first time posting new to site

[stumblegirl14]

Good luck on Thursday & so glad to hear you’re getting a 2nd opinion. Keep us posted when you can.
Flo

[KIOWA]

glad you are getting another opinion in Toronto. That will help a great deal especially with regard to setting up a treatment plan. Good luck to you.

Kiowa

[babyd]

Thank you to everyone. We travelled to Toronto to Toronto general and got a second opinion. The specialist was great and explained everything in detail to us. We sure learned alot from him. He is willing to take my husband. So yesterday he performed his own scope and tests. My husband has more tumors since July so we are travelling there for him to remove them. He will then begin BCG treatments from there. It was nice to see a doctor who explained everything and answered all of our questions. He feels my husband definately needs the treatments based on his prior pathology results. He was even nice enough to see if he could arrange treatments closer to our home so we don’t have to travel. It really isn’t that far but factor in good old traffic and it sure adds to your time. I thank God for this site and the people that post on it. Without it I am afraid we would of just kept on going the way it was going not very informed.
And just to share we are going to be first time grandparents which is exciting. I can’t wait for that. I will keep you up to date. Louise

[Greg]

Congratulations on being first time grandparents (in the near future I presume). Sorry your husband needs another TURBT but getting those tumours out and BCG in is a good thing (relatively). With you at his side (well, not during the procedures, but after) he’s a fortunate man. Support is so vital. All the best. Keep us in the loop as we’re interested, concerned and just a little bit crazy (actually only KIOWA is crazy, but he’s from Texas – ’nuff said).
Greg

[marysue]

Best of luck for your hubby’s TURBT and BCG. That was the route I had to do. It has its challenges but is doable in the end. The threat of having my bladder removed was what gave me the courage and strength to pull myself up by my bootstraps and power through the BCG treatments. I’m glad that you guys found a doctor that will answer your questions. My first uro wasn’t good at that either. I eventually switched and am much happier. When questions are answered properly that helps build trust between you and the doctor. When my first uro wouldn’t answer questions I felt that he was holding something back. He also got defensive like I was questioning his professional opinion. I realized afterwards that this doc has an ego issue. In my case it was subtly put to me “I’m the doctor and the man, you’re the woman. Be quiet and just do what I say” Being a woman in 21st century Canada that attitude doesn’t sit with me very well so I was real happy to be able to ask my new doc questions.

[babyd]

It has a been a bit for me checking in. My husband had another tumor removed but this time on the eurethra. The surgeon took extra as he was unsure if it has spread up it. it turns out the pathology showed there was cancer in there as well. He is doing another test to see how far up it has travelled if at all and then we will know our next step. If all goes well he will begin BCG treatments immediately. If not it means more surgery. Our new surgeon is great and we have great confidence in him. He always goes with the side of caution. So as soon as he has his test for that we will know how he will proceed. Hope all is well with everyone. Will keep you posted. Louise

[stumblegirl14]

Thanks for the update as I know when you’re the caregiver it’s not easy. So happy to hear you both are much more comfortable with your new uro as that can be a great confidence builder. Also want to congratulate you & hubby on being future grandparents. I am happily the grandma of 3 terrific grandchildren & recommend it highly. Not nearly the stress involved when raising your own just the fun & glory. I hope all goes well for you both in the coming months & bcg is handled well. Take care as my prayers go out to you both.
Flo

[babyd]

It has been a bit since I have posted. Hope all is well with everyone. My husband had his tests and the cancer has not spread. That was good news to hear. He begins BCG treatments in January. He will have 6 and then a scope after treatments. We were relieved to hear it had not spread to the kidney. I would like to thank everyone on this site as I fear had I not stumbled on this site I am not sure where his treatment would be. Now being at a major center the care and knowledge makes us feel more secure in his care. So thank you again to all. I hope everyone has a Merry Christmas and Best in the New Year. We will be welcoming our new addition in February which is quite exciting for us. A first grandchild welcomes new beginnings. Louise

[Greg]

Great news, Louise. Merry Christmas, indeed!
If your husband has any concerns going forward, let us know. The folks on this site are very knowledgeable about BCG treatments and are delighted to help, as needed. Here’s to an excellent 2013 for you and yours.
Greg

[babyd]

Hello everyone

Hope everyone had a good holiday. I have a question regarding BCG treatments with my husband. He is beginning them next week. He is scheduled for one a week for 6 weeks. When we met with his surgeon he said he could drive himself to them and could go to work after them. Is this reasonable to think he could? Also we forgot to ask does he stay for the two hours or does he leave after he is injected. We never thought to ask that. My concern was he has an hour and half drive and I am concerned about him driving. The surgeon said it shouldn’t be a concern. Any thoughts or advice would be helpful. Thank You Louise

[Greg]

Louise:
I would suggest for most there is no problem driving to and from as far as the driving part is concerned. I always took the day off when I had my treatments, but went in the next day. Some people find they are feeling a little “flu-like” by the evening and next day so he’ll probably have to play it a bit by ear. As the treatments progress sometimes the symptoms intensify a little and can be somewhat uncomfortable. But the doc can prescribe something for that discomfort if it is bothersome. i never had the problem myself in 34 treatments, but others do. Again, it seems to vary from one person to the next.
The driving for one and a half hours causes me pause. Depending on whether his doc wants him to hold the BCG in his bladder for one hour or two, he may find it hard to do so while driving. And it is quite a caustic substance that needs to be handled carefully so accidents (not car accidents but continence accidents) are not a good thing. I guess he’s best to listen to his doc and play it by ear as he goes along and see how he makes out on the first one. Having a plan B might be good in case he finds it hard to hold – sometimes it is very difficult if not impossible, particularly as the treatments go along.
I guess you know that it is instilled by catheter as opposed to injected by needle. So much for modesty!
All the best,
Greg

[Greg]

In fact, all the best!
Greg

[Jack Moon]

Hi Louise

My first BCG treatment they made me stay at the hospital for 1 hour doing the roll overs, the I went home about a 30 minute drive. I had no problem holding the BCG for the 2 hours. The following treatments I was sent home right after the treatment, did the roll overs at home and voided after holding the BCG for 2 hours.
The nursing staff at the hospital should give your husband instructions regarding the the time to hold the BCG, how much water to drink for the next 6 hours after the 1st void, the bleach and bathroom procedure.
After the treatment your husband should go home, not to work.
We do have a member who did go to work after the treatments, did not drink much water. The member had major complications because of doing this.
I would recommend that someone accompany your husband to the 1st treatment.
All the best,
Jack

[marysue]

That surgeon needs a wake up call!! He should do BCG so he knows what it is like! Personally, I have real issues with long distance driving while BCG is in you. Firstly, you should be lying down and doing roll overs every 15 mins to get the maximum effect. If he spends 1 1/2 hours driving the drug is just sitting at the bottom of his bladder for most of the time and not getting to all the surface of the bladder. Secondly, if he was in a car accident and had the BCG in him and was unconscious and had noone with him then emergency personnel wouldn’t know and that BCG might be left in for hours not to mention if he voided it they may be unintentionally exposed to the bacterium because they would know to take precautions. I have a long drive to the hospital (almost 1 hour) where I had my treatments and I fought with hospital management to be allowed to stay for the 2 hours. I also did this because my treatments were in the winter and Calgary is notorious for flash freezes and icy roads. Our weather can change faster than most people change their shirt. I drove myself there and then my hubby picked me up. YOu or another person should go with him until he knows what side effects he will experience. Some folks have little effects but I was one of those that experienced heavy duty side effects almost right away. By the time I left the hospital I was too “drugged” and woosy to drive safely. Also if he can’t hold the drug he will need to stop and void out, difficult to do while driving especially in the cold. I also recommend taking the day of treatment off so he can void safely at home and drink tons of water. He should be prepared to take the next day off too as he may feel crappy. When I was working during the last round I booked the day of treatment off and the following two days. That allowed me crucial time to rest. I slept most of the next day. some people, me included found that the side effects increase as treatments progress. Your hubby won’t know this until he gets into it. As mentioned we are all different. As Jack says drinking tons of water after the treatment for about 6 hours is crucial to avaoiding complications. He needs to drink lots of water to flush the remaining drug out of his system. Don’t hesitate to ask questions as lots of us have done BCG and know the routine. Take care and best of luck.

[babyd]

Thank you everyone for the information. I am glad that there are people out there to help with questions. It is a long drive to be doing alone for sure. We are learning something everyday it seems. I will show him the information so he knows what to expect. Thank you again without this site I would be lost. You are all great people. Louise

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