After being diagnosed with bladder cancer I found it initially difficult to understand what was happening and what to do next. I was given a huge amount of information to digest along with carrying the fear of things not working out for the best. The first thing that was easy to get my head around was the removal of the tumour. At this stage it’s vital that this is done so they can see the grade of the cancer and to take a biopsy of the tumour and muscle around the bladder wall so they can see if the cancer is contained within the bladder. Once this is complete you will have a choice to make. If the cancer is contained within the bladder lining you can treat this with a number of treatments. The most common treatments will either be chemotherapy or BCG. Both procedures generally require you to visit a hospital once a week for 6 weeks, where you will have either treatment put straight into the bladder, through the uretha. You can also consider the removal of the bladder completely, which is a major operation, but it does eliminate the possibility of the cancer leaving the bladder and spreading. You can also consider alternatives to this that will need to be discussed with your doctors. I opted for the BCG treatment after reading up on all three of the options I was considering. If the biopsy showed that the cancer was more invasive and moved out of the bladder into the muscle then the likely hood of the cancer spreading to other parts of the body is very high. In this instance the options will be different. The removal of the bladder will be most likely along with other possible treatments. This will need to be discussed with your medical team. There are a number of ways that the bladder can be removed. Again this will need to be discussed with your medical team to look at the best option for you, I was fortunate to be diagnosed with non-invasive bladder cancer and so didn’t consider the removal of the bladder for myself. Once you finish your treatment of BCG in my case you are put under general anaesthetic so they can look within the bladder with a camera and to take a biopsy. This is to see if your treatment was successful. If your results come back showing cancerous cells present then you have the exact same options as before available to you, which is unfortunate but sometimes the process takes more than one effort to be successful. I was fortunate to be told that my treatment was successful. However being told your cancer free didn’t end there for me. There is a chance that cancer can return so to be extra safe and try to prevent this happening I was given the option to under go what was explained as maintenance work. This involves me receiving BCG every 3 months for 3 weeks, over a year. I’m currently in that process right now. After the year I will receive a cystoscopy to see if the bladder is clear. If that is positive I will then have to visit every 3 months for a year, each time receiving a cystoscopy. The treatment process can be long and difficult, but it’s vital we persevere to rid ourselves of this disease.
Thank you, that was very helpful information. I am just starting this journey. Have had two operations to remove the 5 tumors. Have a doctors appt. this Monday to discuss when my BCG treatments will begin.
It’s lovely to hear from you and great to know that my experience have helped you in some way. I do hope your 2 operations weren’t to stressful and the healing process not to painful.
Glad to see that you are considering starting your treatment with BCG. It is a very popular treatment option and in many cases very successful. I’ve added a link below, which looks at my experience with this drug. It is in no way a common reaction to receiving BCG and I believe my experience is rare, but it does give an insight into some of the side effects that can take place.
I do wish you well with the next phase of your journey and hope your treatment goes according to plan. Please keep us updated on how things are going and I am always here to offer you support and help on your journey. Take care LarryD and Happy New Year! Noel, (BladderCancer.net Team Member)
Has anyone else in here Had a recurrence of T1 urothelial carcinoma in the bladder after the initial cancer was UTUC and went through total nephrectomy??
This is what I am facing! Had left kidney and ureter removed in March this year. Last week I went for my scope, told the Dr I was in bad pain in urethra area. I had ovary removed 2 weeks prior due to a baseball sized cyst(non cancerous, thank God) and actually thought they might have damaged something when removing catheter! He proceeded to scope but pulled back after a brief moment and told me it was a tumor in a very painful area of the bladder, close to urethra! He set up for biopsy that evening due to his schedule and the fact I already had malignant UTUC. He ended up removing 4 small tumors, largest just 1 cm, anoth .5 cm and 2 other tiny ones but not close together. Was told definitely need treatment but waiting on pathology to determine the type.
SO.. I have NO clue what to expect!! After researching, I am more afraid than ever…
Hi @pixie91, you have had quite an experience with all of your pain and procedures. Recurrence of cancer can be extremely difficult to cope with. It’s like you’ve gone through all of these treatments just to find yourself back at square one. Sorry to hear of it all. It’s normal to feel anxious and scared about what will happen next, in fact many community members come here to talk about that. Do keep us in the loop with what happens next, we are here to support. I’ll be thinking of you. Take care, Sarah (BladderCancer.net Team Member)
I had a office cystoscopy then a surgery for to do a TURBT. The biopsy showed my growth(s) were of the papillary high-grade non-invasive bladder cancer. I went through 6 rounds of BCG that was always done in the doctor’s office. The only side effect for me was a low grade fever. A month later I had a second surgery for a “deep biopsy you don’t want to be awake for.” Today was my last visit for this round of festivities.
It showed everything looked normal at that point. I get to go in for an office scope every three months for a year. But with the recurrence numbers I see I suspect I will be back for round two. Not if but when. I met a gentleman on my last visit who had been dealing with the same thing for just over 15 years. He said it was like the movie Groundhog Day.
We know that the emotional struggles and health issues from cancer may not necessarily “end” after treatment, so do know that we are here to support you as you embark on this next chapter in your journey.
Wishing you the best,
Sarah (BladderCancer.net Team Member)