Hmmmmm....i wonder what an MRI would do to the staples that are holding my bladder together ? That would be interesting!!
I too hate the radiation and i admit i cheat...i don't go in every 6 months anymore after the second year...i stretch it out . I tried once many years ago to have an MRI and couldn't do it.....just too claustrophobic...they would need a baseball bat to get me in one of those!..........Pat
My insitance for an MRI rather than a CatScan with radiation came in the form of a voiced concern and explanation to my doctor. I simply said " I am very concerned about getting exposed to radiation and feel very anxious about having radiation put into my body. Maybe it is not reasonable in your opinion, but that is where I'm at. I will consent to an MRI but not a CATscan for that reason. He scheduled a CATscan as he did not want to chance an outcome that might be a result of my concerns. Remember that doctors are concerned with saving lives and not necessarily concerned with saving lifestyles.
An IVP is An intravenous pyelogram (IVP) is an x-ray examination of the kidneys, ureters and urinary bladder that uses contrast material.
An x-ray (radiograph) is a painless medical test that helps physicians diagnose and treat medical conditions. Radiography involves exposing a part of the body to a small dose of ionizing radiation to produce pictures of the inside of the body. X-rays are the oldest and most frequently used form of medical imaging.
When a contrast material is injected into the patient's arm, it travels through the blood stream and collects in the kidneys and urinary tract, turning these areas bright white. An IVP allows the radiologist to view and assess the anatomy and function of the kidneys and lower urinary tract.
Thanks to all for the comments. That is exactly the type of info. I was looking for and am so glad I remembered to go back today and read the comments. You guys and gals are awesome ! I really could not move forward on this journey without your support. Take care and know how much I appreciate you all. Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Wendy wrote and asked me to take a look at your post as she thought I could answer some of your questions.
I do not know your situation medically and even if I did I would never try to influence anyone’s decisions. You are doing what all of us should do-your home work.
I went through the bladder sparing protocol in a clinical trial in 04-05 under the dream team of Kaufman and Shipley at Massachusetts General in Boston. They are the fathers of the bladder sparing protocol using radiation and chemotherapy. In order to enter into the trial you had to undergo a stringent battery of tests and the tumor had to be well placed, also they did very few T3s at all. Some enter into the protocol because they feel it is the easier path than RC. The protocol I went through took me into radiation forty times and chemotherapy 12. Having done both I can tell you that there are no free passes in the blc game.
Your question about damage from radiation affecting your choice of diversion in case of failure is an astute one. When I failed the clinical trial and had to go to RC I found that all I was offered due to prior pelvic radiation was an Illiot conduit. Most Urological
Surgeons will tell you that the radiation changes the tissue so much that the least done the better and the Illiot is the least complicated. While being in my late forties at the time I am very athletic and did not wish to have to deal with an external appliance. My husband and I traveled to John Hopkins and then to the University of Chicago. Dr. Gary Steinberg of the UCM was willing to try an Indiana pouch. The happy end to the story is that he was able to and I am a year out cancer free and doing very well. But it was a hard recover do to the damage I believe that the radiation had done to my intestines. So to answer your question can radiation affect your diversion choices down the road….yes and no. If you want anything besides an external appliance you will have to find a surgeon willing to try and even then you will not know for sure until you wake up.
During my research once I knew that I had to have my bladder out I found a research study that found that RCs on patients’ with prior pelvic radiation had fifty percent more complications that those that did not. I once had a resident tell me they call bladders that have been through radiation crispy critters. By the time I went to RC I had little continence left and to this day suffer from what they call anal urgency. The incidence of secondary cancers is higher do to radiation as time goes on.
Do I know people that had pelvic radiation and have few side affects…..yes. Do I know people that have had a lot following pelvic radiation…..yes.
Now having said all of this would I have radiation if I needed it to stay alive? You bet I would. Would I go through chemo again if need be? You bet I would. Would I have skipped the radiation knowing what I do now? Yes because I have came to understand that losing your bladder is not the enemy the cancer is.
I hope what ever choices you make that you come out the other side as well and happy as I have. And if you need anything do not hesitate emailing me.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
I would say someone in their 70's or 80's ok go for the radiation and hope for the best and try to avoid removal of the bladder plus the surgery at that age. But this is my opinion I am 52 male with an invassive tumor. I went thru pre-op chemo and all went well so far and no mass is showing in the bladder which once was the tumor. But there is no way to be sure if there are still cancer cells in the bladder or nearby. I am getting my bladder out on 6/20 and this is the safest route as far as becoming cancer free. My surgeon just asked me what I wanted to do and I said remove bladder and he said right answer Joe and then went into all the details why this was the best choice which I am not going into now. I have one life and I am not going to gamble with it to try and save bladder as much as I would love to. So far the cancer is contained after the CT Scan when I was done my chemo. So to me radiation is not a thing about whether it can cause intestine damage or whatever it is a choice you make and then if you decide you want the surgery and the radiation caused a problem, remember you made that decision. We have but one life so I myself feel I am making the right decision and my surgeon who is tops totally agrees and I trust him %100. Best Wishes, Joe
If you would like to get as much assurance as possible of being able to have an internal pouch constructed in case of bladder removal post-radiation, well, it is possible, but considered very tricky. You would have to be sure of getting the best surgeon in this field, one who has experience in this situation, one who has operated on a lot of women.
If that is possible for you I can track down some names (where are you located?). I know of a woman who did the radio-chemo bladder sparing route, then needed bladder removal and successfully got an Indiana Pouch. She interviewed many surgeons till she found ones that would agree to at least try that route.
And yes, there is some damage done to the intestines around the bladder, or behind it (I"m not all that knowledgeable about where exactly these things sit).