Looking for Direction on how to make the right treatment choices

Sorry to hear of your husband’s diagnosis. I’m halfway through my 6 BCG treatments with a similar diagnosis. I’m being treated at the cancer center at the University of Colorado hospital, about an hour away. I strongly suggest looking up an experienced urology oncologist at Hopkins for at least a second opinion. In this game there is no substitute for top notch care. I’ve heard of too many misdiagnoses, and you don’t want that. Regarding techs doing the BCG, yes it’s standard, and yes the techs at Hopkins would be well trained and experienced. As for side effects, they are nothing like those after TURBT, much more benign. Best of luck, and you’re not alone.

I understand you concern, but can vouch for a tech, or in my case a nurse, managing the BCG installation. I was successfully treated with about 12-15 BCG treatments. This was after my urologist removed tumors twice in surgery and several times in the office. I had non-invasive moderate level bladder cancer. I had the opportunity to seek care from Ohio State or Wright State University but chose to work with a very busy,more than competent, local urologist who answered my questions and honored my requests. I am 18 months cancer free. While we are all different and respond differently to treatments, if you haven't been able to develop a trusting relationship with a urologist, then you should move on. Had my treatments not been successful, I would have connected with an oncologist at a larger medical center. I pray you find successful treatment for your husband.

Hello @glinda47 and welcome to Mayo Connect BC support group. I'm sorry your husband is having to go through this.
I was also a cigarette smoker for over 30 years and quit 07-22-18. I was diagnosed with NMIBC 11-15-21. I took every one of my 30+ BCG treatments from a wonderful NP at my local Urologist office. She was so kind and I wouldn't have gone anywhere else. I also used a Urologist office in lieu of an oncologist at a big cancer hospital. I decided that IF my cancer returns I will go to MD Anderson for blue light therapy. It has been over 4.5 years and so far so good. No return. God bless you and your husband 🙏

I’m sorry to hear about the diagnosis of bladder cancer. I would definitely reach out to Hopkins for a second opinion and possible switching to treatment there. It is well worth the hour drive to have their cancer experience in being treated there.

@glinda47 it is difficult to make all the right decisions when faced with cancer and the need to get treatment started quickly. We all have experienced that. My husband had a bad experience with a local urologist missing his bladder cancer on cysto and we ended up at Mayo Clinic 10 hours away where I have had my cancer care for 14 years. A second opinion or referral can happen any time so take advantage of the proximity of Anderson and get a referral there for best treatment options. As for BCG, my husband did have that treatment locally at a cancer infusion center in a hospital. One of the nurses administered it each time and while their catheterization techniques varied a bit, it was not a bad experience for him. He found that the nurses using a lidocaine gel prior to catheterization made the procedure much smoother and asked for all to follow that protocol. Good luck and don't keep kicking yourself. Caregiving is tough and combining that with all the decision making and medical team choices makes it even tougher. Take care of you too.

Sorry for the diagnosis but there are very good treatments for this cancer and you should not be concerned about about a tech or nurse administering the treatment. In reality they are generally much better at it than the urologist would be. A second opinion is always good but not necessarily a must particularly if you are in a trusted local practice.

Putting in BCG is a procedure that Techs do day in day out. It is a very structured process. So there is no need to have a MD spend his time doing that. The MD's value is in risk assessment, fitness assessment and using his expertise in determining treatment path and when to refer to a specialist for treatment escalation when applicable.

My husband has been receiving treatment at Hopkins in Baltimore for the last two years after a the same diagnosis as your husband. We went there because we felt they are the best in the DC/MD/VA area and were also running a global trial on treatment for high grade non invasive Bladder cancer. The infusions (30 gemci/doce by the end of this summer) were all by the nurse practitioners and they were excellent. I should add you can schedule with the same one for every infusions if you prefer. He had cystoscopy every three months and will continue that for two years. We have been thinking of moving to Sibley in DC for the maintenance stage as it is also John’s Hopkins Hospital and much closer for us but hard to leave what has been working so well for him.

Once you are stable, local treatment is fine. Perhaps the main NCI can do videocalls. I often do videocalls with Mayo so that I can do it from the office or from home. It also helps the NCI by freeing up parking and clinic space.

I have been through it all.. all the treatments but to no avail. Last choice was to remove the bladder and prostate to Have a chance of living. My cancer was ready to break through the lining and my top SURGEON Dr Nam saved my life. L
Wearing a urine bag is not so bad. That was nearly 10 years ago and get tested every year..so far clear every year.
If you need any help with adjusting let me know.