Dad newly diagnosed with EC
My mom and him wasted no time. On Tuesday, they packed their bags and drove 8 hours to New York City to meet with a couple different doctors. They asked me to stay at their house and take care of their animals while they were gone, so everything I know is what my mom has been telling me over the phone.
I really was expecting bad news. I did some research (naturally) on the internet and read about the grim statistics for EC, and the poor prognosis. I also read that many people don't discover they have EC until it is stage IV and inoperable. So when my mom told me that this morning, my dad would be getting a PET scan and the doctors would be able to stage the cancer, I was such a nervous wreck, expecting the worst. I don't think I slept more than an hour last night.
Unfortunately, my dad wasn't able to meet with Sloan Kettering in NYC in such a short notice. I believe he went to Beth Israel, which I haven't heard anything about myself. I expressed that I wished he would try to get in at SK, since I've heard nothing but good things about them, so we'll see....
Anyway, the results from the PET came back with some good news- He is either Stage II or III, so he can have the operation! I breathed such a sigh of relief when I heard. So my question is, what should I expect next? I heard mention of radiation and chemo pre-op. I think my mom said they were meeting with a radiation specialist tomorrow. How long does one get chemo/radiation in general before they can have the operation?
My dad is very healthy and active. What should I expect when he undergoes chemo/radiation? My mind is such a whirlwind of questions right now, so I apologize. Any insight or personal experience in this matter would be greatly appreciated. Thanks so much.
Comments
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Welcome to our Family
Hi Audrey - I want to welcome you to our family, as unfortunate as it may be. You will be glad you are not just stalking us anymore and have asked for help and advice. There are some great people on this site who know so much. I am fairly new to this site as well. My husband is T3N1M0. T3 means stage iii. N1 means one lymph node is involved. M0 reflects that the cancer has not metatisized to any organs. My husband was diagnosed on Feb 1st. The protocol, for the most part, for EC patients is chemo and radiation and then surgery as long as the cancer hasn't spread. Brendon had two cycles of chemo and 28 sessions of radiations. Chemo and radiation affect everyone so differently that it's hard to tell you for certain what to expect. There are many different types of chemo drugs also and each drug has different side effects. You will want to get your dad a great team of doctors. An oncologist, a radiation doctor, a dietician. No matter how active your dad is, the radiation and chemo will probably knock him on his butt for a little while. The first round of chemo and the first couple weeks of radiation weren't too terribly hard on Brendon. However, the 2nd round of chemo and the last 2 weeks of radiation and even now (a week and half after radiation ended) he is having a difficult time eating anything.
I would recomend that your dad have a j-tube installed prior to the beginning of chemo and radiation treatments. That way, when he begins struggling to swallow due to the burning of the radiation or when nausea have over-taken, your dad will still be able to keep his weight up due to the feeding tube. I know that having a feeding tube sounds scary but it's very easy to get used to and is actually a very good thing to have. They surgically will put the tube into your dad's intestines. He can hook up to a pump at night (or anytime!) and get all of his vitamins and nutrients.
You will want to research the best type of surgery for your dad.
You also need to make sure that your dad has all the proper tests/scans completed so that he is diagnosed properly. EGD, EUS, PET scan, CT scan. All of these tests will help in an accurate staging.
And girl, don't go read any of the statistics on the internet. Most of those statistics are out of date and are REALLY REALLY scary! I made the same mistake and I was a MESS!!!! Your father is lucky that they caught the cancer when it is still operable. So the good Lord is watching over you all. I will pray for you and your family.
Please feel free to message me directly at any time if you need to vent, have more questions, or anything!!!
Susie0 -
HelloSusie_Brendon said:Welcome to our Family
Hi Audrey - I want to welcome you to our family, as unfortunate as it may be. You will be glad you are not just stalking us anymore and have asked for help and advice. There are some great people on this site who know so much. I am fairly new to this site as well. My husband is T3N1M0. T3 means stage iii. N1 means one lymph node is involved. M0 reflects that the cancer has not metatisized to any organs. My husband was diagnosed on Feb 1st. The protocol, for the most part, for EC patients is chemo and radiation and then surgery as long as the cancer hasn't spread. Brendon had two cycles of chemo and 28 sessions of radiations. Chemo and radiation affect everyone so differently that it's hard to tell you for certain what to expect. There are many different types of chemo drugs also and each drug has different side effects. You will want to get your dad a great team of doctors. An oncologist, a radiation doctor, a dietician. No matter how active your dad is, the radiation and chemo will probably knock him on his butt for a little while. The first round of chemo and the first couple weeks of radiation weren't too terribly hard on Brendon. However, the 2nd round of chemo and the last 2 weeks of radiation and even now (a week and half after radiation ended) he is having a difficult time eating anything.
I would recomend that your dad have a j-tube installed prior to the beginning of chemo and radiation treatments. That way, when he begins struggling to swallow due to the burning of the radiation or when nausea have over-taken, your dad will still be able to keep his weight up due to the feeding tube. I know that having a feeding tube sounds scary but it's very easy to get used to and is actually a very good thing to have. They surgically will put the tube into your dad's intestines. He can hook up to a pump at night (or anytime!) and get all of his vitamins and nutrients.
You will want to research the best type of surgery for your dad.
You also need to make sure that your dad has all the proper tests/scans completed so that he is diagnosed properly. EGD, EUS, PET scan, CT scan. All of these tests will help in an accurate staging.
And girl, don't go read any of the statistics on the internet. Most of those statistics are out of date and are REALLY REALLY scary! I made the same mistake and I was a MESS!!!! Your father is lucky that they caught the cancer when it is still operable. So the good Lord is watching over you all. I will pray for you and your family.
Please feel free to message me directly at any time if you need to vent, have more questions, or anything!!!
Susie
Hi Audrey,
I was diagnosed 7/1/2010 with Stage 2B (T2N1M0) EC at 49 years old. My treatment consisted of six rounds of chemo (Taxol & Carboplatin) one treatment per week. At the same time I received 28 radiation treatments Monday through Friday. My post treatment scan was clean as well as my post-op pathology. Surgery (MIE) was done 11/18/2010 at Brigham and Women’s in Boston. I have my first post-op CT scan tomorrow to see if all is still good.
I opted out of feeding tube during treatment, much to my medical & radiation oncologist’s disapproval. It was no picnic but you make it to the end. The Biggest problems I had were fatigue, joint pain some nausea and difficulty swallowing.
To Susie’s point don’t get too hung up with what you read on the internet. The things your folks are doing like finding a place with lots of experience treating this and a surgeon that does lots of these surgeries makes all the difference.
Feel free to ask as many questions as often as you like, people on this board have seen it all.
Good Luck,
Joel0 -
Hi. Welcome to our site. As
Hi. Welcome to our site. As you can tell all treatment is different and we all react differently. The one thing I know for sure is there will be rough days ahead.It is a roller coaster ride. I was dx'd in Nov '07 T3N1M0, had four rounds of chemo and surgery in May '08. My doctor is the only one on here that didn't do radiation. I have been cancer free since then.
I didn't have a feeding tube except during surgery. I was fortunate to keep an appetite, even though I was sick. I didn't use one afterwards either, but I beleive I needed one. I did lose 98 pds after surgery.
I didn't find this site until a few months ago. I could have used the advice so many on here give. If I had known, I would have requested to use the feeding tube. I know someone would have told me that, and a few other things I've learned.
Your dad is the age I was when I was dx'd. Today I am fine. My appetite is good, and I've gained back nine pds. We all have ajustments to make after surgery, but good health is worth it.
I will be praying for your dad and the family ' Sandra0 -
Welcome to our little EC family
Hi Audrey,
Welcome to our little family. The initial diagnosis of Cancer can certainly be frightening. People who are my age, (I am 62), have grown up in an era when the diagnosis of cancer was almost always a terminal diagnosis. With new diagnostic and treatment options that is no longer the case.
Ignore the statistics. They don’t apply to your father because:
First – They are dated and do not reflect the impact of current diagnostic and treatment capabilities.
Second – Your dad is healthy and active. A “typical” EC patient is in their early 70’s with at least one other significant health issue.
Third – It appears from the initial PET scan the cancer is localized and can be removed surgically. Of course these initial results need to be validated with an endoscopic ultrasound examination, appropriate blood tests, and a thorough physical exam by a surgeon oncologist. But it sounds like your parents are aggressively pursuing the best medical care they can find; so that should be a non issue.
The “gold standard” for EC treatment for “operable” patients includes what is referred to as “trimodal therapy”. It includes targeted radiation of the tumor site, chemotherapy to address the potential of cancer cells outside the tumor site, and then surgery to removed the affected esophageal and stomach tissue.
A survivor’s reaction to the therapy is different for each of us. Common reactions to radiation and chemotherapy include:
- Fatigue
- Nausea and abdominal distress
- Weight loss
Oncologists have medical interventions to deal with many of the side effects. I am not going to suggest that radiation and chemotherapy are not difficult, but they are manageable with careful monitoring by your father’s oncologist.
Recovery from surgery depends on the patient health background and the type of surgery that is determined to be the best fit for their respective situation. Be sure to do your research carefully in this area. A second opinion is very valuable.
The most important thing to supporting a successful outcome is to get the most experienced and innovative medical team to assist your parents in planning their management of this diagnosis. Your parents need to find a leading cancer center with significant experience in managing esophageal cancer. It sounds like you have identified one; there are certainly others within an 8 hour driving distance. I would add UPMC to your parents list of potential resources.
It is great that your parents have your help.
It sounds like your parents got good news today, I hope they continue to get good news.
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
3/14/2011 CT Scan NED
Life may not be the party we hoped for, but while we are here we might as well dance!0 -
Hi Susie- sounds like yourSusie_Brendon said:Welcome to our Family
Hi Audrey - I want to welcome you to our family, as unfortunate as it may be. You will be glad you are not just stalking us anymore and have asked for help and advice. There are some great people on this site who know so much. I am fairly new to this site as well. My husband is T3N1M0. T3 means stage iii. N1 means one lymph node is involved. M0 reflects that the cancer has not metatisized to any organs. My husband was diagnosed on Feb 1st. The protocol, for the most part, for EC patients is chemo and radiation and then surgery as long as the cancer hasn't spread. Brendon had two cycles of chemo and 28 sessions of radiations. Chemo and radiation affect everyone so differently that it's hard to tell you for certain what to expect. There are many different types of chemo drugs also and each drug has different side effects. You will want to get your dad a great team of doctors. An oncologist, a radiation doctor, a dietician. No matter how active your dad is, the radiation and chemo will probably knock him on his butt for a little while. The first round of chemo and the first couple weeks of radiation weren't too terribly hard on Brendon. However, the 2nd round of chemo and the last 2 weeks of radiation and even now (a week and half after radiation ended) he is having a difficult time eating anything.
I would recomend that your dad have a j-tube installed prior to the beginning of chemo and radiation treatments. That way, when he begins struggling to swallow due to the burning of the radiation or when nausea have over-taken, your dad will still be able to keep his weight up due to the feeding tube. I know that having a feeding tube sounds scary but it's very easy to get used to and is actually a very good thing to have. They surgically will put the tube into your dad's intestines. He can hook up to a pump at night (or anytime!) and get all of his vitamins and nutrients.
You will want to research the best type of surgery for your dad.
You also need to make sure that your dad has all the proper tests/scans completed so that he is diagnosed properly. EGD, EUS, PET scan, CT scan. All of these tests will help in an accurate staging.
And girl, don't go read any of the statistics on the internet. Most of those statistics are out of date and are REALLY REALLY scary! I made the same mistake and I was a MESS!!!! Your father is lucky that they caught the cancer when it is still operable. So the good Lord is watching over you all. I will pray for you and your family.
Please feel free to message me directly at any time if you need to vent, have more questions, or anything!!!
Susie
Hi Susie- sounds like your husband and my dad are in the same boat. I will admit that the idea of a feeding tube does sound a bit scary, but I guess getting the nutrients my dad needs that way is better than not getting them at all. My dad has always been slim, so it does concern me a bit that he will lose too much weight while getting radiation and chemo. The stats definitely scared the crap out of me, but I am trying to think positive, especially after the good news we received this past week. I am so relieved that he is eligible to have surgery!
My dad decided to do his radiation/chemo treatment in NYC. It will be six weeks, as many of you said it would be. It will be stressful being away from him for that long, and much of the time, he will be relying on friends of the family to help him, since my mom can't go and take an entire six weeks off from her job. But my dad is stubborn and robust- I know he'll make it through all right.0 -
Joel, I really hope yourJoel C said:Hello
Hi Audrey,
I was diagnosed 7/1/2010 with Stage 2B (T2N1M0) EC at 49 years old. My treatment consisted of six rounds of chemo (Taxol & Carboplatin) one treatment per week. At the same time I received 28 radiation treatments Monday through Friday. My post treatment scan was clean as well as my post-op pathology. Surgery (MIE) was done 11/18/2010 at Brigham and Women’s in Boston. I have my first post-op CT scan tomorrow to see if all is still good.
I opted out of feeding tube during treatment, much to my medical & radiation oncologist’s disapproval. It was no picnic but you make it to the end. The Biggest problems I had were fatigue, joint pain some nausea and difficulty swallowing.
To Susie’s point don’t get too hung up with what you read on the internet. The things your folks are doing like finding a place with lots of experience treating this and a surgeon that does lots of these surgeries makes all the difference.
Feel free to ask as many questions as often as you like, people on this board have seen it all.
Good Luck,
Joel
Joel, I really hope your post-op CT scan went well! Please let me know.
Fortunately, my dad has some awesome friends right in Manhattan who have offered for him to stay there while he gets his treatment. I know they will be there to help him if and when he gets fatigued and tired.
Sounds like you have great luck with the MIE. I will definitely bring this up to my father as an option to discuss with the docs.0 -
Sandra, I am happy to seesandy1943 said:Hi. Welcome to our site. As
Hi. Welcome to our site. As you can tell all treatment is different and we all react differently. The one thing I know for sure is there will be rough days ahead.It is a roller coaster ride. I was dx'd in Nov '07 T3N1M0, had four rounds of chemo and surgery in May '08. My doctor is the only one on here that didn't do radiation. I have been cancer free since then.
I didn't have a feeding tube except during surgery. I was fortunate to keep an appetite, even though I was sick. I didn't use one afterwards either, but I beleive I needed one. I did lose 98 pds after surgery.
I didn't find this site until a few months ago. I could have used the advice so many on here give. If I had known, I would have requested to use the feeding tube. I know someone would have told me that, and a few other things I've learned.
Your dad is the age I was when I was dx'd. Today I am fine. My appetite is good, and I've gained back nine pds. We all have ajustments to make after surgery, but good health is worth it.
I will be praying for your dad and the family ' Sandra
Sandra, I am happy to see that you are doing well three years later! It really gives me hope and helps to keep me thinking positive. That is interesting that the doctors didn't mention the feeding tube to you- I will keep this in mind to bring up to Dad.
So glad to see that you are in good health now, Sandra!
Paul, thank you very much for the information. It was helpful to read. Definitely brightened my day a bit.0
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