As a relatively young woman with bladder cancer who do I talk to?
1 minute read time.
FormerMember
I feel completely low with my bladder cancer at the moment. Was diagnosed with a low grade and non-invasive tumour 4 years ago at age of 49. I was shocked as a non smoker and otherwise healthy. The cancer recurred twice very quickly and I received mytomycin which held it at bay for 3 years. At a recent cystoscopy I was told that it had returned - a real blow but I had very speedy TURBT and my consultant has told me that the cells brushed away easily but there is abnormality over my right ureter and I am going to need a uteroscopy. This means another general anaesthetic quite soon and a niggling worry.
I remain cheerful and positive to all friends and work colleagues but feel that I have no 'cancer team' to talk to because it is a urological problem. I am back to my gym routine etc . . . But now feel vulnerable and not the confident woman I was. It is as if breast cancer is 'special' and understood and yet bladder cancer is met with a shrug.
What I really struggle to deal with is the way that it has effected my marriage of many years. I feel so unfeminine because of constant cystoscopies etc. combined with the effects of the menopause I feel as if I am going mad! No one understands that I live under a 'little cloud' and my self esteem and sense of who I am is shattered.
I am so, so lucky to be screened and have my cancer removed and I know that it could be so much worse but I feel that I want to forget it all and not go for my uteroscopy. The thought of another camera up my urethra is just too horrid. Last op I suffered a bleed after sex and I now feel just so unattractive. I know that this is probably nonsense but it is real to me.
Any other women out there with advice?
FormerMember
Hello there Cherub, I completely sympathise with you. I am an anal cancel sufferer, and if anything can make you feel un feminine, things to do with bottoms can! There is a bladder cancer group here you may want to join. I'm sure there will be others on there with the same feelings as you. You can always look in on us in the anal cancer group as well. We are open for discussions about anything!! Most of us have been through pretty tough unlady like procedures, so there will always be support for you. I believe the treatment is similar to ours. Don't feel alone and isolated. We will all fight this battle together xxx
Hello Miss Sparkle.
Your reply instantly made me cry. This is the first communication that I have had in 4 years since diagnosis with another woman who understands. I was afraid that it would seem shallow to worry about self esteem etc . . . When others have such terrible times with their cancers. Thank you for the support. I will look up the Bladder Cancer group. X x x
Hello Cherub.Please do join the bladder cancer group and post in there you will find others there who will understand how you are feeling.There is also an excellent group if you are on facebook called Bladder Cancer Support (part of fight bladder cancer) It's a very active group and if you send a friend request they will accept you.There you will find a warm welcome and a great deal of understanding and support.Its not shallow to worry about self esteem cancer effects us not only physically but mentally/emotionally too.You could also contact the Macmillan support line to speak to someone in person the number is at the side of the page.Please go for your next test I have had numerous cystoscopies and four TURBTs I know of others who have had more.It can wear you down but we both know that bladder cancer can reoccur and although it's so horrid it's so necessary to ensure that things are caught early.You should have a Urology Nurse Specialist at the hospital you are being treated at so maybe contact them and talk to them about how you feel.When I had kidney cancer I found people understood but when I got bladder cancer I have found people avoid the subject.As miss sparkle says don't feel alone come on over to the bladder cancer group and join the facebook group Cruton x
Hi everyone. After numerous visits to my doctor(since last August) with peeing blood. I was finally referred to hospital for further test. Within ten seconds the camera in my bladder was a tumour the size of a grapefruit, I was shocked. Now I have an operation in two weeks to remove it, followed with a blast of chemo through the catheter. I am not frightened of the operation, it's what they tell me after that's a Huge worry.
Hi Cherub, I have been searching for blogs on Bladder Cancer and came across yours. The words "As a non-smoker and otherwise healthy" strikes a cord with me. I was a bit older than you at first diagnosis - but still felt young, fit and healthy. I am also in touch with a girl who was diagnosed at 25 - again a non-smoker etc. I know it's ridiculous but I do get irritated when people say: "don't even try to find out what caused it as you will never succeed." I suppose they're right but I keep wondering is it something that I am still exposed to and will they ever discover the cause. I was on going on holidays with my husband and as soon as we reached our hotel I remember making a bee-line for the toilet in the ensuite - (I had been using toilets frequently on the journey there and had been feeling like I had a urinary tract infection.) Then suddenly - the deluge of blood. I was terrified... and this went on for three days, during which time I went into a local hospital A&E - a very bad experience which still affects me. They sent me away with antibiotics for a bladder infection even though I had been told that they could see a 'mass on the bladder,' as they described it.. To cut a long story short, many months later the tumour was removed when I went to another hospital. (Pathology: TA Grade 2) I was given no chemo or any treatment and the cancer has returned twice since 2011. I am now on the waiting list - have been waiting for 3 months - to have a further growth removed and biopsy taken and have no idea how much longer I'll be waiting. Cherub - I hope everything works out for you. How did the ureteroscopy go?
