@dallio No your wait till March 23rd is ok..After tumor removal they like to wait for the bladder to heal. BCG is the live Tuberculosis vaccine bacteria…You would not want to get that in your blood system….BCG gives off an immune response so your own body will fight the cancer…Great stuff…It took several rounds of 6 week treatments as cancer came back…Stanford (second opinion) said that sometimes immunotherapy BCG possibly may not work the first time, but to do a second round…Now I have been cancer free for 1 1/2 years!! Always best to get a second opinion from a research hospital in the area of cancer you have…The University Hospital wanted to go the Chemo route….I am glade I got the second opinion! It worked!
@stevedoc thanks. I'm very far from a big hospital. It's 3 hours to the closest one. Were you able to drive the day of your treatment? I don't drive on the highway so my husband would have to do all the driving. He is the one with bladder cancer.
@stevedoc thanks. I'm very far from a big hospital. It's 3 hours to the closest one. Were you able to drive the day of your treatment? I don't drive on the highway so my husband would have to do all the driving. He is the one with bladder cancer.
@jlopez7868 Update: Follow-up was last week and about what I expected. Cystoscopy showed bladder is looking healthier overall after six weeks of BCG. There was one area of concern so they did a TURBT and biopsy this week. Cancer cells were identified as present (which was not unexpected). But no indication that anything has advanced to the muscle, which is great.
I’ll be doing another six weeks of BCG starting next month once I’m healed up from the procedure.
So overall just happy to be making steady progress forward!
I have completed my 4th & 5th BCG treatment. Following the 4th, I had bleeding and some pain in my right side. Then, this past Thursday after my 5th - I had some bleeding and the incontinence was off the charts; since then, no notification beforehand and several times a day the huge bladder-protection pad was soaked to the max. I have had to make many underwear changes and am filled with anxiety not knowing just when my bladder will erupt (shall we say).
I feel emotionally reduced. Of course no cancer is a good cancer but having bladder cancer seems endless to me from all I have read from members. We know these tumors are relentless and while BCG may work for 60% of those having it instilled - failure for the 40% means either continuance with various other treatments or RC.
When I had endometrial cancer 20 years ago and subsequent radical hysterectomy, oopherectomy and radiation - it was simple by comparison - "one and done" as I put it recently to my urologist.
Bladder cancer is a tremendous challenge and while we focus on modalities of treatment and physical side effects, the emotional and psychological affects are enormous. I am 80 and perhaps those younger are better equipped somehow to handle this although I truly feel for them.
I wish there was an easier path toward success in defeating bladder cancer. I'm sure we all have our down days but we manage to pick ourselves up and forge ahead.
I apologize for this lament. Wishing members what is most important - continuance of hope and inner strength.
I am thankful I found this support group; the collective understanding, helpful and necessary information and support is invaluable.
I have completed my 4th & 5th BCG treatment. Following the 4th, I had bleeding and some pain in my right side. Then, this past Thursday after my 5th - I had some bleeding and the incontinence was off the charts; since then, no notification beforehand and several times a day the huge bladder-protection pad was soaked to the max. I have had to make many underwear changes and am filled with anxiety not knowing just when my bladder will erupt (shall we say).
I feel emotionally reduced. Of course no cancer is a good cancer but having bladder cancer seems endless to me from all I have read from members. We know these tumors are relentless and while BCG may work for 60% of those having it instilled - failure for the 40% means either continuance with various other treatments or RC.
When I had endometrial cancer 20 years ago and subsequent radical hysterectomy, oopherectomy and radiation - it was simple by comparison - "one and done" as I put it recently to my urologist.
Bladder cancer is a tremendous challenge and while we focus on modalities of treatment and physical side effects, the emotional and psychological affects are enormous. I am 80 and perhaps those younger are better equipped somehow to handle this although I truly feel for them.
I wish there was an easier path toward success in defeating bladder cancer. I'm sure we all have our down days but we manage to pick ourselves up and forge ahead.
I apologize for this lament. Wishing members what is most important - continuance of hope and inner strength.
I am thankful I found this support group; the collective understanding, helpful and necessary information and support is invaluable.
@deidre77 so sorry that you are going through this. BCG can be a real challenge but the evidence for it impacting reoccurrence is pretty convincing. I had reactive arthritis after my 12th treatment and had to stop. Fortunately I have had clear cystoscopy for the last year so I’m hopeful that I’ll stay NED. There are alternative treatments to BCG. Have you discussed these with ur Doc?
@deidre77 so sorry that you are going through this. BCG can be a real challenge but the evidence for it impacting reoccurrence is pretty convincing. I had reactive arthritis after my 12th treatment and had to stop. Fortunately I have had clear cystoscopy for the last year so I’m hopeful that I’ll stay NED. There are alternative treatments to BCG. Have you discussed these with ur Doc?
I have completed my 4th & 5th BCG treatment. Following the 4th, I had bleeding and some pain in my right side. Then, this past Thursday after my 5th - I had some bleeding and the incontinence was off the charts; since then, no notification beforehand and several times a day the huge bladder-protection pad was soaked to the max. I have had to make many underwear changes and am filled with anxiety not knowing just when my bladder will erupt (shall we say).
I feel emotionally reduced. Of course no cancer is a good cancer but having bladder cancer seems endless to me from all I have read from members. We know these tumors are relentless and while BCG may work for 60% of those having it instilled - failure for the 40% means either continuance with various other treatments or RC.
When I had endometrial cancer 20 years ago and subsequent radical hysterectomy, oopherectomy and radiation - it was simple by comparison - "one and done" as I put it recently to my urologist.
Bladder cancer is a tremendous challenge and while we focus on modalities of treatment and physical side effects, the emotional and psychological affects are enormous. I am 80 and perhaps those younger are better equipped somehow to handle this although I truly feel for them.
I wish there was an easier path toward success in defeating bladder cancer. I'm sure we all have our down days but we manage to pick ourselves up and forge ahead.
I apologize for this lament. Wishing members what is most important - continuance of hope and inner strength.
I am thankful I found this support group; the collective understanding, helpful and necessary information and support is invaluable.
@deidre77 My incontinence has been off the wall since after my first TURBT surgery, had my second TURBT 1 week ago. Whenever I stand from a sitting position it flows out into pad. I will find out Friday what treatments are in store. I have non invasive high grade bc. I hope I will be able to handle BCG as well as you are.
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@stevedoc thanks. I'm very far from a big hospital. It's 3 hours to the closest one. Were you able to drive the day of your treatment? I don't drive on the highway so my husband would have to do all the driving. He is the one with bladder cancer.
@dallio I have a question. How difficult is it to get the pathology slides. I might have to get them and take to a bigger hospital. Thank you
@jlopez7868 Update: Follow-up was last week and about what I expected. Cystoscopy showed bladder is looking healthier overall after six weeks of BCG. There was one area of concern so they did a TURBT and biopsy this week. Cancer cells were identified as present (which was not unexpected). But no indication that anything has advanced to the muscle, which is great.
I’ll be doing another six weeks of BCG starting next month once I’m healed up from the procedure.
So overall just happy to be making steady progress forward!
Well that’s good. Mine returned after BCG too. Another scraping in another week. Be positive.
I have completed my 4th & 5th BCG treatment. Following the 4th, I had bleeding and some pain in my right side. Then, this past Thursday after my 5th - I had some bleeding and the incontinence was off the charts; since then, no notification beforehand and several times a day the huge bladder-protection pad was soaked to the max. I have had to make many underwear changes and am filled with anxiety not knowing just when my bladder will erupt (shall we say).
I feel emotionally reduced. Of course no cancer is a good cancer but having bladder cancer seems endless to me from all I have read from members. We know these tumors are relentless and while BCG may work for 60% of those having it instilled - failure for the 40% means either continuance with various other treatments or RC.
When I had endometrial cancer 20 years ago and subsequent radical hysterectomy, oopherectomy and radiation - it was simple by comparison - "one and done" as I put it recently to my urologist.
Bladder cancer is a tremendous challenge and while we focus on modalities of treatment and physical side effects, the emotional and psychological affects are enormous. I am 80 and perhaps those younger are better equipped somehow to handle this although I truly feel for them.
I wish there was an easier path toward success in defeating bladder cancer. I'm sure we all have our down days but we manage to pick ourselves up and forge ahead.
I apologize for this lament. Wishing members what is most important - continuance of hope and inner strength.
I am thankful I found this support group; the collective understanding, helpful and necessary information and support is invaluable.
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1 ReactionWell stated. Hang in there. New clinical studies may have a benefit not yet known. Try and find positive things in your day and lift your spirits.
@deidre77 so sorry that you are going through this. BCG can be a real challenge but the evidence for it impacting reoccurrence is pretty convincing. I had reactive arthritis after my 12th treatment and had to stop. Fortunately I have had clear cystoscopy for the last year so I’m hopeful that I’ll stay NED. There are alternative treatments to BCG. Have you discussed these with ur Doc?
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3 Reactions@quahog
Thank you for the response.
You are a champ even having been able to endure 12 treatments before it had to be discontinued.
Happy news, of course, knowing that for the past year you are NED. May your success continue.
I will continue on with the treatments, grin and bear it as we all do but still speak to my doctor.
Best wishes.
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1 ReactionI have had 4 episodes of
Hemorrhagic cystitis. Why me?
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1 Reaction@deidre77 My incontinence has been off the wall since after my first TURBT surgery, had my second TURBT 1 week ago. Whenever I stand from a sitting position it flows out into pad. I will find out Friday what treatments are in store. I have non invasive high grade bc. I hope I will be able to handle BCG as well as you are.