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New here
Posted by StarraeAday1 on August 11, 2009 at 1:48 pmHi Pat and everyone,
Thanks Pat for sending me an email, but it disappeared after I read it. I hit the wrong button I guess. I live close to Atlanta, Georgia. I saw a oncology uro specialist yesterday, he said I was a T2 and the tumor was aggressive.Said my CT scan was clear so far. That I would need surgery in 7 to 10 weeks. He wants to set me up to have a stress test and to see a kidney Dr. since my creatine was a little high. This Doctor sees a lot of these cases I just not sure how to check Doctors backgrounds, I don’t feel like a have a lot of time to get everything in line. Any advice would be helpful.
Lynn
mmc replied 15 years, 6 months ago 8 Members · 20 Replies -
20 Replies
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Lynn,
I was in ICU overnight after my neobladder surgery so I guess that was about 6-7 hours.
The 7-10 weeks is a long time. It is important to do your research on the options and get the 2nd opinion (GREAT that it got moved up to earlier) but it is also important to move quickly depending on how aggressive the BC is.
You will be in good hands at Emory. I’ve found this site to be a great source of information and inspiration and hopefully you will also.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Hi everyone,
Well, after talking to you all and my brother and several friends, I didn’t feel quite right about the Dr. I saw this past Monday. So I called a specialist at Emory today and made a appt. They gave me an appointment for Sept. 9, but my GP called and they gave me a sooner one for this coming Tuesday. Turns out the first Dr. that I talked to was not going to do my surgery, that a Doctor he had hired and who is in transit was going to do the surgery, thus the 7 to 10 week waiting period.
My GP also made a appt. for a stress test and a kidney Dr. so I feel things a advancing forward a little more. My GP also gave me the number of a cancer navigator, she said they help pay co-pays and the service is free, so I am checking into that. Just thought I would update everyone, I am still planning on coming here and asking questions. Everyone here has been a world of help to me. Thank you.Lynn
Sunflower,
Sometimes the doctor is not aware of the problem. He sees the patient the staff is supposed to take care of paperwork. If you are not getting referals in a timely manner you may consider leaving a message for the doctor. Sometimes they are unaware of the problem.
If it continues to be a problem you may have to consider a new doctor. I know this is a scary time and the last thing you want to do is find a new doctor. I had to find a new GP during my journey because the one I had was jepordizing my future.
Wishing you a fast response from your doctor.
Webs
Sunflower,
Don’t be shy about calling your medical office and pestering the powers that be so they take action and get the referrals you need in a timely way. This is your story…you be the author…you call the shots. Many in the medical profession mean well but they sometimes need some reminders. We don’t often want to be a pain in the butt, especially if we like a particular doctor of office, but sometimes it is necessary. Luckily, I didn’t need to get referrals but I often called the doctor’s offices for other reasons…I’m sure some of them considered me a nuisance but that’s OK. I’m alive to tell my story. :)
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightGuestAugust 13, 2009 at 2:16 amAt the time, We had to get the referrals but it was handled seamlessly and swiftly in my case. Once i was handed over to the uro who did the surgery, my gp was essentially out of it. Although he did stop by the hospital, the uro/surgeon did everything including the hospital visits. never went back to the gp except for regular checkups unrelated to this.
You have to have a sense of humor when you’re not sure if the puddle on the floor is you or the dog! Fortunately that will pass too!
Believe me when I say, you all are a blessing to me, it helps so much to read about your experiences and know that you survived it all. You all have kept your sense of humor which I love.
One thing I wanted to ask you all, did you have problems getting Dr.s to call in referrals. My insurance needs me to get a referral from my GP, then sometimes they say I need to go through the specialist, then the specialist sends me back to the GP. The whole time I am having to check and be sure they are in my network. I can feel the time is ticking away.I am doing this alone so suggestions will be appreciated.
Thanks to all of you!!
Lynn
Sunflower,
CLUCK CLUCK !!!! I am the BIGGEST chicken I know about so the others are right, it isn’t about bravery, it’s more about finding a strength inside of you that you never knew existed. It is there and you will find it!
It’s about remaining calm in spite of the ugly news, asking enough questions, doing plenty of research, recording information, pulling together a support group, and, for many of us, also includes lots of prayers, prayed by ourselves and by others who love and care about us…so we assure ourselves we are going in the right direction and making the best decisions possible for us.
DO NOT RUSH into surgery too quickly…You want to ensure you have enough time to make good judgement calls, so take a deep breath and know you are doing just fine with time, given what you know. When I first learned I had cancer, I got anxious because I couldn’t get an appt. with the surgeon and I felt I needed something to happen immediately…early on I was in a mild state of panic. As it turned out, I was stage 3 so I was given chemo first so my surgery was actually delayed five months.
It’s about joining the forum and finding that you are not alone…that so many have already walked this path and have tons of valuable info. and wonderful support to offer you. Of course I could say lots more, but that is why I put together my own website which I invite you to visit…just see the link below my name. Sending hugs your way.
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightLynn – just as Cynthia said – we are no different then you. We were all frightened. We were no braver then you. We chose life. You need to know that you will get through this.
I also had a epidural for pain management. I highly recommend it. It really keeps you pain free – had it for several days. Be sure to ask about it.
Let us know how your appointment goes at Emory. Take your list of questions!
Gracie
BRAVE? GUTS? WHAT? I am your typical BIG guy! I was a WRECK! 6ft3in, 225lb GO TO guy…….. Dr says “you have cancer”…… Giant bowl of Jello!
We are and were JUST like you. We were reduced to the very core! This is not about bravery. This is about attitude and determination! You WILL overcome this thing and soon you will be writing to us about how you found so much strength in yourself.
As for the ICU experience…. I was in an unusual post surgery place. I was put in a special 6 person room with 3 special nurses who monitored us constantly. I had a morphine IV and a pump. I never hit the pump. I was stoned out of my mind for a full day. My wife said I kept the nurse staff entertained with my vocal antics. The one day I remember in that room was the 2nd (they took off the morphine pump) and I was able to react. I felt so well cared for in that room. Then, on day 3 I was moved out of the room to make room for a mototcycle rider who used the road surface to exfoliate. The staff frim that room all came to my new room to check in on me, saying that I was moved too soon. :angry:
I know this sounds glib, but, You will find the strength and the will to get through this process. Because the end product is so worth it. There will be heartaches and worry, there will be some pain. You will Conquer this and you will LIVE. there will even be some VERY GOOD things that come out of this. You will find a zest for life as you never knew, you will find strength in friends and family that never existed before. You will also find that some cannot handle the disease (don’t hold this against them, they have other strengths). You Will survive, and you will look at those 7-10 days in the hospital as the best diet you were ever on! Jenny Craig couldn’t lop off pounds like that!:lol:
You are now among friends. Friends who have been there. Friends who know that it’s OK to be afraid. Friends who you can be non judgmental and caring and strong at the same time. Don’t be afraid of one thing….To ASK. Even the craziest question is OK We’re here, we’re a little scared still, but we will survive, and we won’t quit on you :lol:
Now, Get your back up, clench your teeth, and Go! By the way, it’s also OK to get REALLY REALLY Pissed off. Pun also intended. :silly:
Sorry for the crushing word count, but this is my arena.
Sincerely
George Kline
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]Sunflower,
I always smile when someone calls us brave. The truth is that we all do what we have to it is not as if we had a choice.
It is a mind set really. You take it a day at a time and tell yourself you are one day closer to being through it and back to your new normal.
Take my word for it if someone had asked any of us if we would rather have surgery and treatment for cancer or go on a vacation to a tropical island you can bet your house on what the answer would be.When this was new for all of us we were just as scared as you are now. When this is all said and done you will be right here with us telling the new kid on the block the same things we are telling you now.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer SocietyGuestAugust 12, 2009 at 3:14 amYep…bowels woke up on Day 5…they gave me some god alful soup and i guess they figured i kept it down so they sent me on my way. They did advise that i stay at the hotel on the hospital grounds for a few days and a stoma nurse came every day to make sure i understood the routine. Environment prabably more sterile in the Hotel than the Hospital!!:unsure: :S
patGuestAugust 12, 2009 at 2:56 amForgot the pump, huh? Well, once they forget to order a refill for my pump and had to give me a shot of delauded or something that sounded like that. It sent me back to the 60’s :laugh: Wonder what stuff we don’t catch? Now that is scary.
Pat, out in 5? My bowels didn’t wake up until 10. They threw me out a couple of days later. I barely got to order the good food again. Excellent food at the hospital. Would almost pay for it!
Dear Sunflower,
I agree with the rest I was scared silly. I was so scared I did not do enough research before going into surgery. Know about all 3 diversion options. Make sure you keep asking questions until they are all answered. Do not let them make the decision for you. You are the best judge of what you want to live with. When you finally make that decision take a deep breath and know that you made the best decision you could.I was in ICU for 1 and 1/2 days. Turns out some moron forgot that I had an epidural for the pain and didn’t order the pump to attach to it. Then the first machine they brought after that did not work. By day 3 they had me up and walking. It took 10 days for my bowels to wake up so I had a long hospital stay.
If you have any questions feel free to ask. By the way I am female and at time of diagnosis I was 38. ((Hugs)) We are here for you.
Webs
GuestAugust 12, 2009 at 1:55 amWhat backbone..? What courage?…..I was just as scared as you are now but as Lee said….the alternative was not acceptable. I did my homework, had a great surgeon and a fabulous support system.
I was only in ICU for a couple of hours…..then right to my room with a morphine pump which didn’t work. Its also actually been proven that females do not react to morphine as well as men……interesting huh? If i would have had a choice i would have gone for the epidural. Many places use those now. By the second day i was up walking…no choice…they make you. By day 3 I was able to manage the pain…….Day 5 they sent me on my way!!
Honestly its just a bump in the road.
PatGuestAugust 12, 2009 at 1:23 amHi Lynn,
I got a neo about 18 months ago. My wife says I was in ICU 3 days. It didn’t seem that long to me. For pain control I had an automated epidural during most of my stay so I really had no pain for the first 10 days. After that,all I needed was vicodin for a couple of days and then discontinued all pain medication
There are some folks who had the morphine along with the ability to dose themselves and were happy with that solution. You might want to ask what he has planned for after the ICU stay since you seem to indicate the morphine is just for the ICU.
Backbone and courage? Just think of the alternative. Whatever they throw at you, it sure beats the alternative. They are throwing you a life preserver, grab it, hang on and don’t sweat the bumps and bruises you’re going to get along the way.
LeeH
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