Waiting biopsy. Struggling emotionally.

Hi Rachel1987 and a warm welcome to the group. Your story will be familiar to many here. Bladder cancer is often overlooked by GPs, and especially with the ladies. The positive is you are now in the system. Firstly, be aware that if  it does turn out to be bladder  cancer, it can be treated successfully. The procedure you will probably have is called a TURBT (trans urethral resection of bladder tumour). It sounds a lot worse than it is. Usually done in day surgery, but a possible overnight. They will remove the offending cells and send some off for analysis. This takes a few weeks to get results back. The results determine the next step, if any. The back pains and tiredness are normal, so try not to overthink the way you are feeling. You may be called for a CT scan to help rule anything else out and give them a better picture of what they are dealing with, so don't worry if you get an appointment for that. Another positive is nothing was seen on the ultrasound. Ultrasounds can only pick up things that have developed. I hope I have not overloaded you with too much info. Lots of experience here to answer any questions you may have, or just come for a chat. We all know how you are feeling. Best wishes.

Hi Rachel, just want to welcome you to this very helpful group. I can't really comment on the pain vs size of cancer thing as my OH's bladder was chock full of "inside out cauliflower like"  [his words] growths. That was about 5 years ago and treatment has cleared them for now. But he never had bladder or back pain or even visible blood in urine. He just had increasing frequency of needing to go especially noticeable at night.

It is fair to say from what I have read on here, that as you mention, ladies with blood in urine get checked for anything but bladder cancer and this can cause delay in diagnosis. I personally think the medics are behind hand as it used to be seen as an old person's and mainly male disease. Perhaps it used to be, because mostly men did the jobs using industrial chemicals or the amount of tobacco smoking which are known causes. But nowadays for whatever reasons, it is affecting many women and younger people. 

The best thing you can do is approach your doctor about the pain and exhaustion. It does occur to me that if you have lost much blood through your bladder, not always visibly, especially as presumably you are also the age to still be having periods, you could perhaps be anaemic which would account for the fatigue. Your GP should be able to get you a quick blood test to answer that one. Also did they check you for a UTI = urinary tract infection? Kidney infections could potentially also be a source of back pain, blood in the urine and anaemia consequent on the blood loss.

Secondly, find distractions for while you wait for answers about the brown mark. You can read all about TURBTs in  other posts and all agree that waiting for results from the biopsy is a trying time. You can't hurry it though, as there is a well established standard procedure of a weekly MDT =multi disciplinary team meeting. At this MDT the lab people, doctors surgeons etc all go over the details of your case and agree what choices of treatments it is right to offer you. Once they have done that, they book you in for an appointment to inform you of the options. Whatever they are you should get time to think about them before deciding. Quite likely you will also be given a CT scan to check on what if anything may be going on outside the bladder, this is pretty standard and if clear it's more reassurance. If not at least everyone gets a clearer idea what they are dealing with.

Personally I would suggest to your partner, Mum or whoever, that they register with your local Carers' Association as they offer useful free support to them. And rev up all the other mums and dads you know to help you out with some play dates etc whether you want to go into full details yet or not. You deserve the same support I'm sure you would willingly give them if it was them going through this. 

Do come back with all your further questions or just to vent, and let us know how you go on.

Best wishes, 

Denby

Hi Rachel1987,Welcome to the group.I hope you will find it helpful.We all know what an anxious time this must be for you and are here to help.Best wishes Jane

Hi Rachael, Really feel for you but try to put it aside until you know... I just had one mega bleed one morning, and was a month later after all tests etc I was finally diagnosed with Bladder cancer...was already dealing with lung, liver, back and lymph nodes cancer from 2017 which touch wood is still stable.....I felt a lot of pain prior to the bleed all over and me too was really tired all the time... as apparently pain from the bladder can affect your torsa so try not to think the worse.. It may not be cancer but if it is..bladder cancer can normally be much easier to treat...When they looked inside my bladder I could clearly see the cancer on the screen...looked like fungus growing on a tree...then had an op to remove it.....then about 6 weeks later had another biopsy op to check that the cancer had not gone into my tissue/muscle...then had drug BCG in the bladder about 9 times over the year...which is a 5 mins job that helps to kill off any random cells lurking in the bladder. So far so good...this happened about a year ago...will have another 3 squirts of Bcg again soon which will hopefully keep it in check.  It is very scary but it can be treated a lot easier than other cancers...and the bladder is contained and really just a little sack to drain the fluids from your kidney....so if it is cancer and it started in your bladder it is unlikely to have gone anywhere else except the toiler bowl... so try and stay positive and try not to worry....there is a lot of help on here for you...we understand perfectly how you are feeling .....let us know how you get on...big hug x. 

Hi Rachel,

I hope all is going well for you. I had my first episode of blood in urine in June last year and I was also terrified. My wonderful consultant told me that my cancer had to have been in my bladder for at least one year if not two ... it was about 3cm in length. I also had a smaller growth (a few mm) and both were removed with the TURBT. I then had 9 BCG so far. All is clear and has been since the TURBT. The cancer was T1 G3. Early stage, but aggressive ... and had been there for more than one year... I was terrified too. As many here will have already said, bladder cancer is curable if taken reasonably soon. So try not to worry. There are many solutions and many treatment at our disposal and medicine has made a lot of progress recently. Do let us know how it goes and good luck!

Marco

Hi there what's a BCG please 

Hi Lorraine. BCG (Basillus-Calmette Guerin) is an immunotherapy treatment used for non muscle invasive and aggressive bladder cancer. It triggers the immune system in to action. A course of treatment, usually following a TURBT to help clear any rogue cells and help prevent recurrences. Administered directly in to the bladder in sessions over a number of weeks. It is a mild form of the vaccine used to treat tuberculosis. Best wishes.

Hi Rachel

Having been there I know what you are going through.  Just to assure you, they found cancer on my bladder so I went with radical surgery and a stoma. I am grateful and alive and life is great

There are many treatments so all is not lost but I hope that you have not got bladder cancer

Love Inanna x 

Thank you so much for explaining