Homepage – Forum › Forums › Non-Muscle Invasive Bladder Cancer › Diagnosed with Papillary Urothelial carcinoma, high grade non-invasive bladder cancer in October
- This topic has 2 replies, 3 voices, and was last updated 10 years, 1 month ago by
marysue.
-
AuthorPosts
-
January 3, 2015 at 3:35 pm #8163
Lisa17
ParticipantI am a 51 year old female, Non-smoker, never been exposed to environmental chemicals and no family history of bladder cancer. I must say that this disease scares me beyond belief! I have had two TURBT as the initial resection had no muscle wall present. I am scheduled to start the BCG treatments on January 19th. The shortage of BCG has delayed the treatments slightly. Should I be getting a second opinion? Has anyone had any experience with the Cancer Centre in Oshawa? Should I be going to a larger cancer centre?
Thanks,
LisaJanuary 3, 2015 at 5:41 pm #18448Greg
ParticipantLisa:
Sorry to hear you have joined the ranks of bladder cancer survivors, but glad to see you join us here on this site.I have no experience or knowledge of the Oshawa Cancer Centre. I have lots of experience with Sunnybrook Hospital (Odette Cancer Centre) in Toronto, forty minutes away.Whether or not you should get a second opinion is going to depend a lot on what expertise and experience exists among the urologic oncologists at Oshawa along with their staff of urologic nurses and lab techs. Get a copy of your pathology reports as you go along; they will help you understand your disease and we have people on this site who can help interpret what they say. I got a second opinion when I was told my disease had progressed from non-muscle invasive to muscle invasive. I was previously at a hospital on the outskirts of the GTA and went to Sunnybrook. Glad I did! Large cancer centres have pretty much seen it all when it comes to this 5th most common cancer (12th among women), but smaller centres perhaps see fewer cases. Muscle tissue should usually be a part of the resection of tumours to ensure there is no muscle invasion.
The BCG treatments are certainly standard for certain stages and grades of bladder cancer. Knowing what is contained in your path report would help you determine that, though there is no reason to doubt it.
All the best in your treatments. As you go through them, keep us posted on the experience and feel free to ask questions. Most if not all of us have been where you are and can share our experiences and what we may have gleaned from the journey. The more you know, the less you will be afraid, so learn as much as you can and keep a really good attitude going forward.
Greg
January 4, 2015 at 3:47 am #18449marysue
ParticipantHi Lisa:
Welcome to the site but sorry that you have need of us. Greg has pretty much summed it up. I too, am female and was 50 at the time of diagnosis of non-invasive high grade bladder cancer. I’ve survived 21 BCG treatments so if you want to contact me if you have questions feel free to do so. I was first diagnosed in 2008 before the time of this organization and found it when I experienced a reoccurrence in 2010. Yes, this can be scary but the key here is “non-invasive” meaning that the cancer hasn’t gotten into the muscle wall of the bladder. High grade means it has the potential to become invasive but not necessarily a guarantee. I’ve been cancer free for 51/2 years and plan to remain that way. In my case I was probably a ticking time bomb for it and didn’t realize it. I’ve never been a smoker but was raised in a household of heavy smokers and most of my friends parents were smokers. Even my family doctor was a smoker and he and mom would each light up a cigarette and chat to catch up after she’d brought me in for a checkup! That was small town 1960’s for you. I was also exposed to a lot of chemicals and pollution and workplace smoking for several years so that may have played a role.
One of the first questions someone diagnosed with a disease especially cancer asks is why, why me? It is a hard thing to get your head around. You especially feel betrayed by your body if you’ve lived a very healthy lifestyle and it can feel that it was all for nought. However those of us that care for ourselves despite the diagnosis are the ones that stand the best chance of beating the disease or at the very least slowing down its progression. I do the best I can with diet and exercise although I will admit to falling off the wagon ie this Christmas but I’m getting back into it and it will pay off. I call it “fighting back with what I know”. It does give you a sense of control over the situation. By doing what I can for myself by good diet, exercise, supplements, acupuncture, yoga etc. I feel I’m building up my body and making it stronger to fight the disease and prevent its return. Getting some sense of control helps reduce the mind stress.
Hopefully the BCG shortage will be over soon and won’t impact you in any really big way. Should there be a shortage in your area, there are other drugs available ie. Mitomycin C but BCG is reported to be the best for non-invasive high grade cancer. That being said, it would be best to consult with your doctor to see what is the best route for you to follow. The key to figuring out whether you should seek another opinion is to see if you can figure out if the medical people you are dealing with have treated a lot of bladder cancer. If they have then they most likely are top notch. If they’ve rarely seen or dealt with it then it will be up to you to decide whether you are comfortable with them or not. The majority of docs are pretty good and will refer you to others if needed.
Take care and stay in touch and let us know how it goes.
-
AuthorPosts
- You must be logged in to reply to this topic.