Help with consultation?
The waiting is finally over! That was no fun at all. And good news - the PET scan showed no other cancer, so at this point Dad is still staged at stage 3 (T3,N?,M0. We have 3 consults in portland (Portland VA and OHSU - they are working together) next tuesday: surgery, chemotherapy and radiation.
I have no idea what to expect at this point. I want to fight for the best treatment possible, but unsure of exactly what that would be.
Anything you can recommend I learn/read/know before we go up there would be greatly appreciated!!
Thanks again for all the support we have received from everyone so far.
- Karrie
Comments
-
Karrie, If you haven't
Karrie, If you haven't already, make sure you get and keep copys of all lab work and test results. Take notes when you are talking to the doctors. We are giving so much info, it's impossible to remember it all.
I'm sure they will do radiation and chemo before surgery. If not, find out why. This is usually prodical.
Best of luck, Sandra0 -
Tri-Modal Therapy normally has chemo/radiation first
Karrie,
First it is great that your Dad is a candidate for surgery. That is his best chance for a "cure".
Assuming your Dad has adenocarcinoma, the "gold standard" of treatment for Stage 3 esophageal cancer is "Tri-modal" therapy. This typically includes three or four rounds of chemotherapy with a three chemotherapy drug cocktail like Cisplatin, Epirubicin, and 5 FU; and approximately 28 rounds of radiation therapy at the tumor site. This is designed to reduce the size or eradicate the tumor, and pick up any stray cancer cells that may have made their way through the lymphatics in the esophagus to the lymph nodes. Once that is completed a waiting period of a few weeks is taken to allow the chemotherapy and radiation to continue to work, and for the patient to recover from the treatment. Then a scan is done to assess the effects of the treatment and assess the patient's readiness for surgery.
Surgery is then completed and after surgery the tissue removed (including the esophagus, a portion of the stomach, and a number of lymph nodes immediately adjacent to the tumor site.) are sent to pathology and evaluated of any signs of cancer cells. If active cells are found outside the esophagus (e.g. in some of the lymph nodes removed) follow up chemotherapy is recommended.
I had surgery first and then had my chemotherapy. This is not typical. Normally only Stage 1 patients go directly to surgery without chemotherapy or radiation. In my case the original staging was Stage 1 so I went directly to surgery. Once they did the pathology on the lymph nodes removed in surgery, they found active cancer cells in one of the 21 nodes removed. As a result they recommended follow up chemotherapy. I can tell you post surgical chemotherapy is much more difficult than pre-surgical chemotherapy. After surgery your Dad's digestive system will need to get used to his new "plumbing" and this has it's own set of challenges. Adding the side effects of chemotherapy makes recovery that much more challenging.
So as you go to the consult for treatment planning, I would be asking:
1. What is the pre-surgery treatment plan
2. Does my Dad has any medical issues that may affect his treatment plan or surgery?
3. What surgical approach will be used and why?
4. How many surgeries of this type does the planed surgical facility do, and what are their recovery statistics?
5. What are my Dad's possibilities for having the treatment and surgery plan evaluated by an independent second opinion?
When it comes to the surgery itself there are three major surgical options for esophageal cancer.
First the traditional Ivor Lewis (IL) approach. In this approach two large incisions are made. One in the abdomen between the belly button and sternum and one from just under the right shoulder to the middle of the patient’s back. The abdominal incision is used to release the stomach so it can be modified and moved higher to be connected to the remainder of the esophagus. The back incision is used to enter through a space in the ribs to remove a section of the esophagus and form the new connection between the remainder of the esophagus and the remainder of the stomach.
Many surgeons around the US perform this surgical approach.
This approach is the most invasive of the approaches and typically has the longest recovery time. I had this particular surgery and I was in the hospital for 12 days. The original estimate was 10 days but I got an infection in my incisions and was there an extra two days while they gave me IV antibiotics.
Second the Transhiatal Esophagectomy approach. In this approach a large incision is made in the abdomen between the belly button and sternum and a smaller incision is made in the patient’s neck. The abdominal incision is used to perform the same functions as in the IL approach described above. The incision in the neck is used to remove a section of the esophagus and to form a new connection between the remainder of the esophagus and the remainder of the stomach. A more detailed description can be found at Dr. Mark B. Orringer at University of Michigan Medical Center is a leader in this surgical approach.
The in hospital recovery time for this approach is shorter than the IL approach and the recovery time is somewhat shorter.
Third the Minimally Invasive Esophagectomy (MIE) approach. In this robotically assisted approach a number of very small incisions are made in the abdomen and in the neck. The surgeon uses the robot “arms” and cameras through the small incisions to release and modify the stomach, remove a section of the esophagus and a section of the stomach and re-attach the remainder of the stomach and esophagus. A more detailed description can be found at Dr. James D. Luketich at University of Pittsburgh Cancer Institute is the leader in this surgical approach.
The in hospital recovery time for this approach is the shortest of the approaches and the recovery time is shorter as well.
There are a number of reasons why a surgeon may recommend one approach over another. The area around the esophagus has a number of lymph nodes connected into the lining of the esophagus and frequently a number of these are removed to insure a clear surgical margin around the cancer and for pathological examination to validate the staging done prior to surgery. In some cases, prior surgical scar tissue and other medical issues may dictate one approach over the other.
Be sure you understand your Dad's surgeon's reasoning for selecting one approach over the other. “I don’t do that approach” is not the answer you are looking for. This is MAJOR surgery and you want to have a surgeon that does MANY of these surgeries a year.
When I had my surgery I did not even know an MIE was available. Given my experience, if I had it to do over again I would have traveled to a major cancer center and found a surgeon who is competent in MIE.
Of course your Dad needs to be comfortable with his surgeon and insurance is sometimes an issue. But I wanted to you be aware that there are choices and you should make an informed decision.
I hope this information helps you prepare your questions for the consult.
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
Two year survivor
Life may not be the party we hoped for, but while we are here we might as well dance!0 -
Good idea.sandy1943 said:Karrie, If you haven't
Karrie, If you haven't already, make sure you get and keep copys of all lab work and test results. Take notes when you are talking to the doctors. We are giving so much info, it's impossible to remember it all.
I'm sure they will do radiation and chemo before surgery. If not, find out why. This is usually prodical.
Best of luck, Sandra
Thanks Sandy,
I was assuming they would all talk to each other - but I guess that is a bit naive, yes? Okay, we will make sure we get copies.
Thanks for the heads up.
- Karrie0 -
huge help!paul61 said:Tri-Modal Therapy normally has chemo/radiation first
Dr. Mark B. Orringer at University of Michigan Medical Center is a leader in this surgical approach.
Karrie,
First it is great that your Dad is a candidate for surgery. That is his best chance for a "cure".
Assuming your Dad has adenocarcinoma, the "gold standard" of treatment for Stage 3 esophageal cancer is "Tri-modal" therapy. This typically includes three or four rounds of chemotherapy with a three chemotherapy drug cocktail like Cisplatin, Epirubicin, and 5 FU; and approximately 28 rounds of radiation therapy at the tumor site. This is designed to reduce the size or eradicate the tumor, and pick up any stray cancer cells that may have made their way through the lymphatics in the esophagus to the lymph nodes. Once that is completed a waiting period of a few weeks is taken to allow the chemotherapy and radiation to continue to work, and for the patient to recover from the treatment. Then a scan is done to assess the effects of the treatment and assess the patient's readiness for surgery.
Surgery is then completed and after surgery the tissue removed (including the esophagus, a portion of the stomach, and a number of lymph nodes immediately adjacent to the tumor site.) are sent to pathology and evaluated of any signs of cancer cells. If active cells are found outside the esophagus (e.g. in some of the lymph nodes removed) follow up chemotherapy is recommended.
I had surgery first and then had my chemotherapy. This is not typical. Normally only Stage 1 patients go directly to surgery without chemotherapy or radiation. In my case the original staging was Stage 1 so I went directly to surgery. Once they did the pathology on the lymph nodes removed in surgery, they found active cancer cells in one of the 21 nodes removed. As a result they recommended follow up chemotherapy. I can tell you post surgical chemotherapy is much more difficult than pre-surgical chemotherapy. After surgery your Dad's digestive system will need to get used to his new "plumbing" and this has it's own set of challenges. Adding the side effects of chemotherapy makes recovery that much more challenging.
So as you go to the consult for treatment planning, I would be asking:
1. What is the pre-surgery treatment plan
2. Does my Dad has any medical issues that may affect his treatment plan or surgery?
3. What surgical approach will be used and why?
4. How many surgeries of this type does the planed surgical facility do, and what are their recovery statistics?
5. What are my Dad's possibilities for having the treatment and surgery plan evaluated by an independent second opinion?
When it comes to the surgery itself there are three major surgical options for esophageal cancer.
First the traditional Ivor Lewis (IL) approach. In this approach two large incisions are made. One in the abdomen between the belly button and sternum and one from just under the right shoulder to the middle of the patient’s back. The abdominal incision is used to release the stomach so it can be modified and moved higher to be connected to the remainder of the esophagus. The back incision is used to enter through a space in the ribs to remove a section of the esophagus and form the new connection between the remainder of the esophagus and the remainder of the stomach.
Many surgeons around the US perform this surgical approach.
This approach is the most invasive of the approaches and typically has the longest recovery time. I had this particular surgery and I was in the hospital for 12 days. The original estimate was 10 days but I got an infection in my incisions and was there an extra two days while they gave me IV antibiotics.
Second the Transhiatal Esophagectomy approach. In this approach a large incision is made in the abdomen between the belly button and sternum and a smaller incision is made in the patient’s neck. The abdominal incision is used to perform the same functions as in the IL approach described above. The incision in the neck is used to remove a section of the esophagus and to form a new connection between the remainder of the esophagus and the remainder of the stomach. A more detailed description can be found at
The in hospital recovery time for this approach is shorter than the IL approach and the recovery time is somewhat shorter.
Third the Minimally Invasive Esophagectomy (MIE) approach. In this robotically assisted approach a number of very small incisions are made in the abdomen and in the neck. The surgeon uses the robot “arms” and cameras through the small incisions to release and modify the stomach, remove a section of the esophagus and a section of the stomach and re-attach the remainder of the stomach and esophagus. A more detailed description can be found at Dr. James D. Luketich at University of Pittsburgh Cancer Institute is the leader in this surgical approach.
The in hospital recovery time for this approach is the shortest of the approaches and the recovery time is shorter as well.
There are a number of reasons why a surgeon may recommend one approach over another. The area around the esophagus has a number of lymph nodes connected into the lining of the esophagus and frequently a number of these are removed to insure a clear surgical margin around the cancer and for pathological examination to validate the staging done prior to surgery. In some cases, prior surgical scar tissue and other medical issues may dictate one approach over the other.
Be sure you understand your Dad's surgeon's reasoning for selecting one approach over the other. “I don’t do that approach” is not the answer you are looking for. This is MAJOR surgery and you want to have a surgeon that does MANY of these surgeries a year.
When I had my surgery I did not even know an MIE was available. Given my experience, if I had it to do over again I would have traveled to a major cancer center and found a surgeon who is competent in MIE.
Of course your Dad needs to be comfortable with his surgeon and insurance is sometimes an issue. But I wanted to you be aware that there are choices and you should make an informed decision.
I hope this information helps you prepare your questions for the consult.
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
Two year survivor
Life may not be the party we hoped for, but while we are here we might as well dance!
Wow - Thanks Paul! This is a huge help. It give me a strong foundation to go on.
Dad will be given treatment at the Porland Va/OHSU hospital (they work together) The doctors name is Dr. Donn Spight. He does approximately 4 MIE's a month (not sure if that is good or not, considering this is a rare condition.) He runs the intern training clinic on minimal invasive surgery over at OHSU and has a clinical practice at the Portland VA. He's young (finished his fellowship in 2007), but I'm not sure if that is a help or hindrance. (On a side note, I found a picture of him on the internet and he gives off a warm and competent persona - so at least that's good!) :-)
It does sounds like they are going to do both chemo and radiation first before the surgery, but those are the only details I know. 28 rounds of radiation sounds like a huge amount!?! Do they do radiation or chemo first? I hope we can do some of this in our hometown (its takes almost 3 hours to drive to Portland.)
I have already written the questions down on a 3x5 card. This is exactly what I need!!
Does anyone have any other info on Dr. Donn Spight?
Thanks again!
- Karrie
(PS - after being told stage 3, then stage 4, then back to stage 3....I am still uneasy and have this feeling like I'm waiting for the other shoe to drop)0 -
Hi KarrieKarrie42 said:huge help!
Wow - Thanks Paul! This is a huge help. It give me a strong foundation to go on.
Dad will be given treatment at the Porland Va/OHSU hospital (they work together) The doctors name is Dr. Donn Spight. He does approximately 4 MIE's a month (not sure if that is good or not, considering this is a rare condition.) He runs the intern training clinic on minimal invasive surgery over at OHSU and has a clinical practice at the Portland VA. He's young (finished his fellowship in 2007), but I'm not sure if that is a help or hindrance. (On a side note, I found a picture of him on the internet and he gives off a warm and competent persona - so at least that's good!) :-)
It does sounds like they are going to do both chemo and radiation first before the surgery, but those are the only details I know. 28 rounds of radiation sounds like a huge amount!?! Do they do radiation or chemo first? I hope we can do some of this in our hometown (its takes almost 3 hours to drive to Portland.)
I have already written the questions down on a 3x5 card. This is exactly what I need!!
Does anyone have any other info on Dr. Donn Spight?
Thanks again!
- Karrie
(PS - after being told stage 3, then stage 4, then back to stage 3....I am still uneasy and have this feeling like I'm waiting for the other shoe to drop)
My husband, Don (age 62) just completed 28 rounds of radiation and 5 rounds of chemo. He had radiation every day M-F and on Wednesdays, in addition to radiation, he had chemo.
On the days of chemo, Don would start the day with blood draws in the lab, then go on to radiation, then go to the infusion room where the chemno onc would give the okay after reviewing the labs for the chemo to proceed. He would see the radiation oncologist and chemo oncologist each week. At about week 3, the chemo onc also added fluids via IV on Wednesdays and Fridays - and that was a huge benefit to Don.
Don had three anti-nausea meds and two antihistamines ran through the iv portacath prior to each chemo (the chemo used for Don was taxol and carboplatin). Don did very well with his treatment and yes, there were side effects - but not as bad as we thought. We were very surprised that two days after his first chemo treatment -he all of the sudden could not stand the smell of coffee - and smells are still bothersome and food doesn't taste like it should. It is our understanding this all pretty much goes away after surgery.
Our surgeon is at the University of Michigan which is about 1-1/2 to 2 hrs from where we live, so to better accomodate us, the chemo and radiation were done at a cancer center in Kalamazoo, MI which is only about 30 minutes from where we live. It takes some time to get things situated for the radiation - which I did not understand when we started this - but they had a portacath installed for the ease of chemo for Don (done outpatient), then they tattooed him in three places to line up the radiation beam and fitted him to some sort of body form for the radiation. I just thought radiation was a matter of walking up to a machine, lining it up and zap. It's a little more sophisticated than that, and exact measurements are necessarily taken.
My husband was diagnosed stage 3 (T3N1M0) on 11-21-2011 and began treatment Jan. 4th. The holidays added to the delay of treatment getting started. On Tuesday of this week, he will have pre-op CT scan and another barium swallow test to be certain the cancer has not spread. His surgery is scheduled for the 22nd of March.
I wonder if it is possible that they said your father was T4NxM0 - which I suppose could be misinterpreted as stage 4? I truly hope that is the case and stage 3 it is.
So glad you found us - and as everyone told me - sorry you needed to. Pleae feel free to ask any questions, seek advice, or just plain ol' vent here whenever you can. We'll be looking for news from you regarding your father.
Best of everything to your dad and your family,
Judy0 -
Karrie, as Paul said Dr.Karrie42 said:huge help!
Wow - Thanks Paul! This is a huge help. It give me a strong foundation to go on.
Dad will be given treatment at the Porland Va/OHSU hospital (they work together) The doctors name is Dr. Donn Spight. He does approximately 4 MIE's a month (not sure if that is good or not, considering this is a rare condition.) He runs the intern training clinic on minimal invasive surgery over at OHSU and has a clinical practice at the Portland VA. He's young (finished his fellowship in 2007), but I'm not sure if that is a help or hindrance. (On a side note, I found a picture of him on the internet and he gives off a warm and competent persona - so at least that's good!) :-)
It does sounds like they are going to do both chemo and radiation first before the surgery, but those are the only details I know. 28 rounds of radiation sounds like a huge amount!?! Do they do radiation or chemo first? I hope we can do some of this in our hometown (its takes almost 3 hours to drive to Portland.)
I have already written the questions down on a 3x5 card. This is exactly what I need!!
Does anyone have any other info on Dr. Donn Spight?
Thanks again!
- Karrie
(PS - after being told stage 3, then stage 4, then back to stage 3....I am still uneasy and have this feeling like I'm waiting for the other shoe to drop)
Karrie, as Paul said Dr. Orringer at the University of Michigan is indeed a leader in the transhiadal esophagectomy. What Paul may be unaware of is that at the university of Washington Dr. Mike Mulligan is a well recognized leader in the THE and trained at the University of Michigan. Dr. Mulligan also practices at the Seattle VA hospital. If I were as close as the Portland area as you are personally I would come to Seattle and have Dr. Mulligan perform the surgery if a THE is the procedure that your father is going to have done. Thats my personal experience with him performing the THE on me at the UW and on a cousin of mine at the VA. all of my doctors are amazed at the work that Dr. Mulligan performed on me and he is the only surgeon I would have for this procedure. I know you are in Oregon and may not be able to travel to Washington but if you decide to let me know and I'll get you his contact information.
Best wishes to you and your father I will be thinking of and praying for both of you.
Dave0
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