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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 15 posts - 1 through 15 (of 18 total)
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  • #8477

    Hello all :

    First I would like to say I am very grateful this site and forum exists. One of the best pieces of advice I read on this site was not to overwhelm myself with information so I have kept my bc research limited to this site, links provided on this site and a few other credible sources. With no prior knowledge of bladder cancer I needed the ‘right’ information.

    I am finally at the point I can sit and type this and not have tears in my eyes.

    I am 46 yrs old female, non smoker with a healthy lifestyle. I woke one morning in early Jan with intense pressure to urinate and passing only little amts of urine/blood which then became significant clots later the same day. (Prior to this I had bloody urine approx once monthly for the past 4-5 months (no other symptoms) which I attributed to vigorous exercise. Bad conclusion I now know.)
    I saw my GP the next day. She ordered a urinalysis and ultrasound. The urine sample came back positive for bacteria. I was started on an antibiotic. Jan 18-ultrasound, Jan 19-GP advised mass was found. Referral was sent to urologist. Within a few days I had a cystoscopy and TURBT surgery followed on Jan 27.

    Pathology result : Ta, Low grade, base of papillary tumour 2cm.
    Next cystoscopy scheduled for the end of April.

    At times during this ordeal I have felt so overwhelmed-shock, sadness, anger etc. which all sounds very normal from what I read from other posts here. I realize that so many others are in a much more complicated situation than I am (facing chemotherapy, immunotherapy, bladder removal etc.)

    I still find myself reaching out to BCC because I feel like I am in limbo-just waiting for the next cystoscopy. I keep myself busy and I exercise daily for those feel good endorphins which are crucial to my mental wellness but I can’t help count down to the days to the next cystoscopy as I know the reoccurrence rate is high. Since I don’t have any of the known risk factors I feel there is nothing I can do to help prevent reoccurrence (though green tea and broccoli are regular staples in my diet!). I am grateful my pathology report came NMIBC, low grade. I understand if there is a reoccurrence it will most likely be the same-I hope I am correct in stating this. (Unfortunately when I began my bc research I encountered one story of low grade became high grade on the 2nd cystoscopy for a 40-something female and I knew then I need better research options so I stopped scaring myself).

    Again, thank you to everyone who has contributed on this site and to Jack Moon and David Guttman for starting this invaluable resource. I didn’t know where to turn and I am glad I discovered this site.

    Best wishes to all who are dealing with their bladder cancer diagnosis.

    Jack Moon

    Hi Lynn

    Sorry you have been diagnosed with bladder cancer. For someone that has been diagnosed with bladder cancer you have the best outcome being TA low grade. Very seldom does TA low grade advance to high grade but it can occur. This is the reason along with the high recurrence rate, you will continue to have your bladder checked. You are reacting to the discovery of this disease like most of us have, the unknown being our biggest worry. The only advice that I can give is to live life to the fullest with a positive attitude, one day at a time. I personally have been fortunate to be cancer free 10 years, after a few small recurrences in 2006 and 2007. I still have a cysto once per year. I have made a few changes to my diet by reducing red meat which I have replaced with fish, and increased vegetables, not sure if it helps but I do know it can’t hurt. I also started Vit D supplements in 2007 and continue to take today.
    Do not hesitate to ask any questions you may have or if you wish to speak to a female with similar diagnosis that can be arranged by just calling the toll free number at the top of the page.
    I wish you all the best in April,


    Hi Jack,
    Thank you very much for your response and suggestions. That is excellent advice re: living one day at a time and each day to the fullest. I have responded to this diagnosis by taking more time for myself and my family which is a good thing! I really try to keep my worry on the back burner.

    I do have some questions I would like to ask yourself and/or others on the forum :
    Is it more or less common to receive a single instillation of a chemotherapy drug at the time of the 1st TURBT ? Or has your Dr advised the risks outweigh the benefits? Is it less significant with a ta low grade diagnosis ?

    Thank you.

    Jack Moon

    Hi Lynn

    In my case I had 1 instillation of Mitomycin C after my 3rd Turbt. My Uro would have done it after 2nd Turbt but his assistant booked my Turbt at a hospital that does not handle chemo. My Uro was not to happy about it. Usually the instillation of chemo does not occur unless their is a recurrence, whether high or low grade no difference.
    Great question Lynn,
    All the best,


    Hi Lynn:

    Welcome to Bladder Cancer Canada but sorry that you have need of us. Like you, I freaked out at my diagnosis even though I wasn’t living the healthiest of lifestyles at the time.

    My freak out was because I’d lost so many people to various forms of cancer and thought this disease was now out to get me. Weird thought I know, but as you have discovered the mind will do strange things under duress.

    I can’t add much to what has already been said other than your reaction is normal and yes, the advice of keeping busy is good.

    I will have my annual cystoscopy check next week. I have been clear for almost 8 years and still get the heebie-jeebies before a checkup. I think this is just the way it is. I’m keeping busy with lots of activities this week so I don’t overthink things too much. I’m 99.99% sure I’m clear but I absolutely hate the invasive nature of this exam so I really need to get my mind in gear and remember that this is my main weapon in my arsenal against bladder cancer.

    A diagnosis of low grade as you’ve learned is the best you can get with this disease but you have to stay on top of it with regular cysto checks. If you do have a recurrence, it most likely will mean a repeat TURBT. Should the recurrences become a concern your urologist will possibly discuss some follow up treatment options.

    I had an instillation of Mitomycin C after my first TURBT because I had multiple tumours. I’ve been fortunate and only had one recurrence that was a single small tumour and didn’t need another Mitomycin C treatment. I did do BCG immunotherapy after my TURBTs because even though the bladder cancer was very superficial, it was high grade and at a greater risk for progression if it recurred. As Jack mentioned, low grade doesn’t usually progress to high grade but your urologist will be watching you closely and with regular check ups you will catch anything early and it will be dealt with.

    Like some others here, I’ve revamped my diet to include more fruits and veggies. I try to stay off processed foods as much as possible. I drink tea, green, black, herbal, lots of water and take a variety of supplements for various reasons. I did start on Vitamin D because when I was doing BCG treatments it was suggested to me by the clinic and Jack has mentioned studies that support this – Vitamin D helps with the success of BCG treatments. I also learned that a lot of people with cancer and other chronic diseases are often deficient in Vitamin D.

    I also try to exercise a lot. I walk (when not too cold or slippery), ride an indoor stationary bike, do yoga and swim when I can. It has strengthened my body and that in turn strengthened my mind. I believe by doing as much as I can to improve my mind and body, gives me the best chance in combating this disease.

    Anyhow, all the best and please stay in touch. (((((HUGS)))))


    Hello Mary-Sue,

    Thank you for your reply and sharing your history – I really appreciate it. I hope you don’t mind me asking but how old were you when you were initially diagnosed ? It is very encouraging hearing stories like from yourself and Jack having years go by with no reoccurrences. I have a question – You mentioned if a reoccurrence occurs a repeat TURBT is done. I have been trying to gather information about in office fulguration. Is this commonly done if reoccurrences are very small in size ? Dependent on the urologist ?
    You sound very physically active which is awesome ! I also practice yoga for the mental and physical benefits. In fact when I experienced some terrible pain following the TURBT I did all I could to remember to control my breathing.

    I wish you well in your check-up next week. I don’t know you but I’ll still have you in my thoughts and prayers.


    Hello Jack,

    Thank you for the information on instillation of chemo. That helps to clarify it for me.


    Hi Lynn:

    To answer your questions:

    I was 50 when first diagnosed. It was weird when going for checkups or BCG treatments because I was very often the only female in a room of much older men. My current urologist treats as many women as men so now when I go for a cysto the waiting area usually has a fairly equal number of men and women.

    As for repeat TURBTs I’m not sure about in office fulgeration. Jack can correct me here if I’m wrong but I believe that it does vary from location to location and between doctors. Here in Calgary it seems that a cysto is just that. If anything is discovered at the exam, you come back for a full TURBT that is done in the OR. Back in 2008 when I went for my first cysto we saw several tumours at the exam and my uro told me that I would have to come back for surgery. When I had a single tumour recurrence in 2010 it was the same process. Some doctors seem to stage and grade at certain times and will do office procedures in between.

    I have heard that it may be better to have a proper TURBT in a surgical OR rather than a quickie in a uro’s office due to the sample being taken. It is important to know the stage and grade of tumours each time so that you know whether your situation is getting worse or not. However, that being said, I’m NOT a medical professional and can’t offer an official judgement or opinion, so if a uro says it is okay to do the process his office, I would suggest asking about the type of sample he is taking and to make sure that it will be staged and graded. If he says that that wouldn’t be necessary, I’d be asking why. One would also need to ask about what type of pain prevention measures/bleeding prevention measures he would use in an office procedure if they should be necessary.

    I have heard that some people manage this procedure just fine and actually prefer it to being admitted in a hospital and undergoing a full surgery. I was given the choice of a spinal or general for my TURBTs but opted for the general since I handle anesthetic okay and I’m a complete wuss when it comes to surgery especially in that region of the body. And since I’m such a wuss, I’d never agree to an in office procedure but that is just me. Thank you for your kind wishes.


    Hello lynnw

    I am also in Ottawa. I am being treated at The Ottawa General Hospital.

    I am sorry to hear that you have been diagnosed with Bladder Cancer.
    However, as mentioned, a single, under 3cm,Ta Low Grade papillary tumor is the best possible diagnosis !
    Cases such as yours are normally considered Low Risk.

    I think I may know how you feel. Hearing and knowing you are a patient of the dreaded 6 letter disease. The anxiety about the results of the next cystoscopy. Hoping that you can put this behind you but recognizing that there is a possibility of recurrence.

    You mention that you enjoy Yoga. I think there is a Buddhist saying: Worrying about the past leads to Depression. Worrying about the Future leads to Anxiety. Living the Present leads to Happiness.

    I was diagnosed with a single large (3cm x 4.5cm) TaLG papillary tumor in August 2015. As such, my risk level is Intermediate. I am being treated with BCG immunotherapy. I too, had none of the environmental or lifestyle risk factors. In fact my family doctor was “stunned” (as he leafed through my file) to say to me, “But you have none of the risk factors!”. My Urologist turned to me and asked, “You appear very knowledgeable, why did you get the cancer?”. My answer was. “White, Male, over 50 years old, and history of colorectal cancer in the family” (i.e. genes).

    There has been quite a lot of good advice already given but I want to help put your emotions at ease with ONE very good reference:,english/

    The first section “Non-muscle-invasive bladder cancer, stage Ta, grade 1″ is a worthwhile read in our case. (N.B. grade 1 or G1 = LG or Low Grade). You will note how good a diagnosis you have ! No one really knows if any one of us will have a recurrence. All that can be offered is probabilities. In your case, it appears to be very low.

    One more thing from the reference. You wrote,”Since I don’t have any of the known risk factors I feel there is nothing I can do to help prevent reoccurrence”. In the reference look at the “Guidelines” section, 5th bullet from the bottom: “Vitamin E, A, and Lactobacillus Casei are probably effective in the prevention of the disease.”
    Dr. Donald Lamm a recognized expert in the treatment of Bladder Cancer has supported the use of Vitamins E, A, and Lactobacillus Casei. He also recognized that Vitamin D (which helps to prevent prostate cancer) has had some data to support its use for patients undergoing BCG treatment. He has supported “Oncovite” multivitamins for BC patients. Unfortunately Oncovite is not available in Canada.

    So, daily before bedtime, I take 1 caplet/pill of each of: Vitamin E, 400 UI; Vitamin A 10,000 UI; Vitamin D, 1,000 UI and Lactobacillus Casei contained in Loblaws multi-tabs.

    You are in a very good place as far as BC is concerned. Live each day. Don’t fret about the future.
    Like everyone else on this forum you are welcome to PM me.

    God Bless



    Hi Lynn,

    I’m 43 years old now and was originally diagnosed with a Ta Low Grade 2.7cm tumor just three weeks before my 40th birthday. Like you I took care of myself, exercised (still do) regularly and lived what is considered a healthy lifestyle. I’ve been cancer free for over 3 1/2 years after my TURBT and single chemo dose.

    It was on my mind all the time and was quite worry some. The fine folk at BCC helped answer my questions and gave me a better point of view. I have moved to yearly check ups after the initial 3 month to 6 month follow ups.

    To date, its been going very well.


    Rick B

    Hi Lynn,

    Glad you reached out to BCC. Like you I was overwhelmed with the diagnoses and the folks on this site really helped me through a bad patch. I have little to add to the advice already provided other than to say that I turned the corner when I became a believer that BC is treatable. I’ve accepted the fact that it can recur as it did with me x2 within the first 12 months. I’ve been BC free for nearly 4 years now and on 6 month follow-up which suites me find…rather catch it early!

    Wishing you the very best with your follow-up in April and thereafter.

    God Bless.



    I also take a number of vitamins and supplements. I started taking vitamin D when doing BCG because like others here, I learned that it can help with the success of BCG treatments. I still take 1,000 IU in summer and 2,000 IU in winter since I live in Calgary and don’t get out too much in the winter months.

    I also take a multivitamin specific for women 50+, probiotic to help my wonky digestive tract, Vitamin C, cranberry for the bladder, bilberry and Omega 3 for my eyes. My optometrist recommended the Omega 3. I chose to take bilberry in the hopes it will help prevent the progression of cataracts, aid in night vision and help prevent glaucoma which I’m at an elevated risk for.

    I also got into vitamins and supplements because I felt due to my weakened condition while doing BCG treatment I was probably not absorbing everything I needed. Dieticians will argue that we should get everything that we need from our diet and shouldn’t rely on vitamins and supplements. In my opinion a lot of people may be able to do that but as mentioned those of us that have compromised health may need the extra boost. Then there is also the argument about how our food is depleted in nutrients due to poor soil, environmental factors etc. Now I continue to take my vitamins and supplements as a way of maintaining my health.

    No matter what one chooses to do in this area, the one thing I strongly recommend before embarking on any type of natural therapy, vitamins or supplements is do your research and seek the advice of qualified people to make sure that you make the choices that are right for you. One needs to take precautions this way if you are taking prescription meds or are undergoing any type of treatment/therapy to make sure that nothing will conflict. ((((HUGS)))))


    Thank you to everyone for your replies.

    Mary Sue- thank for sharing the additional information about yourself and your second post about the vitamin supplements. I agree with you about always determining stage and grade for any mass removed. I ask about in office procedures only because the TURBT was the first surgery I had in 20 years and it was an awful experience. I had a bladder perforation, excruciating pain when urinating and I was still battling nausea nine hours following the surgery. At the same time there are aspects of having an in office procedure done that concern me too. I completely understand that you are providing information and that I really need to do what is right for myself and consult with the professionals.

    Deep – I appreciate the reminder of the Buddha saying. I will try and keep this simple saying in the forefront of my mind when I find my thoughts are going off track. Thank you for sharing your story and for sharing the links to the additional information. What I should have written was – I feel there is nothing for me to stop doing as far as risk factors are concerned but as you pointed out there are plenty of things I can start doing. Thank you for sharing your vitamin routine. I am also being treated at the OGH and I feel very fortunate I am in good hands there.

    Ed- What I find amazing is people like yourself who have been cancer free for several years or more still come to this site and offer support so thank you for sharing your story. You were so young at the time of your diagnosis. That is wonderful you have been cancer free since. I wish you continued health !

    Rick B- Even though you felt you had little to add to the other advice thank you for offering your support. As you mentioned it has been very overwhelming, especially to receive a diagnosis for something you know nothing about. I agree with you that the fact bc is treatable makes it easier you deal with. It is very encouraging to hear stories like yours of many years of being cancer free since the initial diagnosis. Thank you for taking the time to share.

    I appreciate the support from everyone – thank you again !


    Hi Lynn –

    I stumbled upon your post while browsing through for posts related to treatment in Ottawa. I just moved here from Thunder Bay so I was looking to see where people were going for treatment in this neck of the woods. I am 24 and female, so I can relate to your initial sentiments of feeling a bit out of place as a younger female in a urologist’s office.

    I had a tumour found incidentally a little over a year ago. I had a TURBT very shortly after with a not so great recovery. Fortunately, and very surprisingly, the tumour I had was benign. Even still, I am on “bladder watch” for the foreseeable future. I am heading for my fourth cystoscopy of the year and 1 year “anniversary” follow-up later this afternoon. Since moving, I am now under the care of the folks at the Ottawa Civic Hospital.

    I just wanted to send a friendly shout out to someone else in the Ottawa community, and I hope you are doing well these days.



    Reply to Newbie-

    So glad you reached out and welcome to the Ottawa area! I am sorry to hear of your diagnosis. I hope all went well for you yesterday with your fourth cystoscopy. Even though the procedure itself becomes more familiar it is still a time of anxiety. I also hope you feel you are getting excellent care at the Ottawa Civic Hospital.

    I am doing very well these days-thank you! Since my original post I have had two follow up cystoscopies that have been 3 months apart with negative results and my next one is in February 2018, at a 6 month interval since my last. On some days it seems so surreal and I am baffled at this diagnosis being ‘younger’ and female.

    Again, thank you for reaching out and please feel free to do so again. As many people have said to me, ‘You are not alone’.

    All my best!

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