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Just diagnosed

3 years 3 months ago #51285 by LillianG
Lupenbill - my tumor was 4.2cm (yes - that's centimeters), so your lesion is significantly smaller than mine was, and I've been getting clear reports (no evidence of disease NED) since it was removed in May of 2015.

The size of the lesion is important, but the Stage and the Grade of the lesion is what really counts and defines your treatment path. For example, the pathology on my lesion was Stage Ta and High-Grade.

In my journey so far, I've found that knowledge is power. The more I understand what I'm dealing with, the better I can communicate with my doctor and help ensure that I am getting the best possible care for my situation.

Here's a site that I found a year ago that helped me better understand some of the basics:

http://www.auanet.org/education/guidelines/non-muscle-invasive-bladder-cancer.cfm


I hope this helps. Again, feel free to ask questions.

Take care,
Lilyg

Dx 5/28/15 with 4.2cm x 2.2cm Ta HG Papillary TCC; 2nd TURBT 7/09/15, NED; 6 BCG completed 9/30/15; 3 sets of BCG maintenance completed 1/26/17. Six cystoscopes - all NED. Moving to scopes every 6 months, and no more BCG maintenance.
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3 years 3 months ago #51284 by Lupenbill
I do know I will have to talk to the kids about this especially the 13-year-old. But first I want to be able to tell him what the real facts are not what I have blown up in my mind or the what if's I have extremely high hopes of telling him it's truly not that big of a deal and then I just need to go in every three months and get checked. My doctor seems extremely confident that this was caught very early. And it is small tumor I am not sure what is considered a small tumor is a 5mm tumor considered small . From what I can tell that would be about the size of a Pea. I asked him several times if he said centimeter or millimeter every time it was millimeter. Again I would like to thank U for the responses it truly does help to have somebody to talk to.

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3 years 3 months ago #51283 by LillianG
Lupenbill, I think the waiting and wondering is the hardest part.

I waited until I had my initial pathology back, understood the results, and knew what the treatment plan would be before I shared my diagnosis. I knew that my son and siblings would all have a lot of questions (and they did), and I wanted to be able to answer their questions as best I could so that they didn't have to deal with any undo worry.

It was too hard for me to talk about it, so I told my 30-year-old son first (right after my first TURBT); then a few weeks later (after I got all of the pathology results back), I wrote a long, detailed email to my four siblings so that they all found out at the same time and received the same information. Naturally, they all said that they wished I had told them when I was first diagnosed, but I did it my way and have no regrets.


Take care and keep us posted,
LilyG

Dx 5/28/15 with 4.2cm x 2.2cm Ta HG Papillary TCC; 2nd TURBT 7/09/15, NED; 6 BCG completed 9/30/15; 3 sets of BCG maintenance completed 1/26/17. Six cystoscopes - all NED. Moving to scopes every 6 months, and no more BCG maintenance.

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3 years 3 months ago #51282 by sara.anne
I am a strong advocate of sharing with friends and family, but at your son's age I think I agree with you. However, once you have the biopsy results in and know what you are facing, you will need to share with him. Children are very perceptive and he probably can already tell by the tension surrounding you that something is not quite right. You will need to share when you know what is is you are sharing so that he does not feel left out/neglected. He needs to know that you trust him.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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3 years 3 months ago #51281 by Lupenbill
Sara Anne
Thank you for the words of encouragement it lightens my heart to know that there are people like you who have successfully fought this type of disease. I have been told that I am lucky that it was found so early. It's still very frightening and I know it's only a week and a day until the procedure but it seems like forever. My rational self believes that in eight years I will be giving advice to others. But my emotional self is a wreck.part of my biggest fear I still have a 13-year-old son at home I really don't know whether to talk to him about this or not I'm inclined to wait to see what happens with this procedure he is such an easy-going happy guy I really don't want to take that away from him right now and put all this worry on him. I'm sure others have dealt with whether or not to share news like this with your children or other loved ones I guess for now we have decided that this will stay between my wife and I
Lupenbill

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3 years 3 months ago #51280 by sara.anne
Lupenbill, welcome to a place you do not want to be! All of us were once where you were....I remember that I just couldn't believe it...I thought "now I know what I am going to die of!"

Well, here I am with no signs of cancer over 8 years out. I had two forms of bladder cancer, papillary (like a little mushroom) and CIS (a high grade type that is sort of like a rash on the bladder lining). Had two TURB's (surgical biopsies), went through immunotherapy with BCG, and IT WORKED!!!

You do have some emotionally and physically difficult days ahead of you, but with your wife's support you will do fine. And 8 years from now you will still be here, offering advice to others. There are a lot of stories on this forum from people like you. You will find that many are doing very well.

Feel free to ask any questions you want. Someone will be able to share their experiences with the same questions.

Wishing you all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: lea4677, dani

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