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Seeking Support
Hi,
My name is Joe, I am 59yrs old and I have been recently diagnosed with T2 muscle invasive bladder cancer. I am having trouble coming to grips with my diagnosis and am having many emotional issues like anger,denial,fear and a host of other feelings. I am feeling really hopeless when I look at the options I am given, particularly having a bag. I am seeing a oncologist very soon about the possibility of a chemo/radiation to spar my bladder. Just looking for support and any experiences others have had with either procedure.Any help is greatly appreciated.
Thank You
Joe
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15 Replies
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Joe, did the original urologist give you the diagnosis of Plasmacytoid Varient Bladder Cancer? His “80%” rate might not apply if he had known that and thought he was treating a less virulent cancer.
With this more complete diagnosis, it is possible that your insurance might approve an out of group treatment. Also, isn’t insurance sign-up about here?
Could you change plans?I agree with George….
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Joe
I am indeed sorry that you have this diagnosis. The gut punches of bladder cancer keep on coming.
I am NOT a Dr. so , please take this as laymans advice.GET THAT BLADDER “OUTTA THERE!”
If that sucker is bad….. The cause has to be removed.
My plan is tho use the aggressive attack that the University Dr has recommended but see if a Dr in your area can do the job in your insurance plan.
Remember…. You want an assembly line Dr that has done HUNDREDS!(Seen it… fixed it!)
Wishing you the best.
George
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]
Sorry I didn’t know.
Well I had my consul with the Urologist head at OHSU and he informed me that I have a very rare form of cancer called Plasmacytoid Varient Bladder Cancer. This isn’t just any old bladder cancer. This is high-grade, very aggressive stuff with a 50% survival rate of 24mo if treated aggressively, so I’m assuming the other 50% fare a bit better. It starts with 3-4mo of chemo followed by RC.If anyone needs some good reading, Google this rare bird.
Feeling a little disheartened today. He also mentioned my insurance isn’t very cooperative when it comes to out of network services as we have a good cancer center there. Only problem is, the urologist at that institution said he could give me 80% cure rate with bladder preservation.What does one do?
Feeling a bit confused but no big deal as I’ve felt this way since my diagnosis.Thanks for listening
joe
Joe, I am sorry but I had to delete your post. For security reasons for our members, we cannot allow posting of contact information. Sorry.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hi Joe.
I live in Oslo, Norway and had my bladder removed some 10 years ago.
I was so depressed when first diagnozed. Actually I did not care about diversion or other things. So the UROs convinced me that having a bag was the best alternative.
At first it was uncomfortable to have it and it bowled out suddenly at an airport so I was taken aside for checkup. And at that time I felt that I had chosen the wrong diversion.
Over the years I have become used to live with my bag on my stommack and it does not prevent me from doing most things. I still work, travel etc. Only thing I don’t do is jumping into the swimmingpool with it.
I wish you good luck with your surgery, and please let us know how things work out.
Sincerely,
Knut
Diagnozed first time April 1th 2004.
Muscle invasive, T3A.
Radical Cystectomy June 29th 2004.
Illeal conduit. Bag on my stommack.
When you have th results from the urologist at OHSU, tell him your insurance problem. Also, bring a list of doctors n your plan….he could even recommend one of them if necessary.
SA
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
I just posted on another thread an article about diversions. Pretty straight forward: http://my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_Diversion.
I am also going to post a file that I thought I had lost. It is almost too involved but, does give you questions to ask:
preopquestionsforRC.doc
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.
Wow, a lot has happened in 24hrs. I have a consul with OHSU Knight Cancer Center in 10 days with the head and chair of the Urology Dept to look at my options. They are out of network for my insurance so I’m hoping the mentioned Usual and Customary fees can be manageable. ANY IDEA ON COST FOR BLADDER REMOVAL AND DIVERSION? PLEASE! I’m worried this could get very expensive but I need to feel I’ve made the right choice. I guess I’ll just try and find as much info as I can and make a decision.
Can anyone please give me their brief thoughts on the various diversions. Pros and cons of each:
Much appreciative of the support here.
Today has been a much better day!
THANKS ALL
Joe, you MUST have a surgeon who does more than “one about six weeks ago”…. One number I have seen thrown around is about 50 a year! It almost seems as if the he is recommending (and it is the simplest) might be the only one he knows how to do.
George gave you some good advice. You need to consider all the options and decide for yourself with the help of your doctor which is the very best for you and for your future.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Thank you everyone for your responses. This is giving me hope. If I elect to go to OHSU,this would be my third urologist and final change. I want the best care I can receive and feel the university may provide a team approach, which is what I’m looking for. I know I need to get with it as my diagnosis was confirmed 10 days ago and my urologist is kind of pushing me. I’m not sure if my insurance will allow me to go there,particularly after changing urologist twice now, but I am planning to call today to confirm.
I just feel that the DR is very busy and doesn’t have a lot of time to spend with me. The first one referred me to a colleague to do the biop without any pre-op consultation, which concerned me, so I got a referral from my new primary care physician to the second urologist that I’m currently with. He performed the biop and briefly explained options. When I asked how many stoma surgeries he has done, he didn’t really give a solid number but I felt this was his personal choice. He did not mention having done any bladder reconstruction, which now after conferring with him, I’d like to explore as well. We did speak of a bladder spare and he said he would have a radiation oncologist contact me yesterday, which he never did. The other issue I felt uncomfortable with was I asked to speak with any current or former patients and he said, “I have one who had removal about six weeks ago”. I was hoping he could provide a small list of folks who are in the world, living with there change.
The diagnosis is confirmed, now I want someone who will explain my options and help me make the right choice for me. I need to feel confident in my care and get moving. I have not felt that emotion from the professionals I’ve seen. Seems more like an adversarial relationship….not good I believe.
Let me be confident in my care and I will take it, hook, line and sinker.Please help
Joe
Joe
I was given a couple of choices when I had bc. My cancer had not yet perferated the bladder so I did not have to have any chemo.
They removed my bladder and prostate and I have a neo bladder.
I took a long time to adjust to my “new me” and I still have a few leaking issues. But I am alive and aside from a few inconveniences….. Perfect in my own mind.There are different procedures to be considered. They should be laid out for you and when the Dr suggests one in particular, Ask him why he chose that one. Like every person is different, so is the way to handle this disease.
What ever way you choose, make sure that you and your Dr are on the same page about aggressivly attacking this disease.
Sincerely
George
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]
Now is the time for you to step back and make some decisions. You say that your urologist wants you to “have a bag.” Has he told you WHY he thinks that this is the best option for you?
OHSU has a very good urology department….I would strongly urge you to take the time to schedule a consult there. My urologist (at St. Vincents in Portland) trained at OHSU. He has told me that if it ever comes to bladder removal he would INSIST that I get a second opinion. Whatever decision you make will be one you will live with for a long time.
Best of luck to you!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hi Joe.
I had my bladder remove in September 1991. Was biking, swimming, running and working in Nov of that year. Will be 70 next month and still working as a land surveyor. Joe, the bag is not as bad as it may seem to you now. Very few people know I have it.
Think positive and it will work out for you.Earl
George,
Thank you for responding. My urologist is recommending bladder/prostate removal with bag. He was referred by my primary physician. I live in Portland, Oregon and was thinking about going to OHSU Knight Cancer center to see about neoblatter but not sure which way to turn, but he is kind of pushing me to do his procedure. Can tell me what route you chose, why and your curent status.Thank you for the support, I’m in serious need.
Joe
Hello Joe
I am sorry to welcome you to our little support group. Wish you didn’t have to be here.
I know that when the cancer thing is mentioned, it is a punch in the face for sure.
And You are facing a fight ahead, for sure.
I am sure your emotions are in turmoil, and that is VERY normal. Angst and depression are a normal reaction to the “c” word.But You have to keep your focus UP. The fight is on!
First……. make sure you are at a facility where they KNOW bladder cancer. You need a Dr. that really specializes in bc. Not just any guy that has heard of bc.
You need an assembly line guy that has seen so much bc and has seen every complication and knows how to deal with it. And the hospital must be there for you too.If you tell us where you live, there are people who can direct you to a great facility.
As for bladder sparing……. “Forget about it!” If that bladder has to go…. “Let it GO!!!”
I want you to live!It is OK to have some major mood swings going on. I did! But the eye must be on the prize of living! I don’t have my bladder anymore. Haven’t had it for six years! And yet I still play golf, ski, drive a racing car and maintain a stressful job owning an automobile dealership. Life goes on! But you are going into a fight for yourself…. Don’t worry about the fluff and drama. You want to LIVE! So do we.
Please come back anytime. We are here to listen to your anger, fear, worries, and general questions. It is OK to express anything here. That’s why we do this.
Sincerely
George
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]Sign In to reply.
