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why treatment doesn't work?

12 years 10 months ago #6570 by Rosie
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

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12 years 10 months ago #6568 by Patricia
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

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12 years 10 months ago #6527 by altie
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

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12 years 11 months ago #6305 by Zachary

Rosie,

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


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

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12 years 11 months ago #6301 by wendy
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

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12 years 11 months ago #6300 by Mystic
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

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