Home Forums All Categories Newly Diagnosed, New To The Forum Father Newly Diagnosed

  • Father Newly Diagnosed

    Posted by mmlaphillips2 on February 1, 2010 at 6:23 pm

    My Father was just diagnosed with High Grade Transitional cell carcinomy papillary and no papillary types. Stage 3
    Tumor evades into lamina propria and superficial muscle wall. Lymphovascular space invasion is identified. Section of intramiral ureter is present and shows high evidence of high grade carnioma in situ.

    The tumor is on the spot of the bladder where the uretha connects and blood vessels are located. It was a large tumor according to Dr. and was also wrapped around the uretha tube . Doctor says that it is high grade and highly aggressive.

    His best option would be to have surgery and remove the bladder, uretha tube, and kindey but that is not an option as he has COPD and say he is not a canidate for surgery.

    His options are radiation and chemo, or nothing.

    At this time we are awaiting approval for CAT scan to see if it has spread with takes it stage four if it has.

    His next appt is with the radiation oncologist to find out more, hopefully before that will have catscan done, than meet with oncologist and urologist.

    The oncologist does not feel that is has spread which is good news, but still have to wait for the CAT scan. Its hard to belive that when at first by the family doctor, we were told your test showed a very tiny spot on your bladder and don’t worry its a slow moving caner.
    It is so frustrating obvioulsy because of the diagnois, but also wondering if this could have been caught sooner if his family doc had done a urine test.

    We do know that not all of it was able to be scrapped off which worries me espeically due to location.

    I know options change a bit if it has spread, but
    Is treatment and prognosis different, case by case, depending on location of where the tumor is on the baldder?

    mmc replied 15 years ago 5 Members · 14 Replies
  • 14 Replies
  • mmc's avatar

    mmc

    Member
    February 3, 2010 at 12:29 pm

    One piece of information that may help you convince him….

    Explain how this is all very new to him, but not to us. We’ve been through it. Pat’s been researching for 8-9 years. I’ve been researching for a few years. Others here have been researching for much longer than I have.

    The research has shown (not just ours, but the research of doctors over the years) that the biggest predictor of the most positive outcomes is being treated at a top bladder cancer hospital with top doctors. Experience matters and that’s what they deal with every single day, many times a day. The multidiscipline teams they have make a difference. The puliminologist (as Will and Pat mentioned) is the one to make the call in conjunction with the rest of the team about his candicacy for surgery.

    Oncologists do not have the same experience in dealing with bladder cancer.

    Good luck in your discussion with your father!

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • mmlaphillips2's avatar

    mmlaphillips2

    Member
    February 3, 2010 at 5:22 am

    Pat, I looked up the info and hopefully will be able to talk him into it. That will be a battle in itself. Wish me luck. Thank you so much.
    Catscan this week hopefully it shows nothing.

  • 's avatar

    Guest
    February 2, 2010 at 5:42 pm

    Did you see the oncologist at USC/Norris? They have a multi diciplinary team there including pulmonologists. Ask for a consult there. Did you see Gill? or Skinner?…Ask for Gill and tell him Pat his infamous Indiana pouch from Cinti sent you!!
    pat

  • mmc's avatar

    mmc

    Member
    February 2, 2010 at 12:05 pm

    For men it is the bladder and prostate that are removed.
    If the surgeon finds cancer in the urethra, that is removed as well. There will also be a number of lymph nodes removed.

    If they know that cancer has spread to a kidney, that’s one thing but they don’t remove a kidney unless the cancer has spread there.

    It’s really important to get him to USC and get to the doctor that Pat recommends. The skill of the surgeon is critical.

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • mmlaphillips2's avatar

    mmlaphillips2

    Member
    February 2, 2010 at 4:55 am

    When the surgery is done, is it usually only the bladder removed.

    Not sure if it makes difference but was told if he Could have surgery it would be bladder, uretea, and kidney.

  • mmlaphillips2's avatar

    mmlaphillips2

    Member
    February 2, 2010 at 4:31 am

    Thank you everyone.
    Yes, it was USC that the urologist said it would need to be done prior to oncologist saying it could not be done.

    Now I need to try to talk him into getting another opinion.

  • 's avatar

    Guest
    February 2, 2010 at 4:04 am

    Oh my gosh you’re right by one of the best bladder cancer centers in the country at USC/Norris and my surgeon who did my surgery laparoscopically in 4hrs and 20mins and is considered one of the top urologist/surgeons in the country..Dr. Inderbir Gill..and he’s such a personable man. He’s also Head of Urology.
    http://www.usc.edu/schools/medicine/util/directories/faculty/profile.php?PersonIs_ID=3840
    just call the main number and ask for Blanca , Dr. Gills assistant ..she’ll set you up.
    http://www.usc.edu/schools/medicine/patient_care/hospitals_clinics/usc_norris.html
    Pat

  • wsilberstein's avatar

    wsilberstein

    Member
    February 2, 2010 at 3:38 am

    mmlaphillips2 wrote:

    Oncologist is the one who said he can’t do the surgery, just by looking at him and seeing him on oxyogen. I don’t think he had his medical file but could be mistaken.

    A pateint with severe COPD should be under the care of a pulmonologist. The pulmonologist should determine whether your father is a surgical candiadate in consultation with the surgeon.Then the pulmonologist should take an active role in perioperative care if your father is a candidate for surgery. All surgery has risks. COPD increases the risks. Doing nothing carries a risk as does chemo and radiation. Its all a matter of balancing the benfits against the risks to make a decision. You need the pulmonologist to weigh in on your father’s COPD.


    -Warren
    TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
    Urethral stricture, urethroplasty 10/2009
    CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
    T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
    Incontinent. AUS implant 2/2014. AUS explant 5/2014
    Pediatrician
  • sara.anne's avatar

    sara.anne

    Member
    February 2, 2010 at 12:51 am

    There are some superb urological cancer specialists in your area and I am sure than Pat will be giving you a run-down on them. Most oncologists and even urologists are NOT experts in the area of bladder cancer, so I wouldn’t take their advice too seriously until you have had him seen at a major urological cancer center. He may be very pleasantly surprised at their recommendations and prognosis!!

    Will be keeping good thoughts for you both.

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • mmlaphillips2's avatar

    mmlaphillips2

    Member
    February 2, 2010 at 12:34 am

    Thanks.
    It is the Ureter not the uretha. He lives in Southern Los Angeles. The urologist said if he had to have surgery he would have it at UCLA that he would not do the surgery because he felt it would be better there.

    Oncologist is the one who said he can’t do the surgery, just by looking at him and seeing him on oxyogen. I don’t think he had his medical file but could be mistaken.

  • 's avatar

    Guest
    February 1, 2010 at 11:45 pm

    Just want to clear up one thing….are we talking about his urethra or one of his ureters…makes a difference. As far as COPD patients undergoing surgery its done all the time but ONLY at a high volume hospital that specializes in the procedure he needs done.
    The difficulty in predicting the risk an individual patient actually faces means that doctors who treat advanced COPD patients often face a knotty decision: Should potentially lifesaving surgery be withheldor notwhen the risk of postsurgical pulmonary complications seems high enough to cancel the benefits?

    A major comfort, when contemplating surgery, is that more and more doctors are learning to avoidor at least minimizepostoperative complications by recognizing the severity of a patient’s COPD, then taking appropriate preventive steps before, during, and after surgery. We note these steps below.

    Before Surgery

    One of the most important presurgical issues is which hospital to choose. Our advice is to choose one that does a high volume of the procedure you need. It’s been shown time and again that the number and severity of complications following a particular surgical procedure go up as the experience of both surgical and nursing staff go down. With more procedures, the postoperative course is substantially smoother and any complications that do arise are far more effectively controlled.

    Next is having a good preoperative plan, to minimize your obvious vulnerability to pulmonary complications. The general aim of the plan is maximizing your physical condition. And it helps substantially. Research indicates, for example, that proper preoperative care can reduce the postsurgical occurrence of pneumonia by 60%.

    Although the details of your presurgical program would depend on the severity of your lung disease, the basic components apply to any COPD patient
    So your dad is very young and seems pretty stubborn. His chances of surviving this depends on his getting to a major center. Don’t know where you are but Johns Hopkins and Memorial Sloan tops as is Mayo and a few other places. So give me a hint as to where you are so we can change his mind.
    Pat

  • mmc's avatar

    mmc

    Member
    February 1, 2010 at 7:21 pm

    While the location of the tumor has a lot to do with a diversion creation if he were to have the cystectomy (removal of bladder), it doesn’t have quite so much to do with treatment otherwise. The main thing is how deep did it go and if it spread. T3 is clearly not good and as Pat said, almost always involves chemo.

    52 is pretty young but it sounds as if his COPD is pretty bad if the doctors are saying that he can’t have surgery because of it. They even do surgery to alleviate symptoms of COPD sometimes but I don’t know details about that.

    Hopefully, he’s quit smoking.

    Pat’s advice on getting to a bladder cancer specialist center is the best advice there is. They deal with bladder cancer of all stages and grades every single day. If he was only just referred to the oncologist last week, it doesn’t seem like there could be that much attachment to him/her already.

    The best outcomes come at major bladder cancer hospitals and Pat knows all of the best ones.

    Clearly your dad already knows that the ‘doing nothing’ option is certain death and probably not that terribly far down the road.

    Where he goes for treatment has everything to do with the quality of care he will receive, the recommendations for treatment he receive, and the outcome of treatment.

    I can’t really advise on what’s best between chemo, radiation, or a combination of the two. I’m 50 and had my bladder out a bit over a year ago and am doing fine. They said I had some signs of COPD but not to the point of needing oxygen. It is clearly very different though as I was just barely stage 2 when I had my bladder removed and they made a new bladder for me.

    Have him come to this site if he can so he can ask questions. We have people in all different situations and all different stages of treatment that he can communicate with.

    The more information he has, the better equipped he will be to make the best decision for himself and his family.

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • mmlaphillips2's avatar

    mmlaphillips2

    Member
    February 1, 2010 at 7:01 pm

    Hello. He is 52 years old. I wanted him to get a 2nd op. but he does not want to. His desc. on Rad and Chemo or nothing is big enough and he does not want to be told something else and than try to figure out what to do.
    Cystectomy is the removal suregery, correct? If so he can not have that done. Surgery is best but not an option for him since he has COPD and uses oxogen.

    I had a feeling that location had a lot to do with treatment and prognois. Looking at the american cancer society prognosis at 5 years is diff. than what the oncologist said, but I understand it depends on the particulars.
    He had IVR done on 1-7, go results on 1-14, TURB done on 1-20-2010, results on 1-28 and met with oncologist on 1-29. I am sure his questions and views will change about he has absorbed it for a few more days.

  • 's avatar

    Guest
    February 1, 2010 at 6:45 pm

    First of all so sorry to hear about your fathers late diagnosis of bladder cancer. And yes location of the tumor does make a difference on what kind of diversion he may get.
    But at this point you really REALLY need a second opinion from a top cancer center or university center that deals with bladder cancer on a regular basis. A re-TURB is certainly indicated and really is now routine with bladder cancer as first go around they don’t always get the margins especially if your with a local uro who does not see much bladder cancer.
    How old is your father? a lot depends on this as for treatment.
    At Stage 3 chemo is almost always indicated prior to cystectomy.
    tell us where you are and i can recommend a center of excellence.
    pat

Sign In to reply.