Just diagnosed and going to M D Anderson Sunday
Faith
Comments
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I was diagnosed just about a
I was diagnosed just about a year ago with stage IV colon cancer, and I know that I felt like I'd been hit by a freight train. My best advice is to concentrate on a treatment plan and save other questions for later as they come up, otherwise things get pretty overwhelming. I put up a picture of an elephant with a knife and folk on my frige to remember to take things in manageable bites. It really helps to take a list of questions and someone to write down answers. I found that my husband and I both had different questions, and between the both of us, we got most of our answers (sometimes the answer was that there is no answer...) It also helps to be assertive (but pleasant..) - we found sometimes the docs tended to make decisions without giving us explanations, but would do so when we asked, and then we asked again until we understood. Best of luck to your son - hang in there - I made it through 12 FOLFOX/Avastin treatments, surgery and an intestinal blockage. I am back to work, gaining strength, and have a follow-up CT scan and blood tests this next week. He'll get through it with time, patience and support.0 -
Faith
Welcome to this board. I am sorry your son has been diagnosed with cancer. Every cancer centre is different; I am not sure what the 3 days of appointments are - could it be surgeon, oncologist, radiation oncologist? Your son likely knows who the three appointments are with. The good news is it sounds like he is getting lots of attention. At any rate, probably one of these appointments will outline a proposed treatment plan. As was previously said it is a good idea for your son to have someone with him, because it sometimes is difficult to take all the information in. It is a good idea to have a notebook or binder to write information in. Please feel free to ask as many questions as you want. There are a lot of people here who want to help.0 -
Welcome psychje; it soundspsychje said:I was diagnosed just about a
I was diagnosed just about a year ago with stage IV colon cancer, and I know that I felt like I'd been hit by a freight train. My best advice is to concentrate on a treatment plan and save other questions for later as they come up, otherwise things get pretty overwhelming. I put up a picture of an elephant with a knife and folk on my frige to remember to take things in manageable bites. It really helps to take a list of questions and someone to write down answers. I found that my husband and I both had different questions, and between the both of us, we got most of our answers (sometimes the answer was that there is no answer...) It also helps to be assertive (but pleasant..) - we found sometimes the docs tended to make decisions without giving us explanations, but would do so when we asked, and then we asked again until we understood. Best of luck to your son - hang in there - I made it through 12 FOLFOX/Avastin treatments, surgery and an intestinal blockage. I am back to work, gaining strength, and have a follow-up CT scan and blood tests this next week. He'll get through it with time, patience and support.
Welcome psychje; it sounds like you are doing well + getting back to a normal life.0 -
I was just diagnosed just about apsychje said:I was diagnosed just about a
I was diagnosed just about a year ago with stage IV colon cancer, and I know that I felt like I'd been hit by a freight train. My best advice is to concentrate on a treatment plan and save other questions for later as they come up, otherwise things get pretty overwhelming. I put up a picture of an elephant with a knife and folk on my frige to remember to take things in manageable bites. It really helps to take a list of questions and someone to write down answers. I found that my husband and I both had different questions, and between the both of us, we got most of our answers (sometimes the answer was that there is no answer...) It also helps to be assertive (but pleasant..) - we found sometimes the docs tended to make decisions without giving us explanations, but would do so when we asked, and then we asked again until we understood. Best of luck to your son - hang in there - I made it through 12 FOLFOX/Avastin treatments, surgery and an intestinal blockage. I am back to work, gaining strength, and have a follow-up CT scan and blood tests this next week. He'll get through it with time, patience and support.
Thank you for your advice. I like the idea of the elephant picture on the fridge...very visual picture of what he is facing. Hope your follow up scan and blood tests turn out to be great!0 -
MD AndersonAnneCan said:Faith
Welcome to this board. I am sorry your son has been diagnosed with cancer. Every cancer centre is different; I am not sure what the 3 days of appointments are - could it be surgeon, oncologist, radiation oncologist? Your son likely knows who the three appointments are with. The good news is it sounds like he is getting lots of attention. At any rate, probably one of these appointments will outline a proposed treatment plan. As was previously said it is a good idea for your son to have someone with him, because it sometimes is difficult to take all the information in. It is a good idea to have a notebook or binder to write information in. Please feel free to ask as many questions as you want. There are a lot of people here who want to help.
Hi Faith,
I'm sorry that your son is going through this. I had anal cancer, not colon, but I am responding because I was treated at MD Anderson and the same team treats both. I thought I could help you in understanding what to expect when you get there.
First of all, MD Anderson is huge. There are several buildings and it is likely you will be going to at least 2 to start with. The days will be filled with tests, tests and tests. The good news is that they are very good at getting results back quickly and following up with consultations in a very timely manner. When I went there they wanted to do tests that I had already had. At first I was baffled, but then I was grateful because I was orignally mis-diagonsed at another facility. I was diagonsed with rectal cancer, then at MD Anderson they re-did the pathology, etc. and confirmed it was anal cancer. So what I am saying is that they are thorough. The Gastro Intestinal Oncology team is very good.The doctors work as a team; oncologist, radiologist, surgeon. But the hospital is very, very busy. There will be wait times, some times long ones depending on the tests. Although the place is huge, I felt like I got the attention I needed and people are very helpful. I used to live in Houston, moved out of state but then went back for treatment and stayed there for 2 months. I still fly back there every three months for my follow ups because I have such confidence in my doctors. If you are not from the area and have questions about Houston please let me know. I will help anyway I can.
As others have said, it's imporatnt for your son to have someone with him. There will be a lot of information and it can be overwhelming. MD Anderson has a great support group for caregivers as well. The patient advocacy office can assist with that if you feel it would help you.
I wish your son well and I will keep you and your family in my prayers.
Liz0 -
Thank you for your advice.AnneCan said:Faith
Welcome to this board. I am sorry your son has been diagnosed with cancer. Every cancer centre is different; I am not sure what the 3 days of appointments are - could it be surgeon, oncologist, radiation oncologist? Your son likely knows who the three appointments are with. The good news is it sounds like he is getting lots of attention. At any rate, probably one of these appointments will outline a proposed treatment plan. As was previously said it is a good idea for your son to have someone with him, because it sometimes is difficult to take all the information in. It is a good idea to have a notebook or binder to write information in. Please feel free to ask as many questions as you want. There are a lot of people here who want to help.
Thank you for your advice. His wife will be going with him to as many appointments as possible. We live 10 hours from Houston, so I'm going along so I can keep my grandchild. They thought about taking a small tape recorder to the appointments but don't know whether the doctors will allow that. There are many people praying for him, and we believe that God has a plan to give Jeff a hope and a future. My husband died 2 years ago of a brain tumor after spending over 7 months in the hospital, so this brings back so many emotions. There are so many people here who have faced this terrible disease with courage and faith. It's encouraging to read their posts.0 -
Lizlizdeli said:MD Anderson
Hi Faith,
I'm sorry that your son is going through this. I had anal cancer, not colon, but I am responding because I was treated at MD Anderson and the same team treats both. I thought I could help you in understanding what to expect when you get there.
First of all, MD Anderson is huge. There are several buildings and it is likely you will be going to at least 2 to start with. The days will be filled with tests, tests and tests. The good news is that they are very good at getting results back quickly and following up with consultations in a very timely manner. When I went there they wanted to do tests that I had already had. At first I was baffled, but then I was grateful because I was orignally mis-diagonsed at another facility. I was diagonsed with rectal cancer, then at MD Anderson they re-did the pathology, etc. and confirmed it was anal cancer. So what I am saying is that they are thorough. The Gastro Intestinal Oncology team is very good.The doctors work as a team; oncologist, radiologist, surgeon. But the hospital is very, very busy. There will be wait times, some times long ones depending on the tests. Although the place is huge, I felt like I got the attention I needed and people are very helpful. I used to live in Houston, moved out of state but then went back for treatment and stayed there for 2 months. I still fly back there every three months for my follow ups because I have such confidence in my doctors. If you are not from the area and have questions about Houston please let me know. I will help anyway I can.
As others have said, it's imporatnt for your son to have someone with him. There will be a lot of information and it can be overwhelming. MD Anderson has a great support group for caregivers as well. The patient advocacy office can assist with that if you feel it would help you.
I wish your son well and I will keep you and your family in my prayers.
Liz
Thank you for the first-hand account of your experience with M D Anderson. I've always heard they were one of the best in the country for cancer treatment. My cousin's husband went there a number of years ago near death from leukemia, and after being treated with what at the time was a clinical-trial drug, is now healthy and considered cured. We have no idea how long we will be there, because we don't know if he will have surgery right away or maybe chemo first. Just putting one foot in front of the other right now and trusting God to order our steps. Thank you for your prayers.0 -
faith_2faith_2 said:Thank you for your advice.
Thank you for your advice. His wife will be going with him to as many appointments as possible. We live 10 hours from Houston, so I'm going along so I can keep my grandchild. They thought about taking a small tape recorder to the appointments but don't know whether the doctors will allow that. There are many people praying for him, and we believe that God has a plan to give Jeff a hope and a future. My husband died 2 years ago of a brain tumor after spending over 7 months in the hospital, so this brings back so many emotions. There are so many people here who have faced this terrible disease with courage and faith. It's encouraging to read their posts.
The main thing is to make sure he opens up...Ask if he might want to come in here and get some good info about what he is going to go through and he will feel so much more comforted. This is a place for hope, love, and help. I don't know how I would have ever made it without these people on this site.........Tell him as well as his wife to join us, it will be so good for the both of them.......Love to all of you...Buzz0 -
BuzzBuzzard said:faith_2
The main thing is to make sure he opens up...Ask if he might want to come in here and get some good info about what he is going to go through and he will feel so much more comforted. This is a place for hope, love, and help. I don't know how I would have ever made it without these people on this site.........Tell him as well as his wife to join us, it will be so good for the both of them.......Love to all of you...Buzz
I think I will ask him to join here as soon as he knows what treatment he will be having. I know connecting with others of you who are facing or have faced what he is will encourage him. Thanks.0 -
It gives him an emotional brick wall to lean on.....faith_2 said:Buzz
I think I will ask him to join here as soon as he knows what treatment he will be having. I know connecting with others of you who are facing or have faced what he is will encourage him. Thanks.
and we can also offer questions for the both of them that might need to be asked to each Dr, Oncologist, so that they get all the answers needed for a battle plan. The most upsetting part of this is the lack of knowledge but in here they will get a MASTERS DEGREE in treatment options, such as chemo, surgery, medicines, emotional as well as physical things to look out for and the remedy for each....This is a house full of knowledge from all walks of life...It will be a year of Dr appts, tests, etc, for them but it will go quickly, and all of you will be as adept at this journeys nomenclature as one of the physicians. ask anything at all, as I always say we will talk about anything from Poop to Peanut Butter, and you can't embarrass us.....so relax, all will be well, we'll see to that..........and Keep tha Faith..
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Thank you. Right now heBuzzard said:It gives him an emotional brick wall to lean on.....
and we can also offer questions for the both of them that might need to be asked to each Dr, Oncologist, so that they get all the answers needed for a battle plan. The most upsetting part of this is the lack of knowledge but in here they will get a MASTERS DEGREE in treatment options, such as chemo, surgery, medicines, emotional as well as physical things to look out for and the remedy for each....This is a house full of knowledge from all walks of life...It will be a year of Dr appts, tests, etc, for them but it will go quickly, and all of you will be as adept at this journeys nomenclature as one of the physicians. ask anything at all, as I always say we will talk about anything from Poop to Peanut Butter, and you can't embarrass us.....so relax, all will be well, we'll see to that..........and Keep tha Faith..
Thank you. Right now he feels just fine - no symptoms that would indicate all this is going on inside him. Feels like the calm before the storm, I guess. I've been reading here long enough to know this is the place to come to for answers to any of his questions...an awesome "family" of people who genuinely care about and want to help each other.
It's a "family" no one ever wanted to join, but now that one is here, a wonderful source of hope, support and encouragement.0 -
Thinking about youfaith_2 said:Thank you. Right now he
Thank you. Right now he feels just fine - no symptoms that would indicate all this is going on inside him. Feels like the calm before the storm, I guess. I've been reading here long enough to know this is the place to come to for answers to any of his questions...an awesome "family" of people who genuinely care about and want to help each other.
It's a "family" no one ever wanted to join, but now that one is here, a wonderful source of hope, support and encouragement.
Hi Faith
Just wanted you to know that I have been thinking about you and praying that your son will get hopeful news in Houston.
Liz0 -
Thanks, Liz. We are here inlizdeli said:Thinking about you
Hi Faith
Just wanted you to know that I have been thinking about you and praying that your son will get hopeful news in Houston.
Liz
Thanks, Liz. We are here in Houston now. He had all the check-in appts yesterday along with X-rays. Ct scan today and then meeting with the surgeon, Dr. Curley, tomorrow. This place is a little overwhelming. One of their waiting rooms yesterday had close to 100 people in it. But they know what they are doing here...things were moving along smoothly. My son and his wife have experienced God's leading and amazing peace since his diagnosis. We appreciate your thoughts and prayers. How are you doing?
Faith0 -
faith_2faith_2 said:Thanks, Liz. We are here in
Thanks, Liz. We are here in Houston now. He had all the check-in appts yesterday along with X-rays. Ct scan today and then meeting with the surgeon, Dr. Curley, tomorrow. This place is a little overwhelming. One of their waiting rooms yesterday had close to 100 people in it. But they know what they are doing here...things were moving along smoothly. My son and his wife have experienced God's leading and amazing peace since his diagnosis. We appreciate your thoughts and prayers. How are you doing?
Faith
MD Anderson does not care about tape recorders. I went there for my second opinion and first 2 treatments in July,2009. I taped every doc I seen there from Oncologist..to Rad Doc..to dietician. I have 22 recorded appointments from there. they are quite open to that and even encourage it. I listened back to my tapes MANY times and can't believe the information I missed. Your mind is in such shock that you tend to drift. I am so glad I recorded everything. I even had my husband with me at every appointment but he remembered less than me because he too was in shock. Best of luck to you all. Take care.
Jennie0 -
Faithfaith_2 said:Thanks, Liz. We are here in
Thanks, Liz. We are here in Houston now. He had all the check-in appts yesterday along with X-rays. Ct scan today and then meeting with the surgeon, Dr. Curley, tomorrow. This place is a little overwhelming. One of their waiting rooms yesterday had close to 100 people in it. But they know what they are doing here...things were moving along smoothly. My son and his wife have experienced God's leading and amazing peace since his diagnosis. We appreciate your thoughts and prayers. How are you doing?
Faith
Faith
I'm thinking that the waiting area with the 100 people was the CT scan area. That was the worse wait! I totally understand and relate to how frustrating that is. But, that's the worse waiting experience I had at MD Anderson. Wishing you all well and praying for your son's healing.
Liz0 -
quick note
Faith, just to let you know you and your entire family are in my prayers. Everything will work out, you have a strong faith that is evident from your posts. That is so important. Remember to "believe". Hugs and warmest thoughts, Joyce0 -
Thanks, Jennie. They took aidlehunters said:faith_2
MD Anderson does not care about tape recorders. I went there for my second opinion and first 2 treatments in July,2009. I taped every doc I seen there from Oncologist..to Rad Doc..to dietician. I have 22 recorded appointments from there. they are quite open to that and even encourage it. I listened back to my tapes MANY times and can't believe the information I missed. Your mind is in such shock that you tend to drift. I am so glad I recorded everything. I even had my husband with me at every appointment but he remembered less than me because he too was in shock. Best of luck to you all. Take care.
Jennie
Thanks, Jennie. They took a tape recorder to their meeting with the surgeon this morning, which should be right about now actually, so I texted them to be sure and use it during the meeting with him.0 -
Joyce and Beth, thank youdorookie said:There is always HOPE
I am a stage 4 survivor, 2 years clear, please tell him there is hope and to never give up, my prayers are with your son and your whole family...
GOD BLESS YOU ALL
HUGS
Beth
Joyce and Beth, thank you for your kind words of encourgagement and for your prayers.
Hope both of you have a blessed day,
Faith0
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