My trip to see Dr. Daneshman went well. It was a tiring day for sure, but I accomplished what I needed to. I talked to the nurse and P.A. first and answered all the same medical questions I've answered in the past. The PA had a hard time understanding why there was so much time between my first biopsy (which was inconclusive) and the second biopsy (which came back stage 2b cancer). I tried to explain, but finally said that I wonder the same.
When I finally met with Dr. Daneshman, I felt he seemed rushed. He was probably running behind. But to his credit, he stayed with me until all my questions were answered and discussions completed. He started by explaining his method of surgery and what I could expect. He told me that I would need to stay in the area for about 4 weeks if everything went well. My hospital stay would be 4 days average. He sighted various statistics and studies that they had did to help improve patient outcomes. He also stated that according to published figures, he had constructed more neo bladders last year then any other surgeon in the US. We talked about if the experience of the surgeon had a difference in the patient's outcome. Of course he thought it had a big difference.
The bottom line is do I feel comfortable with this Dr. doing my procedure? And the answer is yes. I felt he was competent, confident, and caring. We discussed at length my concerns about going back to Utah and having complications. We discussed Dr. Myers. He assured me that if I was unable to make it back to him that he would do all he could to consult with doctors in Utah. If I can get all the pieces together, I would be comfortable know I went to the most experienced doctor for this procedure that I could find.
Right now the biggest roadblock into getting my surgery done there is finding an affordable place to stay for a month or so. With my sister, Barb, and I, we would need 2 bedrooms. Hotels would run us over $9,000.00. I talked to the hospital concierge and she said that most out of town patients look for houses to rent. She slyly suggested that I would want to look in certain areas for a place to rent. Of course she is right, I don't think I would be comfortable in east LA. Anyway, I have started looking and there are house rentals that cost $9,000.00/ month. But there are some that are affordable.
Anyway, Monday is still my deadline for making this decision. Prayers appreciated. Good night.
Friday, July 31, 2015
Wednesday, July 29, 2015
Going to California
Finally, tomorrow morning I leave for L.A. to meet with Dr. Daneshmand. He is the surgeon that I learned about on the BCAN network. He is certainly a well known surgeon who has performed hundreds of neo bladder procedures. All of the comments on BCAN are positive and the people have had great results with little or no complications. Of course, that is what I am hoping for. So I am going to see this Doctor so I can talk to him and see what he is like. I have a list of questions for him and I hope he is honest and straight forward with his answers.
An amazing coincidence happened about a week ago. I'm sharing this because this makes going to USC / Keck more feasible. A few months ago while I was seeking information about Dr. Dechet and the Huntsman, someone wrote me about a lady on BCAN who now lives in AZ. who had her operation done at the Huntsman. She said I should try to get a hold of her. Of course I didn't know anything about her, so I didn't see how I could contact her. Well last Thursday, she responded to my Huntsman question. She told me her Indiana pouch was done by 2 doctors - Dr. Dechet and a Dr. Myers. I had never heard of Dr. Myers. He is not associated with the Huntsman Cancer Center. I searched and found he works out of the University of Utah medical college. He does reconstructive bladder surgery on accident victims. The point is that I have been afraid of going to USC / Keck for my surgery because once back in Utah, if I have a major problem - who has the skills here to work on me. Dr. Dechet, I do not feel would be willing to. I don't blame him. But if Dr. Myers has these skills, my problem may be solved. So I called his office on Monday and talked to his assistant who assured me that not only is he capable of performing these procedures, but he would be more then willing to help if complications arose. Let's just say that the conversation put my mind at ease that Dr. Myers would be a competent and caring doctor, if I decide to go to USC for the operation. Funny how things work out in the nick of time, thanks to a great lady in AZ.
Well, I promised that I would make up my mind on who and where I want to do my surgery by Monday. I feel this is going to be a difficult weekend. I have put this off long enough and it is beginning to wear on me. Who knows what the cancer has been doing in my bladder this whole time. They told me it is the aggressive type. But I am not looking forward to seeing my bladder go and getting some substitute. I'm scared, but I know what I have to do or there is 100% chance that I die - sooner rather then latter.
Prayers welcome - Good night.
An amazing coincidence happened about a week ago. I'm sharing this because this makes going to USC / Keck more feasible. A few months ago while I was seeking information about Dr. Dechet and the Huntsman, someone wrote me about a lady on BCAN who now lives in AZ. who had her operation done at the Huntsman. She said I should try to get a hold of her. Of course I didn't know anything about her, so I didn't see how I could contact her. Well last Thursday, she responded to my Huntsman question. She told me her Indiana pouch was done by 2 doctors - Dr. Dechet and a Dr. Myers. I had never heard of Dr. Myers. He is not associated with the Huntsman Cancer Center. I searched and found he works out of the University of Utah medical college. He does reconstructive bladder surgery on accident victims. The point is that I have been afraid of going to USC / Keck for my surgery because once back in Utah, if I have a major problem - who has the skills here to work on me. Dr. Dechet, I do not feel would be willing to. I don't blame him. But if Dr. Myers has these skills, my problem may be solved. So I called his office on Monday and talked to his assistant who assured me that not only is he capable of performing these procedures, but he would be more then willing to help if complications arose. Let's just say that the conversation put my mind at ease that Dr. Myers would be a competent and caring doctor, if I decide to go to USC for the operation. Funny how things work out in the nick of time, thanks to a great lady in AZ.
Well, I promised that I would make up my mind on who and where I want to do my surgery by Monday. I feel this is going to be a difficult weekend. I have put this off long enough and it is beginning to wear on me. Who knows what the cancer has been doing in my bladder this whole time. They told me it is the aggressive type. But I am not looking forward to seeing my bladder go and getting some substitute. I'm scared, but I know what I have to do or there is 100% chance that I die - sooner rather then latter.
Prayers welcome - Good night.
Tuesday, July 14, 2015
Stuff is happening
Well after my meeting with Dr. Dechet at the Huntsman on July 2, I had time to think about my situation over the holiday weekend. And I came to the decision that I wanted to explore seeing a Dr. Daneshmand at Keck / USC in California. Dr. Daneshmand performs RC w/ neobladder surgeries at a far higher rate then Dr. Dechet. While Dr. Dechet may perform 12 surgeries per year, I feel, Dr. Daneshmand will do over 10X that number. I realize that this does not make Dr. Dechet less skilled or qualified, but this goes to all the comments on BCAN saying find the most experienced surgeon. And I believe that Dr. Daneshmand is that surgeon.
So I spent all last week talking to Dr. Daneshmand's office and arranging schedules and questions concerning my insurance. Concerning my insurance, although Keck is out of network, I am covered and will only have to pay my max. out of network cost. Once that was settled, I was able to get an appointment on July 30. I still need to get all of my medical reports sent to Dr. Daneshmand. To be honest, I am not sure what to expect from this meeting. But I will have my questions ready to go. My biggest question is what happens when I get home from California and I have a complication? Who do I go to? There is no time to fly to California and I don't think the doctors at the Huntsman will take me back. I am not sure what the answers are.
On Monday, I made an appointment with a physical therapist who specializes in male pelvic floor muscle rehab. I was lucky to find one here in Logan. Do you know your Kegel exercises? Well that is part of the exercises that help strengthen the muscles of your pelvic floor. Why is this important? Because the muscles of my pelvic floor are what will help me control my neo bladder. They tell me that a strong pelvic floor will help prevent me from peeing my pants. So I want to build my pelvic floor muscles up before the surgery so I have more of a chance of keeping my Depends dry. And I am going to P.T., to make sure I am doing my exercises correctly and not over straining the muscles.
On Tuesday, I spoke with the Huntsman records department to get all my information shipped to Dr. Daneshmand's office. Colleen was very helpful and understanding. I am glad I did not have to call Dr. Dechet's office to get these files. So it looks like my appointment on the 30th is looking good.
It seems like there is so much to do to prepare for my surgery. Some things I can not talk about now. But by far, my biggest worry is do I want Dr. Dechet or Dr. Daneshmand to perform my surgery? I hope the 30th gets here soon so I can get some questions answered and make my decision. The question is how am I going to decide which doctor is going to operate on the rest of my life. This is by far the hardest decision I have ever had to make. I pray about it often.
Well, it's late now. I'm sorry I haven't wrote much lately. Sometimes I spend a lot of time thinking, but I don't feel like writing. The time for action is coming soon enough and I can't delay it. But for now I need to get my rest and build up my strength.
God's peace to you all - say a prayer for me. Good night
So I spent all last week talking to Dr. Daneshmand's office and arranging schedules and questions concerning my insurance. Concerning my insurance, although Keck is out of network, I am covered and will only have to pay my max. out of network cost. Once that was settled, I was able to get an appointment on July 30. I still need to get all of my medical reports sent to Dr. Daneshmand. To be honest, I am not sure what to expect from this meeting. But I will have my questions ready to go. My biggest question is what happens when I get home from California and I have a complication? Who do I go to? There is no time to fly to California and I don't think the doctors at the Huntsman will take me back. I am not sure what the answers are.
On Monday, I made an appointment with a physical therapist who specializes in male pelvic floor muscle rehab. I was lucky to find one here in Logan. Do you know your Kegel exercises? Well that is part of the exercises that help strengthen the muscles of your pelvic floor. Why is this important? Because the muscles of my pelvic floor are what will help me control my neo bladder. They tell me that a strong pelvic floor will help prevent me from peeing my pants. So I want to build my pelvic floor muscles up before the surgery so I have more of a chance of keeping my Depends dry. And I am going to P.T., to make sure I am doing my exercises correctly and not over straining the muscles.
On Tuesday, I spoke with the Huntsman records department to get all my information shipped to Dr. Daneshmand's office. Colleen was very helpful and understanding. I am glad I did not have to call Dr. Dechet's office to get these files. So it looks like my appointment on the 30th is looking good.
It seems like there is so much to do to prepare for my surgery. Some things I can not talk about now. But by far, my biggest worry is do I want Dr. Dechet or Dr. Daneshmand to perform my surgery? I hope the 30th gets here soon so I can get some questions answered and make my decision. The question is how am I going to decide which doctor is going to operate on the rest of my life. This is by far the hardest decision I have ever had to make. I pray about it often.
Well, it's late now. I'm sorry I haven't wrote much lately. Sometimes I spend a lot of time thinking, but I don't feel like writing. The time for action is coming soon enough and I can't delay it. But for now I need to get my rest and build up my strength.
God's peace to you all - say a prayer for me. Good night
Monday, July 6, 2015
Report Past Due
Hi Everyone -
Sorry for the delay in updating my situation. I have been working on some things I can report on later. But for now I will do my best to fill you in on my visit with Dr. Dechet on Thursday.
To be honest, it went much better then I had anticipated. I spent a lot of time with his intern and she spent a lot of time answering my questions. And then Dr. Dechet came in and he answered my questions and also talked to me about the surgery and other matters. First, my CT scan came back with good. There was no sign that the cancer has spread. That greatly enhances my chance of survival. He talked about the surgery and what to expect. He finally tried to answer my question concerning the number of neo bladders he has constructed. He admitted that because Utah is not a big cancer state, most of his bladder cancer patients are older and not candidates for neo bladders. He could only give me rough estimates. He said he maybe does 25-50 radical cystectomies and year. And that maybe 1/3 of those involve a neo bladder diversion. So based on his years at Huntsman, he may have done over 200 neo's. He admitted that although he is the most experienced in the intermountain west, there are doctors on the east and west coast who have done many more. We also discussed how long you could wait after chemo to have surgery before the cancer has a chance to progress. He said you should wait no longer then 3 months. I asked who is person who schedules the surgery and he said I am. I said the although I would like to put this off for several years, that I would set a date for my surgery today. He told me to talk with his assistant.
Overall, I must admit that I left our meeting much more confident about the abilities of Dr. Dechet to perform my surgery. And I think I would be comfortable to have my surgery done at the Huntsman. But I admit that I still have a voice in the back of my head that tells me that I should get a second opinion from one of the doctors of USC. So I have been spending my time getting information so I can travel there and accomplish all that needs to be done in a day. And I think that tomorrow I will be ready to call out there and try and make an appointment with Dr. Daneshmand. I realize that getting a more experienced surgeon does not guarantee a better outcome. And I realize going out of state adds more logistical problems to the procedure, but I feel I owe it to myself to get that 2nd opinion and to see how the cards play out.
In the mean time I will keep doing my kiegel exercises and getting my strength up for the surgery. Which for now is scheduled for Aug. 25 at the Huntsman. OH BOY!!!!!!
Wishing you the best - Good night.
Sorry for the delay in updating my situation. I have been working on some things I can report on later. But for now I will do my best to fill you in on my visit with Dr. Dechet on Thursday.
To be honest, it went much better then I had anticipated. I spent a lot of time with his intern and she spent a lot of time answering my questions. And then Dr. Dechet came in and he answered my questions and also talked to me about the surgery and other matters. First, my CT scan came back with good. There was no sign that the cancer has spread. That greatly enhances my chance of survival. He talked about the surgery and what to expect. He finally tried to answer my question concerning the number of neo bladders he has constructed. He admitted that because Utah is not a big cancer state, most of his bladder cancer patients are older and not candidates for neo bladders. He could only give me rough estimates. He said he maybe does 25-50 radical cystectomies and year. And that maybe 1/3 of those involve a neo bladder diversion. So based on his years at Huntsman, he may have done over 200 neo's. He admitted that although he is the most experienced in the intermountain west, there are doctors on the east and west coast who have done many more. We also discussed how long you could wait after chemo to have surgery before the cancer has a chance to progress. He said you should wait no longer then 3 months. I asked who is person who schedules the surgery and he said I am. I said the although I would like to put this off for several years, that I would set a date for my surgery today. He told me to talk with his assistant.
Overall, I must admit that I left our meeting much more confident about the abilities of Dr. Dechet to perform my surgery. And I think I would be comfortable to have my surgery done at the Huntsman. But I admit that I still have a voice in the back of my head that tells me that I should get a second opinion from one of the doctors of USC. So I have been spending my time getting information so I can travel there and accomplish all that needs to be done in a day. And I think that tomorrow I will be ready to call out there and try and make an appointment with Dr. Daneshmand. I realize that getting a more experienced surgeon does not guarantee a better outcome. And I realize going out of state adds more logistical problems to the procedure, but I feel I owe it to myself to get that 2nd opinion and to see how the cards play out.
In the mean time I will keep doing my kiegel exercises and getting my strength up for the surgery. Which for now is scheduled for Aug. 25 at the Huntsman. OH BOY!!!!!!
Wishing you the best - Good night.
Wednesday, July 1, 2015
Anxious
I am feeling anxious and a little scared. Tomorrow I have my appointment with Dr. Dechet. I'm not sure what to expect. I have my questions ready, but I wonder what kind of answers I will get. I know that the results of my CT scan I had on Monday should be available. I don't know if Dr. Dechet will want to schedule my surgery. If he does, I wonder how much information he will try and give me tomorrow. Thanks to the people on BCAN, I have learned a lot about the pre and post op procedures. I wonder if Dechet will follow the same procedures. I know it's silly to worry about things I can't control, but I am.
I have mentioned several times about situations that have not gone as I feel they should have at the Huntsman and my CT scan was no different. The doctors office had called on the 17th to give me the details of the scan and told me to show up 2 hrs. early to drink the contrast. I understood this because my 2 previous scans, I had to drink the contrast. Well on the 25th, the CT dept. called to verify the appointment and proceeded to tell me I didn't need to drink any contrast. I said that the doctor's office said I did need the contrast. They assured me I didn't. So that night, I email the ask a nurse and informed them of the conflict and asked if they could check on it and let me know tomorrow (Friday). And as usual, I did not get a response. So all weekend, I wondered what I should do. Luckily, my appointment was late on Monday so I had time to call the doctor's office and try and get an answer. I did get in touch with the office and they told me I needed the contrast and they would talk to the CT dept. I arrived early for my CT and was again told I didn't need contrast. After some discussion, I was given the contrast to drink. And I have to ask myself, HOW CAN THE COMMUNICATION BE SO POOR!!! When I talking directly to people, they are straight forward and nice. But this miscommunication and unreturned messages happens so much that I truly wonder if I should go out of state.
Going out of state is something I have considered from the very beginning. But I went to the Huntsman hoping they would show me they were the best place for me to be. But in my opinion, they have consistently shown me the opposite. Although the people have been great when I am there in person, the frustration I have received from unreturned messages and miscommunication has been great. so I finally investigated people on BCAN who went out of state. One from N.M. and one from Idaho ended up at USC cancer hospital. They both got first rate care and more importantly no complications from their surgery. I am so close to at least going and talking to the doctor. I will wait to see how my meeting goes tomorrow.
Good night.
I have mentioned several times about situations that have not gone as I feel they should have at the Huntsman and my CT scan was no different. The doctors office had called on the 17th to give me the details of the scan and told me to show up 2 hrs. early to drink the contrast. I understood this because my 2 previous scans, I had to drink the contrast. Well on the 25th, the CT dept. called to verify the appointment and proceeded to tell me I didn't need to drink any contrast. I said that the doctor's office said I did need the contrast. They assured me I didn't. So that night, I email the ask a nurse and informed them of the conflict and asked if they could check on it and let me know tomorrow (Friday). And as usual, I did not get a response. So all weekend, I wondered what I should do. Luckily, my appointment was late on Monday so I had time to call the doctor's office and try and get an answer. I did get in touch with the office and they told me I needed the contrast and they would talk to the CT dept. I arrived early for my CT and was again told I didn't need contrast. After some discussion, I was given the contrast to drink. And I have to ask myself, HOW CAN THE COMMUNICATION BE SO POOR!!! When I talking directly to people, they are straight forward and nice. But this miscommunication and unreturned messages happens so much that I truly wonder if I should go out of state.
Going out of state is something I have considered from the very beginning. But I went to the Huntsman hoping they would show me they were the best place for me to be. But in my opinion, they have consistently shown me the opposite. Although the people have been great when I am there in person, the frustration I have received from unreturned messages and miscommunication has been great. so I finally investigated people on BCAN who went out of state. One from N.M. and one from Idaho ended up at USC cancer hospital. They both got first rate care and more importantly no complications from their surgery. I am so close to at least going and talking to the doctor. I will wait to see how my meeting goes tomorrow.
Good night.
Subscribe to:
Posts (Atom)