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Viewing 15 posts - 1 through 15 (of 77 total)
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  • #8589
    ADaughtersLove
    Participant

    Hi guys, first I want to introduce myself. I chose the name ADaughtersLove out of respect for my Dad’s privacy. I come to this forum and this page through my love of him so I guess it is fitting. My father became diagnosed with Bladder Cancer 3 months ago. Previous to that he had been dealing with ongoing kidney stone problems. His issues with urinating continued after he had passed his stones, which led to further investigation. My dad has had around three rounds of biopsies. He recently had a diagnosis of Bladder Neck: High Grade Papillary and urothelial carcinoma in the situ with focal area of suspect invasion into the lamina propria. As well as High Grade Carcinoma in the situ, negative for invasion in the bladder dome.This was followed by a deeper biopsy and removal of the suspect area. During this surgery more suspicious areas have been found and biopsied. The Doctor said he was only able to treat/remove 60% of the areas that where suspicious due to need of further investigation of the new areas. So our next step is to go to Jurvinski to a Specialist for further info on Bladder removal and or treatment plan. Its strange how this all makes me feel. At times I feel like everything is moving so slow, then other times way to fast. My lack of ability to “fix things” is frustrating and keeping my mood positive for him is a full time job. Currently I know the waiting and unknowing is causing my Father some fear. We hope to get a specialist appointment soon as these “new” suspicious areas came about in the span of 12weeks. Currently he is undergoing some side effects from his past surgery, blood clots and frequent urination. He also had a improper cathader that caused some blisters and burning of his penis due to the Chemo flush he had post surgery. I pray for understanding and strength daily for him as well as the rest of our very tight knit family. My Father like many is the Corner Stone that usually holds us all together. This new role of his has taken a toll on his spirit. He definitively is not used to being the one being looked after. I also know that this is all confusing for us as this is the first time Cancer has struck our family. I also wonder if I am getting the full story, or if my Father so overwhelmed isn’t understanding the Doctors recommendations or findings. My saving grace and hope has come directly from this site. The initial day I found out of my fathers diagnosis I went directly into research mode. This site and all of your helpful forms as well as some great advice and friendship including kind words from Mr.JM is something I continue to be thankful for everyday.

    #17793
    Greg
    Participant

    ADL:
    Your father is a very fortunate man to have someone in his corner such as yourself.

    As you will have no doubt ascertained, bladder cancer is a highly recurring cancer – up to 80% of the time – so it is not unusual (though very unwanted) for it to recur, even multiple times. I expect you’ll get good counsel at Juravinski and have a clearer picture of the path forward. New tumours, or suspicious areas, do not take long to develop and 12 weeks seems consistent with what I found and many others have found too.

    Fear is a rather common issue to face in the light of an unknown future. There can be large hurdles to overcome, but most people do quite well and whether with treatment or bladder removal (radical cystectomy or RC) the future should be quite bright. Keep strong. You’ll need that strength and so will he.

    The burning and frequency issues he is facing are also normal following a TURBT (trans-urethral resection of bladder tumours). I think we all grow to hate catheters with a passion. I know I have.

    I don’t know how your dad responds to humour, but I have found it to be a very helpful coping mechanism when things go a little differently from what I might have hoped. It helps to be a little bit nuts!!!

    All the best to him. Keep in touch and if he needs to chat, he can always get in touch with us.

    Greg

    #17794
    Jack Moon
    Keymaster

    So great that you decided to post on our discussion forum. You and your dad and family can be assured that everyone here will do their best to ease his journey and share our experiences with bladder cancer. Getting another opinion from a major cancer centre is exactly what your dad should do.
    Questions you or your dad might have, just fire away.
    Talk to you soon.
    Hugs,
    Jack

    #17797
    millize
    Participant

    Dear Daughter’s love
    My name is DAD 2012 l was told l had bladder cancer, l went some time before l figgured out how to tell my three children.Its hard to hide surgery. Like your dad l was to take care of everyone now what? My daughter
    was my eyes, hears, and voice at times, l was blessed to have her at my side.I did all l could to hid my fears, the uncertainty was hardest to deal with. I delt with this one breath at a time, one piece of info at a time.Together we stood thru all that
    was to to come,That ment a RC , and prostate removal then recovery.We made each doctors visit a reason to celebrate , we found ways to laugh, after all if your going to the doctors your not , well you know.I’m now cancer free for 17 months
    YES THERE IS HOPE, THERE IS SUCCSESS Know every moment you are with you dad he feels loved and needed.
    REACH FOR FAITH
    BELIEVE IN HOPE
    KNOW YOU ARE LOVED ,

    #17801
    ADaughtersLove
    Participant

    Thank-you so much for the kind reply’s. Your words are very motivating and supportive. Yes, for sure my family is a lil bit nuts and humor has made things easier. Just this week I received a funny picture of my Dad posing and sporting his new (needed) men’s incontinence undergarments. Him writing “How do you like my new look”. lol. We will definitely be relying on some humor over the next while. Over the weekend my Dad ended up back in emergency with more blood clots, that he was unable to pass. He was given a catheter again and new medication to help with his urge to push, as well as a antibiotic for infection in his urinary tract. Luckily we have got the specialist appointment tomorrow with Dr.Pinthus at Jurvinski. I guess they will be reviewing his latest pathology reports and decide on a plan of action. I was curious about one thing that maybe some one can answer or give suggestions about. (And to me this sounds like a silly question-however here it is). For those that choose full bladder removal, does the risk of re-occurrence decrease? Obviously you wouldn’t have a bladder so common sense tells me yes. However, maybe the cancer does have a high chance of coming back in the surrounding areas? If so what area’s are the areas’s at the highest risk? Obviously it is differently for everyone. But was just curious as I am sure this is what will be discussed tomorrow. Any help would be appreciated. Thanks

    #17804
    Greg
    Participant

    ADL:
    Keep the laughter. It makes the harder times a little more enjoyable.
    With a radical cystectomy (removal of bladder, prostate, seminal vesicles and lymph nodes in men), the urethra is left if a neobladder is constructed so that voiding can be somewhat normal. In some cases with an ileal conduit, the urethra is taken too. The reason I mention that is that the cells that line the bladder also line the urethra and the ureters so that cancer can recur there in some cases. Lymph nodes can be affected. If the cancer gets outside the bladder and metastasizes, it can go to the lungs, liver, bones, peritoneum to name a few places. This is not the norm, of course, but it can happen.
    Those are not things you need to worry about at this point.
    All the best tomorrow with Dr P.

    Greg

    #17805
    ADaughtersLove
    Participant

    Thanks Greg, that makes sense to me now. The info pertaining to the same cells lining the urethra and ureters is the kind of info I was looking for. So thank-you.

    #17806
    millize
    Participant

    Hi again
    I wanted to suggest you and dad get a note book, so when you have doctor visits, you can write down questions as you think of them, and then ask for the answers at your appointments.l found for myself sometimes I heard what was said, but in could be alittle to much sometimes.It was easier to absorb when I could read info two or three times. But that could just be me

    #17809
    KIOWA
    Participant

    Welcome ADL. First greg is a Wonderful person, but he is beyond nuts. He’s the only one I know who still tries to hit a golf club with a golf ball and actually make a hole. I would rather not say where he makes the hole but it is rather funny to observe. Aside from that I really am sorry to hear about your Dad. Bladder cancer, as Greg mentioned is the type that has a very high recurrence rate and for sure a second opinion on his cancer is essential. Bladder cancer is a tough, no question about it, but it is doable. It will take you some time to get through all the words and phrases not to mention the emotions. But hang in there. As you and he learn more about his condition the better able you will be able to cope with it and get the proper help. On this end we will do whatever we can to assist you and to answer your questions. All of us here have been through this in some way or another so we know how it feels. You and your Dad will get through this. Just stay away from Greg if you dare to venture near a golf course.

    Kiowa

    #17812
    Greg
    Participant

    ADL:
    Think about it. A name like Kiowa! Who names their kid Kiowa? Nobody knows what his real name is if this person actually exists. He talks like he is from Texas, but he is on a Canadian site. He has pet dinosaurs, hunts with huge guns, drives a Camaro, worked with the CIA, FBI, search and rescue, local police – and no doubt also the intergalactic investigators at NASA. To say nothing about his career in medicine, though what medicine none of us is really sure. So be very cautious.

    Oh, by the way, he is also a wonderful support and very knowledgable bladder cancer guy (but don’t tell him I said that. I’ll deny it.).

    Greg

    #17818
    KIOWA
    Participant

    I find it difficult to agree with Greg on anything except everything but he is right for once. i am a great and knowledgeable guy. Sort of, on my plant we are all like that so I have to come to this place call earth in order to get a sense of greatness and a few bottles of tequila. I am concerned about what earthlings have done to Pluto though. Pluto still exists so Greg, please don;t minimize it. Unless you are thinking of Pluto the dog which is likely where you are at with your cognitive development.

    In seriousness (And seriousness is something I’m not use to) though bladder cancer is to be taken for real, because it is real and there are a multitude of feelings, discoveries, learnings, distractions, sleepless nights, periods of confusion (and infusion), times of dismay and on and on. But as Greg said, humor is the best medicine. That does not mean to take cancer lightly, it means that it is helpful to balance out all the negative things with lots of positives things. And believe it or not, even bladder cancer can present people with many positives. this family as an example, it’s wonderful, the people are wonderful (except for some Gregarious types) and they are loving and caring. And you will come to know love and true friends and family with BCC as you help you and your Dad through this. You have us to lean on and of course we are always here to do what Greg and I do best, confuse you. I hate to say nice things about Greg because he is mean to me but frankly he is the go to man when it comes to bladder cancer and hardships of all kinds and he knows better than anyone as to how to deal with those tough times.

    Jeanne, well she’s weird, but loving and knowledgeable and it’s not her fault she is Sicilian and Californian at the same time, por thing. But she has great recipes. You will soon see that while we take bladder cancer seriously, we have an infinite number of ways of helping each other. So please hang in there. It is of course the only way you will get to know why I was named Kiowa!

    Ki

    #17828
    Gord
    Participant

    Just a quick post to you today. I had all my chemo treatments at Juravinski from Jan thru April 2013, followed by a rad cystectomy with a neo bladder in June 2013 at St Joe’s with Dr S. Now cancer and mostly complication free, 13 months later. Good care all the way through.

    #17856
    ADaughtersLove
    Participant

    You guys are all lightening up my mood. I feel like I’m from another planet some days so I will fit in with Kiowa and Greg…..lol.

    Update: Dad just enjoyed a long weekend on the French River doing what he loves best. FISHING! He didn’t catch the big one….but its more about the chase then the catch so he says. But I disagree when it comes to my Hubby chasing me down….he got a better catch then chase! lol.

    Dad finally saw Dr.P at Jurviniski and left feeling so much better. My Dad is a visual type person so having someone take out a model of a bladder and explain it eased so much of his anxiety. I had found out that the poor guy had thought “muscle layer” implied all is muscles throughout his body. Only after the appointment had I realized he had been worried the Cancer was everywhere. This cleared up a lot of confusion. The Dr. also started him on a new medication to ease the constant need to urinate. Which has helped dramatically! He had been getting up every 20min through out the night. Now he can sleep for 4-5 hrs at a time. Dad is scheduled for another cystoscopy, biopsy and more removal on September 16th. The Dr wants his own view of whats going on inside the bladder. He did say my dad will need hospitalization after the day surgery since he had so many complications last time. This however is easing all of us as we know nursing staff is better suited to deal with clogged catheters then us running him back and forth to the ER. Dad will also go through Immunotherapy sessions. (BCG) I’ve spoken to Jack about this and it seems as though its the next logical step.

    I understand Dr’s treat via the least intrusive measures necessary, so it seems fitting that the Dr is not anywhere close to discussing full bladder removal until much more info is gathered. The latest pathology report shows that my Dad has three types of Bladder Cancer, 2-non invasive and 1 invasive. 2-non aggressive and 1-aggressive.

    We have been trying to enjoy our August as we know he has a long road in front of him. We have a few more family trips planned and hope to keep active and healthy for the mean time. Lots and lots of lemon water and reading up on how to keep the body in a alkaline state. Better to do something then nothing I guess.

    Thanks for all your support:

    #17857
    millize
    Participant

    Thankyou for taking the time to share.You are right there is a long road ahead. Smile, laugh and hug as often as you can, l’ve found it tobe great medicine. Please know my prayers are with you and your family.

    #17923
    ADaughtersLove
    Participant

    Well, the last few weeks have been very good. My family has tried to relax and enjoy the few weeks we have before my Dad’s next surgery. Getting him out and about enjoying the nice weather and keeping him smiling and laughing. Its only during my quiet times aside by myself that it creeps back in……the worry and heartache. I’m keeping positive the best I can. I find myself prepping for bad news when I don’t need to go there. I also have found myself extremely edgy and easily irritated. I look at what others are doing or saying, and ask myself “why are they being negative when we need positivity”? I remind myself that others deal with stress differently, but my patience wears thin. Keeping my chin up and motivated to help is my main goal. I’m not sure I am seen as that much of a help (as far as my Dad is concerned). But I am trying my best. I thank God everyday for the blessings in my life. Including my Dad’s progress. Reminding myself daily of these blessings helps.

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