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Diagnosis for spreading?

8 years 11 months ago #29682 by Cynthia
This post has gotten very off topic and I am going to lock it. Please feel free to post from now on in the non invasive area as you have now been “graduated“to non invasive. I am very happy that you have gotten the message that we all have to stay on top of our individual situations. Keep pushing for that second opinion.

You are welcome to post anywhere on the forum you feel is appropriate. We have at different times talked of making different forums for invasive and non invasive as some find it stressful reading of people that are dealing with more advanced bladder cancer. We as a board decided to not do so do to the fact that we are a family and we feel that we should not be segregated by our diagnosis. If someone is upset by another’s situation we are all big people and know by the titles on the forum categories what they are about and can chose not to go there.

If at any time you have questions about where to post and what is proper etiquette on the forum please feel free to email me directly at This email address is being protected from spambots. You need JavaScript enabled to view it. or you may go to the contact us button in the main menu.

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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8 years 11 months ago #29681 by vgau
Thanks for the advice. I was talking to my husband about this thread as I was trying to analyze what was said. He laughed and said "They don't know you very well."

I was/am not sure what exactly was being suggested.

First, I think I have a pretty good handle on what is happening with me and understand how good my status actually is. However, I want to understand about all aspects so I have the knowledge if things ever change. I also have not given up the fight for a second opinion.

I guess I need some clarification on the idea of replies. Do people tend to stick with their area (Newly diagnosed, etc.) or is it ok to get involved with other postings. I know I don't have the experience or knowledge of some, but I do have compassion and get excited when I hear good news.

This is getting too long, but I am one who gets 100% involved in things, but can curb myself if needed.

Dx 10/5 Non Invasive Papillary
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8 years 11 months ago #29670 by dukel
Hi Vi; One thing you do need is to have a comfort level! It sounds to me like that comfort level for you includes a second
opinion, as it should. Don't give in to your insur. company.
You need to keep pushing and fighting them. That brings me to my second point. That is that everyone in your or my position needs to have someone driving the bus. That someone can be yourself, your spouse or someone very close. Who ever it is must be some one who will not take no for an answer. I'm not talking just from the insur. companies, but from doctors, labs,nurses, etc.
In my case each time it has been my wife. No one could be better at it then her. I hope you have someone like this to help you through all of this.
For me it ment that i didn,t need to worry about all that outside stuff. I always know I,m going to get the best care, bills are going to be paid, and things will be done in my best interest.
Wishing you the best. Duke
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8 years 11 months ago #29669 by Cynthia
Vi,

How anyone handles the stress of a new diagnosis of bladder cancer or any other cancer differs. Some need to know every little thing about it some want to be an ostrich. Ostrich may be more comfortable but the fact is they are the ones that do not do as well as the ones that get to know their situation. You are doing the right you are taking ownership of your health care. Being here and seeking support and knowledge are the wise thing to do.

As Ann says some of people that are low grade non invasive come when first diagnosed and then move on with life when they find it is just a surveillance thing for them. And only come back if they have a reassurance. I wish they would hang around so that they can help those that come after them. But that is human nature many don't want to hang around things that alarm them so they go on.

What you have to learn when dealing with a site such as this is that bladder cancer is many conditions under one name. Non invasive low grade has a survival rate of around 98%, being caught early, accurate staging, proper surveillance and treatment are key. It can be very hard to keep perspective of that when you are reading of people that are dealing with invasive or even metastatic bladder cancer.

When I was new to this and was gaining understanding every story and every statistic scared me to death. It took time to know what my prognosis really meant to me. Perspective is hard when new to this it is so consuming and terrifying.

You are doing the right thing, getting a second opinion is very very important so you can be sure of your status and what you are dealing with. Fight your insurance until you win.

Always remember that we all mean well here but the written word can not convey a gentle tone or the touch of a hand and can sound different for it.

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
The topic has been locked.
8 years 11 months ago #29630 by pemquid
Vi--
Like you, I really trust the people here, and I've never felt the need to "take a vacation" from reading the forums. I think people are so different in how they cope with medical issues, that there's no one size fits all solution. I know that for me, doing extensive reading and research is how I cope, but for others, doing extensive research or reading about others who are in "bad shape" may lead to unproductive anxiety rather than to having more sense of control of the situation. I know people who'd rather have a spouse, other loved one, or close friend be the one to do the research or have the extensive knowledge, and to have that person fill them in kind of on a "need to know" basis.

Ann

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.
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8 years 11 months ago #29622 by vgau
Perhaps I need to take your advise that I should not seek or give advise here and take a break from the forum. Not sure that will help, but I trust the people here.

Dx 10/5 Non Invasive Papillary
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