T1 high grade

2 years 5 months ago #56403 by Dec4141
T1 high grade was created by Dec4141
Greetings. I'm new to this site. I was diagnosed with a mass in my bladder 3 months ago. They said it was cancer and needed to be removed. After removal I would need a single chemo treatment directly to the bladder. Well after they analyze the tumor they said it was a T1 high grade cancer and my treatment plan needed to be changed. The doctor scheduled a second surgery in Feb to clean up and residual cancer and do a biopsy. After the second surgery I will recieve 6 weeks to chemo. One treatment a week for 6 weeks. Then monitoring.

I have to say I like having someplace just to write this down.

Back to topic. After the first surgery my urination has changed I'm up almost every hour or hour and a half at night to urinate and I have to push hard to get the started. But when I dont want to pee a single caught with cause a little release in my underpants

My biggest problem is the other side. I've been regular my entire life but for the last 2 months I cant move my bowels without taking something. I think I've had hemorrhoids the entire time snd cant sit up comfortably. But this seems to finally be getting better. But any recommend as tons to fix this would be appreciated

On another note my father who was 82 was diagnosed with bladder cancer and passed away after 2 years. He was stubborn and didnt follow the recommendation by his doctor. They wanted to remove his bladder and add an external bag and this seemed to be unacceptable to him.

Im not as educated as most people on this site and some of the terminology is above me. I see a lot of comments around tubts treatment. What is this treatment.

Is there anyone else who has had a similar diagnosis who could share their experience and help me to what I can expect?

If nothing else thanks for letting me vent

The following user(s) said Thank You: Scared, Al

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2 years 5 months ago #56407 by EdFlaherty
Replied by EdFlaherty on topic T1 high grade
I also have T1hg ... and I understand your confusion. There is a lot of bladder cancer information available, but you can only absorbed so much at a time. Like any subject, begin slow and just learn the basics as they apply to you.

My first level of understanding was that bladder cancer is a life long condition and that bladder cancer has a basic treatment protical. If treatment fails, the normal procedure is to remove the bladder.

I don't like having bladder cancer, but it is a survivable cancer. I don't like the treatments, but you can get "used" to them - just take it a little at a time. What once scared me to death is now not too bad.

It took me some time to understand the stages, treatment options, percentages, etc. I learned a little at a time and I now feel "comfortable" with my knowledge level, but it took 5 years. I also feel less fear now that I've become somewhat "desensitized" by experience and knowledge.

My doctor answers questions for me, I try to limit myself to 2 or 3 questions at a time. After 5 years, I can now have a detailed discussion with him. I try to think about the difference in my understanding of any subject after 5 years; you wouldn't expect a first grader and 5th grader to have the same level of understanding ... we learn a little bit at a time. The most important thing to me is having a positive attitude. Good luck!
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2 years 5 months ago #56408 by sara.anne
Replied by sara.anne on topic T1 high grade
Welcome to our Forum, Don!

First, remember that we didn't know the terminology when we were diagnosed either! I used to joke that I didn't even know I had a bladder :laugh: You will soon be an expert.

Your diagnosis is a hopeful one. Mine was similar and almost 11 years later here I am...still doing great.

Let me try to decipher what has been going on with you. The tumor removal that you had was a TURB (transurethral resection of the bladder.) Its purpose was two-fold, first to remove as much of the tumor(s) as the urologist could and second to have bladder tissue from several sites to send to the pathology lab. The pathologist examines the tissue samples microscopically to determine a. IF the sample is cancer; b. What grade it is; and c. If is is still confined to the bladder or if it has spread into the muscle. ONLY AFTER THE PATH REPORT IS FINISHED DOES THE UROLOGIST KNOW FOR SURE WHAT THE DIAGNOSIS IS. That is when your doctor knew that it was high grade...he couldn't determine this when he did the initial exam (BTW, that exam is "cystoscopy.")
The "chemo" that you received after your TURB was probably a single dose of mitomycin, which is used to avoid
any of the tumor cells from escaping and causing more problems.

You must have a very good urologist, since he scheduled a second TURB now that he knew that it was high grade to be sure of the diagnosis and to remove any other visible tumors. This is something that should be done if there are any surprises found the first time, and not enough doctors do this.

Now for the treatments you will be having. I am pretty sure that you will be treated with BCG (another term you get to learn!!) BCG is a modified live bacteria preparation related to the tuberculosis bacterium. It is "immunotherapy" or "intravesical" therapy, NOT traditional chemo. It will be placed in your bladder once a week and you will try to keep it there for about 4 hours. Its purpose is to make the bladder a bit "angry" by stirring up the immune system and causing it to reject any cancer cells. This is the treatment of choice for high grade, non-invasive bladder cancer and is a real life saver. The treatments aren't pleasant, but are NOTHING compared to the systemic chemo that many cancer patients undergo.

The issues with urination that you describe following your TURB are probably because the bladder was really irritated when the urologist cut the tumor areas out. As you found out, it does heal after a bit. As for the constipation issues, one reason for them could be the general anesthetic. This can cause such a problem in some patients. This is something that you should let your doctor know right away because he can offer suggestions as to the best way to handle this.

Hope this brief explanation helps a bit. You will have a steep learning curve (we all did) but you are on the right track and will do fine. Please feel free to ask any questions you think we can help with!!!

Sara Anne

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

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2 years 5 months ago #56410 by Dec4141
Replied by Dec4141 on topic T1 high grade
Hi Sara

Thank you very much. Your response was very encouraging and your success with a similar cancer gives me a lot of hope.


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2 years 5 months ago #56411 by Dec4141
Replied by Dec4141 on topic T1 high grade
Hi Ed

Thank you for you response. I think your correct. It's going to take time but my plan is to learn as much as I can

Tanks again

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