Here is my story

[Marie 1]

Hi to all. I have been reviewing this forum for a couple of weeks now and I love the support and encouragement that you give to each other.

I was diagnosed in March of this year with non invasive BC. This came out of nowhere one Saturday afternoon when I discovered a lot of blood in the toilet. I immediately that day went to the local walk in clinic and was advised by the doctor that this was probably not a UTI but something else. He strongly advised me to have an ultrasound and see a urologist. My GP ordered the ultrasound and sure enough two tumors were present. One measuring 2.0 X 1.5 cm the second measuring 1 cm.
I was then referred to a uro who ordered a CT scan of the pelvis and abdomen along with a cystoscopy. After all was confirmed a TURBT was scheduled for the end of April. I was informed that the tumors were low grade and that I also had multiple superficial tumors making me high risk. Six weeks after surgery I had 6 BCG treatments. I went for my follow-up scope on Sept 8 th and unfortunately the news was not what I hoped and prayed for. The doctor saw something he claims to be very small right at the original surgery site. He says he can’t be sure what it is, scare tissue, reaction to the BCG or the cancer is back. He did say I could wait 3 months till the next scope to see if anything has changed, but we both decided
to have another TURBT which will take place this Monday the 28th.

I am so afraid and anxious. I too like many turned to the Internet to research BC
and have myself loosing my bladder and or dying. How could this be happening to me? I am 54 and stopped smoking when I was 18. Maybe it was from those long nights in those smoky bars when I was younger.

Before I head into surgery for the second time in 5 months I would love some encouraging words from you the people that have gone through what I have and more. I some how have to think positive and know that I can beat this. I have to come to terms that BC is now a part of my life.

Thank you for taking the time to read my story. And I hope to be able to join in and hopefully support others through my experiences.

Marie

[Jack Moon]

Hi Marie

Welcome to our discussion forum. I have experienced what you are now dealing with. I was diagnosed in 2005, have had several BCG treatments including 12 maintenance treatments. My original 3 tumors were, 1 large and 2 small, 2 were low grade and 1 was med grade. Uro recommended 6 BCG treatments. After the treatments Uro did a cysto and sure enough 1 small tumor in the same area as the original 3 appeared. Had a 2nd Turbt followed by another 6 BCG treatments. Again at next cysto 1 small tumor appeared low grade, removed and I asked for another 6 treatments. Immediately after this Turbt Uro injected Mitomycin C into the bladder. That was my last Turbt in early 2007. This was followed by 12 BCG maintenance treatments. I still have yearly Cystos but have been all clear for 8 years.
You might want to ask your Uro if in your case would 1 instillation of mitomycin C is appropriate at this time.
Hopefully what your Uro saw at last Cysto was not a cancer tumor but a remnant of the BCG treatments.
Wishing you all the best on Monday.
BCG = Bladder Cancer Gone
Jack

[Marie 1]

Thanks Jack for communicating back so quickly.

I did received mitomycin immediately after the first TURBT and will receive it again this time.
I am afraid I did not respond to the BCG and won’t the next time. I know I am jumping the gun again.
One thing I can’t get out of my head was my uro said is if the cancer is back it is a bad cancer. Not sure what he meant by this.
He did say when I left his office that this is more of a pain in the ass then anything. I hope he is right.

Marie

[Jack Moon]

I know how easy it can be to be a little negative. After having a couple of recurrences I had the same thoughts. Most Uro’s will say that low grade non invasive bladder cancer can be a pain in the ass. Like a kitty cat, might wander off for a while but usually returns, hence why we all need to be checked so often.
Trust me you will get through all this, if I can then anyone can.
Good luck on Monday.
Jack

[Marie 1]

Thanks Jack!

[DDep]

Marie 1

I am an Engineer so I like to analyse things. (Sometimes too much – which is not good).

I had a single TaLG Tumor 4.5cm X 3cm removed.
The Urologist “look at it” during TURBT made him think it was worse than it was. So, I had a second TUR. When he saw it the second time, during the second TUR, there were little pimples around the resection site. He thought they were little residual/recurrent tumors. Later, the second pathology report said they were nothing but healing “scar” tissue – no tumor present. Maybe that is what your Uro is seeing.

I am being treated with BCG because of the original tumor size and because there was a small area of High Grade in the tumor body. In the “old” grading system it would have been a TaG2 Tumor – so says my Urologist.

For myself, I expect a recurrence. I am not worried about recurrence – because, I have accepted it as part of the treatment and the disease. Yes, there may be progression, but I cannot do anything about that right now – so I try not to worry about that aspect for now.

Here is why:

Quoting from this source: http://blcwebcafe.org/content/view/103/113/lang,english/

“* For recurrence rate, multiplicity of the tumor is most important, followed by recurrence rate, volume of the tumor, grade and T category.”

And

” Recurrence, which may be expected in 50% to 75% of cases but is usually of the same grade and stage, can then again be successfully treated by repeat TUR. There is evidence that one instillation of intravesical (instilled in the bladder) chemotherapy can delay the time between recurrences. [See also: intravesical chemo] ”

/end of quotes/

You said you had multiple tumors – that is a factor that adds to recurrence.

As I say, I just finished my 3rd BCG installation. I read, and have been told, that it usually takes some time for BCG to “kick -in”. It varies from patient to patient, but according to SWOG (Dr. Lamm, the father of BCG protocol), anything earlier than 6 months is too early to discount BCG effectiveness (ie. initial 6 week induction and maintenance treatments).

The other element is progression. That is upstaging your tumor to a higher stage – e,.g T1. There is a low probability of progression with TaLG Tumors even with no intervesical treatment.

If you want to look at your chances of recurrence there are EORTC tables and BCG tables available.

Here is a calculator I use for recurrence rate and progression (BCG):

http://www.aeu.es/Cueto.html

Finally, there are many people on this site that have recurrences and have been successfuly treated – Jack is one.

HTH (Hope this Helps) lessen the worry.
Chances are – you will be fine.

DDep.

[Marie 1]

DDep, thank you for this.

I have to work on living one day at a time and begin to think more positive. (Easier said then done)
This will help me to cope with any recurrences and concentrate on treatment.

We are newly diagnosed so we are just beginning our journey. I pray to be one of those people who can say one day I was successfully treated for BC.

Marie

[cheryl9]

Hello Marie

Wow, do I ever know where you are at! Your story sounds so much like mine. I was diagnosed at 52 after blood in the urine. First surgery removed 3 cm tumor, non-invasive and mostly low grade and “multiple superficial tumors” around the left orifice. 6 BCG treatments. No chemo with surgery. 3 months later, 4 tumors and surgery required. Me, once again, swinging from the rafters. No chemo but 3 BCG treatments. Next cysto, one small tumor removed that day. Not sure who was bouncing more: me or my uro. 3 BCG treatments. Next cysto, one tumor with feeder (= high grade) and one other tumor. This was now a year after original surgery. Surgery once again and confirmed high grade but still non-invasive. 6 BCG treatments. Last cysto was just over a week ago. All clear!!! First time! Will be following up with BCG in October. So, in just over a year: 3 surgeries, 6 cystos; 18 weeks of treatments. I have heard of several people who have had way more than 18 BCG treatments and locally where I live there is one person that has had 51 treatments.

From what I can figure out after getting all the doom and gloom stuff out of the way, standard treatment goes something like this: surgery with Mitomycin C as an option but not compulsory; 6 BCG treatments; 3 month checkup and if things are clear from here on then you go on maintenance. Maintenance involves cystos and 3 BCG treatments every three months for the first two years then cystos and 3 BCG treatments every 6 months for the next year. Then you go on annual checkups. If a cysto isn’t clear then you start over again. This is for non-invasive. If invasive, things go to bladder removal pretty fast and chemo. Sounds really scary but, heh, it is meant to save your life.

What to take from this long winded explanation: recurrence rates are high and this is just how it is; BCG is awesome as your main weapon but it can take time to work; would appear that, as long as tumors are non-invasive, BCG is the way to go and uros strongly agree with this; swinging from the rafters goes with the territory.

One other person commented that they couldn’t see how anyone would like BCG treatments. I do. I focus on what the BCG is doing for me and the treatment process itself is an extremely small price to pay for my bladder and/or life. I also like BCG because it means I am moving forward in my treatment. Not allowing those little cancer buggers to have a free reign party in my bladder. No partying allowed in my bladder!

Turning to the internet for researching BC is a big mistake in my books. Will scare the pants off you. This site is way more realistic.

Afraid and anxious? Oh, man have we all been there. I remember literally shaking over those three words “you have cancer” and I lost a lot of sleep about how I was going to break the news to my sons. In the end, nothing was as bad as I was anticipating it would be. As a member of the human race, we are all really good at blowing things way out of proportion and putting way too much time and energy into worrying.

You really need to look at the surgery as a positive thing. The only other option is to let those cancer buggers continue growing and partying inside you.

I wrestled with loosing my bladder and how much I didn’t want this to happen. I am now at the point where I would rather loose my bladder than my life. There is too much life left to live and every day I thank God for giving me another day. Then I figure out how not to waste the day.

For where you are at, I suggest: cry; take a deep breath; hug those that are close to you; cry some more; talk; spend time with those you love. Most of all, make sure you are on time for your TURBT on Monday!

Most of all, remember that things will get better. No matter what route God has decided for you.

Take care

[DDep]

Marie,

Yes, we are both beginning our journey.
Life is what it is.

I have accepted that I have Bladder Cancer.
I know that I have been diagnosed non-invasive BC.
I know that with Ta and T1 the recurrence rate is high.
I hope I do not get recurrence(s) but the reality is that I will not be surprised if during future Cysto(s) a tumor is detected.
I pray that it doesn’t progress further – but I will deal with that if and when it comes.

People on this site have helped me to keep hope and think positively.

The hardest emotional times for me, were (and probably will be) the waiting, and worrying periods between the times of the TUR and the Pathology reports.
I took long walks. I did my hobbies. I spent quality time with my family.
I would be so wound up that when the Uro finally read me the results I wept almost continuously for the rest of the day.

There is an emotional rollercoaster to this disease to be sure. I think it is because of its very nature – Due to high recurrence probability for Ta and T1 tumors, one can never really be cancer free. So, one is destined to relive the emotions over and over again each and every year the rest of our lives as we monitor our bladders.

BC is still in the back of my mind and it will probably stay there the rest of my life.
With time, my coping skills, no doubt, will grow with me.

HTH

DDep

[Marie 1]

Cheryl, I thank you for all of your positive words. I just wish I could sit around a table with all of you on this site,

I will try and stay positive for my Monday TURBT and continue to push forward. I do believe in God and know that he will look after me.

I had no problem with BCG treatments and from reading this site BCG seems to be the way to go. It is wonderful that your last cystoscopy was clear!!

I have cried lots and am trying to lean on those that love me, but it also has been hard on them.

Again, one day at a time.

Thanks again
Marie

[marysue]

Hi Marie 1!

Welcome to Bladder Cancer Canada and as folks always hear me say “the site that no one wished they had to belong to”. I too, have had a repeat cancer journey. I first diagnosed in 2008 with multiple ( I think 6-8) TaG3 tumours meaning they were non-invasive but high grade. I followed the TURBT with 6 BCGs as recommended by my uro and was good until July 2010 when a single TaG3 was discovered at my cysto check. I had a second TURBT followed by a second set of 6 BCGs and 3 sets of 3 (once a week at 3 mths, 6mths, and 1 year from the date of my first BCG) That worked out to 21 treatments over 3 years give or take. I’ve remained clear ever since.

I stressed out a lot mentally over the cause since I’m a non-smoker but realized afterwards I had spent a lot of time exposed to second hand smoke. While it still hasn’t been proven for sure whether it can cause BC I figured between that and all the chemical exposure I’ve experienced, I was a ticking time bomb for BC but didn’t know it. Once I realized this, I accepted the fact it was something beyond my control but I can control the future and now do do a lot to avoid exposure, exercise, eat better etc.

I had a lot of BCG side effects ranging from fever, muscle and joint pain, bladder spasms, sore urethra and coping with a version of medical PTSD due to childhood uro-genital surgeries that had left me with some serious suppressed memories that resurfaced. That and coping with the onset of menopause, depression and anger over getting cancer etc. etc. made for a very scary time. I discovered this site in 2010 when I went online looking for help. The cancer centre here in Calgary didn’t have all the services in place back then that they do now so I felt very scared and alone. I desperately needed to talk to someone with BC and could understand what I was going through. Needless to say, this site was a godsend and help me tremendously. After talking to many others whom I realized had had a much tougher time than me helped me put things in better perspective and put my big girl pants on and go and get the job done.

I was able to get my head around the situation and get back on a more even keel. The first part of the journey is the scariest. Once you learn what your situation entails and the road you are on it’s still scary but at least you know what you are dealing with. BC as you have learned does have a high reoccurrence rate but I think that you can take comfort in the fact that what your uro is seeing is something small not massive. We will hope and pray that a few more doses of BCG will do the trick. Sometimes its effects take a while to kick in.

Looking back, I realized I made a real journey to discover who I truly was. While I don’t recommend this method to anyone – cancer is not the way to go for that, I’m grateful for everything and take it one day at a time. As you progress you will learn to let go of fear which helps the mental game tremendously. Your faith can play into that. I too, believe in God and did tell him that if he has work for me to do I can’t do it from a hospital bed flat on my back but need to be healthy and please show me the way. One of the main things I have Iearned was how to take care of myself and of my personal worth to this life.

Take care and stay in touch. Don’t hesitate to post questions or concerns. (((((HUGS))))

[cheryl9]

Hello Marie

Do you have access to the BC walk on Sunday, 27th? This would be a great opportunity for you to meet and talk to others with BC.

I did the one day at a time initially then I realized it was zapping too much of my energy and keeping my stress levels extremely elevated. I decided I didn’t want to be there anymore. I put on my big girl pants, put my faith in the Lord and got on with life. Easy to say but not necessarily easy to do.

Yes, cry but don’t let it consume you. It can become too easy to stay stuck there. Part of my inspiration: a wonderful friend decided to go visit another friend with a 9-year-old with cancer and on round #2 leukemia to boost her spirits and do what she could to help her out. Her comment about the visit: she was so upbeat and positive I actually left in a better mood than when I got there! Mindset, mindset, mindset is so much a part of the journey. Also helps with getting sleep instead of tossing and turning all night.

I have also wondered where the source of my BC came from. Don’t smoke, don’t work in a chemical industry but breathed second hand smoke and lots of it while growing up. In the end, I decided not to go there. I have BC and no amount of guesswork, blame, stress, yelling or screaming is going to change that. My choice is to focus on the here and now and the future.

If you spend your time and energy in the past, it becomes impossible to change the future.

Take care

[cheryl9]

Hello Marie

Good luck today. No matter what the results, it will still be a step forward and, if there is another tumor, it will cut short its party in your bladder.

Take care

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