My Journey is just beginning

[Firefly]

Hello:

I have been diagnosed with nonmuscle invasive carcinoma of the bladder. As I acted immediately upon the first signs of blood, apparently I am in a good position.

What is not so good, is the fact (accordingly to my urologist) I need my bladder removed.  I have been offered 2 options, and am unsure as to which one to take.

Either a neobladder or an indiana pouch.  I am reaching out to anyone who might have been through this and ask for any regrets or thoughts as to which surgery

is/or was best.  My husband passed away only 6  months (who struggled for almost 2 yrs) with various health issues and this has come as a  complete shock to me.

Being a very (so I thought) healthy woman. Any advice/thought will be appreciated more than you know.

 

 

[Jack Moon]

Hi Firefly

 

Sorry you have been diagnosed with bladder cancer. If the doctor is advising you to have your bladder removed, then I believe you have been diagnosed with Muscle-Invasive bladder cancer. Normally patients diagnosed with Non-Muscle Invasive would have other options than bladder removal.

Do you have a copy of the lab report? The report will clearly explain the results of the biopsy, and whether the tumor(s) were non-muscle invasive or muscle invasive.

All the best,

Jack

• This reply was modified 4 years, 3 months ago by Jack Moon.

[Nightingale]

Hello Firefly,

I too am surprised that your surgeon would suggest bladder removal for non-invasive bladder cancer.  I would definitely ask for clarification and the reason for the removal of the bladder.  Let’s start there and see what comes back.

My best,

[marysue]

Hi Firefly:

I second what Jack and Nightingale have mentioned.  I was diagnosed with high grade non-muscle invasive bladder cancer in 2008 and after my TURBT  I had BCG as a follow up treatment.  The topic of bladder removal never came up.

If you are truly non-muscle invasive, I would be asking for clarification as to why your uro is recommending you have your bladder removed. This is a very big, extensive surgery so you need to be sure that this is the best treatment move for you.  That being said, if it turns out that you are a muscle invasive bladder cancer patient then bladder removal is usually the best option for the majority of these patients. Please stay in touch and let us know how it goes.  ((((HUGS))))

[Tana]

Hello Firefly; Sorry to hear of the bladder cancer. Also sorry to hear of your loved one passing. I have ta high grade non invasive muscle bladder cancer. Yes it is a shock to get the diagnosis. I , too, thought I was healthy! I agree with the others ( and they are knowledgeable to take their advice to get the results and be clear what you have. I wish you all the best on your journey.

Tana

[Firefly]

Is anyone out there? I have wrote many messages asking for answers – to no avail.  Having surgery at the end of the month, still on the fence as to which way to go. Would be nice to hear from someone.

Hope you are all well.

[Tana]

Hi Firefly-

I think From what I understand that we read that you have been diagnosed with non- invasive muscle bladder cancer and you said  the doctor wants to remove your bladder.

I’m not a doctor but following what Jack and Mary- Sue are saying that it’s unusual to have a bladder removed for non- invasive muscle type of cancer. Then Marysue does say if it’s Muscle Invasive then Bladder removal is considered and so then please check out the Discussion Forum heading for Muscle Invasive Bladder Cancer for people who have had theirs removed

Please double check what type of cancer you have so you can be helped with your type of cancer.

We are here and definitely are here to help you Firefly.

 

Take care- let us know – Tana

 

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