Sorry to take a completely different track here but have you asked the doctor about a repeat TURB BEFORE starting the BCG.
The reason for the question is that bladder cancer is very often understaged at the first TURB. So much so that standard protocol is to do a repeat TURB 4-8 weeks after the first.
You may want to ask the urologist about that prior to starting BCG treatment.
thanks so much, very interesting tips, I think we can put them to good use, too !!
my mom does better when distracted, so your reply gave me the idea of having her move about the hotel room and so on, rather than simply lying down and rotating, and of course the privacy and closeness to the bathroom will take away any apprehensiveness and worry
also think that's a great idea to begin drinking a lot of water in the half hour before the hold time is up - makes good sense but would never have thought of it on my own
as I mentioned to herb, it turns out my mom's renal function will only support the bcg, and only for the six weeks, so we know that this is our best/only shot and will do all we can to get the most out of it
thanks again so much for your response, all this firsthand information is a godsend, and has made us here both feel much more confident about the days and weeks ahead,
7 years 9 months ago - 7 years 9 months ago#37506by Herb
Hi Kitts will be thinking and praying for your Mom this coming week when she starts BCG. We have lady friend who had BGC's and never had a re-occurence of her cancer and this will be my hope for your Mom. Take Care, Herb†
Age 72 had radical 9/11/10 have conduit everything is fine, grateful to be a cancer survivor. Lost Dad and Brother to Cancer both in their 50's.
7 years 9 months ago - 7 years 9 months ago#37505by kitts
thanks so much for your reply, very helpful
our situation evolved today a bit, in that my mom's renal function really cannot support the ct scan, nor would it tolerate any chemo, so the new plan is to skip the scan and do the six weeks of bcg, a repeat biopsy, and end the therapy there
in light of this, I do think having the bcg sessions in the most comfortable/supportive environment is the way to go, so unless the hospital offers something better in terms of clinical setting than simply the dr's office (it's in the middle of a significant and slow moving remodel, not the best situation), it looks as if we will go with the hotel room idea
being able to fully recline and/or move about, close to a bathroom, with some guarantee of privacy, will be reassuring "just in case"
we had some good conversations with the urologist and primary today, everyone is on the same page, and, altho we will probably do a consult with a medical oncologist, as well, we feel more confident than ever that we are going in the right direction here
thanks again, so much, for your response, it's really reassuring and helpful to hear from people who have actually undergone the therapy themselves,
all very best wishes for your continued health,
Last edit: 7 years 9 months ago by kitts. Reason: delete duplicate words
I'm 68, and have been having BCG treatments for 2 years (will be done at the end of this year). I do think it might be better for your mother not to ride in the car for that hour; even if she has no problem "holding," I think just the peace of mind of staying in a hotel, knowing that she is near a bathroom, may be helpful.
One thing to be aware of is that they can reduce the concentration of BCG down to 50%, 10%, and possibly lower if there is a severe reaction at any point in the treatment cycles. I've been on 50% for the last several maintenance cycles, and symptoms are much more manageable; when I did have symptoms (primarily fever and spasms after I'd been having the BCG for a while), they were not as bad as some people have experienced.
My doctor never said it was necessary to do all the rotating that I've read about being recommended. I think as the bladder fills with urine over the course of the several hours of "holding" the BCG, all parts of it get "bathed." I do try to alternate lying down, sitting, walking around, etc., but have never bothered with the rotating. Sometimes I run errands right after the BCG, as a distraction and to keep myself occupied while waiting, but usually try to be home for the last hour or so. To reduce symptoms, a helpful hint the nurse who administers the BCG told me is to start drinking a lot of water the half hour before the hold time is up, and to keep drinking a lot of water for at least several hours. That helps get the BCG (and its potential side effects) flushed out as quickly as possible.
Best of luck to your mother, and to you as caregiver.
Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.