hi greg57 wishing you all the best for Wednesday. And I know what it is also to bail, I did the same with my first cystoscopy Turbt, I left the hospital but my husband still waiting and he took me back as they were looking for me, the anxiety of the waiting gets to you so much especially when your at hospital so early and you wait and wait  all will be good and you will be fine  good thoughts with you  ... View more

Hi greg57 Im pleased you are now getting the help and things are going along a lot better. And you’re right about a roller coaster , I feel my brain is in a constant tumble dryer . I  was diagnosed with  cancer in December 2022 and five days before Christmas had my first of eight surgeries with the last in August this year, I am well and we are going away for a week to Perth tomorrow which will be a pleasant change.  Take care and kind thoughts with you. ... View more

Hi greg57 so sorry to hear of your struggles and anxiety, i am  happy you are getting the support you needed and hopefully your claim will be processed quickly so you have one less worry , this ‘C’ letter diagnosis certainly plays with our mind as much as our body and life keeps moving on , hopefully things are falling into place and your coping much better, kind thoughts with you  ... View more

Hi Cindi54 bladder cancer often attacks lymph nodes first but not necessarily, fat is only a protection layer Sounds like the ureter cancer is different when you don’t have bladder cancer as if you didn’t have bladder cancer there is nothing to get out of the bladder and that is why you would be having chemotherapy differently as you don’t need it in your bladder  ... View more

Hi Cindi54 i see a professor who is a professor in urology, , urologic oncologist, specialising in urological cancer surgery there are six layers to bladder lining (I think that is right)  my tumours sitting on lining and also tumours pushing into connective tissue which pushes into muscle,  fat is next layer after muscle, once it has gone into muscle it is in your body and bladder cancer once it spreads will go into lungs liver lymph nodes first and treated as metastasis and chemo treated like you would be having. I have been given a timeline if I elect to do nothing  ... View more

Hi Cindi54 yes I’m in Melbourne  As long as you are tolerating your chemo most days that is good  And like the doctors say everyone is so different  you have to understand chemo in bladder cancer is so different as only in bladder so if anyone has affects nothing like what you would experience and I’ve never had any effects  my ureter has not been able to be removed because of the bladder cancer, if the bladder comes out it can be ressected  I don’t think I ask as much information. As you do, I guess I just need the basics of what’s going on, as I’ve heard many times ‘medical science doesn’t always have the answers’ and as my tumours keep coming back there does appear no answers and exactly why I was to get bladder cancer and ureter cancer together, I’ve never smoked in my life no family history of cancers that would have any affect completely unlucky but the same for anyone in the same situation  ... View more

Hi Cindi54  it is really nice to talk with you, but I’ve never had chemo like you have, which has really been hard on you,  yes, how nice would it be to catch up never in all my treatments has there ever been a female they have always been men  Did you have bladder cancer or was it only ureter cancer, as I have been told my ureter cancer is rare and uncommon to have ureter and bladder in  females and why my case has been complex and complicated  You  seem to have gone through a terrible time especially with your chemo  and like you I  don’t really talk to anyone  What state are you in?  😘😘 ... View more

Hi Cindi54  I think you have misunderstood my post,  I have never had any problems with any treatments I have gone through them all no problems at all. The pneumonia not caused by chemo I contracted that two days later and would have been  an infection picked up at hospital as only had been to hospital and home no where else  and doctors said  that very unlikely I had infection prior. Chemo even the hot chemo will not cause any problems anywhere in my body for me as is only in one place does not go anywhere as is only inserted into my bladder and cannot get out until released  it’s not that the professor doesn’t want me to go with hot chemo he has told me it’s an option but gold standard is major surgery as I am high grade T1G3  and the tumours are sitting on muscle lining once they get into muscle they are in your body lungs liver bones to start and  as ureter cancer will then be in kidney my immune system has fought these tumours that keep coming back but have not got into muscle for 18 months now  the hot chemo has a 25% success which not a good gamble  So even though I’m well have had  no affects with treatments they  only work for so long and as my tumours have constantly come back I don’t have much choice but life as it is, is pretty good  😘😘       ... View more

Hi Cindi54  I know what you say go with what doctors say, they say a lot but they don’t tell you what to do, as not there job to do that, they give options and my first  BCG which I was always going to do and it has been as successful as much as it can be then for a year now cystectomy total bladder removal and as I have always been well not an option I ever wanted as it is a major surgery. We were going away last Christmas and over the year I was told twice I would be lucky to see Christmas our holiday was booked well before I was diagnosed and I insisted I was still going and the reason I had the chemo, I couldn’t have full 6 treatments as I contracted pneumonia after the third, and I really thought I was going to die, it changed my whole cancer perspective as I was always well  I changed doctors this year and Heated Chemo has come up as an option, the professor I’m seeing works at both Peter MacCallum and Royal Melbourne and this is one of only a couple that do it, but is not his choice of an option although he hasn’t said that as such  and all medical professionals I’ve seen have always said it is my choice they give best option but always say your choice and I think that is why it is so hard to make decisions what is best to do or not do  And that is why our brains work like tumble dryers i feel like I need to laugh !!  we over think constantly that we end up with no plan  😘😘😘   ... View more

Hi Cindi54 im good Cindi I am completely painfree and only really ever had any pain last year back and right lower pain but was told all stent related and all I needed was Panadol , I have never ever had blood in my urine only microscopic blood my symptoms were I needed to pee  all the time and I still do but not quite as often. Bladder cancer is pretty much a male dominated cancer from prostate and ureter and bladder cancer together in a female not common. But I am good I have gone through 12 rounds of BCG and 3 intravesical chemo and had no after affects other than tiredness  nobody would know there is anything wrong with me or neither would I, if I didn’t know so you can understand my reluctance to want to go through anything. And yes if I was to go with cystectomy I will need to have a stoma bag. I have thought about going that way but as I’m well it’s a big surgery and I have defied all odds so far. The Heated Mitomycin C is only successful in 25%. Life is good and I think I may be happy to gamble on this life journey  I hope all going well with you and all meds working for you now  big hugs and thanks so much for the communication something I’ve really never had   ... View more