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A Canadian checking in
Greetings fellow superficial survivors.
I am SO happy to have stumbled upon this website. I found it on a Facebook Group wall posting. And just in time I might add.:S
In less than a week I go for my 5th TUR. I have been so tense these last few weeks since my last cysto that my shoulder are like knots. I am dreading the surgery but more so I am dreading another round of BCG and then monthly maintenance.:(
After my 3rd TUR my Uro put me on a 5 week instillation of BCG. Less than 6 weeks later I was passing blood so went for a cysto the next day. Sure enough 3 more tumours. (
Ta Grade 1
6 TURBS
15 BCG
dx Jan 0720 Replies-
A Fellow Canuck here.
I have had 3 Operations and followed each 1 with 6 BCG treatments.
I am now on the 12 monthly BCG treatments.
I have had no tumor reocurrence in 12 months now, basically since I started the monthly treatments.
I am a believer in BCG.
I wish you all the best, stay positive, you will beat this disease.
Regards,
Jack
TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007
I will welcome you too. I am worried that you have had so many recurrences. I went through agony deciding what I would do with my cancer. My second opinion doctor at Sloan Kettering told me that if the BCG did not work and your tumors kept recurring, your best long term treatment was bladder removal. You can read what I went through and the great advice I got from this site by going to the invasive bladder cancer topic, go to page 3 and read “Another Dilemma” Balihigh. It maybe helpful to you. I liked my first doctor too but I found out that his pathologist had not staged me properly. It was important that I got another opinion-sometimes 3 or 4.
You have a good team behind you here. They certainly helped me.
Nancy
female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit
Thank you Ed. I am so so glad I found this site. I feel a lot better knowing other people with blc. Its great to be here and in just a day or two I havve learned SO MUCH. I told my husband I feel a lot more relaxed now that I am here.
I hope I can stay awake long enough for the chat tonight.;) I am an hour ahead of Eastern time but I will try. And if not this Sunday perhaps next. Either way, thanks for the warm welcome.:)
Ta Grade 1
6 TURBS
15 BCG
dx Jan 07
Lady Jane,
Welcome to the site – sorry that it couldn’t be under better circumstances! I don’t know if you have looked at the calendar, but each Sunday evening there is a “chat” where several of the users come together to share ideas, thoughts, what’s happened and what’s ahead. It’s a “real-time” feature which is good for asking questions and receiving several thoughts and opinions from the users attending.
If you are intested in attending, just remember that we’re back on Eastern Standard time.
Again, welcome and hopefully this site and its users will provide you with great information and support.
Ed K.
Edward J. Kinsella
American Bladder Cancer Society
Board of Directors – Treasurer/Secretary& Caregiver
Pat, I have pulled the path report I have here. Again its in french but it says “papillary carcinoma, low grade, multiple fragments, no evidence of bladder infiltration.”
With that info, I concluded Ta G1. Now maybe I am reading it wrong. When my next path report comes back after surgery Wednesday, I’ll go get ALL the reports and have a big discussion with him on what they say. To be honest I have never researched it enough to know what I have found just in the last day or so. And I have this support group to thank for that. I am going to be more proactive with my cancer.:)
Ta Grade 1
6 TURBS
15 BCG
dx Jan 07The size of the tumor has no significance as to the grade of the tumor..in order to get a correct pathology the surgeon has to remove the tumor and its margins and a portion of the muscle…..that determines stage and grade….and more often than not depending on where you are it is understaged.
I had one single teeny tiny tumor that looked pretty innocuous to the uro…turns out it wasn’t. It was growing out of CIS and was muscle invasive.
How did your pathology stage and grade your tumors?
Pat
Lady Jane, I stand corrrected! Good job researching. Kathy
After hours of online research I have found different reports as to the effectiveness of BCG with Ta tumours. I also translated my path report. One of the 3 tumours he removed from my initial TUR was the size of a quarter. And my 4th TUR had 5 tumours one the size of a nickel. One male friend I know with Ta blc, his tumours are the size of pinheads. With that being said, he received the same amount of BCG treatments as I, ( 2 rounds, apprx 6 months apart) and his last cysto was clear. Perhaps my uro is continuing BCG since I have such large tumours and a high reoccurance.
I found this info from Oncolink, Abramson Cancer Center UofPenn.
“Superficial Bladder Cancer
Superficial bladder cancer is that which has not invaded at all into the muscle. As noted above, the extent of disease is based mainly on the transurethral resection (TUR). Likewise, the primary treatment for superficial disease is the TUR. Since the cancer is superficial, all of the tumor may be able to be removed by the TUR. Although TUR is almost always used to treat superficial bladder cancers, bladder tumors will recur (grow back) in about 30% of cases after TUR. For this reason, other treatments may be used in addition to TUR. The most common treatment is a compound known as BCG. BCG is placed into the bladder several times over 1-2 months. BCG is often used in addition to TUR for patients with high grade tumors, large tumors, multiply recurrent superficial tumors, or tumors that invades into the lining of the bladder (T1 tumors). Though BCG is effective, it is not without side effects-causing bladder spasm and irritation, often with every instillation.”I will meet with my uro and get a better understanding of everything. All this online researching is making me dizzy.:blink:
Thanks to all for your responses and welcome mat.:)
Ta Grade 1
6 TURBS
15 BCG
dx Jan 07
It definitely would be a good idea to sit and discuss all of this with your uro and get straight exactly what your pathology is. Your description (little cabbages growing out of the lining) does sound like transitional cell papillary carcinoma…the description my uro used was “little mushrooms.” If this is the case, the good news is that it is probably not high grade. The bad news is that BCG treatment is not always effective. There is so much information on this web site for you to study before your uro discussion so that you can have your “ducks in a row” and have all your questions ready.
Good Luck!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Thank you all so much for your advice and warm welcome to the site.
I really must get out that pathology report and try to figure out what it says. It is in French because I go to a french hospital. And I don’t understand all the terms. After this next surgery I will get an appt to see my uro in his office and get all 4 back pathology reports that I haven’t seen and I’ll have him translate them for me. Then I’ll have a better understanding of whats going on. Maybe my grade is higher?
I thought any superficial tumours, growing out of the lining of the bladder, were Ta tumours. I read that here.
http://www.urologychannel.com/bladdercancer/staging.shtmlAt my last cysto he let me see what he was seeing and the tumours look like little pink cabbages. Papillary tumours.
I am confused :blink:
Ta Grade 1
6 TURBS
15 BCG
dx Jan 07
Welcome to the website and good luck with your treatment. I know what you mean about the one nurse who hurt you with the catheter. I had that happen to me once…ouch, ouch, ouch…I cried all the way home. I am very wary of seeing her again. If I were you, I wouldn’t hesitate to ask for another nurse! Please take care of yourself!
Hello Lady Jane and welcome. I’m so glad you found this wonderful site. Friendly people, all of whom are full of advice, including me!
It is weird how families react sometimes. My only, and wonderful Aunt died, then the next month my husband, and then I found out I had cancer so I had hoped the remaining family would jump in to fill in the gap. Mine didn’t do anything until I had the surgery to have my bladder removed and then my brother finally jumped in. I can’t believe that they are belittling it though. It’s easy to say bladder cancer isn’t a big deal if you don’t have it.
I went through one six week round of BCG. The 5th week I thought the nurse was trying to torture me getting the catheter in, so the 6th week I asked for the regular nurse. Seems that I was so swollen it took her forever to get it in. So in my case it was me and not the nurse but I can surely sympathize with you about the pain.
I haven’t heard of BCG being used on Ta tumors. I always miss something in a serious conversion with my Dr. so I always ask for a copy of every pathology report. Then I get on the internet to look up all of those unknown medical terms to find out what they mean!
Good luck with your TUR! Here the boot us right out of the hospital as soon as we are coherent and can walk.
Kathy
Dear Lady Jane,
My Stage and Grade is much worse than yours. If you are Ta, then this diagonisis is a good place to be with Bladder Cancer. However, with that being said, the comment about BCG not being as effective with Ta disease is definitely something that you need to do your own research on. Also, the fact that BCG doesn’t seem to be working for you, at least in my own mind, should be a major consideration for you. All of THAT being said, I am glad that you have faith in your Doctor as that is a very great advantage in fighting this disease. Still, one of our greatest pieces of advice (that we have historically been giving at this forum) is to ALWAYS get a second opinion with any bladder cancer diagnosis.
It is great that your husband is being as supportive as he is being for you.
Perhaps the rest of your family needs a little education about the disease!
There is a wide range of possiblilites as you travel along this path. Still, a lot of us with a worse pathology would like to have had a Ta report…When I was in my greatest funk after my initial diagnosis, I was moping around pretty awful and just saggy, draggy and wallowing in it. My brother called and my Mom told him that I was “depressed.” My brother said to Mom to “Tell her to suck it up, she’ll be allright.”
I can’t tell you why, but when that statement was repeated to me, the very clouds lifted from off of my head…:silly:
Yep, I know about the 100th Anniversary. I’ve been hearing about all the conferences at the U of Guelph and the festivities at Bala and Norval…
Take care,
Ro
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Hi Lady Jane,
I am also going to George Dumont Hospital. My urologist is Dr. Marc Savoie. I too feel I get good care and have faith in him. You can check http://www.ratemds.com to see information about your doctor, there is some good comments about your DR. I do know how you feel about people around not being able to relate to what we are going through. It can be hurtfull. Just pick yourself up and make through another second, minute,day…and keep breathing. your Canadian friend Sapie. By the way, Sapie is the name of dog (unfortunalty she passed away a few months ago).
Hello Lady Jane
Welcome to our family. As Rosemary stated, I am also sorry you keep having more tumors immediately after BCG. However, unfortunately, BCG is not as effective with Ta. I also like my Uro, but with his blessing I get second opinions, and even third opinions. My doctor is always open to other opinions and new research being done. I feel as if we are working on my Bladder Cancer together – that helps the “control freak” in my personality.:P
Good luck with your Turb and keep us updated on your progress.Nix
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07Sign In to reply.
