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What is a likely sequence of events when bladder cancer is untreated?

1 year 10 months ago #56077 by Cynthia
Posey, Welcome to our site but I am sorry for what your family is dealing with. It is hard to know what to tell you about timing and progression. The real answer is it depends on a lot of factors and will unfold uniquely for each individual. The best advise anyone can give you at this time is to find a good hospice organization to deal with. Your doctor might have a list or they are listed on the web just google your zip code and hospice. Not all hospices are created equal and offer differing approaches and services. If you are lucky they may be more than one in your area and it is a good idea to interview several if they are avalible. Some will come to the home and some are facility based. You will want to talk to them now and not wait the one you pick will help you with a plan for when and where. The hospice I have dealt with four times now have been wonderful. The main focus was on comport and dignity, they helped with special equipment and found solutions I would not have thought of. My husband Aunt was in decline and was in her late 80’s and didn’t want to go to the emergency room anymore so she decided she wouldn’t and we supported her. They were with her for over a year, they still treated things like a cold or a UTI but she could stay home and was comfortable though the whole time. I personally have worked in the medical field and it has left me with a deep appreciation for what they do as I have seen situations where they were not present and the emotion and physical comfort they can offer is invaluable.
Please keep us updated and we are here to listen if you need us.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
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1 year 10 months ago #56076 by Alan

Welcome. We are simply sorry you have tough decisions ahead. We all face these at some point in life. Pat yourself on the back as you post as a very caring person. It often affects the caregiver more than the one with problems.

As we are all different and the rate of progression have too many variables to speculate a time line and none of us are doctors. I have been told that invasive bladder cancer untreated often will take a year to 2 to claim one's life. Your sister having dementia in some ways may be a blessing. Having friends and one parent (now deceased) with dementia, I learned to accept where they are in life and keep them comfortable in their surroundings. There will be a time palliative and/or hospice can step in. Your doctors and social workers within your hospital group can be a wonderful source. Do not hesitate to use them.

Anything else is pure guessing on my part. Feel free to ask questions as you go.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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1 year 10 months ago #56074 by PosyLincoln59u
My 81 yr. old sister has been diagnosed with high grade, invasive bladder cancer. She is not a candidate for surgery. I understand that the cancer will spread. Because my sister has dementia and because she recently made a terrible fuss about going to 6 wks. of radiation (at a very friendly, supportive office) for squamous cell CA, I know she will not understand or agree to the daily treatments. It would be torture for her. I probably could get her to go a number of times, but her Primary Physician explained that it is a commitment. I now understand that it is all or nothing, I have picked nothing,

My sister is content at present and takes care of herself with the support of daily help. There is a slight trace of blood in her urine now She has an appointment with the referring urologist after Thanksgiving to scrape out whatever tumors are present. Her urologist did this before. I know it IS NOT A CURE. My sister's Primary Physician is connected to end of life arrangements. But I'd like to prepare for the expected sequence of events.

Her Primary physician suggested I ask the radiation oncologist my questions. But I have refused the treatment he advised so I'm very reluctant to contact his office.

What is a likely sequence of events when bladder cancer is untreated .

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