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Husband just diagnosed with Stage IV bladder cancer

1 year 6 months ago #53432 by PeggyJoan6
Hello Moira,

I am so sorry. My husband had RC 4 year ago, and just found out cancer cells in urethra, so here we go again.

I will tell you that one of the best things you can do for yourself is to have someone you can really talk to.....in my experience that has been on forums such as this. These membesr can honestly say 'I know what you are going through', and can offer tremendous comfort and support. Please take care of YOU, and taking one day at a time really helps. I must practice what I preach, because my brain keep jumping to tomorrow to hear the fate of my husband at the urologist's.

I am thinking of you. Take a deep breath and know that you are not alone! Cancer sucks, and it does help me to lean on other emotionally - you know, that 'we are all connected thing'. :)

Blessing,
Peggy

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1 year 6 months ago #53430 by MoreLife
Bear in mind that every cancer has its unique aspects and there are new therapies like this one (Tencentriq) http://www.roche.com/media/store/releases/med-cor-2017-04-18.htm recently approved for advanced bladder cancer. Don't give up hope.
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1 year 6 months ago #53429 by Moira59
Hi Ann. I had hoped that things would move quickly a month ago when my husband ended up in the hospital because the tumor was blocking his kidney entirely and they had to put a nephrostomy tube in to relieve the pressure from urine backing up in the kidney. They put in the tube and sent him home, barely giving him enough information to keep the tube site clean. They did order us home health aides to come in a few times but never called an oncologist.
This all started at the end of March. We finally have a visit with an oncologist Thursday. I just don't think it should have taken this long.

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1 year 6 months ago #53425 by Firstborn
Moria,

Hi I'm Ann, from my experience with my moms, Stage IV Bladder Cancer, I took a recorder with me because they used terminology that I was unfamiliar with and I knew I may forget alot with emotions high and I wanted to get everything . Also, don't be afraid to ask for a second opinion.

It does take a long time to get things rolling and we were frantic ( her 5 grown children she was widowed) what we found out was she had started running a fever one day before we even knew what stage it was and her primary doctor said if this happened to take her to the ER right away. So we did that and she was transported to Tulsa from a community hospital.

They admitted her then by the next morning we were seeing an oncologist a radiologist and things were moving so quickly we had a hard time adjusting. We had just waited weeks for test results on MRI And CT Scans. They were making appointments for everything that next day.

We were told that once your in the hospital like that it by passes a lot of the wait time that you have to go through because of insurance requiring certain things to be done first then so on. The down side to this we were not prepared and didn't expect this so we did not get a second opinion. We got afraid to ask questions and really didn't know what to ask it was so new to us. Ask away and research . I have found healthy eating brought up over and over again on many cancer sites.

One of the most important things is support and caring. Encouragement and hope never give up and stay positive and love each other and love each other some more.

Ann

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1 year 6 months ago #53415 by Moira59
Thank You Jack. You gave me some valuable information. I am really trying to read everything I can get my hands on.
I am trying to prepare for our visit to the oncologist on Thursday, and what questions I need answers to. It seems like it is taking forever to get him into some sort of treatment and I worry about every day that goes by.

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1 year 6 months ago #53413 by Jack R
Moira,

Welcome to the forum. No doctors here, just those of us with or seeking information about or support while dealing with bladder cancer.

Of course you husband is depressed. any you too perhaps. The unexpected cancer diagnosis sucks the wind out of the patient and those who love and care for him/her.

The unknown is very scary; the first month or so is the worst. But the two of you can start to take back control as you become more familiar with what might be recommended, and what options best address the patient and family's concerns, needs and fears.

Control often helps dispel depression; many find it helpful to keep a list of questions for the doctor appointments. Spill your guts as to concerns, hopes and fears. Require the doctors to answer all your questions. Make sure the doctors understand you want to be involved in decision making.

Your concerns about depression and weight loss brings to mind the following website from the University of Pennsylvania. Under the heading of "Getting Treatment" there is information about "Nutritional support" and "Coping with a cancer diagnosis".

Unfortunately, doctors too often (for my liking) focus on the disease rather than the patient unless made to respond to direct questions. The forum here provided much support to my family after the diagnosis; feel free to ask questions here, understanding that answers will be from patients, not medical professionals.

General Info link:

https://www.oncolink.org/cancer-treatment/getting-cancer-treatment-start-here

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 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
Begin year 4 with cis T0
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