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I am still trying to figure out how to navigate

2 years 1 month ago #52235 by sara.anne
I understand your feelings completely.

You are in a unique position with your work background to be able to make some pretty good judgements about your local doctors. That is an advantage that not many patients have!

As for "cancer centers," that description can cover anything from for-profit hospitals that make a lot of money on "treating" cancers, to NCI Centers of Excellence. So what you are REALLY looking for is someone who treats a lot of bladder cancer patients such as your husband. A lot of urologists treat mostly prostate patients and do not have the experience you need. If you know the questions to ask, and you obviously do, you will make a really good choice.

Also very important is the "feeling" that you, and especially your husband get from the doctor and his staff. You are going to be partners with him for a very important journey and also for quite a while during post-surgery and followup.

And if things do start to feel "wrong" just trust your intuition and make a change!

You are doing great!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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2 years 1 month ago #52234 by Karsonpaul
I Thank you for the encouragement.. I'm hoping things make more sense as we get more information. The 1st few days I think I reacted worse than my husband who has the cancer.. I did at least manage to appear hopeful snd upbeat but inside I just felt so hopeless.. feeling like I was loosing my best friend.. we are getting advice to go to "cancer centers" vs docs in our area. I worked in medical field ( only scheduler for day surgery) but got to meet lots of the docs and nurses st local area hospital. We were told the urologist was one of the BEST in the area.. and I see the surgeon on our team was ranked best in our medical magazine for several years in a row. I think not being sure you are in the best hands possible is a scary thought ALL by itself.. my husband doesn't really want to leave this area and being this is his fight I think I should honor his wishes.. but...how do you put your life in someone's hands that you never met before?
Having worked with his scheduler has at least gotten us on a " fast track"..and urologist has coordinated a team of doctors. I felt pretty comfortable until people started to make other suggestions. Should I leave this decision totally up to my husband? Should I ask this ". Team"
If they are as qualified as the docs at cancer centers.. how do you choose?
How do you keep your thoughts and spirits up?

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2 years 1 month ago #52233 by GKLINE
Hello
I am glad you found us here.
When I got the news more than 8 years ago, I went searching for answers and found this new site and learned what was going to happen.
My experience was similar to yours. The Dr walked in to the small exam room.... opened a metal folder..... looked at it for .000001 of a second and said "So. You have cancer".....
He started to click off the 10 steps that I was to go through and I heard NONE of them until he got to #10 "We will help you through the hospice program"
Luckily, I snagged him and said " I have a lot of things to accomplish and people who depend on me. I need you to look at me as a person, not just a being with cancer"

I also mad sure my wife and I BOTH went to the DR appointments.... With a notepad. So we could write down the Dr's instructions, and to remember to ask questions we came up with at home.

I know it is very scary. Cuz it is. It's cancer. But there is hope for recovery and there are many of us here to listen.

You are free to ask anything! Express your fears! Rant and howl at the moon.
It is OK here and we will try to help.

Best of luck with your journey. Remember that you and your husband are a TEAM. He needs you as much as he needs the Dr. Don't fall into a depression funk. It is easy to do and can cause as much pain as the disease.

We hope to hear from you again.

Sincerely
George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]
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2 years 1 month ago #52216 by sara.anne
So sorry that you have to join us, but very glad that you found your way here!

First, a lot of patients have a cystectomy and go on to lead full and happy lives. Your husband can also....just keep that in mind.

Just a few mundane suggestions...As Jack said, when we get diagnosed the only thing we can think is CANCER! Every sane thought disappears. Even you said that there is a bit of brain fog. If at all possible try to be with your husband during his discussions with the doctors. TAKE NOTES. It is amazing how much our brains can forget. After you and your husband review them, you can make a list of questions for the doctor....and there will be many, I know.

Try to make time for the two of you to do things you enjoy together, away from the "cancer thing." A special place for dinner? A ride in the country? Something to relieve the tension.

And if you have questions, there are many patients here on the Forum as well as caregivers who have been where you are and who can answer questions and share their experiences.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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2 years 1 month ago #52215 by Jack R
Karsonpaul,
For those of us who have had that moment when all the air got sucked out of an exam room when the word Cancer was spoken, and could not even think of what to say or ask until hours later, this site has been of great help.

There are no doctors here. There are people helping people understand and make sense of this disease and help by sharing real life experiences. This site has been my #1 place to really understand the implications of what the doctors say in those 15 minute consultations.

There are years of questions and replies here. I will suggest that you may want to explore the FORUM, starting with the CATEGORIES of "Newly Diagnosed" and "Invasive Bladder Cancer". You will find the questions and suggestions made by others; you can also ask your questions. CLICK on Forum, then click Categories, then select one category and read the questions other have posted, and the replies others have provided - some will match your questions and concerns.

As your husband is newly diagnosed, you may find the following link helpful. It is from the National Cancer Institute (NCI). It is a broad overview of Bladder Cancer (BC), and is a good overview (but not very specific) - many pages on many issues. A good starting point.

https://www.cancer.gov/types/bladder

Try to allow yourself time to breathe. It is hard to do so when suddenly diagnosed, but try. It will take a bit of time to get used to the changed circumstances.

Once you join, and it is an simple process that does not ask for nor encourage personal identification or information, you can post the questions that you have. Like most of us as we came to terms with our BC, I'm sure you will have many questions.

The moderators here are great, expect a comment form one soon.

Best
Jack

2+ years into the BC journey and counting

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
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2 years 1 month ago #52213 by Karsonpaul
Not sure how I got here.. trying hard to figure out this site.. directions not clear.. or maybe it's my brain fog.
My husband was just diagnosed with bladder cancer.. it was like a punch in the gut as I'm sure you all know.
We are new here and new to cancer.
We only have gotten to 1st stage.. bladder biopsy was done and urologist explained next few steps.. was told it's an aggressive cancer and seems to be in the blood vessel pockets.. requiring chemo and removal of bladder... next visit is to oncologist.. but " coordinator " suggested because of having one kidney chemo may not be an option..(scared the bejesus) out of me... at this point I am trying to think positive but finding it very difficult. Hopefully with more info and better understanding will give me more hope.
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