Reacuring bladder cancer

[Iffette2]

I am going in for my third operation to remove a tumour.".then I start on BCG wondering what this is like??

[julib]

I have had maintenance BCG for the past 2 years and find it incredibly relaxing. I am 46 with 4 sons and it’s about the only time I get to sit down and relax for 24 hours, once every 3 months. No side effects to speak of. The only negative is the catheter being inserted and removed but I have experienced that so many times now I hardly notice anymore!

[westseajoe in reply to julib]

the insertion is the hardest part for me- but the whole process takes about 3 minutes so cant complain

[Anniemouse]

Hi i too have had my third operation to remove a bladder tumor, off to see my consultant on Wednesday to discuss treatment

so scared , that is the only word that fits the way i feel.

Talk off having weekly doses of Mitomycin c for six weeks......

[PaMul in reply to Anniemouse]

Hi hopefully the really scary part is behind you now. Mitomycin treatment is to stop tumours returning. The treatment is pretty exhausting ( I’m usually knocked out for 4-6 days) but I’m happy to say I’ve had the all clear for over a year now. Still have over a year of monthly treatment ahead but every all clear check up reminds me why I’m doing it. Good luck and look after yourself

[Mynx in reply to Anniemouse]

Thinking of you. I had 6 surgeries for bladder cancer. Chemo, I started journaling, read my journal and only wrote in it for 4 days. You will be fine.

[Paulrayner]

Hi 18 months ago I was diagnosed with two tumours located at the top of my bladder, I was lucky if that's what you call it (it's never lucky getting that news) however I was lucky in as much as I spotted the sings very early they were removed very quickly and thanks to those lovely people at St. James's in Leeds after a total of 18 BCG treatments and several cystoscopy's I'm still clear.

It's understandable that you should have reservations regarding the BCG but honesty it's nothing to worry about I've only had one occasion out of the 18 when I had any noticeable side ceffects and that was the feeling of having a slightly blocked nose. I've another 3 treatment's to start in March to bring it on and thanks to Jimmies for keeping me alive!!

[westseajoe in reply to Paulrayner]

Not sure who Jimmies is but anyway- i was diagnosed in 2012 in Seattle WA and have had 2 surgeries followed by 24 BCG treatments so far with only 3 more to go in 3 months from now. Am guessing there was quite a bit of BC in my bladder- my surgeon said in some cases the cancer is so small they do not even treat with BCG at all after the surgery. Only side effect for me with after first time, and it was a slight flu like feeling- after that, nothing. Best of fortune!

[PaMul]

Hope all goes well for you

[westseajoe]

i am 70 and had my first 2 surgeries in 2012- the follow up for me was BCG, supposed to be the best treatment for follow up. After the first few infusions, it was very matter of fact- takes all of 3 minutes. First for me was 6 infusions, one week apart. Then 3 months off, another bladder inspection and another 3 infusions. and so on. The BCG is supposed to keep the bladder cancer from returning- so far, no problems. However....after the infusion, have to hold in bladder for 2 hours. There are urges to urinate and some have flu like symptoms. Pretty much have to stay around home for the rest of the day. Have Clorox handy to add to water when urinating and only seated urinations- letting clorox work on the BCG urination for 20 mins before flushing.

[Anniemouse]

Thank you all for the reassuring replies and the insight into your experiences.

I pray all will be OK and Blessing to you all x

I will keep you updated .... not urinating for two hours seems hard im always popping to the loo lol

[Iffette2]

Thank you for the info appreciate it!

[Anniemouse]

Thanks for all the support i have my first dose of chemo / Mitomycin next Wednesday

I have been having so many ups and down days ... i am trying to think ahead but it is so not easy,

does anyone advice going to these support groups that i see advertised , so unsure as to what to expect. I think that's the hardest bit ..... The unknown

[Letterhead in reply to Anniemouse]

Hi, I understand about support groups. I was diagnosed 7 years ago and what I noticed was that I was the only woman. There was a sitting area for men when I went for checks and I was sat on my own. This has made it quite a lonely experience as there are symptoms obviously unique to women that are difficult to discuss with male consultants! You can message me anytime if it helps x

[julib in reply to Anniemouse]

Everyone deals with cancer differently. I was positive the whole way through and never felt down at all. So it’s horses for courses. If you feel like you need to talk to someone I can only imagine a support group would be great for you. Go for it if you feel that way! Good luck. Julian

[julib]

BCG is a piece of cake! Had BC for 2 years now and other than wasting a day with BCG every 3 months, I have no negative side effects whatsoever. Good luck!

[westseajoe]

I am 71 and have been in treatment with bcg for the past 5 yrs. My cancer was extensive but not thru the bladder walls. Went thru 2 surgeries. BCG is not a big deal altho it may keep you at home for a day. The worst part of the bcg, i found, was the anxiety before the treatment. It takes all of about 3 minutes. The cath is manageable. Holding the bcg in bladder for 2 hours can sometimes be challenging. The first urination afterwards can feel like peeing razor blades at first but is over fast. One has to not flush for 20 minutes afterwards and one must add a cup or more of bleach to the toilet water. There could be urges to urinate from time to time in the first day altho not much is produced. Some experience flu like symptoms, headache or feeling a slight fever. I did the first time but never again.

hope some of this helps

[Dragonslayer]

Nothing to it. You got this.

[Dragonslayer]

BCG treatment is a lot easier. The tube they insert is smaller and less invasive. You will have to peee when you get up from the laying position. I think it is best to lay flat for a minut or two to let the BCG do its job before you go pee. By the way I am 53 and had 4 tumors removed from my bladder they were not through the bladder wall. I go back every 3 months for a cytology. All have been good news so far.

[alfiebear]

Don't be worried about BCG it is no different to having flexible investigation the worst thing you will feel is the cold solution going in the whole procedure takes about five minutes small price to pay for six weekly treatments x Good luck

[Anniemouse]

Hi i have had another scope and all appears ok , back in six months for another cystoscopy

Love and prayers for continued good health to you all

this is not an easy journey , but one we travel all together in different ways x

[Mynx]

I have had 6 surgeries for bladder cancer. Last one was at the neck of the kidney. BCG is ok.