Just learning
I have a million and one questions but does anyone have any specific questions I should be asking for our second visit to the oncologist?
Any help or information would be very appreciated.
Thank you
TinaB
Comments
-
Welcome
Hello Tinab and brother
Wow....not only is your name Tina, but your last name starts with a b? So does mine! We are both Tina b's. Amazingly small world we live in. I am in Virginia, I was a caregiver for my dad. Unfortunately he passed away from ec with mets to the liver in March. This is a one step at a time journey. Try your best not to get too far ahead of yourselves. Wait to get the results of his pet scan to see what stage it is. I agree with the feeding tube suggestion. He has to have some weight on him to withstand the cancer, the treatments, and the surgery. Everyone responds to chemo differently. My dad did quite well with his chemo treatments and radiation. His cancer went into remission for one year. You have come to a wonderful discussion board. Everyone here is experienced and very knowledgeable. As well as loving, friendly, and caring. Come here often and ask as many questions as you like. Welcome to our family! Keep in touch.
Tina B in Va0 -
Thank you for the kind wordsTina Blondek said:Welcome
Hello Tinab and brother
Wow....not only is your name Tina, but your last name starts with a b? So does mine! We are both Tina b's. Amazingly small world we live in. I am in Virginia, I was a caregiver for my dad. Unfortunately he passed away from ec with mets to the liver in March. This is a one step at a time journey. Try your best not to get too far ahead of yourselves. Wait to get the results of his pet scan to see what stage it is. I agree with the feeding tube suggestion. He has to have some weight on him to withstand the cancer, the treatments, and the surgery. Everyone responds to chemo differently. My dad did quite well with his chemo treatments and radiation. His cancer went into remission for one year. You have come to a wonderful discussion board. Everyone here is experienced and very knowledgeable. As well as loving, friendly, and caring. Come here often and ask as many questions as you like. Welcome to our family! Keep in touch.
Tina B in Va
Thank you for the kind words and it is funny that we are both Tina B's my last name is Bradford and our family lives in GA. I am trying not add any worries until we know but I do worry about his other ailments. He also went through prostate cancer two years ago and had seizures after the surgery which caused complications. (the good part was the DR did say they had removed all of the cancer) So as we waiting to gather all the information on this new cancer I think I have researched myself into overload. Scared on what he will be and not be able to do for himself as he is disabled already and the rest of us work. I don't know how and if we can get help for him if needed.0 -
Tina,
Welcome to our family.
Tina,
Welcome to our family. So we can help more --- can you please tell us where your brother lives and where he is being treated and who his doctors are. Being treated by doctors who are specialists in treating esophageal cancer can make all the difference in the outcome and increase your odds of beating this horrible monster. Do not hesitate or wait there is no time to waste in fighting this cancer. If at all possible you should get a second opinion at a National Cancer Center Hospital with a specialty in Esophageal Cancer.
There is a great book called "100 Questions & Answers About Esophageal Cancer" by Pamela K. Ginex, Manjit S. Bains, Jacqueline Hanson, Bart L. Frazzitta. (Publisher: Jones and Bartlett Publishers, Inc. (April 25, 2005), ISBN-10: 0763745707, ISBN-13: 978-0763745707. This book is a great resource to get yourself up to spead on many questions about EC.
Also I am pasting a post from another member on our board, Paul, who had a great list of questions to ask . . . I would add questions about your brother's medical condition and how that may impact his options. How frail is your brother and while he may be too frail for the IVOR LEWIS surgery he may be able to have the MIE surgery. William Marshall will most likely post an answer to you --- be sure you read it. Leave no stone unturned.
Make sure you take the questions with you and write down the doctor's answers. Believe me when they start talking it is very easy to get off topic or worse for your mind to shut down and once you are out of the appointment shaking your head asking what just happened. We keep a notebook with all the test results, scan results, etc. so we can keep track of everything and ask questions.
October 17, 2010 - 7:05pm
20 Questions to ask your oncologist before beginning treatment
Hello,
20 Questions to ask your oncologist
1. Have you reviewed the test results and staging information for my diagnosis? Do you agree it is complete? What is my specific staging (TxNxMx)?
2. Do you feel there are any additional tests that should be run prior to defining a treatment plan? (e.g HER2 testing, tumor tissue evaluation for targeted treatments)
3. Esophageal cancer is relatively rare. How many cases have you seen and treated?
4. Why are you recommending this particular treatment?
5. Are there other treatment options available for this cancer, and what are the pros and cons of each?
6. Is there any written material about the recommended treatment that we can take home to read?
7. What are the goals of this treatment, and what is the success rate?
8. How long will the treatment last?
9. What are the risks of this treatment?
10. What are the “typical” side effects of this treatment?
11. What are your approaches to manage the side effects? Is IV hydration available as needed?
12. Is there a way to reach a medical professional in your office 24 hours a day 7 days a week? (If the answer is “no” think about finding another oncologist).
13. How do we know if a side effect is severe enough to warrant calling you?
14. What do we need to do to prepare for this treatment?
15. Is there anything that's important to avoid before or during treatment?
16. Can you tell us what to expect during treatment -- where does it take place, how long does each session last?
17. How do patients typically feel after treatment, both immediately afterward and in the days that follow?
18. What's the best way for us to contact you when we have more questions about the treatment? Can we communicate via email?
19. How will we gage the success of the treatment as we progress through the process?
20. Are there any new treatment options or clinical trials we should be aware of?
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
Life may not be the party we hoped for, but while we are here we might as well dance!
Keep the faith,
Cindy0 -
Thank you for all theunclaw2002 said:Tina,
Welcome to our family.
Tina,
Welcome to our family. So we can help more --- can you please tell us where your brother lives and where he is being treated and who his doctors are. Being treated by doctors who are specialists in treating esophageal cancer can make all the difference in the outcome and increase your odds of beating this horrible monster. Do not hesitate or wait there is no time to waste in fighting this cancer. If at all possible you should get a second opinion at a National Cancer Center Hospital with a specialty in Esophageal Cancer.
There is a great book called "100 Questions & Answers About Esophageal Cancer" by Pamela K. Ginex, Manjit S. Bains, Jacqueline Hanson, Bart L. Frazzitta. (Publisher: Jones and Bartlett Publishers, Inc. (April 25, 2005), ISBN-10: 0763745707, ISBN-13: 978-0763745707. This book is a great resource to get yourself up to spead on many questions about EC.
Also I am pasting a post from another member on our board, Paul, who had a great list of questions to ask . . . I would add questions about your brother's medical condition and how that may impact his options. How frail is your brother and while he may be too frail for the IVOR LEWIS surgery he may be able to have the MIE surgery. William Marshall will most likely post an answer to you --- be sure you read it. Leave no stone unturned.
Make sure you take the questions with you and write down the doctor's answers. Believe me when they start talking it is very easy to get off topic or worse for your mind to shut down and once you are out of the appointment shaking your head asking what just happened. We keep a notebook with all the test results, scan results, etc. so we can keep track of everything and ask questions.
October 17, 2010 - 7:05pm
20 Questions to ask your oncologist before beginning treatment
Hello,
20 Questions to ask your oncologist
1. Have you reviewed the test results and staging information for my diagnosis? Do you agree it is complete? What is my specific staging (TxNxMx)?
2. Do you feel there are any additional tests that should be run prior to defining a treatment plan? (e.g HER2 testing, tumor tissue evaluation for targeted treatments)
3. Esophageal cancer is relatively rare. How many cases have you seen and treated?
4. Why are you recommending this particular treatment?
5. Are there other treatment options available for this cancer, and what are the pros and cons of each?
6. Is there any written material about the recommended treatment that we can take home to read?
7. What are the goals of this treatment, and what is the success rate?
8. How long will the treatment last?
9. What are the risks of this treatment?
10. What are the “typical” side effects of this treatment?
11. What are your approaches to manage the side effects? Is IV hydration available as needed?
12. Is there a way to reach a medical professional in your office 24 hours a day 7 days a week? (If the answer is “no” think about finding another oncologist).
13. How do we know if a side effect is severe enough to warrant calling you?
14. What do we need to do to prepare for this treatment?
15. Is there anything that's important to avoid before or during treatment?
16. Can you tell us what to expect during treatment -- where does it take place, how long does each session last?
17. How do patients typically feel after treatment, both immediately afterward and in the days that follow?
18. What's the best way for us to contact you when we have more questions about the treatment? Can we communicate via email?
19. How will we gage the success of the treatment as we progress through the process?
20. Are there any new treatment options or clinical trials we should be aware of?
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
Life may not be the party we hoped for, but while we are here we might as well dance!
Keep the faith,
Cindy
Thank you for all the questions to ask. We live here in Georgia about 25 miles outside of Atlanta. Raymond's Oncologist name Dr. Wadehra in Douglasville, GA. My brother has always been a little frail as he is partially paralyzed on his left side which leaves that arm and leg very weak and hard to do alot of everyday things. In the past few months he has lost close to 15 lbs with not being able to eat very well (and he was not a large guy to begin with) That is why the doctor said he would need a feeding tube placed before they would start chemo as he does not have any extra weight to lose.
I did not know there were more than one type of surgery for this and thank you for letting us know as we are scheduled to still see the Surgeon this Thursday. Is name is Dr. Mayfield in Kennesaw, GA.
Right now I am off to take him for his PET scan. Thanks again for all the information. I am so glad I decided to go ahead and join this network.
Sincerely,
Tina0 -
This comment has been removed by the Moderatortinab1127 said:Thank you for all the
Thank you for all the questions to ask. We live here in Georgia about 25 miles outside of Atlanta. Raymond's Oncologist name Dr. Wadehra in Douglasville, GA. My brother has always been a little frail as he is partially paralyzed on his left side which leaves that arm and leg very weak and hard to do alot of everyday things. In the past few months he has lost close to 15 lbs with not being able to eat very well (and he was not a large guy to begin with) That is why the doctor said he would need a feeding tube placed before they would start chemo as he does not have any extra weight to lose.
I did not know there were more than one type of surgery for this and thank you for letting us know as we are scheduled to still see the Surgeon this Thursday. Is name is Dr. Mayfield in Kennesaw, GA.
Right now I am off to take him for his PET scan. Thanks again for all the information. I am so glad I decided to go ahead and join this network.
Sincerely,
Tina0 -
hi Tina
I also live in Georgia and my husband has recurrent esophageal cancer. He is stage iv and has already had the surgury for the first bout and has now started chemo.
I am in the process of getting all of my husbands CT & PET scan results to send the to Dr. Luketich in Pittsburg per the Marshalls advice.
This is a terrible Beast but you really have to be positive that your brother will do well. If yopu send me a private e-mail on this site I can give you the name of the dr we used in Georgia.
Just go to CSN on the home page and you can send an e-mail to me.
Best of luck and NEVER GIVE UP HOPE
Barb0 -
hello Tina, I agree with all
hello Tina, I agree with all on second opinions. I too was diagnosed with stage three ec in 2007 and underwent chemo and surgery, My test indicate I am disease free. I didn't know at the time of my surgery there was anything but the ivor lewis. I had a top thoracic surgeon in Ga. and did do very well. I wish I had known there was a less invasive procedure and if I was a candidate. There is a cancer center now at Emory University in Atlanta area. They have some very good drs there. My dr. was there but has changed to another location. Perhaps William can do some research on them. I would like to know his thoughts. I live just south of Atlanta, so we're almost neighbors.
I know it's hard waiting for test results to determine what can be done. You and your brother will be in my thoughts and prayers,
Sandra0 -
This comment has been removed by the Moderatortinab1127 said:Thank you for all the
Thank you for all the questions to ask. We live here in Georgia about 25 miles outside of Atlanta. Raymond's Oncologist name Dr. Wadehra in Douglasville, GA. My brother has always been a little frail as he is partially paralyzed on his left side which leaves that arm and leg very weak and hard to do alot of everyday things. In the past few months he has lost close to 15 lbs with not being able to eat very well (and he was not a large guy to begin with) That is why the doctor said he would need a feeding tube placed before they would start chemo as he does not have any extra weight to lose.
I did not know there were more than one type of surgery for this and thank you for letting us know as we are scheduled to still see the Surgeon this Thursday. Is name is Dr. Mayfield in Kennesaw, GA.
Right now I am off to take him for his PET scan. Thanks again for all the information. I am so glad I decided to go ahead and join this network.
Sincerely,
Tina0 -
William,unknown said:This comment has been removed by the Moderator
Thank you so very
William,
Thank you so very much for all the information. Dr. Mayfield is actually in Marietta. 61 Whitcher St. Ste. 4120, Marietta, GA 30060. I will start gathering copies of all the reports from the visits. This week we have three doctors appts. Wednesday is consultation with the Radiation Therapy. Thursday is with Dr. Mayfield (surgeon) and then Friday is back to the Oncologist Dr. Wadhera. I am so glad to be a little more informed before going to all the visits this week. Dr. Wadhera stated that this Friday he would have the regimen for Raymond to follow as far as chemo and radiation therapy.
My brother over these past two weeks of learning about the esophageal cancer has went from being depressed to now being very angry. Almost to the point I am not to crazy about stopping by or calling and checking on him. (ALMOST)
I know you stated that you were blessed to have very good insurance. Raymond is disabled and is on medicare. The thoracic surgeon has sent over all the paperwork for him to fill out and it states they know he is on medicare and that his 20% would be due at the time of each visit.
This is almost impossible with him being on a fixed income. Will the doctor's office direct us to where he can get assistance? Or are there sites I should be going to? I know you might not have these answers but I would hate for him not to get the best of care just because he is on medicare and is disabled.
Tina0 -
Hello again Tina,sandy1943 said:hello Tina, I agree with all
hello Tina, I agree with all on second opinions. I too was diagnosed with stage three ec in 2007 and underwent chemo and surgery, My test indicate I am disease free. I didn't know at the time of my surgery there was anything but the ivor lewis. I had a top thoracic surgeon in Ga. and did do very well. I wish I had known there was a less invasive procedure and if I was a candidate. There is a cancer center now at Emory University in Atlanta area. They have some very good drs there. My dr. was there but has changed to another location. Perhaps William can do some research on them. I would like to know his thoughts. I live just south of Atlanta, so we're almost neighbors.
I know it's hard waiting for test results to determine what can be done. You and your brother will be in my thoughts and prayers,
Sandra
Hope today
Hello again Tina,
Hope today finds you as well as can be expected. I have just read that your brother's name is Raymond. Here is another similarity....my dad's name was Raymond, and so is my brother's. These are a lot of things we share in common! I am hoping that we have all made you feel a little more at ease. We have wonderful people on this discussion board. I am glad to see that there are some people living in the same area as you! May God bless you and give you the strength you will need to conquer this disease with your brother, Raymond. May God grant you both with the peace you will need at this time. We will all be thinking of you and praying for you.
Tina B in Va0 -
Well that is definitelyTina Blondek said:Hello again Tina,
Hope today
Hello again Tina,
Hope today finds you as well as can be expected. I have just read that your brother's name is Raymond. Here is another similarity....my dad's name was Raymond, and so is my brother's. These are a lot of things we share in common! I am hoping that we have all made you feel a little more at ease. We have wonderful people on this discussion board. I am glad to see that there are some people living in the same area as you! May God bless you and give you the strength you will need to conquer this disease with your brother, Raymond. May God grant you both with the peace you will need at this time. We will all be thinking of you and praying for you.
Tina B in Va
Well that is definitely strange, but in a good way. Well starting tomorrow through Friday I guess they will let us know where we stand with the cancer and hopefully know exactly how they plan to fight it. Thanks again to everyone on here for all the kind words and questions that I will now be armed with going into these office visits.
Sincerely,
Tina0 -
This comment has been removed by the Moderatortinab1127 said:William,
Thank you so very
William,
Thank you so very much for all the information. Dr. Mayfield is actually in Marietta. 61 Whitcher St. Ste. 4120, Marietta, GA 30060. I will start gathering copies of all the reports from the visits. This week we have three doctors appts. Wednesday is consultation with the Radiation Therapy. Thursday is with Dr. Mayfield (surgeon) and then Friday is back to the Oncologist Dr. Wadhera. I am so glad to be a little more informed before going to all the visits this week. Dr. Wadhera stated that this Friday he would have the regimen for Raymond to follow as far as chemo and radiation therapy.
My brother over these past two weeks of learning about the esophageal cancer has went from being depressed to now being very angry. Almost to the point I am not to crazy about stopping by or calling and checking on him. (ALMOST)
I know you stated that you were blessed to have very good insurance. Raymond is disabled and is on medicare. The thoracic surgeon has sent over all the paperwork for him to fill out and it states they know he is on medicare and that his 20% would be due at the time of each visit.
This is almost impossible with him being on a fixed income. Will the doctor's office direct us to where he can get assistance? Or are there sites I should be going to? I know you might not have these answers but I would hate for him not to get the best of care just because he is on medicare and is disabled.
Tina0
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