I was diagnosed with TaG3 BC in mid May. I think I know how you feel and for what it's worth, I waited until I had the pathology results of my first TURBT before I told my 28 y/o son; then, I waited until I had the pathology report of my second TURBT (was done about 6 weeks after the first) before I told my siblings.
I wanted to have a confirmed diagnosis and an agreed to treatment plan defined before I said anything to my siblings. I also wanted to be able to answer their questions honestly and intelligently, and to be able to reassure them that they didn't need to worry about me. It worked out well for me, but they all said "I wish you told me sooner". Despite their wishes, I'm still glad that I waited to tell them because it gave me the time that I needed to personally digest and research my diagnosis. This way, I was able to share information and statistics with them about the treatment path I was on, and reassure them that for now, I have it under control.
Take care of you and keep us posted,
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.
The folks who have responded have all helped me along the way and they are a great support group. I have friends that have or had cancer and post it on facebook and use that as their support system. I only told family, work colleagues and very close friends. Like you I didn't want people to treat me different. Once you get your diagnosis and treatment plan I found that if I educated not only myself but the people close to me that put them a little at ease.
Doug doesn't really like to discuss his bladder cancer with anyone beyond family and close friends. My advice -- share it with whom you wish and when you are ready. It is okay if only the important people in your life know about it. You hit the nail on the head -- "I don't want that to be what people see/think about when they talk to me." His thoughts exactly.
Thank you all so much for the encouragement. Also glad to hear MD Anderson is a good choice. Yes, I'm getting the message that I need to view this as a journey. I will tell others in time, but for now, it seems right to keep things low key - at least until everything is sorted out. So many questions! But I'm sure each of you has been in the same information vacuum that I'm finding myself in now, although this site has been quite helpful already.
3 years 9 months ago - 3 years 9 months ago#49234by Alan
RD and Sara Anne have given good insight. My 2 cents worth is always one day at a time-as that is all we can really control plus you don't have a full diagnosis yet. Also, everyone is different in their situation and makeup. You will intuitively know who to tell & what is best for you and family plus that can change as you journey through this. For me, I told a plethora of friends and family initially as I figured prayer warriors, advice and other support would be good but, that is me. I also learned to live and move on. People on this forum will be here to listen, encourage, advise (non are doctors) to any question, rant etc you may have.
Also, MD Anderson is one our country's BEST cancer hospitals and is my backup if need be living in New Braunfels-which is 2.5 hours away. Doctors Kamat, Denney, Grossman among others are excellent in that department!
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.
So sorry to hear that you are joining our group! Not that you aren't welcome, of course.
From your report, I assume that you haven't had a TURB (transurethral resection of the bladder...ie, biopsy) yet? You really won't know exactly what the situation is until this is done and you have the pathologist's report. MD Anderson is an excellent choice, BTW.
There is not much point in discussing the situation until you have the final diagnosis, because things can be different than they seem now. Once you know for sure that you have bladder cancer, and what its stage and grade is, then you can make those decisions. Your family and your children can be a great support system for you. And if they are NOT well informed, they may not trust you again!
I have a dear friend whose kids (grown adults) never tell her any of their health issues "because we don't want you to worry." So, she worries all the time and is never sure that they are telling her the truth! Likewise, she won't tell them anything because "she doesn't want to worry them." Need I tell you the result of all of this dithering around? It is a deeply personal issue, and one that you must be comfortable with, but I would urge you to think seriously about it.
Bladder cancer CAN be treated. You will read about many others on this Forum who are leading very full lives after their diagnoses. I wish you the very best of luck.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society