Opting for no treatment

I was diagnosed with bladder cancer at age 84 and had two six-week immunotherapy treatment sessions with Bacillus Calmette-Guerin (BCG). Mild fatigue was the only side effect I experienced and managed to continue playing golf regularly. The folks at Mayo were wonderfully kind and professional. I've been incontinent for 20+ years after prostate surgery, and this required me to remain at Mayo on a table during treatments. I brought along my iPhone and listened to music or podcasts to pass the time. Insertion and removal of the catheter used to introduce the BCG was not difficult (slight discomfort for a few seconds). There are no guarantees when it comes to side effects, but based on my experience, I would encourage treatment.

I am 85 and agree completely with dswanson. My experience is with Gem/Doce as BCG would not work for me, but I have had virtually no side-effects, other than very slight nausea for a couple of hours after treatment.. The treatment administration is a little uncomfortable, but really nothing to worry about. I also take along my iPhone and iPad to while away the couple of hours while in the private room at Moffitt. I continue to ride my bike up to 50 miles per week.

@dswanson and @gemdoc25...From the bottom of my heart, thank you for taking the time to share your experiences. You have no idea how much that means to me during this challenging time. It sounds like my family member has done a little research and may be reconsidering treatment. I will be sure to share your information with my family.

Thank you again for your time and insight, I wish both of you continued good health.

I’m 75 and have had a radical cystectomy. I was not given a choice due to the nature of my bladder cancer. Since your family member is feeling good, my thought would be to try the immunotherapy. If the side effects are not tolerable, you can always stop the treatment. They are not talking surgery where once it’s done, you can’t change it. You may be able to get more quality time together and you won’t be dealing with recovery from a major surgery. It is totally up to the patient. I feel it gives him/her a good chance for extending their life.

Although I am a “young” 77 year old woman, I have a perspective on this. I was diagnosed about a year ago with a very invasive bladder cancer. I received chemotherapy, immunotherapy, and then surgery radical cystectomy. I struggled with all of the treatment.(diarrhea), so they had to discontinue that. However, I am now feeling better one year later, although I’m not 100% back to my normal self before all of this. I’m not sure whether to expect full recovery or not. I am in charge of my physical body mostly and I am in charge of my brain and those were in doubt at times. Having said all this, I am offering my perspective. I say perhaps you can recover at 88 even though I went into at 77. I was not in good shape at all and struggled with the treatment.
Fontaine
PS. I got good support, but fell and fractured both my hip and pelvis 3weeks prior to surgery, had to spend 1 month in the hospital after surgery, and lost 60 lbs.
I’m a survivor!!

@knshopper, deciding whether to continue with treatment or not, or to choose not to have treatment might be a personal choice. But, it is a choice that affects the whole circle of family and friends supporting them too.

Your family member's cancer team considers health status, age, medical history, effectiveness of treatment, patient preference and other factors when recommending treatment.

The best decisions are made when the whole family is equipped with good information. The cancer team can help answer questions like:
- What are the potential side effects of the recommended treatment?
- What is the expected outcome of the treatment?
- My definition of quality of life includes __________. Will treatment affect this and my definition of quality of life?
- If I decide to take treatment and change my mind, can I stop?
- What will happen to me if I decide not to have treatment?
- How will you keep me comfortable as the disease progresses?
- Can I get a referral to a palliative care team?

Sometimes people make choices without asking questions. Sometimes family members are worried that the person with cancer is giving up. These are important things to discuss so everyone feels comfortable and supportive of the decisions. I know these conversatons can be hard to start. An oncology social worker can help. That is an often overlooked service offered at large cancer centers. You may find this blog post, written by the Mayo Clinc oncology social work team, helpful to learn more
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

How are you doing with your family member's decision?

@colleenyoung Thank you so much for the information, it is very much appreciated. This site is a wonderful source of support.

I'm not sure if you can provide this sort of information, but a looming question for me has been, if my family member decides not to opt for immunotherapy, what does the path forward look like in terms of disease progression? I would imagine we need to start looking into palliative care options as we would like to keep this person as comfortable as possible for as long as possible.

Thanks again!

@knshopper
Hello, I’m also interested in knowing what to expect, as bladder cancer progresses. My 79 year old husband has mild cognitive impairment as well as T1 carcinoma in situ. He’s had 2 rounds of BCG, immunotherapy, intravesical chemo and six TURBT surgeries.
Although he has handled all of this amazing well, it’s getting harder to deal with.
He does not want to have his bladder removed. And I’m concerned, with his MCI, he would not have
the capacity to handle the radial surgery and the long recovery. From what I’ve read, the anesthesia could push him into later stages of dementia. Postoperative Cognitive Dysfunction, it’s called.
Wondering what to expect if he opts to do nothing more. Maybe palliative care is the answer?
Wishing you well.