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  • #7889

    Yesterday they found a tiny speck in the bladder so they were able to burn it off. Had to remove all jewellery so my guess is a combination of electric jolts and laser were used. A little uncomfortable but manageable.
    It seems my urethia is very narrow so that is why they have trouble with the catheters during treatments. Now I start all over again 6 more BCG’s. Dr. said if these tumours keep popping up then we need to look at other options. I am doing everything I can. Drinking lots of water, exercise , eat tons of vegetables and fruit take vitamins. Thinking though of adding vitamin C . Any suggestions? Feeling very discouraged. I have had two reoccurrance’s in 18 months. Friends and family are great but if you do not travel this road it is hard to fully understand the emotions you feel.

    Yogagal

    #16041
    Greg
    Participant

    I know a number of people swear by Vitamin D as well and take it on a daily basis. No doubt they will advise on that. I have done the same myself, though am not a regular user!

    Of course, the cancer has a mind of its own and so the best you can do is keep as healthy as you can. That may or may not affect the cancer growth.

    Should discussion ever get around to “other options” make sure you are discussing those other options with a uro-oncologist at a major cancer centre if you are not already under the care of such a urologist. These are uros who specialize in cancer treatment as opposed to a general urologist. Just my take on it!

    In the meantime, don’t despair. I had seven recurrences in 2 and a half years. Sadly, it’s often the nature of the beast.

    #16043
    Jack Moon
    Keymaster

    A recent study done at Rochester Cancer Centre found that taking Vit D during BCG treatments had a significant impact on the recurrence of bladder cancer. I will try to find the research paper that was written. I began Vit D supplements 1,000 units in summer and 2,000 balance of the year in 2007 while taking BCG treatments. I have not had a recurrence in over 5 years. I continue that same regime today.
    Do not get down, I had 2 recurrences during 2006 and 2007, just the nature of this disease.
    All the best,
    Jack

    #16049
    marysue
    Participant

    Hey yogagal!

    Sorry to learn of the tumour. At least it was small. I agree with the others about Vitamin D. I too, heard somewhere, not sure if it was here but Vitamin D is supposed to help with boosting BCG. I’ve had 21 BCGs and lived to tell the tale. At the start of my second 6 week round in 2010 I started on Vitamin D 2000IU per day. After 6-8 weeks I reduced the dose to 1000IU per day and still take it. I also take Omega 3 along with a bunch of other stuff. I have been clear for over 3 years.

    Keeping fighting back with diet, exercise and as hard as it is try to stay positive. I found yoga, self help books like Chicken Soup ones and taking the “Healing Journey” program at Wellspring Calgary immensely helpful. And chatting with everyone here of course. Doing this for myself helped me reframe the bad childhood memories and see it as a necessary procedure to save my life not to see myself as a victim. This also gave me the strength to have the same kind of thoughts for dealing with the reoccurrence in 2010.

    As for the urethra difficulties, been there, done that and still do that. I was born with a narrow urethra as well as a twisted narrow left ureter. It wasn’t detected until I was about 4-5 years old when blood showed up in my urine. I had to undergo a urethra stretch procedure and later a voiding cystogram, cystoscopy and was catherterized only the Lord knows how many times. Two big surgeries followed to correct the birth defects. Bad childhood memories and having to “do it all over again” made it difficult for the nurses to get the catheter in properly for BCG. I have found deep breathing before the procedure helps and reminding the nurse to grease the catheter up with gel and freeze my urethra before inserting it. Some places don’t automatically offer anesetic for women. I also remind the nurse at the cysto appointment to instill the gel very slowly into my urethra giving it a chance to go down and freeze me properly. Bad pain at these exams made me flash back to being that little girl on the table again. Even though both uros I’ve had for the Bladder cancer insist that my urethra is fine and “normal” I don’t think it is. When doing BCG I also figured out to tell the nurse to go slow inserting the catheter. Some of them went too fast and would ding a nerve or something in the entry way and I would feel a sharp jolt of pain despite the anesetic. It is a matter of getting to know your body and get really insistent with medical staff about what works for you. If you get any flack go through the Patient Advocate department at your hospital. I did and got good results.

    This may also sound really crazy…. I’m sure Jack, Greg or Kiowa will want to cart me off to the funny farm….. When I was diagnosed with a reoccurrence in 2010 I got really upset and majorly depressed at the thought of doing it all over again – TURBT, more BCG etc. However, because of all the mental work I did I was able to reframe and see it as a chance to really attack the cancer. Every day before the second TURBT I kept telling the tumour it was history and literally was humming to myself “Na na nana…hey hey goodbye” as I was wheeled into surgery. I talked to my bladder before each BCG literally apologizing for what I was putting it through and that we’d both be OK. To this day I still check in with myself (courtesy of the Healing Journey teachings) and do things to try to stay balanced.

    As others have said if discussion comes up for “other options” make sure that you are dealing with a top specialist. If the “option” for a radical cystectomy gets tabled I would suggest that you make sure to ask tons of questions about the whys and wherefores of your situation to make sure that that is the best option for you. It is a huge life changing surgery as others here will attest to so that decision is not to be made lightly. Make sure that you know the stage and grade of the cancer you are dealing with. If it is low grade then you may have more options than if it is an aggressive high grade. You don’t want to be pressured into anything without full knowledge. However you are not there yet and hopefully won’t be so positive thoughts to you and best wishes for a successful BCG treatment. Keep in touch and let us know how it’s going.

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