to the hospital, so that’s easier, we record the calls for reference so that’s good, I get ready for the calls to ask all the things that I might want answers to so that’s a plus, but there is a part of me that thinks it would be good to speak to a Dr, would it be any different, I don’t know, some Drs are worth speaking to some just leave you more confused and your concerns are not significant.

it certainly is a funny old world in which we are trying to survive, let’s hope we do x

Good Morning All

I have just about recovered from the shock of being told over the phone that a full bladder removal will be recommended at my next meeting with the consultant ( don’t know when that is yet!)

It is now 6 weeks since my TURBT to remove a new tumour which has apparently turned out to be high grade but in situ.

Any ladies who have had bladder removal-advice on how to position bag under clothes, empty bag snd care of stoma would be greatly appreciated.

I want to prepare as well as possible my questions for when the meeting will ultimately take place.

I have had 15 BCG treatments, the last be bring in June 2022.

I was on a new 6 month regime when the new tumour showed up during a cystoscopy at end of November 2022.

I had a TURBT in January 2023 to remove tumour which turned out to be high grade.

As I was due another 6 sessions of BCG at 6 monthly intervals I feel I should  request to have this before making a decision about removal of bladder.

Your advice and experience would be greatly appreciated.

Kiko x

Good morning Kiko, I'm really sorry to hear you got shocking news. I'm not a medical person but I believe that tumours which are in situ (cis) are considered more dangerous so I guess your team wants to make sure they have removed risk as far as possible, which means cystectomy. There are a number of women in our group who have had this experience and are really well informed. They pop up from time to time to tell us they are doing well and enjoying healthy lives. I'm sure one will be along soon to share their knowledge. Of course your mind will be whirling with questions and anxiety, this is the hardest time. I have found living one day at a time and indulging myself with rubbish tv and anything delicious that I fancy (often cake) helps me. Small pleasures eh? Sending love H x

• Hi Kiko,I had a cystectomy in September 2019 and have a stoma.I had Interstitial cystitis for many years before bladder cancer.Because of this the surgeon felt that a neo bladder would not be the best choice.I had already decided that I would have an Ileal conduit anyway.Before the surgery I went to my local hospital to meet the stoma nurses.The nurses explained about the stoma and I watched a video showing how to change the bag.I went back for another appointment where the nurse measured roughly where the stoma would be positioned.She took the measurement from the waitsbamd of my trousers and marked the position with a marker pen.The stoma is roughly inline with my navel.For me the stoma has been the easiest part of having a cystectomy.I had the surgery over 40 miles from home and met the hospital stoma nurses shortly after the op.They helped me with the stoma for the first few days.I was shown how to care for it and guided by the nurse in how to change the bag.The stoma nurse said by the time I left hospital I would be able to change the bag on my own which I was after a few days.At first it all seems daunting and strange but it is amazing how quickly you adapt to it.It becomes a routine thing that you do like cleaning teeth.The first few days post op were more challenging with regards to the stoma as I had tubes and drip stands to manage and latterly a nasal gastric tube too.I managed but it was much easier once the tubes came out.I had brought some clothes in with me but my stomach was too swollen to wear them.Luckily my sister lent me some lounge pants and they were ideal.I had a lot of bleeding and vaginal leakage post op so pack extra pants and sanitary pads just in case you get this,not everyone does.Take loose fitting clothes and slippers that are easy to put on.You really don’t want to be bending too much post op.If you are having a stoma you will find your own routine.Some people try lots of different types of stoma bag before finding one that suits them.I was lucky that the bag the stoma nurse suggested was good for me and I have kept to that make.I have had very few leaks and all of those were in the early days of having a stoma.When I’m out it’s easy to empty the bag in any public loo.I wear most of the clothes I did pre surgery but have added tunic tops which are comfy and skirts and trousers with looser waistbands.You can empty the bag sitting or standing.To begin with getting the bag over the stoma is not that easy.Some people use a mirror but I never did.It comes with practice.It all’s a bit overwhelming at first but you do get more confident.The stoma nurses will offer advice and support.I hope this helps.Love Jane xx

Thank you both for your  advice and encouragement! X

• I’m happy to help if I can.I’m sure the others will be along with their experiences and advice.I think you are doing the right thing in writing down questions.I took a notebook when I met the surgeon.My sister asked questions too and I made a note of the surgeons answers.Hopefully you will come out of your appointment with a good understanding of the surgery.It’s a shock and a lot to take in,I can still remember how I felt back then.I hope you have supportive family and friends.I think it helps to talk.I had a few conversations with my partner John and sister Sarah.They supported me.Sarah took me to most appointments and John was there on surgery day.It helped them to cope having something practical to do.They were much more upset than I was.It is hard on loved ones as they feel a bit helpless.Love Jane xx

I’ve just had an appointment for a ct scan on the 27th Feb.I’m really confused now as the urologist said he would arrange an ultrasound in May and another CT scan in November.I also had another letter saying I would only be getting phone appts which is a repeat of the letter I had a few months ago.

Hi Jane, that's so confusing! Difficult to know if the letters relate to the consultant's input or just posted out as part of the system. However I believe you might be pleased to have the earlier CT scan date? In fact I've never had a phone consultation or review with a doc, other than post TURBT feedbacks from the surgeons, I've never seen/ spoken to a doctor since the initial biopsy results meeting in 2017 All my negotiations about my treatment options or feedback from testing has been done by my CNS. Luckily she is marvellous. My fingers will be crossed for all clear scan results. Hope home life feels easier as boxes finally leave the premises? Sending a hug Hx  

Hi H,I’m wondering whether the urologist took on board what I was saying regarding renal problems following cystectomy.I had a CT scan just before Christmas when I was so breathless so I wouldn’t have been due another one yet.I suppose he may have spoken to my usual urologists.I will go for the scan.The kidney problem was only found on the last scan but there is no sign of an obstruction like a stone.It could be a late post op complication.It’s a year today since mum’s funeral when we had to battle to get to the cemetery in storm Eunice.The house is getting emptier and items are being packed.Life should become easier in a few months time,well I hope so.Love Jane xx