Newly diagnosed & unsure how I'm feeling about having bladder cancer & especially where to go from here....

[Terri324]

Seen my GP about blood in my urine (have always had issues with my colon & stomach), but the blood in my urine was something really new (hyst. 17 years ago, so not the cause of the blood), which set me to be scared....that was on 1-9-2017....On 1-17-2017 First appointment with Urologist, he scheduled doing cystoscope on 2-27-2017 which showed a tumor (to me it looked like a mushroom moving back & forth in liquid), which he scheduled surgery on 2-1-2017....wow my life was beginning to change even more.....On 2-27-2017 was the results are Non-invasive low grade papillary urothelial carcinoma (The Urologist said this kind of cancer grows like weeds--so for this first year he will check every 3 months --(If there are 2-3 times of it regrowing then he will try the chemo in the bladder)....The Urologist will see me on 4-18-2017 for the test on how my bladder is working (like how the muscles are working & such)....And then 5-24-2017 another cystocope (to see if it has regrown)....Just really hate the thought that every 3 months I've got to worry, stress & especially worry even more that it has regrown (yes I worry over everything), and yes I've been told not to think of it & don't stress for nothing (which is easy for someone to say - especially when they don't have to deal with it)...Have other medical issues & this just adds to the meltdown of my life.....My other thought is why have to go through this every 3 months - just remove my bladder so the cancer is gone & it has no chance of getting any where else??? Am I wrong for felling this way & where do I go from here...what have I got to look forward to???

[Phil444]

Hi Terri 324, sorry that you've had such a shock and no matter who you are it is a shock. I was diagnosed back in 2014 after a routine urine check at my diabetes review. I had the tumour removed and every 6 months have BCG and a check cystoscopy every 6 months. Try not to worry, I'm sure your consultant will look after you, they will check you regularly so that the tumours don't spread. There's lots of us out there so your not alone. Very best of luck for the future and try to stay positive.

[Terri324 in reply to Phil444]

Thanks Phil444, will keep thinking positive & your right you could say shock is/was the word also, yet also hard to believe......strange question what is BCG? My next cystoscopy is in 2 months& already worried about it & especially not a very patient person, so will just try to keep up the positive thought....Hope things goes good for you also....

[madnanny in reply to Terri324]

BCG therapy is an alternative to chemotherapy , my husband didn't lose his hair and was not sick like you are with chemo. It is an immunotherpy that attacks the cancer and learns to attack the cancer if it comes back.

[Terri324 in reply to madnanny]

Thanks,

[bizli]

Hi Terri 324, it is a shock. Deep breaths and know that the community here are there for you to sound off. The checks are to prevent regrowth and will get longer in between hopefully. Take care and good luck.

[Terri324 in reply to bizli]

Thanks bizli, will keep your advice & think positive (just hate the thoughts of having to keep waiting & when the time gets closer to have the cyst again I only worry even more), and will remember this community is here if I need to vent & for any/all results....

[come-unto_Me]

Hi Terri, I was diagnosed with aggressive bladder cancer January 2016, had Radiotherapy and in March had a scan which showed I had secondaries in the lungs and was started on Chemotherapy which ended in late August 2016. I have been told the Cancer on the lungs is stable and there is no active cancer in my bladder. Waiting for test and scan results is a drawn out process unfortunately it is part of the treatment. I am being cared for at the Belfast Cancer Center. Keep a positive spirit as it helps the healing process, it is my prayer you receive good news soon.

[Terri324 in reply to come-unto_Me]

Thanks come-unto_Me, will keep the positive spirit & also hoping you get good news also...

[madnanny]

My Husband went through the same as you and had BCG therapy followed by a biopsy. the first 6 sessions didn't work so he was offered 6 further sessions followed by a further biopsy. This biopsy confirmed that he was cancer free so he felt that going through all this saved his life ,he did say that although the treatment was a bit grueling he was thankful that he persivered with the the treatment. I hope that this will encourage you to go ahead with what is offered to you. Good luck

[Terri324 in reply to madnanny]

Thanks madnanny, I like your husbands good thinking and will keep that in mind as I progress....

[Marion62]

Hi Terri324.

I had the same diagnosis as you just over two weeks ago. A complete shock - no one was expecting this.

I was told there is a 30 to 40 % chance of it returning.

I am to have another cystoscopy in 3 months time - waiting for an appointment about the same time as you. If that is clear then I will have another one 6 months later.

Try to keep strong and stay positive - if what my urologist says is true then It appears we have a slightly better chance of it hopefully not returning.

Stay in touch and take care.

[Terri324 in reply to Marion62]

Thanks Marion62, will keep trying to stay positive and strong....I was told that for this first year I will need the cystoscopys for every 3 months & that this kind of cancer grows back like weeds (with no percentage of it not growing back).....But yes will stay positive & strong.....Will stay in touch on how things are going....mega thanks

[Marion62 in reply to Terri324]

Hi Terri,

It's strange how urologists differ so much in what they say- I would prefer to have a cystoscopy like you every 3 months for the first year as I worry. I also read that they recur very frequently.

I am not sure if I am supposed to be looking out for any symptoms. I feel exactly the same as before the tumour was removed.

Take care

Marion

[Terri324 in reply to Marion62]

It is strange how Urologists differ (but also other doctor's do differ also), yes I am glad that the cystoscopy will be done every 3 months, but I still worry just the same (still have blood in my urine), and I would of thought over a month after the last cystoscopy would have stopped...But when I go next month for the test on how my bladders muscles are working if there is still blood I'll ask if this is still normal....thanks much Marion62

[McLabhran in reply to Terri324]

Blood and tissue sometimes happens after treatments. The bladder will shed at times because of the treatment clearing away the bladder. Some people get UTIs especially women and that makes it very miserable for them. Just keep your spirits high and with the mindset of you as the warrior conqueror of this dis-ease.

[McLabhran]

Hi Terri. I just hate when doctors scare the hell out of people and are ready to remove body parts. One of the suggestions i would say to you is really research bladder cancer. You are fortunate that you were diagnosed with low grade and not high grade! BCG treatments do work for the great majority of people, but it is suggested that one pays attention to diet. Sugar is what cancer loves the best and thrive on a body that will feed it sugar.

Www.thetruthaboutcancer.cWww.thetruthaboutcancer.com

[pff-mlf43]

My husband's cancer doctor told him "the only cure for bladder cancer is bladder removal" but if you want to do the every three months cystoscopy followed with three BCG treatments for three years, we can do that, your choice...My husband's choice was the treatments..Today was his nineth BCG treatment and it pretty much knocks him down for a couple of days, he is 74 years old but wants to keep his bladder as long as possible. Hard choice to make , you have to do what you think is best for you and getting others who have had to make a choice and what they went through, will help you decide....Best wishes which ever road you choose!

[come-unto_Me]

I had a tumor removed from my bladder in December 2015, they could not take it all away as it had gone through the bladder wall into the muscle, I met with the Urology consultant early January 2016, he was very brutal in the manner he used to tell me I had aggressive bladder cancer and he was transferring me into the care of the Belfast Cancer Center, I met the Oncologist 2 weeks later and was impressed with his caring manner, he took time to explain the Radiotherapy treatment on the bladder he was starting me on the following week, 20 sessions over 4 weeks. When that was done I was scanned, talking with the Oncologist for the results of the scan he give me some bad news, I had secondaries on the lungs and as it stood I had only 11 months to live, he recommended a course of Chemotherapy that would take me to late August 2016, he did not give me much hope of it working with his full support I decided to go with it, it was tough going but so far it has worked for me, there is no active cancer in the bladder and the lung cancer has been stable since October, my next scan is booked for April 26th. I am 73 years old, my very loving wife is my main carer and we lead a near normal life, I still suffer from fatague but God is good to us and because of our faith He has granted us with a positive Spirit. I have a catheter in and will have it for the rest of my life. The team at the Belfast Cancer Center are great and have looked after me very well. Hope you get good news and keep a positive spirit, God bless you.

[westseajoe]

yes its a bit bothersome to have to go thru the 3 month thing, but its to be on the safe side- bladder cancer can recur so they want to make sure it does not do so. Where you go from here is anywhere and anything you want. I am 70 now and have been at this since 2012. I guess i dont worry about it and took it all in stride- i live alone and am more troubled by feeling disabled but i used my chiropractor when i need to and go about my business in my garden, listen to music and feed my cats!

[Kevster54]

From what I was told BCG treatment is dead tuberculosis cells. Bcg does a good job and at least you only take it in the Bladder even though it is painful and actually hurts worse the more times you are treated. For me I have no remission after 10 years which I believe is the result of how effective the BCG treatments are . Good luck.