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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 5 posts - 1 through 5 (of 5 total)
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  • #8404
    Steve Bellus
    Participant

    About 8 weeks ago I joined this group after my first diagnoses. Since then I have had a turbt and it revealed that I had a number of small superficial tumors but one larger one was tagged T1 low grade. A second opinion at Princess Margret in Toronto did another cystoscopy this morning. He says it’s rare to see T1 and low grade together. It’s usually high grade. So now will have another turbt to make sure all tumors are removed.
    I’m feeling very nervous at this point. Not sure what this all means or what my outcome might be. I’m loosing hope. Any help would be appriciated.

    #20776
    Jack Moon
    Keymaster

    Hi Stbell
    Sorry you have been diagnosed with nmibc. You are at the right hospital and I am sure they will get to the bottom of your stage and grade for the larger tumor.
    Yes it is extremely rare to have T1 low grade tumor but not impossible. I am sure your Uro at PMH will have their pathologist review the slides and get his/her opinion regarding the 1 tumor. So until this 1 tumor is correctly identified a treatment plan can not be properly determined. In this case a re-turbt is the normal practice. Do not lose hope, as non-muscle invasive bladder cancer can be treated. I was diagnosed in 2005 with non-muscle bladder cancer low/med grade with 1 large tumor and 2 small tumors. After being treated with BCG weekly and maintenance treatments I have been all clear since 2007.
    Keep us posted and all the best on the re-turbt.
    Jack

    #20778
    Paul D
    Participant

    Stbell keep believing you will come through this BC journey, I have been on my BC journey since January this year and there is so much I have learned about myself. The one thing that has really worn me down is the “waiting” whether it’s for result’s of biopsies, getting a date for Cysto’s, treatment of what kind, date when treatment starts and where it will take place. It drives you mad. I have T1 high grade non muscle invasive and have just started BCG and family and friends have rallied around so take strength from them. I was scared when it all started and with no one around in a similar position to talk to, I have asked questions of my fellow BC club mates on this web site including Jack and as yesterdays post BCG treatment problems I had they put me right so good luck and best wishes for your future BC journey. You are not alone.
    Paul

    #20784
    DDep
    Participant

    Hello StBell,

    I am sorry to hear about your diagnosis. It is good that you joined BCC.
    I found the time between TURBT(s) and Pathology results to be the most stressful.
    Once the Pathology result is known and what lies ahead is clear – emotions become less difficult.

    I understand you are troubled.
    T1LG is not common … It is as uncommon as TaHG. T1 tends to be High Grade (HG) and Ta tends to be Low Grade (LG).
    HG means the tumor tends to grow quicker (under the microscope, the cells appear not well differentiated). Because they grow more “aggressively” they grow out into the bladder but they also tend to penetrate the next layer down, the “Lamina Propria” of the bladder – hence the T1 designation. LG means the cancer grows slower and it also tends to grow “out” into the bladder cavity.
    Low Grade is a “better” diagnosis than High Grade.

    I initially had a large 4.5x3cm Tumor removed by TURBT. Notwithstanding that the Pathology showed LG, with some focal HG in the Tumor body (the penetration was entirely Ta and LG in the Tumor base), the Urologist scheduled me for second TURBT. When I asked why I was having a second TURBT given the TaLG pathology, he said he still had concerns because of the size and blood – and, “It is standard practice now in order to be sure”.
    A number of us on this forum have had second follow-up TURBTs.
    Just to help put things in perspective.
    About 70% of people diagnosed with Bladder Cancer (BC) will be Non-Muscle Invasive Bladder Cancer (NMIBC) – which usually means some initial bladder sparing (saving) treatment. The odds are well in your favour!!

    I know it is a tough time right now. We have all been there.
    My family doctor explained my first Pathology result and the prospect for a second TURBT this way:
    “MNIBC is a good diagnosis. Sounds like you are on ‘Third Base’. Dr. XXXX wants to do a second TURBT to give you a ‘Home Run’.”

    And finally …
    For NMIBC, The treatment options do not vary widely when there is more than just a Single, Small (less than 3cm), TaLG Tumor.
    I am being treated with BCG (large TaLG). Others with T1HG are getting similar BCG treatment as I am.
    In your case, because you had a number of tumors in the bladder (multifocal – more than a “single”), will the treatment be any different for your NMIBC if after the reTURBT it is found out to be no change OR some other NMIBC? ….Probably not.
    So if it makes no difference in treatment …. Why worry? The end result for initial treatment is the same !

    Please do not lose Hope … There is very much to be hopeful for! Life is worth living! – As many on this forum can attest.

    God Bless

    DDep

    #20794
    marysue
    Participant

    Hi Stbell!

    Welcome to the site that no one wishes they had to belong to. I too, when diagnosed with TaHG multiple tumours in 2008 and a single TaHG tumour in 2010 found it difficult to keep on going. So I get what you are thinking.

    However, what helped me was when a friend suggested that I reframe everything and see the surgery and BCG as a way of healing not as “toxins” or something negative for my body. We all got this cancer for a reason or reasons. Many times we may never know why and yes it is difficult to face the future sometimes. But that being said, once I got my head around everything (people on this site helped a lot with that) and decided to put on my “big girl pants”, changed my outlook and got through the treatments, it made a world of difference in how I felt overall.

    I also found doing a lot of supplementary things helped as well because they gave me a feeling of control. I did and still do things like extra exercise, yoga, acupuncture, eat as well as I can – includes growing a lot of my own veggies and some berries, and taking some vitamin supplements. By doing this, I feel I’m doing my best to give my body the best support I can give it to become stronger in preventing the cancer from returning. I now look at the tumours as foreign invaders that somehow got into my body and I’m building the best defenses against them ever reinvading. I’m almost 7 years cancer free.

    The other aspect to look at is your mental well-being. Being diagnosed with the big “C” in any size, shape or form is devastating to the majority of us. Take time to do the things that bring you pleasure as in hobbies or activities. When doing BCG treatments and I still do this when I go for my annual cysto check is to treat myself to something special. I did this as a way to reward myself for successful completion of each step, be it a checkup, treatment or surgery. It gives me something to look forward to, to help with getting through whatever it is that I have to do.

    If you find that you are really struggling mentally and feel that you are not able to cope, do not hesitate to contact a cancer support centre in your area or at the very least speak to your GP or urologist. Here in Calgary we have a psycho-social department at the Tom Baker Cancer Centre. They have trained professionals that help people get through the rough stuff. Some of my support group members have told me that they’ve been and the help they received really made a difference. It helps with not only coping with your life situation but with the physical healing process as well. The mental stress will affect the physical. I personally found that as my mental well-being straightened out, I was able to cope much better with the side effects.

    I hope what I’ve said helps. Take care and let us know how it goes. (((((HUGS))))

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