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My daughter is 36 years old and was recently diagnosed with bladder cancer.
She was to have her bladder removed in December 2022. The day before her surgery, her doctor called to say the cancer had spread and that surgery wasn’t a viable choice any longer.
Since then, she underwent numerous tests and started chemotherapy in January. Her oncologist has said the cancer is in her abdominal lymph nodes and spreading up her chest. The plan is to have 12 weeks of chemotherapy and then redo all the test to see how it worked.I also need to mention that she has a spinal cord injury and has been catheterizing since age 9. She also had received Botox in her bladder for incontinence for about eight years. We have been told that this is not linked to her cancer, but I question that.
She has started to lose her hair, experienced tinnitus, and looks exhausted. She displays a good attitude, but as her mother I’m struggling on how to support her through this as I think it will get worse as her chemo continues.
Hi Joey:
Welcome to Bladder Cancer Canada but sorry that you have need of us. It is certainly disheartening to learn that your daughter is only 36 and facing metastatic cancer. Chemo side effects tend to be cumulative so yes there is a real possibility that the challenges could grow as she goes through the treatment cycles. What she has experienced so far in terms of side effects happens to a lot of people doing chemo.
As for what specifically caused her bladder cancer, it may be impossible to know for sure. The main causes are smoking and exposure to certain toxins. Whether Botox is considered a toxin I’m not sure. There has been some research to suggest that bladder cancer can be inherited. I have also heard that long term catheter use may be a possible reason as well but that is unsubstantiated at this time. In many cases it is possible that more than one factor contributed to the cause and development of one’s bladder cancer.
In terms of learning what to do to support your daughter – I recommend calling the toll free number at Bladder Cancer Canada and ask to be connected to someone who has gone through the metastatic bladder cancer journey and done chemo. They may be able to help you with dealing with what might be ahead and how to support yourself in the process while supporting her.
A few other things I can suggest is:
1) Ask your daughter what she feels she needs at this time from you. Those needs will most likely change as time goes on.
2) Does she want/need access to someone from psycho services to help her manage the psychological aspects of dealing with cancer? These services are generally available for family members as well. You can usually get access by asking her doctor, or the clinic where she goes for treatments.
3) I also recommend checking around in your area to see what cancer support centers are there. They often have programs that are valuable additions to Bladder Cancer Canada and support both the patient and their families.
4) Lastly, find ways to take care of you. Caregivers often suffer from burn out because they don’t take enough care of themselves. If needed get others involved in your daughter’s care so that you can take a much needed break. Find something to do that you enjoy that is not cancer related and you can just let go for a while.
I hope my suggestions give you a place to get started. Please let us know how it goes. ((((HUGS))))
Hi Joey,
I am very sad to hear about your daughter. MarySue’s suggestions are sound and valid. To help you out I will look into finding a peer support volunteer, and if your daughter is interested I will introduce them. Often talking with another person with similar experience can be very helpful. I will reach out this Monday.
My Best,
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