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Homepage – Forum Forums Non-Muscle Invasive Bladder Cancer High-grade papillary urothelial carcinoma – Surveillance only

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  • #47625
    Chelsea
    Participant

    High-grade papillary urothelial carcinoma.
    Negative for lamina propria invasion.

    No detrusor muscle present.

    The above is my pathology result. I had a TURBT one month ago. I saw my Urologist and he said he’s only going to do a surveillance (he said it was ta high risk and regardless of high or low risk, for ta, it gets treated the same, which is a cystoscopy every 3 months. No BCG or anything else.).  Has anyone with the same kind of diagnosis had only surveillance?  I’m worried that perhaps I should get more treatment?  Thank you.

     

     

    #47627
    KJL
    Participant

    Hi Chelsea… I have not heard of surveillance only for high grade. You might like to check out the following link.  It is from the Canadian Urological Association on recommendations for Standard of Care.

    https://www.cua.org/system/files/Guideline-Files/7367_v6.pdf

    You might like to join us for the Women’s Only group on the first Wednesday in June.  Contact Angela Pelletier at

    angelap@bladdercancercanada.org.  She will send you a Zoom link for the meeting.

     

     

    #47628
    marysue
    Participant

    Hi Chelsea:

    I have had Ta high grade bladder cancer 3 times – 2008, 2010 and again in 2022.  All 3 times it was recommended that I do BCG because of it being high grade.  Follow up for low grade can vary from only surveillance to having some kind of follow up treatment but like KJL says, I too, have never heard of only surveillance for high grade. I’d be having another conversation about that with your urologist as to why he thinks you can get away with only surveillance. If you are not satisfied with his answer, I would ask for a second opinion.  Best Wishes.  (((HUGS)))

    #47633
    Chelsea
    Participant

    Thank you KJL and MarySue for replying to my posts.  You are very helpful and kind. It’s very much appreciated.  Today, it’s a month since I had the TURBT and I’m very worried.  I will be looking for a second opinion. Big hugs!

    #47638
    Nightingale
    Keymaster

    Hello Chelsea,
    Have you spoken with your family doctor about this? It might be worth a discussion with your family doctor if the report he/she receives provides more information. The other option is to request a phone call with your Urologist and ask the question about the surveillance. I had surveillance only, but mine was very low grade, non-muscle invasive.

    Please let us know how you fare. Thank you.

    My best,

    #47639
    Chelsea
    Participant

    Hi Nightingale,

    Thank you for your post.  My family Doctor is on vacation until the end of May.  I’m looking for a Second Opinion referral and I also need to wait for my family dr. to be back.  I’ve been calling some walk-in clinics but they’ve been saying they don’t provide referrals.  I found some other Urologists I would like to have a Second Opinion from and it will take another 5-6 weeks to see if I get a referral and they’re ok to see me.

    When my Urologist gave me my pathology result, he said it was guidelines to just do surveillance whether low or high risk ta.  I think he meant high grade instead of risk. I asked him if I could call him if I had any questions, he replied “go google it”.  So, I don’t think I can give my Urologist a call to ask him any questions.

    My best,

     

     

     

    #47640
    marysue
    Participant

    Hi Chelsea:

    I’m sorry to hear about the type of response that you have gotten from that urologist.  That is very unprofessional and uncaring in my books.  The one good thing is at least you have had the TURBT and that has bought you some time.  The majority of doctors don’t want their patients to go on Google for fear of reading and misunderstanding what they are reading.

    Does your family doctor have someone covering for him that could give you a referral? If not, I hope that you can get into seeing your family doctor at the end of the month and get into seeing another urologist in June.  Best Wishes!  This is not easy.  ((((HUGS))))

    #47641
    Chelsea
    Participant

    Hi Mary Sue,

    Thank you for your kind words.

    It’s true, the way to look at it, at least the TURBT will help. My family doctor doesn’t have anyone covering for her, so I will have to see her at the end of May.

    It really is not easy and it is very stressful.

    Thank you again for your support. 🙂

    Best wishes and big hugs!

     

     

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