Sorry this has taken so long to get back to you but I had to think about what I wanted to say. I read this last night before going to bed and woke up at two and thought about it what would I tell you if you were my family? Sara Anne is here with me meeting on ABLCS business and as I walked in this morning your post was the first thing we talked about. You have read her reply and I agree with it completely, there are no right or wrong answers here just hard choices. I wish we had the exact right thing to do but we don't all we can offer is our support. We are here if you need to bounce things off of us or just vent, you are in our thoughts.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
This is a dilemma and there really isn't any good answer. It is a highly personal decision for you and your family.
Unfortunately, while BCG is a very do-able procedure for most patients, it does require not only holding it in for an hour or two, but scrupulous hygiene for a number of hours following. BCG is a weakened tuberculosis bacteria and can be contagious, although rarely, under certain conditions. Another option might be mitomycin (a treatment similar to BCG but without the infectious properties.) Ask your husband's urologist about this possibility.
The alternative to BCG would be to continue the cystoscopies every three months and have tumors removed if they should return. I know that you would not want your husband to endure the pain that untreated bladder cancer could lead to.
My heart goes out to you. Your husband is lucky to have you by his side.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
My husband is 83yrs old and has Alzheimer's. In February he had a small 0.5 cm bladder tumor removed with the following diagnosis: Carcinoma of the bladder with the following features 1)Tumor type: non-invasive carcinoma 2) Histologic type: Urothelial 3) Histologic grade (WHO/ISUP 2004): High grade 4) Tumor configuration: Papillary; 5)Extent of invasion:None identified; 6) Lymphatic invasion: Absent; 7) Associated epithelial lesions: None; 8) Muscularia propria (detrusor muscle): Not identified.
My husband had a very difficult time after the cystoscopy (when they discovered the tumor). He was pretty miserable to say the least with the burning & frequent urination and developed a urinary track infection to make matters worse. He couldn’t understand what was happening even though I would explain whenever he would ask. Then came the surgery, which went well, but he came home with a bad case of the flu along with the incontinence, etc. He didn’t want to take his pills and strongly resisted drinking water. Again, he had no understanding of what was happening to him or that he had even had surgery. He would ask “Is this the way my life is going to be??”
At the follow up visit to his doctor I was able to speak to the doctor prior to him seeing my husband. I wanted to make sure that he understood that my husband has dementia and didn’t even remember having surgery or why. I was concerned that if further treatment was needed if my husband would be able to tolerate the effects or if he would even be able to follow instructions. The short version of the doctor’s recommendation was to have a follow-up cystoscopy in 90days (May 18th) and to proceed with surgery if another tumor has appeared. That would be followed by a once a week treatment for 6 weeks with BCG that would require him to hold off urination for 1 hour. The doctor said without treatment there is a 30% chance of a recurrence and with treatment there is a 15% chance of recurrence.
The cancerous bladder tumor is most likely the result of receiving seed implants/radiation for prostate cancer 12 years ago. The tumor appeared in the location of the prostate to the bladder, where redness can still be seen. If there is a recurrence, it will probably be in this area and near to where he had the present tumor.
Generally, my husband is content and enjoys his days even though his activity is limited. Since the cystoscopy in January and surgery in February it’s only been the last couple of weeks that he is back to his usual self. It’s nice to see him smile again! I guess my question is, is it really worth putting him through further cystoscopies & perhaps surgery and BCG treatments? Are there stats as to treating someone in their 80’s or with dementia? I want his final days to be at home and for them to be as painless and comfortable as possible.