Why I find bladder cancer so difficult

The New York Times article I just posted information about ("Where cancer is the norm", about M.D. Anderson) really hit me emotionally as I read it. I think it was because one thing that has happened to me as a result of my bladder cancer diagnosis (and this didn't happen after my breast cancer diagnosis) is that I feel such a strong connection to other people fighting cancer.

The breast cancer was so much easier--a clear treatment path, clear statistics of what my chances of no recurrence would be (and they are good), an easy follow up path--mammograms every six months. (Granted I had a very "easy" kind of breast cancer, and many do not.) And of course I personally know a number of people who have had breast cancer, that I could share the experience with.

In contrast. my bladder cancer treatment (BCG) may or may not work, and there is no one clear treatment path if it doesn't. And the side effects can be significant, but they are different for everyone, so there isn't predictability there either. And I never even heard of this disease before the diagnosis, much less did I ever meet anyone with it. Thus, I had no people around me who could help me through this like there were for the breast cancer.

And if the treatment is successful, there is the constant follow up (with an invasive procedure in a delicate area) for forever it seems, because of the constant chance of recurrence.

And the bladder is so sensitive, and in the normal course of events has its usual various pains and sensitivities, that every time something "normal" happens there I think "I wonder if this is a cancer symptom." And I have to use the bladder so many times during the day it is VERY hard to forget about it even for a minute. :-)

All these things add up to a really challenging experience in dealing with this. Thank you all for being so supportive and helpful. It makes things so much better to know you are there. I can't imagine having survived this experience without BCAN.

By Annasvenska
Posted October 26, 2009 at 8:59 am
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Thanks for suggesting a wonderful article. The Gi surgeon whom I had recently trained at MD Anderson and he was absolutely fabulous.

As I was reading the article online my 11 year old daughter came up to me and said "I don't think you should read these depressing articles". My kids seems to be doing fine on the outside but my hospital stays and recurring surgeries has been diifficult for them.
They are so consientious about my scar and my youngest was obsessed last summer when I was wearing summerclothes with not letting my scar be shown.
I talk to them openly about cancer and my surgeries but I think that there are fears they have that they kind of have stoved away to the unconsious.
I am just so grateful that my mom was able to come and stay for three weeks as I was at the hospital. She is very close to them and they are very attached to her. I knew she was a substitute mom to them while I was gone.

By vtom
Posted October 26, 2009 at 8:59 am
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I share the same feeling you do about BCAN. Although my BC journey has been much longer than yours - most of the journey I was surrounded by loved ones - but not by anyone who could really understand what I was going through.

Last May when my oncologist said it was time for an RC - it forced me online to ask for surgeon recommendations since the surgeon who did my biopsy had perforated my bladder and landed me in the ER. So last Memorial Day weekend - I ventured online and immediately people came to my rescue - stood by my side - pointed me to an excellent surgeon - walked me through the toughest part of my journey.

It's been only three months since my RC - and only five months since I've been online - but I am so grateful to have found a soft place to land as I hit bumps and potholes on this journey! People who have gone before me - and others who simply encourage me as I go.

May God bless each and everyone online who takes the time to encourage others - even though they are on the journey as well as a fellow survivor or caregiver! It's so true - together we are better. Veronica

By silgal
Posted October 26, 2009 at 9:00 am
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I am crying as I read your post because I feel EXACTLY the same way. I fought an illness before too and it was the same, I had an easy case, there were others, and it didn't have all the components of this one. BC has such different stuff, all of which you described eloquently! thank you! I feel EXACTLY this way!
michelle

By Ciboney1
Posted October 26, 2009 at 9:32 am
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This time is different for me to... I suffered with Ovarian Cancer at 27 when there were no support groups out there. but at such a young age you think you are invincible... I made it thru with the love and understanding of my family and the young physician who found it. His encouragement sure helped me with my struggle..
This time: Bladder Cancer and to have the so called cause from all the radiation I had from so many years ago really hit me right between the eyes.. I am still picking up the pieces from the shock and it has been well over a year since diagnoses and over 2 yrs since I first had symptoms...
With all your support and the dear friends I have encountered here; I have had my struggles but am making it thru... I don't have a RC yet but it is on the horizon..
It just helps to know there are others who can help us by telling their story to us; to make us feel not quite so "left out" and "alone" in the general population who for the most part don't have a clue about Bladder Cancer...

Some here have had more trials and tribulations than I and made it thru; this gives the rest of us Hope that we to can conquer and live on for many years...
Thanks for being here for us....
Arlene

By Memi
Posted October 26, 2009 at 9:36 am
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Thank you, Jan, for the link to a wonderful article and for putting "our" feelings into words. The endometrial cancer seemed to be an "easy" cancer in that it seemed to have and end after surgery and radiation. After a couple of years the check ups became once a year and only a pap smear. That's a normal routine for any woman, if we are blessed with the wherewithal to get them. But, as you said there is no end to bc, short of a miracle. The support of others in the same boat is invaluable and I thank God BCAN is here to provide the gathering place.

Memi

By joybob
Posted October 26, 2009 at 9:46 am
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Well, you said it all. No one knows what we go thru. My friends used to laugh and say to Bob, its no big deal, you put the stuff in and the cancer goes away. Well no one is laughing now. Bladder cancer if it comes back and it does in a large percent of cases, I think it is extremely had to stop it. So we "live" if thats what you call it. And "enjoy" ours days and hope for the best. The stats are really hard to come by because mostly older people get it and you have so many varitables. I discuss this with no one outside of this forum. After over a year I am sure people don't want to hear it anyway. Except for an e mail now and then, no one knows the heartache we are suffering, and my children as well. Joycee

By jj803
Posted October 26, 2009 at 10:10 am
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Thank you for the timely post and just on frequency numbers alone there are far more prostate, breast, and colon cancer survivors out there than bladder cancer. For some reason we are more silent about things, however. The bc people are out there (I have met several in my relatively small circle of acquaintances since my dx). I at one time proposed that it is because we are so highly tilted to older men, but then how do I explain the visibility of prostate cancer (maybe it's the fact that there are 4x as many new cases/year). I encourage you to allow others, those "in person" friends know and allow them to help you through the difficult times. Be a little forgiving of their foibles. They are going to say " you look good". That's not a slight. They don't know what to say and they are trying to help. I still hear it every day. Personally, I love it as I never heard it before bc. Many of your friends and acquaintances are genuinely concerned and want to help. If you can, let them, it's good for you and them and builds awareness of the disease. As Joycee notes, bc is a big deal, invasive or non. Friends need to know you're afraid and that bcg for bc is not the same as an antibiotic for strep throat. I am grateful for our online support group and happy each time I hear of a new bc specific support group arising. As those who attended bc specific sessions, it is a huge boost to understanding and empathy. It is much harder to sift out the positives of a general cancer support group unless there are bc members willing to share. In some it's all about chemo, chemo side effects and how to manage them. Frankly, for me those were a little frustrating both because we had little to offer to one another and my own guilt at not having to have chemo at this point. I do regularly attend on fairly large general cancer support group. It is a faith based group and has a wide variety of folks (mainly breast and colon), but many others as well. They average about 50 at each meeting and 1/3 of meetings are informational which I find fascinating. There is at least one other advanced stage (=pT2 or greater) bc survivor there and he contacted me after my first meeting. I think I've lost where I was heading with this so I'll quit with a summary. Thanks for the post, keep up the good online support, don't abandon the thought that there is other support available. Best to all,

JJ

By mrr3rd
Posted October 27, 2009 at 12:01 pm
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I myself have not had Bladder Cancer. However I am dealing with cancer in the pubic area. This is my second rare cancer in five years (just had my five years all clear for my first cancer). Now almost five years to the day I was diagnosed with another very rare cancer, one operation down and I now need to have lymph nodes removed to check for cancer cells (if they find them then they remove all of the lymph nodes in the groin). I always keep a positive attitude as this definately aids in the healing. I also found that my oncologist in Boston wants me to have myself tested genetically for the cancer gene. Now I don't mind it myself, but he also said my 13 and 15 year old boy's should be tested. This has really scared them, they have been dealing with the fact that I have cancer again very well until this point. We fortunately see a very good therapist (appointment this saturday) and they want to talk with him about it which is good. I have shown them the posts here and we now talk more openly about it as they know now more than ever there are other families in similair situations. I believe it is important to remember how much this affects the whole family, my Doctors fortunately do treat the whole family and not just the patient. I am very lucky to have found such a wonderful site, with all of the awesome people and support that is here!! Thank You, and you are all in my prayers!!

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