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Recurring T1 High Grade; 6 yrs later

5 years 7 months ago #45941 by Flamenco.
Hi, I was diagnosed T1G3 late 2006, had a recurrance of CIS in 2012, followed by BCG. I had much stronger side effects on the second round of treatment, but so far they seem to have held things at bay. My next check hopefully is in March so will post results then.I find it is a good idea to write the questions I have and take my crib sheet with me when I see the urologist! (Not that my memory is bad - just my brain doesn·t function well on appointment days - thats my excuse haha!!)
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5 years 7 months ago #45939 by GKLINE
Gina
"There is No Denial in Battling Cancer!"
There is No Denial.

For your next visit...... Bring that notebook of questions..... And a Friend.

When the Dr gives out a diagnosis, we go into a form of shock. And our mind plays tricks on us and we zone out for a while. That is why you need a friend with a notebook. So as you listen emotionally, your friend will be able to ask your questions and take down the Dr orders.

Please take charge of yourself in all of this. Be informed. Ask Questions(Don't worry, the Dr will happily answer questions. I found out they like it) and be prepared to take charge of yourself.

Sorry you had to come back to this site. But welcome.

Sincerely
George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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5 years 7 months ago #45938 by sara.anne
Gina, so glad you are back and fighting!! No, I have not had a recurrence...but
I am about six weeks away from my now-yearly checkup, so the nerves are starting to pop up!

And Gary is correct...we do NOT accept denial. Anyone here is a FIGHTER. As I
said before, you are the one in charge, SO BE IN CHARGE!!

SA

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

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5 years 7 months ago - 5 years 7 months ago #45936 by dieseldoc
Gina. Denial is not in our vocabulary! And you are asking questions and getting help so I don't think you are denying anything. You will get your tail end kicked around here for denial. LOL!!!!


Don't make Sara anne get her butt kicking boots on!!!!!!!!

T1,NO,MO battling bladder cancer since 2005

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5 years 7 months ago #45934 by gina
Sara Anne! You probably do not remember me, but I do YOU! My last diagnosis was 6 years ago and we met at that time. I was in remission and life went on for me, I ceased coming to the site. This time my tumor was T1 instead of CIS...I continue to choose denial as opposed to facing it head on...I can only say this happens because I really know very little about what I am currently facing. Did you have a reoccurance of your cancer too? As I remember, you speak with confidence and your wisdom is clear...must have spent many hours reading and researching over the years! My mother recently lost her battle with liver cancer which moved to her lung. I am glad she is not here to see me face another round with my bladder cancer. It is so nice to see a 'familiar' face in the site. Thank you again for your kind words. They helped more than you know!

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5 years 7 months ago #45932 by sara.anne
Gina, you sound like a fighter!! That is great. When you talk with your doctor, be polite but insist that, unlike some other patients, you want to know everything that is going on! Believe it or not, there are a lot of patients who just want to put it all in the doctor's hands and not think about it. I have even known doctors who, when they become patients, think this way! However, you are the director of this project, and it is your right to know everything you want to know. If this doctor, after you have discussed this with him, doesn't agree, you can ask to be transferred to another urologist at U. of Michigan. Not all personalities mesh, and they are aware of this.

You are feeling more from the BCG treatments this time because your body "remembers" that it has been exposed before. AND this tells you that they are working. BCG elicits an immune response in the bladder which acts to fight the tumor cells. This does take a while to develop. The blood clots are a normal reaction as the bladder is sloughing off a bit of the lining....and maybe some cancer cells also. As Gary mentioned, if the side effects become too uncomfortable your urologist can safely reduce the dose. It will still be effective, but may not cause as many side effects.

You want to stick with this, since G3 IS high grade (meaning it can be aggressive and return if you don't get rid of it) and is nothing to fool with. Hopefully the BCG will help with this.

There is a LOT about BCG on this web site. There is quite a discussion under the first Thread in this topic....right above your postings. Another good source of basic information and background comes from Dr. Lamm's site...he is one of the experts in BCG treatment

http://www.bcgoncology.com/treatment/bcg.html

Keep up with the treatments and good luck to you!!

Sara Anne

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