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Homepage – Forum Forums Non-Muscle Invasive Bladder Cancer This is John – Diagnosed late June 2015.

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    Hello everyone,

    I was diagnosed in late June and got in for surgery right away. I had a TA tumor about 1cm in size, which was completely removed. Starting the 6 week treatment protocol on Sept. 22nd. I just hate these cystocopies. The thought of it makes me sick. I could not sit still during the one where they found the cancer. I plan to try taking a clonazopam 1mg before the next to see if that helps. From my reading it seems that they used to put people out for these, and maybe they still do that in the US. I don’t know but it horrifies me…

    Treatment Protocol:

    BCG starting Sept.22 weekly for 6 weeks
    BCG & Cysto every 3 months for 2 years
    BCG & Cysto every 6 months for 2 years
    Bcg & Cysto every year for 6 years

    Jack Moon

    Hi John

    Welcome to the group. I have never had any problems with the Cystos, just the thinking about what the Uro might find bothered me for a few days prior.
    I was diagnosed in 2005, 2 small recurrences, had several BCG treatments, and been cancer free since 2007. I am fortunate to just have once a year cystos now. Good luck with your BCG treatments.
    Keep us posted,
    All the best,


    Hello John

    I am on a similar timeframe as you.

    I was diagnosed 3 July. I had a 4.5 X 3cm Tumor removed by TURBT July 22nd.
    Pathology showed it was mostly Ta Low Grade.
    I was re-TUR on 25 August.
    I start my BCG treatment tomorrow, 9 September.
    I have asked on “Discussions with other patients and caregivers” how to deal with BCG treatment … the information would be helpful.

    I have been having regular colonoscopies since before I was 50. I did/do those fully awake as I watch the TV screen. So, the cystoscopy felt no different – only “up a different orifice”.

    As far as the procedure is concerned – I understand that they bother you. Do whatever you have to, to RELAX. It goes so much easier – both for you and the doctor. If you “tighten up” it may hurt and then it is more of a “pain”. It becomes negatively re-inforcing. Making it easy on yourself by relaxing will make it, well, … easy on yourself. It will bother you less. I find taking some deep breaths and focussing on my body to “relax and let-go” really helps – like when you take a warm bath.

    Outside of that, 2 things still trouble me – post cystos:
    1) The anxiety and worry about the result and
    2) Getting a UTI.

    Finally, just curious, by everything I have read, a 1cm Ta tumor is probably the lowest risk Bladder Cancer anyone could have (provided it is Low Grade and there is no concurrent Tcis). The recommended treatments I have read normally do not even recommend a complete SWOG (Dr. Lamm) BCG protocol for such a case. For example (and I respect that every individual case is different) a former close co-worker of mine (I stay in touch and we share the same Urologist) had a 2cm x 2cm TaLG removed – was given a single installation of Mitomycin post-op to kill off any loose micro-cancer. No BCG. He has had the normal cysto follow-ups. He is now on a yearly check-up. He has been Bladder Cancer free since Tumor removal (over 6 years). Bottom line, it may be that your medical team is taking very good care of you.




    Thanks for the helpful comments. Thinking about my first blood test as a teen I almost passed out. Then I taught myself to relax and ever since they don’t bother me a bit. Yes some good self control and I should be fine.

    Jack, very happy to hear you are cancer free after the recurrences. That is of course the biggest fear.

    DDep: Unfortunately my tumor was high grade, which is why advanced protocol. I did get a second opinion from another Urologist who also thought the protocol was more then the norm given size and stage of it and there was no Tcis.

    Again thanks for comments. I do feel bit stronger now.

    BTW What is UTI?

    Jack Moon

    UTI is an Urinary Track Infection. In many cases the infection is in the bladder.
    All the best,


    Dear John

    I totally understand how you feel when going to the doctor. I don’t like hospitals. I admit medical staff, but don’t like visiting them. I can’t watch anyone get a needle, especially myself. I always look the other way when I get blood taken.

    I have had my share of cystos – a few years of them every 3 months, then 2 years of twice per year, the last 2 years of annual checks. I get to look forward to annual checkups for at least the next 5 years.

    I am over five years cancer-free and still don’t like the cystos. I try to keep my mind off them but the day of the appointment my stomach is unsettled.

    However, the best way to catch bladder cancer early is thru a cysto (for now anyway). So I “just do it!”

    Try to keep the big goal in mind – staying healthy. Take the drugs or whatever helps you but don’t skip an appointment.


    Hello JDR

    Have you ever looked at the cystos as the start of your attack on the cancer? No hanging in limbo as one does before the cysto. That is the way I look at it and now I very much look forward to the next cysto. Haven’t had a clear one yet so the news has never been good but at least I know that those little buggers will be removed and their growth stopped – for that round and this gives me the upper hand and a fighting chance. At least for that round.

    Relax is also very important. The little bit of pain that you might experience is worth it to know the results of the cysto. At least in my opinion!

    I comment I read awhile ago: why spend so much time and energy stressing; it won’t change the results. So cut yourself some slack and go do something you enjoy and spend time with those you love. This is what will make a difference on how you handle your process.

    Also check out “important reading” under the “facing bladder cancer” tab at the top of this website. Good info to help you understand where you are at with your Rollercoaster of Emotions.

    Mitomycin use: one of my urologists told me that this is only used on first surgery and if there is only one tumor that is small. If the tumor is too large or there are multiple tumors there is a risk of the mitomycin being absorbed through the bladder wall and into the body. Very serious side effects from this. The urologist also told me that mitomycin is not effective for recurrences. With my first surgery the plan was to do mitomycin but the tumor stalk was too big and there were also multiple superficial tumors that showed up between cysto and surgery (total of 11 days between these two).

    Again, JDR – RELAX. Breathe deep, think of other things, mentally be somewhere else, whatever it takes to relax. Also look at the cysto as being the next chapter on your journey and one where you are starting in the offensive position not defensive position.

    Take care


    Hi John:

    I can relate to the cysto procedure. I nearly passed out with fear at my first one. I had “stuff done down there” as a result of uro-congenital birth defects that required surgeries, tests, catheters, scopes and only God knows what as a young child. I had suppressed these memories and when I needed that first cysto they resurfaced as a form of PTSD.

    I was diagnosed with non-muscle invasive high grade bladder cancer in 2008 and again in 2010, the latter being only a single tumour. I’ve done 21 BCGs and 15 cystos over a three year period and am now down to annual cystos. I’ve remained clear since 2010.

    Trying to relax was a major challenge for me until I was able to banish those memories. My son’s former tutor who has a bit of psychology training coaxed me through it by saying “It is just a bad memory. Let it resurface, honour it and let it go.” Once I got my head around that it got better. I still get the heebie jeebies a day or two before the procedure but know that is normal as even though I’m 99.9999% sure I’m clear, it’s just the nature of the beast, that and my past haunting me. Now that I know that, I can talk myself around.

    I also switched doctors since my first uro insists on using a rigid scope on females which is much more painful than the new flexi scopes. My new doc uses the flexi scope on everyone and was great at talking me through it getting me to deep breathe several times before inserting the scope. If pain is an issue, I suggest talking to the nurse about extra freezing gel and get her to put it in really slow giving it a chance to trickle down and do its work. I found that some nurses inject it quickly and it hits an air pocket and it just backs out. That means you don’t get frozen very well. I can always tell when I’m frozen because I feel like something is lodged in the urethra. It is a strange sensation but when I feel that I know I’m good to go.

    I now remind the nurse of this and when its done right I find that I’m frozen rock solid and other than an uncomfortable bit of pressure from the saline water in the bladder, it is now doable. I deep breathe throughout the exam and watch the screen to distract myself from the discomfort. I’m lucky that my new doc gives me a running commentary on what we’re viewing on the screen. He does this since he knows that I’m interested in what I’m seeing.

    I used to take a heavy dose of painkiller with a muscle relaxant prior to the exam but don’t need it now which means I can drive myself to and from my exams. Before I needed my hubby to do it as I was too loopy from the pain killer to drive safely.

    For afterwards, I find driving home with my heated car seat on full blast wonderful for getting rid of the after pain. I also jump into a hot bath with Epsom salts first thing when I get home. Before we had our current car I brought a hot water bottle.

    To help avoid a UTI, I drink tons of water, cranberry juice and peppermint tea afterwards. By keeping your urine diluted, it helps lessen the discomfort afterwards as well.

    This procedure is unfortunately a necessary evil when dealing with bladder cancer since there really isn’t any other way to detect it yet. Researchers are working on a urine test as a method of screening for it but it isn’t a sure thing yet. I for one will be glad when they get this available so it will eliminate the need for cystos in some cases but in the meantime………we literally have to grin and bear it or face the consequences. BC has a very high reoccurrence rate and can literally come back to haunt you when you least expect it. Hang in there…we know it’s a tough thing to have to do. (((((HUGS)))))


    Hello John

    I am really surprised by reading the postings that people have that much dislike and discomfort with cystos. I guess I could have also but I made the choice to look at a cysto as a good thing. After BCG and prior to the cysto, there is no progression on battling the cancer. The cysto gets things moving again, should there be any further cancer. Being every one of my cystos has shown cancer, I definitely am experienced on this one. Once you know the cancer is there, then you can move forward again on getting rid of it. Should the cysto be clear, that is phenomenally good news that one should not begrudge the cysto process for. As the saying goes: no pain, no gain. Just applied a little differently here.

    Yes, I am rambling.

    In the end, I refuse to get stressed or be stuck in the negative world about the cysto. I want to know the results so action can be taken. As a result, I am always in a good mood and, I hate to say it, but am excited the day of the cysto. With no stress, there is no pain during or after. I breeze right through the cysto. Afterwards, I usually go shopping since I don’t get into Saskatoon very often.

    Can’t emphasize enough: RELAX. Specifically, don’t tense your muscles during the procedure otherwise you will have pain.

    Here is to pain free cystos and clear cystos.

    Take care


    Hi Cheryl:

    I think that it is great that you can get through cystos so easily but it isn’t so easy if you’ve had bad experiences in that region of the body. You are correct in that yes, it is the way to start “the attack against bladder cancer” and it is a good idea to see it that way.

    However, when you’ve had medical trauma before, it takes awhile to get past it. Yes, I needed to learn to put on my big girl pants and grow up but due to all the medical trauma I endured as a child, the physical, emotional and psychological abuse by medical staff over the years, that journey has been difficult. I was also continually lied to – being told something wouldn’t hurt when it did or told something totally different than the medical experience I was going to have. I also was slapped by nurses when I cried getting a needle or balked at taking medication or was threatened with having my favourite doll taken away. This was in a hospital where I had to have two surgeries to correct uro-genital birth defects.This broke my trust with doctors and nurses so as an adult, I’ve had difficulty actually getting myself in gear for many standard checkup things. Now I do know my rights as a patient and have no fear about standing up for myself so it is getting easier but it takes time. I really need to develop a relationship with a medical professional first before I can get comfortable with whatever it is that I must go through. I’m also grateful for the caring family physician that I’ve had for the last 30+ years. We do butt heads usually as a result of me still dealing with said trauma memories but I do eventually come around.

    Thankfully my new uro that took over my care in 2012 really understood my dilemma and because of the time he took with me, I now can get through a cysto much easier. If I hadn’t been able to get a new uro at that time I would have done the stupid thing and quit seeing a uro altogether. My first uro put me through a rigid cysto exam with no freezing. I had been administered the anesetic but due to an unexpected delay with the previous patient it wore off and I didn’t realize it and neither the doc or the nurse had thought of it either so when he proceeded with the exam and inserted the scope it felt like a hot poker going up inside me. Needless to say, the shock of the pain made me tense up and of course it hurt more. I started screaming and he wouldn’t stop the exam even though I begged him to remove the scope. After the exam, he left the room without talking, no apology, or checking to see if I was okay. I did lay a complaint with administration – got my apology and a referral to a new uro that I get along with much better.

    There were benefits to this experience though. Firstly, it somehow got rid of those bad childhood memories/flashbacks and also resulted in a review of how the anesetic is administered for the procedure at the hospital. So hopefully that has benefited others. I also realize that the pain, as bad as it was, didn’t kill me and even though I won’t ever consent to a rigid scope again without being put under, I can do more than ever now when it comes to invasive procedures. I think it has also made flexi exams mandatory. I was told that the choice of scope was left up to the uro. My new uro uses the flex on everyone as he knows that it is tolerated much easier. We have new equipment at the hospital where I go and the new scopes are even smaller and I notice that the insertion goes much better.

    Even though I still as mentioned get the heebies a day or so before the exam, I do make it a special day for me. Before going to the hospital, I shower, put on a favourite sweat suit so I’m in clean, comfortable clothes and also treat myself to something like a special food treat, a new paperback or some other small item. I do this to celebrate another step in the journey. When I get home, I hop into a hot tub with Epsom salts, accompanied with a couple of bottles of water, a candle and a favourite book. If needed, I take a couple of Tylenol and go have a nap. Most of the time just using heat and resting for a bit is enough.

    I do know of another person who like you doesn’t have much issue with cystos either and has done the shopping thing afterwards but again hasn’t had to deal with the trauma I’ve had. I salute you guys and envy you in a way but I do believe that past experience makes all the difference.



    Off the top, I want to say that I find your posts and advice very helpful and welcomed. I am grateful that you are on this forum.
    I particularly took stock of your UTI advice as this is a concern of mine.

    That is why I am saddened to hear what you went through. Negative experiences are negatively re-enforcing.

    Stoically, I am sure we look at those procedures as life saving. That is what I say to myself for all medical procedures … they are a GOOD thing. On the other hand, we are humans with emotions – and for everything we do or have done, that is an aspect that should to be taken into account. I could never be a medical professional – it would break me.

    I know I said earlier RELAX – but those can be just words. Before the cystoscopy, catheter, colonoscopy, blood test needle, IV etc. I take some deep breaths and try to transport my emotions to place where I am content and relaxed (I may have to also close my eyes) – for me it is the feeling I have when soaking in a warm bath – just letting go. (There is another occasion when I feel very relaxed but I think I will keep that between my wife and I).

    Anyway Marysue, I enjoy your posts and I am very grateful that you are on this site.




    Hi DDep!!

    You’re welcome.

    I must also add that my son’s former tutor did help me reframe a lot of those negative childhood experiences. After spending some time with her, I came to understand that for the most part those people were doing their best to save my life outside of those that slapped or threatened me. Thankfully, children don’t go through that today. Staff would be fired.

    When three out of four sons each had to have hernia repair surgeries – I later found out this is a hereditary thing on my side of the family, I related some of my experiences to staff at that time and told them under no circumstances would I tolerate that kind of treatment with my child as I would press assault charges. That was when I realized how much things had changed. A nurse took me aside and gently explained how things would be handled assuring me that they deal with a child’s fears very easily understanding that kid’s are naturally afraid of strangers and the unknown and don’t expect a child like in my past experience to understand and cooperate like an adult because they aren’t able to. I stopped just short of hugging that nurse. The last thing I wanted was to impart my fears onto my kids. Things weren’t perfect but for the most part handled well and that combined with the tutor is what helped me regain confidence in the medical system.

    I’ve heard others in the hospital talk fearfully too. When I was in Day medicine in 2011 for one of my BCG treatments I overheard a nurse explaining the CT/MRI exam process to an elderly lady in the next bed. The lady replied “I will be good for you, don’t worry”. I could hear the fear in her voice and realized she’d probably had some rough treatment in the past as well but the nurse quelled that by replying in a calm voice that she’d be well looked after and there was nothing to be afraid of. It was nice to hear that reassurance.

    As a last note, I co-facilitate the bladder cancer support group here in Calgary and we’ve had some horrific stories of how people were mistreated during their BC journey, so while things have improved dramatically it still isn’t perfect. To me, that is part of the awareness journey – letting people know what is acceptable and what is not and being a voice to getting something done about it.


    Hello Marysue

    Hats off to you. You are a very courageous and strong woman.

    I know all about those big girl pants. Have lost mine a few times.

    On the subject of UTI: need to remember that BC can present with the same symptoms as UTI including burning, urgency, feeling of constant fullness. There are BC patients that don’t know this. Just mentioning this because I am currently dealing with this right now. My urologist is wonderful and really pays attention to when I get these signs and those specific cramps I get when there are tumors. As a result, I go for scope next week and am looking forward to this. Will no longer be left in limbo wondering. That is what I love about cystos: an answer and a plan for moving forward.

    Take care


    Too true, Cheryl about BC mimicking a UTI. It has been realized that people are often delayed being referred to a uro because they get treated for the UTI with antibiotics first. I was lucky that my family doctor thought to check for cancer first and then deal with lesser causes if cancer was ruled out. This is part of Bladder Cancer Canada’s awareness platform. You are fortunate in a way that your body sends specific signals when it is possible that you are dealing with tumours. I had no idea until they bled out. And yeah, until further research develops something better and less invasive the cysto exam will be the way to go.


    Hi, John
    I was diagnosed with T2 in June and had the good fortune of being introduced to a cystoscopy back then. Once I heard that some freezing gel was going to be applied, I felt a little less anxious! Relaxing and following instructions as the scope passed the sphincter were helpful in making the procedure tolerable. Wished I would not have seen what I did, though on the overhead monitor… educational as it was.

    Kingston and the 1000 Islands

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