- This topic has 7 replies, 4 voices, and was last updated 2 years, 5 months ago by
.
-
Posts
-
Hi All:
As many of you know, I posted that I have a potential recurrence after a 12 year hiatus. My journey began in 2008 when I had a large amount of visible blood in my urine. Tests revealed tumours in my bladder and it went from there. After my first TURBT I had a set of 6 BCG. I had cysto checks every 3 months and was fine until July 2010 when a single tumour of same stage and grade was discovered at my cysto. I had passed a small amount of blood a couple weeks prior to my cysto check. That cysto was followed by a second TURBT and 15 BCG treatments. This time around I had no visible blood to alert me to the fact that something was going on. In fact, I’ve had no symptoms whatsoever. I hope that this means it is a much earlier stage tumour and the greater chance that I may not need treatment or as much of it. I’m holding onto a very slim hope that it could be benign.
I have been on this journey for 14 years and thought that I was technically at an end of it except for an annual checkup. Who knew that it could come back at this late date? Now I know why doctors are reluctant to use the word “cured” and prefer NED or no evidence of disease.
I do mull over in my mind about what could have brought on the recurrence – did the effects of the BCG treatment finally wear off? Was is stress? Did I eat, drink something that affected my bladder? Did the extra intense cleaning that I was doing during the pandemic have anything to do with it since I was using stronger cleaners? Right now, I don’t have any answers and realize that I probably won’t get any, much like in the earlier parts of my journey.
As for my emotions etc. I went into shock when I saw the tumour and had a good cry after I left the hospital. But thanks to the knowledge that I now have courtesy of BCC and its volunteers and also having a different uro who has a much better bedside manner makes all the difference. I do feel more settled. I don’t have all the stress of the unknown that I had the first and second time because I’m an educated patient and know what to expect. I’m just annoyed and “peed off” that I have to do this all over again.
A friend posted this on my FB page this AM. It was a quote of Budda’s contained in a CBC news article.
“Don’t try to calm the storm. Calm yourself. The storm will pass.”
Another quote that originated in Great Britain at the start of WW2 – “Keep Calm and Carry On.”
Bring on October 4th and good-bye tumour. (((HUGS))))
Hi MarySue,
All good quotes! I am hoping this time around it passes quickly and you’ll be back to a ‘cured’ state again! All the best to you
Hi Marysue-
Big hugs ! Love the quotes .
So weird there were no symptoms.
So after 14 years you kept the annual cystoscopies? Are you given that choice because my urologist is saying it’ll be for the next 10 years once I start on the annuals.
I am still at every 3 months in my third year and so now reading your posting about your recurrence with no symptoms has put an exclamation note for me to keep up my yearlies even after 10 years.That would be nice if we knew how we got it. I did the same thing with questioning.
Thankyou for sharing.
You also mentioned you have a new urologist and you are happier with him. That helps for sure.
All the best and more hugs for you Marysue.
TanaHi Tana:
When I was at my cysto check in September 2020 my uro gave me the choice to cut loose if I wanted to since I was 10 years clear. He told me that the protocol in Alberta is to follow a patient for 10 years and then they can cut loose if they wish. I said no because I know of others where the cancer came back after 12, 15 and even 18 years. My gut feeling was not to cut loose and given what has happened to me this year, I’m glad that I listened to my gut. When I said no, my uro was fine with me continuing regular annual cystos. The other reason was that I really like this uro and was concerned that if I did cut loose and then had a recurrence I might end up with someone else that I might not like as well.
I have ruminated over the years as to the reason(s) I could have come down with bladder cancer. There are quite a few of them but I don’t expect to ever know for sure. The main reason for bladder cancer is smoking but I’ve never smoked a day in my life so I’ve looked at the following:
1) I grew up in a very smoky house. Both my parents were very heavy smokers and later my two brothers took up the habit so for many years I was inhaling probably the equivalent of 3-4 packs a day. Most of my friends parents smoked so I’d be going from one smoky house to another smoky house.
2) I worked in several offices that had many smokers smoking up the place everyday – this was in the 1970’s and 80’s before smoking was banned in the workplace.
3) I was also exposed to cigarette smoke in restaurants, airplanes and even my family doctor smoked. When mom took me in for a checkup and he had no other patients waiting he and mom would sit down at his office desk and light up. I would be sitting there breathing in the smoke from two cigarettes.
4) I grew up in the fruit growing region of the Niagara Pennisula in Southern Ontario. At the time – 1960s-1970s farmers were using all kinds of sprays on their fruit trees even DDT. My friends and I would often be riding our bikes through the orchards when the farmers were spraying. No one told us it was dangerous. I also picked fruit for several summers to earn pocket money. This meant I was touching and potentially inhaling toxic chemicals as I picked the fruit.
5) I swam in Lake Ontario and Lake Erie at a time when it was heavily polluted and also ate fish from the lakes.
6) I dyed my hair for many years. There is unsubstantiated research that dark hair dye may contribute to getting bladder cancer. Hair dressers are at a higher risk for bladder cancer due to their exposure to chemicals so what say that clients are not exposed to the same risks when dying or perming their hair on a regular basis?
7) At our 2011 in person Bladder Cancer Canada patient meeting here in Calgary one of the presenting urologists mentioned that some people have a reduced ability to clear toxins out of their bodies and it could be a potential cause for the higher risk of bladder cancer. Given that I was born with urological birth defects I have wondered if I’m one of those people. There isn’t a testing system for this in place right now.
8) I used to swim a lot in public pools that used chlorine. Did my exposure to chlorine have anything to do with it?
9) There has been some research looking into whether bladder cancer is inherited. I know of a few people where they have/had relatives with bladder cancer. Since all my extended family lives/lived in Great Britain, the USA, and some distant cousins live in Australia, I’ve had next to no contact with them, so I have no idea if any other relatives had or have bladder cancer and what could have caused it for them.
And of course, fast forward to 2022 with my third go round with bladder cancer after a 12 year hiatus… Why did it return? My uro couldn’t give me a definitive answer. I’ve had an extremely stressful year. Did that have any bearing on it? I’ve been using stronger cleaners because of the covid pandemic. Did that cause it? Did I eat or drink something that I shouldn’t have? Was it because I got slack on my exercise routines and gained weight? Did menopause have anything to do with it?
I could go around in circles with this and drive myself insane. I have just concluded that I have been handed the **** end of the stick when it comes to health issues and am just taking it one day at a time. If any of the above contributed to my getting bladder cancer, a lot of it was beyond my control. I had no control over my exposure to second hand smoke or the chemicals being sprayed on the fruit trees. I was not the one that polluted the Great Lakes other than accidentally peeing in the lake once or twice as a little kid.
I have decided for my mental health and sanity I need to let go and let God. All that being said, it is a bit easier mentally this time around. I no longer have under age kids. All are independent and earning their own living. I no longer have the stress of caring for elderly and ailing parents. I am retired and no longer have the stress of trying to juggle my bladder cancer stuff with work and work issues. I’m not rich but I do have enough for my needs. I also have the support of everyone at BCC which I did not have before.
A conversation this week with one of the clinic nurses really helped. She said to me what my mother often said, “It could be worse.” At first I bristled at that but after some further thought, I realized she and my mother are right. Despite the bladder cancer and believing that I was given the **** end of the stick, I am in decent health otherwise. I don’t have any other health conditions other than minor ones related to aging. I’m not on any prescription medications. I only use over the counter pain killers to deal with BCG side effects, take vitamins and use over the counter eye drops for dry eyes. When you look around there is always someone else worse off than yourself. Right now I think of several people that I know and it is so for them. They are having a much harder time than me. It is this that gives me the hope to keep the faith and carry on. ((((HUGS))))
Oh wow Marysue-
Thank-you for your posting. That is quite a list of exposure to toxins – and you are so right – it’s not your fault and that it could be a lot worse, that you are doing good.
Yep- keep the faith-All the best – Tana
- You must be logged in to reply to this topic.
