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How to Define the "New Normal"

5 years 5 months ago #46327 by jswim789
Give yourself some time to adjust and don't be too hard on yourself. Like you I had a low grade non-invasive tumor. It was quite a shock, but the good news is that it was highly treatable. I know it will be a while, but once I got to the 6 month cystos for rechecks it was much easier to forget about this in between. It's there in the back of my mind, but getting very far back. And I have put this in perspective and realized there are no guarantees in life. Yes, it sucks, but compared to some friends with much worse ailments, it ain't that bad. Live the life you have to the fullest. You'll be surprised at how much you can accomplish and how much fun you can have.

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5 years 5 months ago #46321 by sara.anne
I am also "young" (OK, only 76) but I will reply to you anyway!! You are very fortunate that it was caught early, and that it is low-grade papillary. You are also to be commended on going to MSK where you know you will be getting the most appropriate, up-to-date treatment.

You want to be SURE to keep up with your checkups. Bladder cancer is notorious for coming back, and, if it does, it needs to be caught early and STOPPED. It is also unusual, as you know, for it to appear in someone your age.

As for how to deal with it? You just do. I remember when I first got my diagnosis I came home, thought "now I know what I will die from" and cried for hours. Now I am more realistic....over 6 years out and doing GREAT. I usually do not think much about my diagnosis except as my now-annual exams approach. Different people take different approaches to discussing this with friends and acquaintances. Unless there is a need, or you feel that you really want to, it shouldn't have to come up.

I do talk about it, if appropriate, since I want people to realize that it could happen to them and to be aware of the chance. But on a date or at a cocktail party? No.

Wishing you the best of luck, and feel free to ask us any questions you have

Sara Anne

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

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5 years 5 months ago - 5 years 5 months ago #46320 by Alan
As some of my favorite fellow posters say: "Sorry you have joined our club but, glad you found us"! Post away as that is what this forum is for!

Not trying to be trite or using a cliché but, "it is one day at a time". At age 61 and 6 years past with a high grade papillary tumor it is now almost an after thought. Yes, I do think about it often. Then I almost immediately discard it. As a long time traveling salesman I often joked that a I will hit a turnip truck that will end my life driving 30-40,000 miles a year. There are so many friends with worse cancers. A wife of my best friend who is now 57-she has triple XXX invasive breast cancer-very aggressive form. A good friend's son at age 38 dying from prostate cancer. Two more friends, 1 is 40 with aggressive brain tumors. No one is guaranteed tomorrow, living is a risk!. Live and "smell the roses" and be thankful you caught this early. Chances are you will live a long life! In another 3,6,9 months you look back and say-yup not too bad!

BTW, MSK is considered one of the best hospitals for bladder cancer.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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5 years 5 months ago #46319 by vball88
Hi All, I'm posting in the hopes of getting some good advice on how to define the new normal post first round of treatment. Would appreciate any suggestions that anyone has who has gone through this, particularly anyone young with bladder cancer!

My Story: I'm 25 years old, single, female, living in NYC and working in an intense job in Finance. I don't have any of the risk factors for bladder cancer - was having gross hematuria, found out 4 weeks ago about the tumor, 3 weeks ago that it was cancerous. I have had 2 surgeries (1 to biopsy by my urogyno and 1 to remove at MSK with bladder cancer specialist) and have undergone 1 round of mitomycin post-surgery. Since the tumor was a low grade, non invasive papillary carcinoma, I just have to go back to MSK in 3 months (and then subsequently forever) to check for recurrences.

I've had a positive attitude through the last month and have spent time with my strong support system of my family and friends. It all seemed so surreal and I was helping to make sure everyone wasn't too worried and getting all the logistical items in order.. Had so much to do and so much adrenaline.

Now that the first round of treatment is over, I'm not sure what to do.. How do I go on living my life without telling everyone all about my cancer? How can I interact with people my age who complain about their stupid/typical "I'm in my 20s" problems? How can I pretend to be normal and put a smile on my face, go out to bars, meet boys, have fun, etc? How do I not be depressed about all this? I'm participating in a charity event to raise money for bladder cancer in a couple weeks, which made me feel good when all the donations were rolling in right around my surgery time, but now its slowed down.

Any advice, particularly from anyone young, would be helpful..


Participate in a 5K/10K in NYC for bladder cancer!

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