wind out of my sails

Hello George,

Your head being screwed up with negative thoughts is unfortunately not going to ease overnight. I assure you though you will come to some sort of acceptance. In time you will turn the negatives into positives and they will become passing thoughts which are easier to give a kick up the arse.

I am glad you had the information over the telephone as waiting so long for an appointment would only add to the stress. Here in Holland and Belgium they refuse to give this sort of information over the telephone and we have to bite our nails until appointment day. They prefer to have face to face appointments with important and upsetting results.

My RC will be one year ago this coming September 14th and I was given a 15-20% five year survival chance. Every one of us has differing cancer journeys and the reason why I don’t rely on statistic information. I am doing well and every four months I have CT scans to check for any spread. The next one will be at the end of August and fingers crossed it will show nothing.

I had my chemo after the RC because of the positive nodes and I really hope that any cancer left would have been zapped….

Many people have survived years with a poor prognosis and together in this community we can only be stronger. Any new treatments or trials are highlighted by our wonderful queen of research Pat.

Taking a back seat as you know is not an option in this fight we have with bladder cancer.

Please let us know what the oncologist plans to do for the next course of action….

We are with you here at the forum and more than happy to help.

Leigh

Leigh,
Thanks for the supportive information. How long has it been since your RC? Seems like you are hanging in there real well.
I was really glad the Doc called me on the phone rather than me waiting a week for an appointment. I thought it was really professional and personal of him to call me at 9:00 at night to tell me. He stayed on the phone as long as I wanted to answer all my questions at that time. I really respect him for that.I did ask him about why he removed only 4 lymph nodes and he said he would have had to do a lot more damage inside to get any more especially with that glue like substance. From what I have been reading they can not tell exactly how many they are removing at the time. Right now my head is so screwed up I can't think straight. All I see now are the negatives, but I'm sure there are some positives...I Hope.
Thanks all, for all your responses,
George

Jeff,

Yes, lately there has been more than a few posts of not so good path reports, we are after all dealing with cancer. All varieties of bladder cancer require diligence with check ups for life. Frankly - it stinks.

And yes, there are some who have done really well squaring off against mets and recurrance where invasive bladder cancer is concerned. I believe Karen Greene (one of the photo survivors) had mets in 1999 and is surviving. So is a lady named Hildegarde - she posts on the email list for ACOR. Patricia has had her indiana pouch and not had recurrance or progression for just over 5 years now. That is to name just a few. My point being that we are all survivors - some do have long term longevity.

Bladder cancer can be unpredictable and I think we all have experienced anxiety be it waiting for test results, feeling fear over every little pain, seeing a fellow forum member face recurrance - they all contribute to the anxiety,too. The fear of recurrance is something all cancer survivors deal with. Keep posting - it helps most of us cope. And keep being diligent - I believe those with the best longevity get their check ups to catch things early.

Take care and keep posting, Holly

Dear George,

I am sorry to hear your news about the pathology report.

Please take the time over the coming days to let this news absorb and let your natural emotions develop. You are still in recovery and need to heal physically and emotionally.

I was still lying in a hospital bed recovering from my RC when my Urologist broke the news of 17 positive nodes. It slapped me in the face big time and I just wanted to curl up knowing that my future prognosis was poor.

George I am still here and fighting fit and doing everything and more that I did before the RC. Yes those deep thoughts are with me at times and I kick them back each time they appear.

You said yourself that you came through the operation very well and feel pretty good considering you had an RC just over a week ago. While you have good health, please do everything you can to fight and survive.

You really do have so much to look forward to although you are blinded at the moment by this news. There will come a time in every ones life to lay our heads down and I believe now is not that time. Please use every recommended treatment possible to fight and control it.

Just curious:

I am surprised the Urologist called you on the telephone to go over this type of news with you and did not invite you in to discuss things face to face. Is this normal practice in your neck of the woods?

George, the sticky glue substance probably caused by the chemo… is that the reason a more extensive lymph node dissection did not take place?

Take good care....

Leigh

There has been a lot of really rotten news on the forum recently. I am wondering whether to get CTs 3 months post op or forget it until later, like next year! Seriously, I have read a lot of encouraging mets cases in here wherein folks live on and on after chemo or successive chemo and radiation. It's hard to be able to get a clear view of all this, the posts aren't indexed (no criticism, who would have time for that?). But, maybe some chemo stalwarts could come forward and post their experiences and longevity again for those of us that are scared shitless about the future.

Pat,
I'm in Pittsburgh at the Hillman cancer center. It really is one of the top cancer centers in the country. I do have one of the top oncologists there. I feel comfortable in which ever way they want me to proceed. I just realize there is no positive outcome to be expected and how ugly this is going to get. Your right about taking some time for this to settle in. I've been around so many people who have had cancer and saw what they have gone thru. I just don't know if it is worth prolonging the inevitable.
Thanks,
George