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IMPORTANT: The Bladder Cancer Canada discussion forum is not a substitute for professional medical advice or treatment. The opinions & contents in this forum is for information only and is not reviewed by medical professionals. They are experiences & opinions of patient members like you, and is NOT intended to represent the best or only approach to a situation. Always consult your physician and do not rely solely on the information in this site when making decisions about your health.

Viewing 13 posts - 1 through 13 (of 13 total)
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  • #8737
    RobinVH
    Participant

    Hi all,

    Had a cystocopy last night and two small tumours were found. Urologist said they were about 3mm in size and that he would “scrape them off”.
    I feel like I’m in a daze and terrified at the same time. My surgery is set for April 6.

    #21446
    Paul D
    Participant

    Hi Robin and hope all goes well with the surgery, I had my tumor removed this time last year and all things considered the journey hasn’t been to bad. I believe you have made the right choice in joining us here on BCC forum as we have all been there and can offer real advise and make sure you ask loads of questions at the hospital writing answers down. Don’t be to terrified as with help from family and friends you will get through it.
    Love & Best Wishes
    PaulD

    #21447
    RCS
    Participant

    Welcome Robin do the BCC discussion forum. After you find out your have tumors in your bladder….. shock, fear and despair set in quickly. The fear of the unknown can paralyze you. When I first found out it took a couple of months before the fear started to subside. But it does get better for sure. Your feelings are absolutely normal. Take one day at a time and once your get your TURBT and learn more about your DX and treatment plan things do become clearer….at least it did for me. This disease is highly treatable if caught early. Outcomes are good. We are here to support you all the way. Please keep us abreast of the results of your surgery and next steps….. hang in there!

    #21448
    Jack Moon
    Keymaster

    Hi Robin

    All of us have been where you are. Stay positive as RCS has said, caught early bladder cancer is very treatable. I was diagnosed in 2005 and have been cancer free since 2007. We are here to share our experiences with you so do not hold back any questions you may have.
    All the best,
    Jack

    #21449
    RobinVH
    Participant

    Thanks everyone. It’s comforting to hear other people’s stories of their fight with BC. I slept a little better last night after having the night from hell the previous one. I wake every two to three hours to void and find it hard to get back to sleep because my mind goes back to thinking about my condition.
    I have to somehow try and put up a brave front because I’m a single parent of a nine year old and i don’t want to alarm her. Last august I had a Green Light PVP that went sideways, was supposed to be a day procedure but ended up in the hospital for six days after sepsis developed. Almost didn’t make it and that’s adding to my anxiety as well.
    Thanks again, will keep in touch.

    #21451
    DDep
    Participant

    Hello RobinVH

    I am sorry to hear that you have been diagnosed with Bladder Cancer.
    It is fortunate that you have reached out and joined this forum. Many of us have found this site very helpful.

    It was over one year ago that I found myself in a very similar situation that you are right now. I also found it difficult to sleep at night during those “dark times”. The mind races … the heart beats.

    Like many of us who were just told the news, we feel stress, worry, fear of the unknown, sadness, confusion … all these things.
    Tthe most difficult period to endure was the time between being first told, up to the time a treatment plan was decided and implemented. Not knowing what I definitely had, or what lay before me, really wore me down. It is a time-period, unfortunately, all of us had to go through. You are not alone or unique in this.

    The other thing to keep in mind is: You really will not know the type of Bladder Cancer you have until you obtain your Pathology report(s). Visually, my Urologist thought my cancer was much more extensive than it was. It was the Pathology reports that reassured him on the nature of my cancer. 3mm tumors does sound to be rather small and not much of a risk – but that should be left to the pathology report and your medical team.

    It is a difficult time …

    Here are some things I found useful to help me cope during the worst of times:
    1) Unless you have some formal education in Medicine, Micro-biology, Pharmacology, Organic Chemistry etc. : Do not spend a lot of time doing internet searches to understand your situation. It only leads to more questions, more confusion and in turn, more stress.
    2) Talk to family, friends, be open about how you feel – I found just talking about it got it off my chest and was stress relieving.
    3) Do your favourite hobbies and/or work where you can quickly finish something. It takes the mind away from “racing” and gives a gratifying sense of accomplishment.
    4) Take long walks with a loved one … and talk
    5) Watch some good, light-hearted, easy to laugh-at, comedy movies (e.g. As Good As It Gets, Something’s Gotta Give, Its Complicated …etc.)
    6) Don’t hold back the tears if you need to cry
    7) If you continue to find yourself unable to sleep or cope … see your family doctor. As I said, during this difficult time of “not knowing”, I had to take some pills to help me sleep at night
    8) If you smoke – STOP SMOKING !

    Life is worth living and it does get better.

    Praying for all the best.

    DDep

    #21454
    RobinVH
    Participant

    Hi DDep,

    Thank you for replying.
    I have an appointment with my GP today for a pre-op and i was thinking about asking him if i should start on some antidepressants. I’m not sure which way to go.
    I just had a chat with a friend that battled lung cancer 10 years ago. Among the things he said to me was that in his experience, the patients that accepted their condition and remained positive, fared better than the patients that were angry and resented cancer. More food for thought for me.

    Thanks again,

    Robin

    #21455
    PeterL
    Participant

    Hi Robin, sorry to find out that you are part of our “club”. Know that you are not alone.

    I was in your exact situation 4 months ago when my cystoscopy also revealed I had two small tumours. I was in shock and can completely relate to the “daze state” that you are experiencing.

    It took me a couple weeks to wrestle with my emotional roller coaster but it does get better! I am able to laugh again and have found a renewed sense of joy and hope despite the circumstances. I hope you will too.

    Try to stay positive. Treat yourself to things you enjoy. As others have already mentioned, bladder cancer can be beat!

    Peter

    #21458
    RobinVH
    Participant

    Thank you Peter, I’ll take any glimmer of light that i can.

    Went to see my GP for a pre-op yesterday and i asked him if he had news from my cystoscopy. He said “several small tumours consistent with CIS”
    I am very worried now.

    #21462
    marysue
    Participant

    Hi Robin:

    Welcome to Bladder Cancer Canada but sorry that you have need of us. The surgery to remove bladder tumours (TURBT – transurethral resection of bladder tumour) is generally straightforward. Some people do have issues with bleeding and clotting afterwards but they are managed by your doctor or hospital care team. I suggest that you make sure that you get full instructions on what to do for self care at home post op – who to call, where to go – just in case. Ask your doctor ahead of time if you are a day surgery case – meaning that you will go home a few hours after surgery or will be admitted at least overnight. It varies from region to region and different surgeons have different treatment protocols often depending on the patient’s situation.

    Since the surgery leaves open wounds on the bladder wall, the best suggestions I can give you for post op is rest, (hard with a kid, I know first hand – think babysitter, child care trade off), drink a lot of fluids, particularly water. Herb teas like peppermint and chamomile are especially good and bladder friendly. Lay off caffeine for at least a few days, longer if possible as it will irritate the bladder. Frequent short walks, increasing the distance as you are able will help as well. You will have to consult your doctor about when to return to work – that will vary depending on the type of job you have as the general rule post op is no heavy lifting or housework for 4-6 weeks. Ask also about when it would be safe to start driving – if you drive, when it would be safe to have sex if you are in a relationship. All this will help your bladder heal quicker.

    I also suggest doing things like a house cleaning, grocery shopping, putting some precooked meals in the freezer, arranging for some kid care before going in as well.

    The reason I suggest all this is; a) it’s obvious it needs to be done b) I found by doing these “prep” things it gave me a sense of control – I was organized ahead of the game and that took stress off me knowing I had done all I could to lessen the “To Do” list c) It was a form of distraction and filled some of the pre-surgery waiting time.

    If you are super stressed out and can’t cope mentally – yes, short term anti-depressants may help. That would be a discussion to have with your doctor. Seeing a psychologist may help also. Sometimes having a neutral party to talk to and air things and having them make suggestions to help cope gets you through it. Your doctor may be able to help in finding such a person or the hospital where you are going may be a resource as well.

    Another option is to see if there is a cancer clinic somewhere in your area. They may have a psycho-social department that can connect you with a psychologist and/or other resources.

    As others have mentioned, the mental mindset does affect your journey to some degree. I can speak to that firsthand. When I was first diagnosed it was terrifying as I had no one to turn to as this organization wasn’t around yet and I didn’t know anyone with bladder cancer. I mistakenly came to the conclusion that I had a rare disease and was on my own. I tumbled into a deep depression that was complicated by traumatic memories of childhood urological surgeries and all the other people that I had known and loved that had died of different types of cancer. To this day, I credit my son’s former tutor with helping me see things in a more positive light. For the memories that surfaced, she said to honor and respect them and then let them go. They were just memories and I shouldn’t let them have power over me. The second thing was that I had it in my mind that the BCG immunotherapy that I received post op was poisoning me. She again helped me reframe that – visualize the drug sweeping through my bladder and eliminating any remaining cancer. She also suggested when I was worried about the fatigue from the drug to rest and believe that my body was healing. It took a lot of work but her suggestions really helped lift the dark cloud I was under. In my case, I also took up quilting and made Christmas gifts while undergoing treatment. The sewing gave me a sense of control and the belief that I was still useful and had a purpose.

    You will have another wait post surgery (usually 1-2 weeks) to get your pathology results from your urologist. This is a tough part of the journey – we all stress out with the “what ifs” at this point, but again keeping busy is what most of us have found is the way to go. You can tune in here as often as you like.

    Lastly, I suggest planning some treats for yourself to lift your spirits. I used to treat myself to small things like a magazine or favourite food treat after surgery and treatments. I still do that on cystoscopy days. I’m down to an annual checkup. It is a celebration of all that I’ve conquered.

    We’ve all been where you are and understand the worries and confused mindset. I hope that my suggestions help. Please stay in touch and let us know how you are. Best of luck. (((((HUGS))))))

    #21464
    RobinVH
    Participant

    Hi Marysue,

    Thank you so much for all this valuable information from someone who’s been though this.

    Do you think it’s helpful spending so much time on this site? I seem to be drawn to it and want to read everyones experience. I think I need to back off and give myself a break from thinking of BC. It’s the fear of the unknown.

    Wishing you all the best.

    #21468
    marysue
    Participant

    Hi Robin:

    We all vary in how we go through this process. A lot of us want a lot of info in the beginning, some a little at a time. We that are experienced in this journey often suggest sticking to learning about your own situation first to give yourself time to digest the information and come to terms with what is actually happening for you.

    It is tempting to read a whole ton about others but if you read about patient experiences that are more serious than yours it can be a little scary and overwhelming. Your mind may go into the “what ifs” and you certainly don’t need that extra stress. It is much easier when you have some experience. I’m on this site regularly as a member because I’m 9 years into my journey and have been clear for 7.5 years. I well remember in the beginning being so scared that I couldn’t think straight and actually couldn’t for quite a while because I had “brain fog” issues with BCG treatments and wasn’t in the best mindset to read about or comment to others.

    I got through my stuff and as I got over the side effects and got a few all clears and then into a better mindset, I was then able to join in on the forum more. It became a time to learn more about this disease in general and because I have some general knowledge I can now pass information along to others. After I recovered it felt good to be able to give back by offering support on this forum and as a patient support volunteer on the phone. But this is me, not everyone can or should do it.

    So, I guess my answer is yeah, take a break if you are starting to feel overwhelmed. Focus on you and what you need to know and learn to take care of yourself. You will get through this and in time feel more stable and be able to read the posts more objectively. But that being said, save this site as a resource to come back to when you have questions. I’m sure there will be some.

    As mentioned we are all different and will each go through this journey in our own unique way. You are the best judge of that. (((((HUGS)))))

    #21471
    Ruth
    Participant

    Hi Robin
    Please keep us posted on your situation. I know what you mean about fear associated with this diagnosis. Know that everyone here has been in your shoes and worked their way along the path to get it dealt with. I’m a tad ahead of you on my path which started back in November. The scope, and the TURBT were done. Pathology was completed to show low grade in my case. I am so happy to know that we Canadians have amazing health care. Try to stay positive and do whatever it takes to keep focused on the journey ahead.

    You can do this!

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