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Talking about your cancer and how you are treated

10 years 10 months ago #28550 by Cynthia
As you see your original question got a lot of different answers. I tend to be like George and was very open about it. I know others that they feel did not wish to be as open for personal or professional reasons. I didn’t tell anyone but those closest to me until I had a firm diagnosis so I would not have questions I didn’t have answers to yet.

You are right people with react differently. Some may run the other way as they don’t know what to say or do. The good news is sooner or later it will become old news and life will go on as hard as that is to believe now.

As for the helicopters try to cut them some slack they fear losing you it comes from love. I once spent a week in a hotel room during chemotherapy with my oldest sister. It took me a month to get the fake smile off my face and at least that long not to fantasize about hitting her with it every time I picked up a news paper.

By the way I am five years out and told a girlfriend that she sure did treat me better when she thought I was going to die…… (She did hit me with a news paper) Lol

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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10 years 10 months ago - 10 years 10 months ago #28549 by mmc

Yes, people will be all over the map. Many will take their cue from you. Let them know how much or how little you want to discuss it with them.

For those that are already in the avoid mode, they are going to be in for a big surprise because given that you had a low grade, non-invasive tumor, there is a very good chance that you will outlive them and die in a boating accident in your 90's.

Low grade, non-invasive bladder cancer is cured WAY more often than not when found as early as yours was. It doesn't mean you shouldn't get the diagnosis confirmed at a bladder cancer center and that watchful waiting is not in order. I think I've probably harped on that enough at this point but I will glady stop as soon as you schedule that follow up. :)

That presentation that Cynthia just posted this morning about non-invasive even says they recommend getting a single dose of mitomycin immediately after the re-TURBT. Look at the stats in that presentation for when people do that. You ARE going to get past this.

If caught early, treated properly, and monitored correctly bladder cancer (especially a low grade, small, single tumor) will not be what you die from.

If people know that, I think they will then be more than comfortable talking with you. It's good to have a friend to go on appointments with you. They, along with you, learn more and you will each remember different bits of the discussions with doctors. My wife went with me on most visits I had and it was a big help. Not just the support, but the ocmbined memory of the discussions.

The more you learn, the more you can educate others and then they will be much more comfortable about things (as will you). As this initial shock of the big C word diagnosis will wear off for you, it will for those you talk to.

Let us know when you get that follow up appointment scheduled with UCH. :) I can recommend a few great doctors there. Do you prefer male or female, short or tall, slim or stout?

Mike :)

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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10 years 10 months ago #28548 by vgau
I am finding that there seems to be several ways that people are reacting to this.
Some seem to avoid me, maybe because they don't know what to say or are worried about saying the wrong thing
Some are like helicopter parents hovering all the time. I have a very best friend that wants to be at all my appointments and I can't handle that.
Other seem to just wait to see if I bring it up.

I am sometimes not sure who is who and how to make this easier for them as well.

Dx 10/5 Non Invasive Papillary

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10 years 10 months ago #28547 by GKLINE
This site is for talking about cancer, but we never talked about talking about cancer. Interesting.

So, I talked about it to my family, employees, friends and golf buddies. I wanted to shield my dad a little (he is 83 years old and I didn't want to add more pressure to his life) Although one day he came down to my business very early to wait for my salesmanager to come in. My dad was going to read him the riot act for telling one of our customers about my illness. Our office manager was able to calm him down by saying "George has no problem with making this public. He knows the rumor mill would blow it all out of proportion if he tried to keep it quiet."
As time went on, I actively talked about the cancer. I also was NOT going to let this thing get me. I talked openly about it with my wife, but that was not relieving the pressure on her as I had hoped.
My openness brought on a most unexpected cheerleading crew. My wife's friends. They were most encouraging. While in the hospital, one day I received 9 cards. They simply were addressed "George Kline, Albany Medical Center, Surgery Recovery, Albany N.Y." One of my wife's friends sent a card a week, for 2 months.
For the past 2 years I have talked openly about bladder cancer and the recovery. I have been asked to contact 3 people who were diagnosed with the same cancer and talked them through their surgeries and recovery. I have sent caregivers, and patients alike, to this site for answers. But if it wasn't for this site, I would not have the answers to even their easiest questions.

OK so this is a long winded post, but I have found that being open, and at ease, with talking about it, is the way to go. This cancer thing is scary to everyone. People WANT to know about it, but are very afraid to bring up the subject. The usually ask "How are you?" Without going on a talking jag, I state the Positive, and wait on their willingness to talk further.
Just as Patricia says, this disease needs more publicity. Don't hide under a bushel, talk about it. you will be so surprised How much the other person want to talk about it. They may have a friend or family member with cancer and just need to vent.
I have had the good fortune to have recovered well from all of this. I have been complimented on how well I look and act. I have used this as proof that cancer doesn't have the right to take away a life. There is hope, and fighting is infinitly better than giving up. The old attitude was that cancer was someting to be embarrased about, and kept quiet. My attitude is, the more we talk, the sooner this disease will find a cure.
George Kline

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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10 years 10 months ago #28544 by sara.anne
It took me a while to get my head around the news, but once I did I have shared it with lots of people. My philosophy is that if it could happen to ME it could happen to lots of other people....therefore they need to know about it.

Seventh graders? I am not sure about that one. If it reaches the point where you need to miss classes, or are really feeling rotten while teaching, probably. Otherwise? Some are mature enough to deal with it, some not. Be interested to know what others think about this one!!

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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10 years 10 months ago #28543 by vgau
I haven't even thought about sharing this with my students. While I am a Life Science teacher and know this is right up my alley since I teach the human body, I don't know if I can deal with or expect 7th graders to deal with this.

Dx 10/5 Non Invasive Papillary

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