Bladder Cancer Group: Introduce yourself and connect with others

Gods blessings be with you. Keep us posted after surgery.

Hi Colleen!
I don't want to jinx anything since my first 3 treatments went great, no side effects at all. Hopefully the coming 3 will be the same and something tells me they will.
Thanks for asking!

Hello, My name is Jason I was diagnosed with Non Muscle invasive bladder cancer 3 years ago. Since then I have undergone 4 Surgeries to remove the tumors and ongoing BCG treatments. It can get really old living your life by your every 3 month checkup.
My question to the group is that I am currently being seen by a University Hospital, but due to other life issues will most likely be moving to Florida this fall within 2 hours of the Jacksonville Mayo clinic. I am just curious what it is like to transfer care and looking for any pointers etc. Moving is stressful enough, but then adding in transferring your Cancer care adds a whole new dimension.
Thank you,
Jason

@fmfran, when do you start BCG therapy?

@buena, I believe you started BCG yesterday if I recall. I hope the first infusion went as well as can be expected. Was there anything that you wished you had known or will feel better prepared for next treatment?

Hello Jason @jfire. My husband and I have not switched doctors and locations for medical care, but we both have had good experiences with our local oncologists working with our Mayo staff where our care originated. Because Mayo is a 10 hour drive for us, we both have had infusions, radiation and even emergency care with direct contact between Mayo doctors and local doctors. Once your information is on a portal and all doctors can have access, it is easier for them. You are doing the reverse with switching your care to Mayo. I would plan it ahead asking your local urologist to start a referral to Mayo Urology. If a linking portal is not available then records can be sent, faxed, and emailed to provide a smooth transition. I would start early to make sure you are accepted as a patient then schedule your first visit for after the move. I hope all goes smoothly for you. Faith in your cancer team is so important.

Colleen
I start my BCG next Wednesday for my six week infusion. Thanks for remembering!! I'm expecting flu symptoms, maybe? Have you done this? I met with Dr. Lyons who was amazing. He was very happy with the care I'm receiving from my local
doctor. I pray every day and night for healing.

@fmfran, I haven't done BCG. You might want to join one of the BCG-related discussions here:
- My journey with Bacillus Calmette-Guerin (BCG) treatment https://connect.mayoclinic.org/discussion/first-bcg-treatment/

See all: https://connect.mayoclinic.org/group/bladder-cancer/?search=BCG#discussion-listview

Thanks for asking. Anything I wish I had known? Sure. I imagined my bladder would be filled with BCG and wondered how I could deal with that discomfort for an hour. When I arrived I discovered only a small amount of BCG is inserted. Didn't even feel it. Also wondered how I could shift around on my back, then sides, then stomach for an hour. Wasn't necessary. I was on my back with a pillow, a warm blanket and a tv remote for the hour. No need to shift around. I wondered about side effects and had none, except for a small amount of blood in my urine after treatment. The burning sensation associated with urination was gone in two days. Now I'm wondering how long it's necessary to flush twice, wash hands carefully and take special precautions with Depends disposal. I suspect it's unnecessary after two days inasmuch as the BCG must be well flushed from my bladder by now. I'm also wondering how often a single, six- week course of BCG treatments is all that's needed. I'm scheduled for another cystoscopy in June, but would be interested in knowing more about my prospects for recovery. Bottom line: I'm grateful to all the fine, friendly folks at Mayo who diagnose and treat human diseases so compassionately and skillfully. And I'm especially grateful to God for healing.