Home Forums All Categories Non Invasive Bladder Cancer why treatment doesn’t work?

  • why treatment doesn’t work?

    Posted by star on June 19, 2007 at 10:37 pm

    hey all after your first year with turbt/bcg’s/interferion at least this has been my route- did they come back-the tumors after every time??? I have at least 5-6 in same areas and this time 2 new ones surprized him up top.
    so who has failed their scope every time? at least the first year 1/2? I know they come back and many folks have many surgeries and treatment but in a row every time?{no lapse time in between}
    Super stage 2 at this point can you keep this pace?
    whom lost the bladder as protocal ?
    Has any one been Disabled par say receiving ssi/ssd and working cuz of their bladder replacement?
    I am really wondering this part? send thoughts and your know how. star ;D

    Rosie replied 17 years, 4 months ago 9 Members · 12 Replies
  • 12 Replies
  • rosie

    Member
    July 11, 2007 at 10:54 am

    Altie, thank you so much for weighing in on your long term low grade, monitored and treated bladder cancer at a major cancer center. My purpose in posting on this forum is to put these various types of bladder cancer in their proper perspective and to detract from all the alarmist warnings that classify all cancers and particularly bladder cancer as the same disease. When I was first diagnosed seven years ago I found the blcwebcafe. I read the tales from the trenches which consisted of those with invasive bladder cancer. I emailed Wendy and told her reading that scared me more than anything. She replied she had trouble getting people with superficial bladder cancer to tell their story and invited me to tell mine. I did and then others followed. Wendy invited me back to this forum when the subject of recurrence came up. I have the entire in-depth transcript from the long term studies done on watchful waiting. I have now found a urologist in Norfolk, VA who was formerly at MD Anderson and very involved and knowledgeable and in agreement with the idea of watchful waiting if the patient meets the criteria. Watchful waiting is only one path available for those with recurrent low grade bladder cancer. Another for those with recurrent low grade is to have a urologist who can fulgurate in the office at cystoscopy rather than having to reschedule and have it done in a hospital or operating room setting. There are many family members who are Internet savvy who come on this forum, I hope they are better able to put their loved one’s condition in better perspective when they see and read our long term experience with low grade blc. There is enough alarming about cancer that is why I also put in the subject of “Distinguish it.” My real hope is that we can make a difference in distinguishing the cancer type and grade so the vigilance is there without the initial panic, and the risky and costly overtreament for recurrences once the pathology reports are consistent for low grade.. Rosie Ambs

  • Guest
    July 11, 2007 at 3:17 am

    I agree with Zachary…i agree with Rosie Ambs…i agree with Altie……ok want to know what i don’t agree with? That every uro or pathologist outside of a MAJOR cancer institution actually knows what they are doing..or grading…or even looking at….one only has to go into the Metastisis section to find the diligent patient who was diagnosed with superficial bladder cancer and without further TURBS was just fulgerated and is now in hospice…….Get your second , third or even fourth opinions if you like…but at least get the second from a major player as it were. Hey even sometimes we can enlighten our urologist….or maybe he doesn’t want to be enlightened…..maybe he shouldn’t even be your urologist.
    pat

  • Altie

    Member
    July 9, 2007 at 2:32 am

    Rosie,
    I kinda like what you are doing. I remember reading an article on “waiting” sometime ago, and I thought it was great idea! (As long as Docs are overseeing things via cystos.)
    My initial TUR was in March of 1998 – diagnosis of Ta, T1, low grade TCC.
    I had recurs at almost every cysto for the first three years!!
    After that, I went tumor free for nine months and in 2002 I graduated to a six-month cysto schedule. Sigh, but recurs showed up and the doctor changed back to a four month schedule.
    Until now, I had never gone a year without having a recur, but because of the low stage/grade these recurs are not a problem. They are removed via fulguration during the cysto.
    Many people with low stage low grade bladder cancer will never use this forum or email list because most bladder cancers only occur once or twice in a lifetime, or the stage and grade are so low that even constant recurs (like mine) offer no real threat.
    I live in NC but drive the 500 miles to Memorial Sloan Kettering in NY because I want to feel I am getting the best possible doctors. I say this because I want you to realize the very best doctors do nothing more than vigilance (cystos) and tumor removal via fulguration for low grade/stage TCC.
    I keep hoping they will eventually opt for the “let’s just watch the tumor route”!
    BTW – this March, I again, graduated to a six month schedule!! (Fingers crossed – I return to NY in September.
    If she finds a new tumor, I’m going to ask her about waiting. (But first, I am going to find the article I read and study it, so I’ll be more knowledgeable on the subject.)
    Rosie…I think u r my new hero! Who wants to have TURs or fulguration every few months when it may be possible that we can safely wait?
    Of course, I must note that I am strictly talking about low stage low grade.
    (If I had higher grade cancer, I’d personally opt for RC ASAP! At least, that’s what I think I’d do. Of course, one never really knows…)


    ~Fran
  • zachary

    Member
    June 29, 2007 at 4:20 pm

    [quote author=Mystic link=topic=981.msg6300#msg6300 date=1183118433]
    Rosie,

    YOU WOULD NOT RECOMMEND BCG TREATMENTS IF MY RE-OCCURANCE RETURNS??????
    [/quote]

    Linda, that is definitely a question you should discuss with your doctor, who knows the specifics of your unique situation. Would you honestly let the opinion of a layman stranger–however knowledgeable–override the professionals who know your situation and history and prognosis better than anyone here possible could?

    Edit–you should definitely talk with your doctor about what Rosie suggests. That makes perfect sense, and I don’t mean to imply that your doctor can’t learn new tricks or techniques. Folks here have done a lot of research that perhaps your own doctor hasn’t read yet, and Rosie may well have knowledge and facts that will be of interest to your physician.


    “Standing on my Head”–my chemo journal
    T3a Grade 4 N+M0
    RC at USC/Norris June 23, 2006 by Dr. John Stein
  • wendy

    Member
    June 29, 2007 at 12:42 pm

    Hi Linda,

    My sister has a Ta, Grade 1 tumor, a couple of recurs and then they just stopped coming for the past 6 yrs. She had no further treatment aside from TUR.

    Before you can decide about whether BCG will be of real help to you (Rosie is correct that there is not a lot of data stating it helps low grade tumors and is best on high grade and CIS), you need to know what grade the cancer was. That said, multiple recurs raises the risk, which means further treatment *may* be warranted (or not). In my sister’s case, no treatment was needed. But she definitely had grade 1 tumors.

    The new way of grading tumors is to use either high grade or low grade, no intermediate! The experts and the WHO(World Health Org.) are trying to get uros to standardize this around the world. It’s not that new, either, but is slow in getting picked up. The point being that grade 2 would no longer exist, forcing a urologist to treat the cancer as if it’s either *truly* low grade, non invasive and very unlikely to spread, or not. In which case it would called a high grade tumor. Chance is very big your uro is not yet using this new system, but it would certainly make things clearer for everyone if they did start.

    Pathology for bladder cancer is extremely difficult, so much so that experts are on the verge of saying all patients should have their slides read by a uro-pathologist. Opinions on pathology can vary widely as it’s a subjective test and experience counts. When any doubt is there, get a second opinion, that’s the guidelines about pathology, which is arguably the most important step on getting the best prognosis possible.

    If it’s within your means, consider a second opinion for everything to ease your mind about which path you take. And of course, once you make that decision, don’t second guess it and just go for it.

    This is a survivable cancer and you can get through this and come out the other side, although life is never quite the same after a cancer diagnosis, no matter what grade it is.

    Wendy

  • mystic

    Member
    June 29, 2007 at 12:00 pm

    Rosie,

    YOU WOULD NOT RECOMMEND BCG TREATMENTS IF MY RE-OCCURANCE RETURNS??????

    NO MEDS WERE INJECTED (TO MY KNOWLEDGE) AFTER SURGERY.

    I HAVE PATH REPORTS, I WILL LOOK WHEN I GET HOME FROM WORK AND SEND TO YOU WHAT IT SAYS.

    THANK YOU.
    LINDA


    Linda
  • mike

    Member
    June 28, 2007 at 6:59 pm

    or does it?…..65 yo male diagnosed with stage 1grade 2 transitional cell carcinoma in april 2001……had first turbt in june 01 followed by a round of mitomycin…..over the course of the next years went in 8 more times for turbt but didnt always have a recuirrence or get chemo….subsequent treatments were with BCG (3)……2005 cancer ‘invading” right ureter……get drs office cysto every 3 months and 0nce a year same day in hospital for ureteroscopy…..if doc doesnt think i need the BCG he give me a does Mito post-op……..currently am getting round of Mito……..pathology report from May 07 indicated possible low grade recurrance in or near right ureter…doc says it didnt look like C to him but is aggressive in his treatments…i am considered a “high-risk” for recurrance……so to me, as much as an inconvenince it may be, i will stick to the cirretn plan…….good luck all- Potts

  • rosie

    Member
    June 28, 2007 at 6:02 pm

    Linda,

    I have had 4 recurrences but never had any visible nor microscopic bleeding. None of those who I have been in touch with who have had recurrences have had any visible blood to signal a recurrence. I guess there are some who do have visble bleeding.

    It would certainly be wonderful if your healthy food diet prevented any recurrence. MY THOUGHTS should they Re-appear remain the same – BCG has not been effective for low grade papillary nuisance type bladder cancer. Was mitomycin or some other chemical agent instilled in your bladder after your TURB’s. Do you have written reports for pathology and operating room? What does it state. I think I could be of much more insight if I had that information.
    Rosie Ambs

  • mystic

    Member
    June 28, 2007 at 3:55 pm

    HI ROSIE,

    I HAVE WHAT YOU CALLED BY THE DOCTOR HIMSELF “A NUISANCE” AND LOW GRADE PAPILLARY GRADE 2 ON THE LINING. HE STILL WANTS TO DO THE BCG TREATMENTS, THAT IS WHY I SUGGESTED WAITING TILL SEPT TO START THEM.

    I DID ASK HIM LAST TIME WHAT WOULD HAPPEN IF NOT REMOVED, HE SAID I WOULD START BLEEDING. I HAVE NEVER HAD ANY BLOOD IN THE URINE AND EVEN TESTED THERE IS NO BLOOD IN THE URINE, I HAVE NO PAIN, BUT AS HE SAID THEY ARE A NUISANCE, I AM PRAYING AND THE 9 VITAMINS +++ THE VEGGIES AND FRESH FRUIT WILL STOP.

    YOUR THOUGHTS SHOULD THEY RE-PPEAR.

    THANK YOU.
    LINDA


    Linda
  • Elmo

    Member
    June 21, 2007 at 6:20 pm

    I tried to get disability or SSI but because I took Paid time off for the time I was out the refused to coever me. I think that if you are not working and are losing income then you may qualify. I belive the diagnosis and the ongoing treatment will qualify you but you alos need a lose of substancial income. Only my experience!

    Good luck!!!!

  • rosie

    Member
    June 20, 2007 at 9:28 pm

    Mystic Linda and Star,

    Many people have had recurrences after BCG. Failing BCG and having recurrence can be a real threat to people who have high grade – Grade 3 and or aggressive CIS – Carcinoma insitu. Many people with low grade papillary grade 1 and 2 have numerous recurrences of the same grade and it is referred to by many bladder cancer specialist urologist/oncologists as a “nuisance” type cancer. A nuisance because it is of little threat to invade or spread but does keep recurring. That is why some doctors who have done long term study on low grade papillary encourage watchful waiting or monitoring of the growth rather than immediate surgery or treatment. It seems your two urologists treat something seen immediately. Mine first one did also until I stopped agreeing to immediate surgery or treatment after reading the operating room report from my 2nd recurrence. It read “of note, when I touched the one red spot with an instrument it fell apart. The other spot was too small to send to pathology.” I then let the next recurrence grow and watch for nine months. The next one for one year. The present growth has been monitored and watched since February of 2006. It grows very slowly and the docs agree on the growth being a low grade papillary. The docs are from different practices but I have a picture to show them. Reading the European and Dr. Soloway study on papillary recurrences would be quite informative for you as it was to me. Hope this helps. It is possible your tumor could disappear Mystic Linda but not probable from just eating correctly. It that were the case, mine would have disappeared also. I copied and pasted the articles below from blcwebcafe website

    Update 2006: Two articles support ‘watchful waiting instead of automatic removal of low grade superficial bladder tumors:
    Expectant treatment of small, recurrent, low-grade, noninvasive tumors of the urinary bladder,..”As long as the tumors are low grade, the risk of invasion or metastasis is zero. Every small papillary tumor does not require removal when observed. Some of these tumors grow very slowly and, with proper reassurance, can be safely monitored. “Mark Soloway; Miami; Urologic Oncology: Seminars and Original Investigations Volume 24, Issue 1 , January-February 2006, Pages 58-61 PubMed

    Watchful Waiting Policy in Recurrent Ta G1 Bladder Tumors – Conclusions: Small, recurrent papillary bladder tumors after resection of low-grade Ta tumor(s) pose minimal risk for the patient. A watchful waiting policy— without resection of the tumor—may be considered in these patients Ofer N. Gofrit, et al.Israel; European Urology Volume 49, Issue 2 , February 2006, Pages 303-307 PubMed

    Rosie Ambs

  • mystic

    Member
    June 20, 2007 at 12:01 pm

    HI,

    I HAVE HAD 4 BLADDER SURGERIES IN A YEAR. EVERY 3 MONTHS WHEN I GO FOR THE SCOPE HE FINDS A LITTLE ONE AND I HAVE SURGERY. THE FIRST 3 TIMES I HAD A CATH. IN FOR 4 DAYS, AFTER I WAS DIAGONESED FOR THE 4TH TIME I DECIDED TO GET A SECOND OPINION AND THE NEW SURGEON DID SEE THE SAME THING, BUT WOW WHAT A DIFFERENCE, I WENT IN AS AN OUT PATIENT, NO CATH AT ALL (MIRACLE) CAME HOME AND NOT EVEN PAIN. HE WANTS TO START BCG TREATMENTS SINCE IT IS THE 4TH TIME IN A YEAR, BUT I AM WAITING TILL SEPT TO SEE WHAT THE NEW SCOPE SHOWS, PRAYING NOTHING.

    YOU HAS THE BCG TREATMENTS AND THEY KEEP RE-OCCURING???

    MYSTIC


    Linda

Sign In to reply.