bad news please advise

Julieanne,

Where is your mom being treated? Location? We have numerous options for specialists in this field if she would like a second opinion. We all mostly advise that. Not wanting chemo is not such an unusual thing, the side effects can be disturbing, maybe she knows more than us, she may choose it at another time. How old is your mom, health wise, good,? This all helps for us to know, what type of deversion did she get? outside bag, neo-bladder? We are here to help!! Did you see the path report after surgery??
Ginger Beane

Dear Julieann -- I cannot help you guess the outcome of the upcoming tests, as much as I'd like to (and, of course, I'd like to predict results that would make you happy.)I hope that you will have more than one person there when the results come and that you'll take good notes and ask all your questions. I hope that your mother's faith will help her as she awaits the results and that you have support, too. Be blessed -- Susan

Thank you, thank you, thank you! My mother is very spiritual and has a very deep faith. To be honest, I don't know if she will opt for treatments even now. She is feeling good and she is very active on the farm. She doesn't want to feel bad from the chemo. She recovered well from the surgery and has been doing great. If she has had pain, She has kept it to herself. A couple of things I am wondering is this: Considering that they saw nothing 3 months ago and now see 3 swollen nodes, does that mean it is aggressive? Also, I am assuming that considering her history, the nodes will be cancerous. What do you think? I also forgot to mention that they did see a small something in her lungs.

Hello, Julieann -- please take care of yourself during this tough time. (For example, please take a deep breath for yourself now.) Have you read the Metastatic
bladder cancer page on this forum. I think that is a good place to start the research you need. Some of the answers you wish you had today will probably need to await the test results and that is so hard. How had your mom been feeling physically, emotionally, and spiritually before the scan? If she was feeling pretty
well, after the shock isn't so new, she may well feel ok again and having good days is a good thing even when we're worried about something bad that might happen in the future. I cannot provide the statistics or guess how your mother's journey will
go, but I am so glad you posted your news and has started to connect in a quest for
answers. People here do care -- I've only been posting for less than two months, and
the Forum has made a real difference for me -- reducing my sense of isolation, for
example. I wish that and more to you -- Susan

Hi,

Please realize that there is plenty of data that shows chemo can be curative for metatastes confined to regional lymph nodes. I know a couple of women personally who have been through this and are many years cancer free. Don't despair. I know of a woman who failed one chemo course but got total response to another.


If there is any other spread to organs like liver or lung the outlook is less positive, but even if that were so, there is still time to be shared with your mother. This is not an immediate death sentence but it's not an easy road either.

Get a good uro oncologist/specialist in the field involved if at all possible. Is your mother happy with her doctor and team, place of treatment? It sounds like she needs to hear something hopeful in order to encourage her to seek treatment.

There is no way to answer just 'how bad' things are and what to expect as that depends on what the scans show, what options are offered and what options are acceptable to your mother.

Is she in good general health, recovered from surgery?

And for the record, up until recently it was not always advised to have chemo before or after surgery even for stage III, and many people did fine. Seems to me it's becoming more and more common to advise chemo these last five years or so, because there is a true search on to improve long term survival rates for those who undergo bladder removal and some experts have come out with studies saying chemo will do this.

Have a look at WebCafe's "Tales from the Trenches", survivor stories for an idea of what others' experiences were like. Read the chemo section on the main site, as well as the metatcc.asp page for metastatic.

And of course feel free to ask anything, there are many here who have been or are going down a similar path as your mother and you. There are success stories, there are also stories that are not, we see it all.

I know the terror and pain of having a loved one be diagnosed with cancer- any cancer. It's horrible. But believe me, it becomes familiar after a while, if you can learn the territory it may help relieve some of the fear of the unknown.

Stats are easy to find it you want; I've read that up to 30% of those with local nodes involved are alive and cancer free 5 yrs later if total response to chemo is had.

I'm glad your mother is not second guessing her initial choice. Besides, as someone who is 'chemo naive' she will get a better response than if she'd already done it without knowing for sure it was actually needed. That's another way to look at it.

Take care,
Wendy

Thanks Patricia. I guess hindsight is 20/20. My mom did not make a rash decision about no chemo. She really prayed about it. She found peace with her decision not to do the chemo. She still says no regrets. Like, I said, it may have been the wrong way to go, but she chose it. Thanks so much for your input. Again, I hate to be so negative, but I am just the type who needs to know the facts. What are the survival statistics, do you know?