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I’m NUMB!
Cancer. Invasive. Bladder removal. 80% still alive after 5 years.
My specialist was afraid that I didn’t hear him, but I did. My son and his wife and one of my nieces was with me, but I went in alone to get his report. He told me I could have two people and I couldn’t bring myself to leave anybody in the waiting room alone. I knew that I could control my emotions, but I also didn’t know how well my family members would be able to control theirs and I couldn’t take that right now. Now’s the time to collect information and make decisions. Time is of the essence. I just can’t let the flood gates open. God has to know that I’m not prepared to handle this even though my family and friends have been told and are offering to be there for me, they really don’t know what to tell me. My son, who’s 30, just got married in November and is trying to move from my home to the house that he and his bride have purchased and this diagnosis has put a damper on all of that. I don’t want to have to say that this disease has invaded my life and that I may not have a bladder in a few short weeks & have to wear a bag, or even worse, the cancer may be found in other parts of my body. So, I really don’t want to talk to anybody else right now. I have to wait until next Wednesday to get the scans (CT & Bone) done and the Wednesday after that to get the results from the urologist/surgeon. I may not be alone, but I feel that way right now…..and I’m numb. I haven’t cried yet, but that’s coming too.
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12 Replies
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Here is a good article in diversions: http://my.clevelandclinic.org/services/urinary_reconstruction_and_diversion/hic_urinary_reconstruction_and_diversion.aspx
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.
Yes
We are now in this with you. Can’t get rid of us now.
Sara Ann knows her stuff.
Please follow her lead to a bc hospital that manufactures a cure as a regularity.
Don’t let someone experiment on you.
You want someone to follow a proven protocol and save your life!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]
This is the time for a second opinion, AT A PLACE THAT SPECIALIZES IN BLADDER CANCER and that can offer options with regard to types of surgery. I know of no “alternative” treatments that have any effect whatsoever at this point. The advice you are getting here is right-on. You need to find a place that does LOTS of these surgeries. For-profit CTA is, IMHO, not one of those places. If you can do it, places such as Memorial Sloan Kettering, Johns-Hopkins, USC, MD Anderson…and there are dozens of others depending upon where you live. Check out the Treatment Finder on our front page.
While time is of the essence, you DO have time to seek a second opinion (which may very well agree completely with your current uro…but you will feel much better knowing that).
We are all with you in this!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Rheba
First of all, Catherine is right about the neo bladder being a “guy” thing. It appears as though this may not be the best thing if you have to have your bladder removed. So follow her advice for all things female.
But! bc does not discriminate with gender. You need to get that cancer out! If they take the tumors out and you go back and it is NOT muscle invasive and you have clean margins……. Yo can have BCG treatments and keep your bladder.
If they find ANY cells with cancer…….. Get that ugly bastard out of there!
If it has been muscle invasive and they need to use Chemo or radiation, that will usually come first and then surgery. The type of diversion is up to you and your “EXPERT” Surgeon.As for “alternative” care. I have only one thought. bc is a very aggressive cancer. Once it gets out of the bladder, it is big trouble! If you think of the environment that it lives in….
If the Dr. start talking about “alternative medicine” and saving your bladder? Get to a bladder cancer hospital for a second opinion…… NOW!
I know that some people are attached keeping their bladder….. It is an ugly organ and if it needs to come out…..IT NEEDS TO COME OUT!
We have all watched with concern as someone searched for “someone” who would give them any hope of keeping their bladder. Time is not on your side with bc. I went from…. You have some blood in your urine to Bladder removal in 60 days! I may be an exception, but I didn’t want to give those little cells a chance.As for the chance of infection after RC…… It is a possibility. You need to go to a place that has seen it all and can take measures. I mean…. A Surgical bc assembly line. I want you to have a Dr. who has seen every bc scenerio and is prepared to deal with it all.
Please find a bc specialist who will take care of you. Will be aggressvie and get rid of it.
Oh, I am not perfecr in every way. I still think about how this disease changed me….. every day. I have some incontinence at night. I have some trouble “going” at times. But this is a small price to pay for Living.
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]
Hello Rheba… What an impressive itinerary you have ahead of you! George is right, you need to get busy kicking bc’s butt!
I saw your question about the neobladder. Many of the women here who have had RC’s opted for what is called the “Indiana Pouch” which is also a continent diversion (no outside bag). A section of intestine is used to fashion a pouch inside your body but instead of being attached to the urethra as in the neobladder, it is attached to a stoma in the abdomen (sometimes naval). You do have use a catheter to empty the pouch every few hours and after some weeks/months of “training” it seems to settle in enough to get a good night’s sleep with one/two times to get up, depending on how long you stay in bed. We have people here who lead very active lives with their Indiana Pouches and after their recovery and adjustment period, it is just their “new normal”.
The neobladder generally works better for men due to the assistance of gravity aiding in emptying. Women tend to have more complications with it. As you discuss options with your uro, inquire how many of each type of diversion he has performed. It seems sometimes they may recommend the procedure they are most familiar with. As George (gotta love him) pointed out, radical cystectomy is a BIG surgery and you want the best surgeon you can find doing it. That may or not be the person who has diagnosed you.
As always a second opinion after all your tests are back is a strong option to consider. If you let us know where you are located, perhaps some suggestions can be offered to you from the members if you are not already at a major bc center.
Sending you more gentle {{{hugs}}}…
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
George is living proof that life can and does go on after BC & a cystectomy. To add food for thought. In the past two months I have had two friends with brain tumors and their prognosis is not near as good as us with BC! While I didn’t have to have a diversion, I try and keep up with things in case something should change. The only extra advice that I add, be sure you have someone doing the surgery that he/she is doing a high number a year. So many do just prostates and bladders are a sidelight. If your insurance allows it, a major cancer center that specializes in these.
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.
Oh, I see you got the neo bladder in ’08. How is that? Do you have to use a catheter and does that disturb your sleep?
The urologist concerned about that procedure and the risks of complications due to the amount of reconstruction required and/or infection.
Everyone has been moving pretty swiftly and not dragging their feet at all; I’ve gone from my primary care physician to diagnostic scans in about 30 days. –rgg
Thanks, George. I like the straight talk approach to getting info. I appreciate you all befriending me and being there to give me a “HUG” when I need one and a swift kick when I need that too!
What are your thoughts and/or experience with high-dose Vitamin C injections? Did you consider it at all? There seems to be some controversy as to whether or not that treatment works. I know that I need to make a decision within the next couple of weeks, and I am trying to decide whether or not I should seek an alternative medicine opinion, like from the Cancer Centers of America or Sunridge Medical in Arizona or something. I don’t want to confuse myself, but I also don’t want to put blinders on.
Do I really have to lose my bladder? If this has spread to other organs, is chemo and/or radiation the only answer?
Positive but righteous anger is in order right now and I am there. I haven’t even seen my grandbabies yet!
What’s the recovery period for this surgery? They tell me that I should have a pretty normal quality of life. I have a trip to Turks and Caicos planned for August. I’m looking forward to singing in competition in October and doing a concert tour in Greece next summer. I need to get well.
Thanks for caring,
Rheba
Hello
I am surprised you even heard what you did hear. I missed just about everything until the Dr. said “Then we’ll talk hospice”WHAT !!!!!!!!????????????
bc has a very good rate of survival. The Treatment you receive must be AGGGGressive, to say the least, and you need to find a Dr. that specializes in bc. If you think he (or she) is slowing down and taking time…..Get another.
But you should have a friend go into each Dr. visit with a note pad. The note pad should have all of your questions on it. Believe me, you will forget them when you are right in front of the Dr. The note pad is also to write down what the Dr. says to you about what is going to happen. Every time I went to the Dr. my wife had the pad. Afterward she quizzed me on what went on. left to my memory I missed 80% of the conversation.
And your Friends. Keep them in the loop. Don’t expect them to do EVERYTHING for you. Some will even keep a distance away from you. Because they are afraid too. Don’t feel as though they abandoned you. But you will find some friends that really step up, and ARE there. They are both your friends…. They just react differently to it all.
And finally, Do try to keep the diagnosis to the Dr. Try not to jump ahead to all of the bad case scenario’s that will just kill your energy with worry. Yes it is a BIG deal and Maybe you will have Big surgery….. But quite a few of us have and we are here to let you know that we are still around. Even Me.
Oh and that need to cry….. GO AHEAD! I order you to wallow in your emotions.
FOR A WHILE. And then it’s “ON to the Fight!” This is a battle and you also have to get MAD as HELL! Not gonna let this thing get me! No Way! Fight every day, every night, and Don’t Quit! Now way!How do you Like us now?
We are your Cheerleaders, mentors, sounding board, and Guides to treatment. Sometimes we are sympathetic.
Sometimes we are going to kick you in the ass.
Sometimes we are going to help you find your way to treatment.
Sometimes we will cryGeorge
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]
I’ve forced myself to keep from shutting others out and I made personal calls to my closest friends when I got the diagnosis. I’m sure that they really don’t know what to say since this hit me out of the blue. It stunned me pretty badly. Thanks for responding…it does feel better to know that there’s someone to talk to who I don’t have to mince my words with.
P.S. I cried this morning for the first time in the middle of my prayers.
Welcome to our forum… I can feel your pain as I read your words as they are words many of us have lived through as well. Those first few hours, days, and weeks are brutal just to put one foot in front of the other and move in any direction. It makes you feel isolated from the rest of the world… and alone… but you don’t have to be. Here you are with people who completely “get it” and understand how those feelings tear at your very core.
When and how much you choose to share with your family is up to you, but the sooner you release those secrets, the sooner you won’t feel so alone all the time. I understand your not wanting to intrude on your son and daughter-in-law getting settled into their new house and life… but I can assure you that all that would take a very fast backseat to you. Let them “be there” for you and don’t deprive them of their wanting and “needing” to be supportive and to help you through this difficult period. Imagine what you would have wanted to do for your own mom or other loved one.
Then, when you can find a private place, go have that good cry. It really helps just to release all that pent up emotion. Somehow it clears your head for the days ahead and the decisions you will have to make.
Sending you warm hugs…
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Feeling alone. How true. Use the offer of family & friends to “be there”, that’s important support from a different perspective.
“Now’s the time to collect information and make decisions.”
Sounds like you’re on the right track there of getting things done, which includes that anxious waiting period to see results and determine how to proceed. Please stop back, to ask questions, or just talk.Sign In to reply.
