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12 years 11 months ago #11060 by Rockyiss

Hi Banx, I just wanted to let you know I go to John Hopkins and see Dr. Schoenberg also. One of the things I like is they give you phone numbers and you can also e-mail any questions you have and they get back to you in a timely manner.Thats something it seems alot of people seem to have a problem with their Drs.is hearing back from them. God bless and I hope it goes well for you. Rocky

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12 years 11 months ago #11050 by Dixie
Just wanted to let you know none of the questions you asked me are upsetting. I really want to answer as many questions as I can to help you.
I don't know if I understand your question totally, but are you asking me do I worry about the Ca coming back? Sometimes I do but it gets less and less over time. I just had my 50th birthday and I was so happy to see it. I feel great about having a long term survival. My life is pretty much back to normal other then I don't have as much energy as I use to but close. I am about 15 lbs. heavier since my diagonosis 2 1/2 yrs. ago so I am blaming my energy lost on that. I can't seem to loose the weight. My oncologist recommended Weight Watchers diet. He said a lot of breast Ca women gain weight also and that it is the best diet. Also, he wants me to be careful with doing anything different to my body until I hit the two year mark. I mean by taking any pills or vitamins or having any procedures done.

Or did you mean am I sorry I had the surgery and have to live the rest of my life with a neobladder? I really didn't have a choice not to have the surgery because I would of died. I almost decided not to have the surgery and just let myself dye but I got the courage to go through with it. Thanks to all my dear friends, family and that man above. I am so glad I did,it wasn't nearly as bad as I thought it was going to be. And yes I would do it again. I truely feel I have been through the worst part and am looking forward to enjoying my life.

You ask if the Dr. gave any advise on how to stop the Ca from spreading. Did you mean from coming back? As of now I am Ca free according to my path reports post-cystectomy 18 months ago. I did ask him about that pill that they are working on for Bladder cancer pts. to take from preventing it from coming back just like breast Ca patients. It probably won't be out for 4-5 years which will be too late for me. That is when he said I only have 6 months to go, if the Ca is going to come back according to studies that have been done.

I also try to stay pretty fit. I am back playing tennis 2-3 times a week mixed with walks and aerobics once or twice a week. But still can't lose the weight. My diet is good sometimes and then I start into my old habits. My plan is to try Weight Watchers soon. Not only to lose the 15 lbs. but so I eat healthy.

I feel like I have been given a second chance but haven't figured out why yet. Hopefully, I have answered your questions.
PS It sounds like you don't have to worry if your MRI came back clean

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12 years 11 months ago #11042 by Joey
Fear and Fight thanks. How often do you have your follow ups? You seam to be doing well even though from the little I know your cancer was pretty invasive, into the bladder wall correct?

It was amazing how good I felt when the MRI came back clean. It took my mind off of the TUR and cancer still in me at least until Monday.

Thanks Joe

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12 years 11 months ago #11031 by fearandfight
banxs no Dr can tell you how to keep cancer from spreading, they can only treat you what you have at the time. Dr Schoenberg is a great Dr and Hopkins is a great hospital. So you know I had a muscle invasive T2 G3 and I had the pre-chemo then the surgery. I chose to go to the Univ of Penn a great hospital in Phila and I had Dr. Malkowicz also a great surgeon. You are the patient so it is up to you to decide where you want to be treated. Hopkins is an excellent pick but for me I was born at Penn my father was a Veternarian up at Penn for 47 yrs so I knew this hospital well and as I said it is close to me and a very good hospital with a great reputation here. I went for the Neobladder but my surgeon bumped into probs not his fault things inside me he didn't think it was the right thing for me at the time. I have the Indiana Pouch which was my second choice no leakage what so ever and I am satisfied with it. As of today I am cancer free and my surgery was 6/20.
But banxs in order to treat this disease you are going to have to get different tests so the Dr knows how to treat you. You gotta hang in there and if you choose Hopkins then that is a good pick. Good Luck To You, Joe ;)

***Long time no hear from how you been Dixie sounds like you're doing well. Take Care, Joe

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12 years 11 months ago #11030 by Joey
Dixie, thanks for the respons, that sounds great. I am so happy it has worked out for you. I am always thinking of the worst so I was wondering do you feel good about your long term survival after having the surgery? From the little I know, the surgery is a must for survival. Did the doctor give you any advise how to improve the chances of it not spreading. Diet etc?

Sorry if I upset you with these questions.


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12 years 11 months ago #11023 by fearandfight
banxs it's normal to be worried when you get dx with BC, we all been there. Until Monday try to keep busy and keep your mind occupied not easy but that's all you can do. Find something you like to do. Dang you are going to have a heart attack before Monday at this rate you have to take this one day at a time. Best of Luck, Joe ;)

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