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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 24 total)
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  • #8687
    DarKoz
    Participant

    I am new here. I have been told two weeks ago that I have a bladder cancer. I had operation on June 10th and I am waiting for results. My doctor wants to see how deep it is. He thinks that is CIS, but wanted to confirm it. I have urinated blood for two days, then it stopped, but today I urinated several bloodcloths like more of the brown color. I go very often to bathroom. I still have pain in the bladder area.The plan of my doctor is, if it is on surface, to start with BCG as soon as possible. I would appreciate very much if someone can share a little bit of their experience in regard with BCG. How painfull is it? Is post period as same as after operation? Any information will be very much appreciated. Thank you.

    #15669
    Greg
    Participant

    Hello DarKoz. Sorry you have bladder cancer, but glad you found this support at Bladder Cancer Canada. Blood coming and going is normal for bladder cancer (BC). Also, after the operation (called a TURBT for trans-urethral resection of bladder tumours) passing clots and scabs and some blood when you urinate is very normal. Urgency and frequency which you are describing is also common. It’s uncomfortable and a nuisance, but it will go away in time. Sometimes if you put a heating pad over your pelvic area or take a warm bath it can be helpful for the discomfort. Keep drinking water to help flush your bladder. It means you’ll have to go to the bathroom more often, but may help with the symptoms.

    The BCG tends to affect different people in different ways. Some find it does not bother them early on but gets a little more bothersome as the third and fourth treatments occur. I found them very manageable. Others do not find them so manageable. But your doc can prescribe meds if you find it too uncomfortable. Do not worry about it overly much. You can do this. And we’ll be here to help and support – and maybe down the road even make you laugh!

    #15673
    KIOWA
    Participant

    Hi DarKov. Sorry about your BC. Sounds like the same experience I had back in 1992. I had lots of cystitis type pain and that’s what I thought it was. One night I peeded 100% blood. Went to the ER, more blood but I met a really beautiful lady doc. The the good news. they set up all kinds of tests and got me set up with a great urological surgeon. In two days i had a TURB. He took out a rather large tumor that fortunately was not growing in toward the muscle. But it was nevertheless cancer. At the time no treatment was deemed necessary but it was watched extremely closely for years until I went once a year. 17 years later during an annual cystoscopy cancer was found again. This time is was CIS. BCG was recommended but BCG made me so sick I preferred having the cancer. I know, but it really was horrible, for me. As Greg said it varies a great deal, many people have few or no problems with it. The CIS came back anyway and this time he used Valstar which unlike BCG is a chemo drug. Very very very painful but not as bad as the other. He found a way to mix it with Urological anesthetic working with the drug company on it. that helped a lot and almost 2 years later I have been clear. CIS is a really pain in the bladder but if it is superficial you have a really good chance of keeping it under control. Aggressive follow up is recommended. And eventually annual cystos forever. Be sure to get the grade and stage of the cancer. CIS is usually high grade and like to recur. But it can be monitored before it gets into the muscle. Hopefully yours did not go that far and you will do well. Keep us informed.

    Kiowa

    #15684
    Jack Moon
    Keymaster

    Hi DarKov

    I have had 30 BCG between 2006 and 2009. I had very few side effect during the 1st 12 treatments, but from 13 through 30 the side effects kicked in. Urgency and fatigue, along with some bladder spasms. But I am not complaining as I have been cancer free since 2007.
    All the best and please keep us posted on your progress. Many here have experienced BCG treatments.
    BCG = Bladder Cancer Gone
    Jack

    #15696
    stumblegirl14
    Participant

    Hello Dar, I wanted to welcome you to the site and wish you the best going forward. The guys have managed to give you some great advice so there is no need for me to offer more. I think the waiting for the results from the TURBT is overwhelming and we wish we could get all our answers sooner. Hang in there and hopefully the doc will have the answers to relieve your stress. Best of luck 🙂

    Flo

    #15701
    marysue
    Participant

    Hi Dar; Welcome but sorry that you have reason to be with us.

    As a veteran of 21 BCG treatments I can tell you that it is not fun but it seems to have done the trick for me. The usual schedule is once a week for 6 weeks and is sometimes followed up with sets of 3 (once a week for 3 weeks) for at least a year.. These are often referred to as maintenance treatments. The side effects generally include low grade fever, minor chills and body aches, pain and irritation on urination. I also experienced a lot of headaches and digestive upset but this reaction was considered unusual. Many people also report feeling a bit depressed due to the fatigue but it generally wears off once treatments are completed. The side effects vary with each person and until you are into you won’t know how it affects you. If they are getting up there in intensity then you will need to have a heart to heart with the doctor about the level of pain and discomfort and what can be done about it to get you through the treatments. Be prepared to reduce your work schedule if necessary. It will also help to clear your schedule of anything else not urgent. I strongly suggest that you use this time to focus on you and your recovery.

    I found that I needed the day of treatment off and the following two days to allow time to rest and recover. Some are OK the next day but the side effects can be cumulative where they get stronger as treatments progress. Some people like Jack go through many treatments with minimal effect and then find towards the end they really start to feel it.

    CIS is an aggressive cancer but it usually responds well to BCG. I had a mix of CIS and papiilary (wart like) tumours. My reoccurrence two years later was a single papillary. The CIS has never returned and that was nearly 5 years ago.

    I had pretty powerful side effects but it was the encouragement of others here at this site and reading about the effects of dealing with a radical cystectomy (bladder removal) that helped me pull myself up by my bootstraps and power through the treatments. The thought of having such a big surgery really motivated me to fight to keep my bladder.

    The worst is voiding for the first time when dispelling the drug. It does feel like hot razor blades or hot shards of glass. Drinking tons of water helps dilute the urine and the remaining drug in your body. The guys all say that they sing soprano. As a woman I was singing an opera aria and I don’t sing!! I also curse plenty and I’m not one to usually swear. I also suggest make sure that you are drinking lots of water now to help heal your bladder. Avoid caffeine as well and it tends to irritate the bladder. Peppermint tea is very bladder friendly and seems to help you feel better all over. Hot baths, Tylenol or Aleve help with the aches and pains and let you sleep. Let us know what it will be and if BCG is the route you will be going we will guide you through it. Take care.

    #15708
    DarKoz
    Participant

    Thank you very much for all info and for your support. It means very much for me and my wife. I feel I need to give more information about myself. I do appologize I did not do it before. I am almost 51 years old and never had any serious health issue. In April 2013 I noticed blood in urine, had tests and on May 16, 2013 had cystectomy. The result almost 2 weeks later was CIS. On June 10, 2013 I had TURBT and now I am waiting for results. According to my doctor it should be available early next week. My doctor thinks that muscle is not affected, but he wants to confirm it. He mentioned BCG and, if the result is as he thinks it should be, he will start BCG as soon as possible. He also mentioned once a week for 6 weeks, then he wants to do cystectomy again and, if all is good, he said BCG will be done every 6 months. He calls it maintenance. This is as much as I understood him. I will get more details once results are available and before first BCG treatment providing that it is only on surface. I also have to deal with my work. I am law enforcement officer and it seems that i will be on light duties for a longer period of time. It is early for any predictions now. Once the result is known I will speak with my boss and will make plans. One more time, your support is really highly appreciated and, as I said before, it is not only very important for me, but for my wife also. By the way, my wife found this site and encoured me to register.

    #15715
    marysue
    Participant

    I’ll correct you a bit on your terminology. The exam to see inside your bladder is called a cystoscopy. Cystectomy is the surgical procedure to remove the bladder.
    The usual protocol of BCG is once a week for 6 weeks followed by maintenance treatments of once a week for 3 weeks at 3 months, 6 months and 12 months after the first date of the first 6 week treatment. You should have a cystoscopy about 1 month after completing each round of BCG to see how things are. Sometimes the doctors recommend treatments over a 3 year period depending on how well you are tolerating the drug and how well it is working for you. It is a good idea to talk to your boss about your duties while doing this treatment. Hopefully your side effects will be minimal. It varies widely from person to person. I had a lot of side effects and had to cut back my hours at work but not everyone has to. My suggestion is be prepared but be as positive as you can. Keep in touch and let us know how you are. Waiting for the results is the toughest part of this whole thing. We know what it is like. Hang in there. By the way your wife is welcome to participate on this site as well.

    #15732
    DarKoz
    Participant

    Thank you for correcting my mistake and I do apologize. I still did not receive results, but I have been scheduled for BCG. It seems that first one will be on July 05, 2013 and then the others within 6 weeks. As soon as I have results I will let you know. Thank you to all very much for your support.

    #15751
    DarKoz
    Participant

    First BCG is actually scheduled for June 28, 2013. I have result from TURB and my doctor is saying that everything is on surface and muscle has not been affected. In last 4 days I have another concern and I would appreciate if somebody can give me an opinion. After TURB I have urinated blood only for one day and then for the next six days there was no blood. However, in last 4 days I urinated several times blood clots and blood and today I urinated more blood that in last 4 days. It stopped, but I am wondering is this normal. I am concerned especially because after TURB I had blood only one day and everything was good until 7 days after when blood came again as well as blood clots. I tried to contact my doctor, but he was not available. I will go to emergency if this continues. I would appreciate if somebody can tell me if this is more or less normal. Thank you in advance.

    #15755
    Jack Moon
    Keymaster

    Hi DarKoz

    I went through similar after my 1st Turbt. Doc told me that scabs would have formed due to the size of the tumors he removed and he went deep enough to ensure to get muscle for biopsy. The clots and blood cleared up after a couple of weeks. Hopefully this is your case also.
    All the best,
    Jack

    #15757
    Greg
    Participant

    I also experienced similar and got the same info Jack has mentioned. It should clear on its own. Of course, you are the best judge of what is a crisis so seek medical advice if you believe something is amiss. But the scabs and clots and blood have to exit the body when the healing is progressing and there is only the one exit. All the best.
    Greg

    #15832
    DarKoz
    Participant

    On Saturday June 22nd I ended up in emergency since bleeding was excessive. They did irrigation of the bladder and bleeding stopped after that. I spoke to my urologist and he decided to postpone BCG for two weeks. It seems I will start on July 12th. Bleeding stopped, no clots for more than a week, but discomfort and pain during urination is still present. It feels like a muscle spasm and I feel it even when not urinating. I am not drinking coffee anymore and I am wondering if somebody can tell me their experience with coffiee. I crave it from time to time, but I am not sure can I have it even in moderate amount.

    #15861
    Dawn
    Participant

    Hi, You are asking great questions! I will share my experience regarding muscle spasms. After my first TURBT with the associated treatment of mitomycin I did experience spasms at night. During the day I was uncomfortable, but ok. However, at night I would have spasms and pain that would get me out of bed – could not sleep. The occurrence of this was most severe 3 weeks after the treatment. It did settle down by week 5. Talk to your doctor about them – they can explain what is happening. My GP told me it was due to the nerves resting at night and being impacted by the mitomycin. Good luck with your BCG Treatments. As others have stated, you will experience discomfort and urgency to pee as the treatments progress. BCC is a great support! Dawn

    #15885
    DarKoz
    Participant

    Thank you very much, Dawn. I had my fist BCG this morning. So far so good. Urgency is there, discomfort, pain also. But, I am not complaining. I am aware that it will be worst as the treatment progress. I am ready, at least, I think I am. Five more, five more weeks and then I will see my urologist six weeks after. The support here at BCC means a lot.

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