Home Forums All Categories Non Invasive Bladder Cancer Upstaging to muscle invasive significance?

  • Upstaging to muscle invasive significance?

    Posted by frannie72 on September 7, 2018 at 6:14 pm

    My husband recently had a kidney stent and doctor found bladder mass incidentally, removed it and path report show high grade urothelial papillary carcinoma T1.
    October 4th doc says they will perform TURBT and maybe upstage it. So even though the diagnosis was T1 it’s not for sure until the TURBT? If it’s upstaged to T2 that means its invaded the muscle, correct?

    frannie72 replied 5 years, 9 months ago 3 Members · 8 Replies
  • 8 Replies
  • frannie72

    Member
    October 5, 2018 at 7:15 pm

    My husband had the restaging TURBT yesterday, along with laser treatment for his stones (lithotripsy didn’t work). The doctor said he took out more from the original area and then several samples from areas in the bladder that looked atypical and “angry.” This is new information, that there are “angry” looking areas within the bladder lining – but he’s not sure if they were already there or if it’s inflammation/trauma from the stent, the stone debris going thru there etc.

    Is that a typical finding of bladder cancer, that areas look “angry”?

    We have an appointment on 10/11 to get the results of the biopsies.

  • frannie72

    Member
    September 14, 2018 at 2:05 am

    Yes, one day at a time. I apologize for the typos in my previous post, should not have been trying to post on my phone in the hospital! At the moment, nothing happening until October 1st, he’ll have an abdominal CT, then the TURBT restaging on October 4, then I suppose a week wait and then we’ll know what we’re actually dealing with. I am just truly hoping this is something we can put behind us soon. I am sensing, though, from reading various posts, that even if the TURBT restaging shows nothing new, he’ll have to be monitored, which I guess means regular scopes and scans? I’ve tried to get info from the urologist but he is not saying anything really, I suppose until we know more. But as you said, one day at a time, until we get new information.

  • Alan

    Member
    September 12, 2018 at 8:27 pm

    When a DX is high grade a second TURB is almost always done just to be safe. The bad part is waiting to be re-scheduled (hopefully they have already done that) coupled with the pathology report. The probability is that is where it will stop and the normal treatment is BCG or immunotherapy. I have learned with this or any other of life’s issues it is simply take one day at a time…and I know that is easier said than done.


    DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
  • frannie72

    Member
    September 12, 2018 at 6:07 pm

    My husband had lithotripsy today, hopefully it will work on the large stone he has.

    Dr. mentioned to be after the procedure when I asked him about the upcoming restating and he said that the path report “surprised him” because it seemed “out of proportion” with the mass he removed. So he thought it was low grade and it turned out to be high grade T1 papillary. He wants to back in and see what else is going on.

    Is he trying to say that the situation is more worrisome? It may be more than the original 2 cm mass he removed?

  • jack-r

    Member
    September 8, 2018 at 10:21 pm

    Frannie,

    I think that it is fair to say that everyone of us who get a cancer diagnosis feelsas if we were slammed to the ground and we are not sure how to get back up.

    There is never enough time to deal with all the questions that arise once we start to breathe again. Doctors are just too busy. In that vacuum, our worst fears have a chance to surface. Unless we can get pointed toward the answers we so badly want, we can be lost.

    Is your husband interested in searching on line, or asking those pesky (and seemingly embarrassing) questions that need answers ? the internet has both helpful and downright dangerous information; there are many well known groups that offer factual information on ANY facet of the cancer experience.

    This forum is a good source of group-vetted information and referral to other sites. Cancer.org the American Cancer Society is reliable, as is Cancer.gov the National Institutes of Health web site.

    Once cancer has found us, we need to address our worst fears and concerns, because we need to make care decisions. We need knowledge to replace fear, for ourselves and our families.

    An alternate to using the net for answers is to ask for a referral to a social worker or cancer navigator to ANSWER all the questions that bother or nag at us.

    Fear offers no hope. Things do get better the longer you are past the initial shock.

    Best,
    Jack


    6/2015 HG Papillary & CIS
    3 Years and 30 BCG/BCG+Inf
    Tis CIS comes back.
    BC clear as of 5/17 !
    RCC found in my one & only kidney 10/17
    Begin Chemo; Cisplatin and Gemzar
    8/18 begin Chemo# 3
    Begin year 4 with cis
    2/19 Chemo #4
    9/19 NED again :)
    1/2020 CIS is back
    Tried Keytruda, stopped by side effects
    Workin on a new plan for 2021
  • frannie72

    Member
    September 8, 2018 at 8:39 pm

    Thank you so much for your helpful posts.

    It seems like the treatment plan for T1 is highly individualized depending on many variables and criteria. I was reading that in some cases, they even do cystectomy for high grade T1! My husband is older (71), would that make a difference? He’s terrified of nothing but a cystectomy. This has been such a shock, he’s always in very good health, we have been married for 22 years and the first time he was ever really sick was last year when his flu turned into pneumonia. We have a so-called “age gap” marriage (I’m in mid 40’s) and have minor children so he’s panicking a bit.

  • jack-r

    Member
    September 8, 2018 at 3:42 am

    Frannie,

    There are fairly “standard” treatment recommendations, based on stage at the time of first discovery of bladder cancer. Nothing is written in stone – overall condition of the patient, specific situation of the cancer, patient preference and doctor/care team practice all converge on a treatment.

    As patients it is up to us to ask for recommendations and expected outcomes; alternative recommendations; second opinions and become comfortable with OUR choice(s).

    The following link to an American Cancer Society paper – “Treatment of Bladder Cancer, by Stage” offers an overview, a STARTING point for understanding options and discussions with the doctor and care team.

    https://www.cancer.org/cancer/bladder-cancer/treating/by-stage.html

    Thank you for being there for your husband.

    Best,
    Jack


    6/2015 HG Papillary & CIS
    3 Years and 30 BCG/BCG+Inf
    Tis CIS comes back.
    BC clear as of 5/17 !
    RCC found in my one & only kidney 10/17
    Begin Chemo; Cisplatin and Gemzar
    8/18 begin Chemo# 3
    Begin year 4 with cis
    2/19 Chemo #4
    9/19 NED again :)
    1/2020 CIS is back
    Tried Keytruda, stopped by side effects
    Workin on a new plan for 2021
  • Alan

    Member
    September 8, 2018 at 12:12 am

    Sounds like when the stent was put in also the surgeon was able to do somethig close to a TURB and took a biopsy of the bladder. TURBs are often re-done anyway to be sure the stage is correct and check any other suspicious areas so that is good. Yes, 2nd biopsies will often change the staging. If it is T2 that would be muscle invasive. Protocols are different on T1 which is usually done with BCG (immunotherapy) or other bladder agents when high grade, and T2 usually means a cystectomy. Either way, it will be good to research what may happen once a plan is set. The big key is BOTH are treatable and beatable. Keep us posted and lets trust it is T1.


    DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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