Keep my bladder...for now: Just had... - Fight Bladder Cancer

Fight Bladder Cancer

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Keep my bladder...for now

Rojen profile image
23 Replies

Just had interesting talk with my consultant who points out throughout my bladder cancer history (from January 2014) my Cystoscopy biopsies have been showing decreasing levels of cancer over the period. Now it shows NO CANCER. This means I can keep my bladder for now and just have further periodical cystoscopies to ensure the bladder is monitored for early signs of cancer.

Whoopie!!!

I was all set to have the cystectomy and bag for life but I can chill out now and relax...for now

Roger

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Rojen profile image
Rojen
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23 Replies
Rossi68 profile image
Rossi68

Great news

erinlewis profile image
erinlewis

Fantastic Roger well done

GeoffCooper profile image
GeoffCooper

I resisted having my bladder removed after the removal of a stage 2 tumour in November 2008 that was originally diagnosed as a sarcoma.I took further advice and changed consultants after subsequent cystectomies showed no recurrence and I was informed that my notes had been 'misread' by a junior doctor. I have not received,or needed, any form of therapy and have an annual cystectomy.Whilst I do consider myself fortunate,(I am now 68) I was informed by one consultant,of the four that I visited,that my condition "Would not kill me,something else will !" Keep heart you all.

Wonderful news x

JustRita profile image
JustRita

Brilliant news 👏

hotoz57 profile image
hotoz57

Good for you!

Melian profile image
Melian

Excellent news. I am pleased for you. I was lucky enough to have the same happen to me and I know what a relief it is. Onwards and upwards, as they say!!

Rojen profile image
Rojen

Chuffed to bits for us both - nice to see i'm not unique.

Roger

I don't understand why so many in the UK have their bladder removed especially when the cancer is not muscle invasive. I am from the US, diagnosed March 24, 2015, at 49 as non invasive high grade aggressive. I have had 4 TURBTs, the last 2 of which were negative for cancer, (spots looked ominous was reason for checking). I just had my 4th cystoscopy yesterday of which revealed a very small lesion and redness around this lesion. Doctor thinks that it is most likely unhealed lesion from last TURBT but none the less checking my urine for cancer cells. Should this be negative, in two weeks I start a 3 week round of maintenance BCG. I am good and not in the least scared.

My wife belongs to a group whereby a 23 year old male has bladder cancer non invasive. He has been told by August that they are planning to remove his bladder. We have told him to get a second opinion as 23 is way too young to most likely lose his ability to be intimate, especially when he is non invasive. I understand some that are muscle invasive keeping the cancer from spreading by removing the bladder but not anyone who is non invasive. Why do you think this happens so often in the UK? This baffles me.

ChrisRS profile image
ChrisRS in reply to

Hi, I'm in the UK and having treatment for NMIBC. I don't know whether more people with NMIBC have RCs in the UK than anywhere else, but there are reasons to have the op. If you start with NMIBC and after treatment the cancer returns, if the cancer progresses to muscle invasive the prognosis is much worse than if you had first presented with muscle invasive BC. Even T1, which is a non-invasive stage has a worse prognosis on returning. So for persistent BC, an RC is the best option for survival, and to have it before the cancer is muscle-invasive. Not an easy decision though.

Chris

Rojen profile image
Rojen in reply to ChrisRS

Hi Chris

I was all set for the RC but my consultant convinced me that the close monitoring through cystoscopies will pick up any further invasion of the cancer with his assurance he will personally take out my bladder at the first sign of serious trouble.

So I am going down this route for now.

Roger

ChrisRS profile image
ChrisRS in reply to Rojen

Hi Roger

I'm in a similar position, and also relieved that I haven't had to have the op, so far. The regular monitoring is obviously critical, as any recurrence needs to be caught before it gets to T1, if possible.

Best wishes

Chris

ronno profile image
ronno in reply to

i agree,i am 57 and have had 4 surgeries to remove cancerous tumors,and still i have kept my bladder,,this is possible,keep your bladder at all costs,especially if your young...

Jim47 profile image
Jim47

My team of doctors are currently investigating options. My surgeon believes that if they decide to remove my bladder, he can construct a new bladder from part of my colon. Does anyone have experience with this?

Rojen profile image
Rojen in reply to Jim47

Jim

This is known as a neobladder and this will enable you to urinate the normal way. There is a longer healing period but this seems to be a more popular choice of surgery these days. Google it to find out more.

Roger

Jim47 profile image
Jim47 in reply to Rojen

Thanks I will. This is all so new to me!

Liz2597 profile image
Liz2597

Fantastic news hope it continues

BJCarter profile image
BJCarter

CONGRATULATIONS!!

PaMul profile image
PaMul

Hi Roger

What amazing news you must be thrilled! Any magic you can share with the rest of us? You must be doing the 'right things' to keep it away. I ask every doctor what I can do to prevent tumours returning and only get the replies, 'nothing', 'don't smoke' and 'drink lots of water'. Though I have found the book Anti-cancer by Dr David Servan- Schreiber enlightening.

All the best

Paula

Rojen profile image
Rojen in reply to PaMul

Hi Paula

The only thing I would recommend is to live your life with a positive attitude and take life as it comes.

In 2014 I had a stroke at work which changed my life from that day onwards. It was only the team effort of Southampton University Hospital that bought me back to 'normal' life again.

I used to be kind of person who worried about a every thing now I realise that life is too short and you should enjoy everyday as it comes.

Sometimes cancer can throw you a curved ball but if you catch it in time you can win the game.

Stay lucky Paula

Roger.

Macar profile image
Macar

Roger, I follow wholistic measures and they would include lots of cranberry juice without the sugar. In fact NO SUGAR at all anywhere. Cancer thrives on it. Also oxygen therapy. Cancer cannot live in oxygenated cells. It is proven. In Europe they treat all the time and US enjoys the chemo and money of cancer conditions. These simple ideas

Can get rid of the cells. Macar

Rojen profile image
Rojen in reply to Macar

Macar

Not the sort of life I would like to lead.

Just being positive and living a normal life is much more fun.

Roger

McLabhran profile image
McLabhran

Rojen. I trust that are very mindful about your diet? Cancer LOVES sugar and hates oxygen. For myself, I have cut out sugar completely (white/brown/cane sugars), no honey of any of type, fruits that have high levels of sugar. I also cut out anything white that one could ingest (certain breads, pastries (so sad for me), rice, pastas etc). Here is a website about different types of sugar.

smallfootprintfamily.com/th...

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