Surgery questions - please help

milica

My mom (58 years old) has been diagnosed with esophageal cancer 4 months ago.
She has had 5 weeks of radiation and chemo (cisplatin and 5 FU) and after many rough weeks of recovery she is doing well.
She is meeting with surgeon (Dr Gail Darling – Toronto) tomorrow to discuss the operation and I want to prepare for all the questions we need to ask the surgeon.
If someone can please let me know what questions to ask that would be very helpful.
During this very difficult time it was good to find this forum and to read some of the stories and gain hope and courage from all of you.
God bless you all.

chemosmoker

Hoping others post soon!!!
Milica,

I am surprised that more people are not chiming in yet about this, but I would want to share that it would be very important to know HOW MANY of these procedures these doctors and thoracic surgeons do each WEEK, not month or year, as that is a BIG deal in survival rates with this cancer!! That is noted all over these boards.

I will hope William and several others very knowledgeable in this area will post to you tonight and offer you some much needed advice as to what you need to be asking at this appointment! I am not experienced enough to offer more than this though.

I am praying for you both.
God bless,

-Eric

jim2011

up-coming surgery
I was feeling so good about a month after chemo/radiation ended that I was saying "wtf, do I even need surgery??". I am a salesperson in my mid 50's and probably an easy sale. Totally rough time during chemo/radiation but I felt that the surgeons and the nurse coordinator saved my life by answering my question with their own comment and question. "Jim, you've won the battle and now do you want to win the war?".
I was prepared for a tough ending to the war. I needed to win! My mother (in her early 70's) had the same surgery as me and some unfortunate complications. I did not want to end that way and my questions tended to be on the odds of surviving type. I even cancelled the lease on my car and cut my expenses to the bone after diag in November 2010.
Its tough surgery and the doctors take it very seriously. I wonder if they are even able to sleep the night before.
I would insist on honest answers from the doctors even if you need to go into the hallway to talk. I would also want realistic pain management and a clean and quiet recovery environment.
ok...ok, I just remembered. I was really nervous about the new connection between my stomach and whats left of my esophagas. That is where my mother had her problems and I had heard that the chances of leakage was 1 in 4 so to me that was a big deal.
I wanted to take things slow slow slow as far as liquids and then soft food.
Didn't want to risk vomiting as I felt that could tend to be a bad thing for the connection. I stayed away from morphine because of that too. Had dilaudid instead.
I ramble...I know. You should see my texts. lol
I wish you and your mother the best.

BMGky

Chemosmoker and Jim are
Chemosmoker and Jim are giving you good information.

You do need to know if your surgeon does esophagectomies regularly and frequentlly. Does the surgeon have extensive experience performing the MIE form of the esophagus removal. While it is not a piece of cake per se, it is a whole lot easier in recovery than the Ivor Lewis [IL] which my husband had. But hey! If that is the form you have to have, go for it.

Also, is the hospital familiar with esophagectomy patient's needs. Due to the extensiveness of the surgery, if you have the IL, the nurses have to be attentive as the patient is tubed and cut and wrapped up and cannot do for themselves. If at all possible, someone needs to be with your Mother to see that she is getting what she needs when she needs it. Watch the incision sites for infection. Nurses look but may not see. A wound infection can be quite a problem. My husband, who had never experienced atrial fibrillation, had a scary, significant incident; however, there was an experienced cardiologist as a part of his cancer team, and he got it well under control.

It is a long surgery. My husband had two surgeons: his primary and a backup surgeon. His surgeon was very thorough and would not release him until he was sure that there was no leakage so my husband was in the hospital for 30 days.

Of course, when you return home, there are also issues to deal with there. But remember, the surgery gives your Mother a chance for life. There are survivors. How long does a survivor have? Who knows. Many people are surviving 8, 10, 15 years. Some are not so fortunate. In my opinion, the opportunity to try is not available to many and feel surgery candidates must give it their all.

I don't know if this is of any information, but hopefully, you have gleaned something. Best of luck to your Mother and to you. BMGky

paul61

Dr. Darling has excellent credentials
Hello. I am sorry that you find us under these difficult circumstances for your mother.

You did not mention any specific staging information for your mother, but since she is being scheduled for surgery, I assume she is stage 3 or below. Your doctor should have a staging level for your mother that includes a series of letters and numbers like T2N1M0 and a stage number.

Typical protocols include chemotherapy, radiation therapy, and then surgery.

Your mother is relatively young, so hopefully there are not any additional health issues that would complicate her surgery (e.g. coronary, respiratory, or diabetic issues).

Dr. Gail Darling certainly seems to have good credentials and a good reputation for successful cardiothoracic surgery. I see she practices at Toronto General. She performed surgery on a member of our board named Derek his CSN ID is dgsmith. I see she is qualified to perform the latest laparoscopic procedure for Esohpageal Cancer patients. Therefore, I am assuming that she is planning a "Minimally Invasive Esophagectomy" for your mother.

Questions I would ask would include:

- What type of surgery will be performed (Minimally Invasive Esophagectomy, Ivor Lewis, Transhiatal Esophagectomy)?
- How many of these surgeries do you perform each year?
- Is this surgery being performed with curative intent?
- What is my mother’s staging and how does that affect the surgical procedure used?
- Do you see any items of concern in my mother’s medical history related to this surgery?
- What steps need to be taken to confirm my mother is a candidate for this surgery?
- How long will my mother be in the hospital (how long in ICU, how long on the thoracic surgery floor)?
- Will you make arrangements for specialized after care resources she will need post surgery? (e.g. home care nursing, specialized medical equipment)
- Does Toronto General have extended stay facilities for families of surgical patients close to the hospital?
- Can you give me the name of one of your previous surgical patients that would be open to a contact and discussion about the operation planed and their recovery experience?

This is a MAJOR operation and you want to be sure your mother understands that recovery will take some time. By “some time” I mean four to six months at best before she begins to feel like herself again. Of course the two critical tests that need to be done after surgery are the “swallow test” a test to insure the surgical connection between the remnants of your mother’s esophagus and stomach has no leaks and the “pathology analysis” a study of the tissue removed in the operation to look for cancer cells that may have escaped from the primary tumor and may be in other structures around the esophagus. The results of the pathology tests will indicate if additional chemotherapy may be recommended post surgery.

Your mother should be scheduled for a CT scan and PET scan after chemotherapy and prior to surgery to evaluate the response of the cancer to her chemotherapy protocol.

It looks like your mother has an excellent surgeon. I hope the pre-surgery steps and the surgery goes well.

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
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!

BMGky

paul61 said:

Dr. Darling has excellent credentials
Hello. I am sorry that you find us under these difficult circumstances for your mother.

You did not mention any specific staging information for your mother, but since she is being scheduled for surgery, I assume she is stage 3 or below. Your doctor should have a staging level for your mother that includes a series of letters and numbers like T2N1M0 and a stage number.

Typical protocols include chemotherapy, radiation therapy, and then surgery.

Your mother is relatively young, so hopefully there are not any additional health issues that would complicate her surgery (e.g. coronary, respiratory, or diabetic issues).

Dr. Gail Darling certainly seems to have good credentials and a good reputation for successful cardiothoracic surgery. I see she practices at Toronto General. She performed surgery on a member of our board named Derek his CSN ID is dgsmith. I see she is qualified to perform the latest laparoscopic procedure for Esohpageal Cancer patients. Therefore, I am assuming that she is planning a "Minimally Invasive Esophagectomy" for your mother.

Questions I would ask would include:

- What type of surgery will be performed (Minimally Invasive Esophagectomy, Ivor Lewis, Transhiatal Esophagectomy)?
- How many of these surgeries do you perform each year?
- Is this surgery being performed with curative intent?
- What is my mother’s staging and how does that affect the surgical procedure used?
- Do you see any items of concern in my mother’s medical history related to this surgery?
- What steps need to be taken to confirm my mother is a candidate for this surgery?
- How long will my mother be in the hospital (how long in ICU, how long on the thoracic surgery floor)?
- Will you make arrangements for specialized after care resources she will need post surgery? (e.g. home care nursing, specialized medical equipment)
- Does Toronto General have extended stay facilities for families of surgical patients close to the hospital?
- Can you give me the name of one of your previous surgical patients that would be open to a contact and discussion about the operation planed and their recovery experience?

This is a MAJOR operation and you want to be sure your mother understands that recovery will take some time. By “some time” I mean four to six months at best before she begins to feel like herself again. Of course the two critical tests that need to be done after surgery are the “swallow test” a test to insure the surgical connection between the remnants of your mother’s esophagus and stomach has no leaks and the “pathology analysis” a study of the tissue removed in the operation to look for cancer cells that may have escaped from the primary tumor and may be in other structures around the esophagus. The results of the pathology tests will indicate if additional chemotherapy may be recommended post surgery.

Your mother should be scheduled for a CT scan and PET scan after chemotherapy and prior to surgery to evaluate the response of the cancer to her chemotherapy protocol.

It looks like your mother has an excellent surgeon. I hope the pre-surgery steps and the surgery goes well.

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
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!

As always, an excellent
As always, an excellent post, Paul. Very helpful. BMGky

milica

Our story
Thank you kindly for all you answers. Our whole family is learning as we go.
My mom is the greatest person that I know. She has the warmest smile, kindest words and is sort of a rock for all of us. I have many friends, but I feel she is my best and greatest of all.
It was 6 weeks before my wedding when our whole world crashed and crumbled into pieces. She had a barrium swallow and it looked bad. After CT, PET, biopsy, endoscopic ultrasound they confirmed our worst fears.
The funny thing was that my mom was probably the strongest and was calming the rest of us down (I was probably the worst). By seeing how strong she was you couldnt help but become stronger.
My dad became a cook, a cleaner, a shopper, and never ending burst of support for all of us. My brother held us all together, willing to do anything without one word of complain. The two of them could have moved the earth if it could help my mom.
The ironic thing is how your scale of what's good vs bad news changes...at first the only good news is that it's not cancer, after that shock wears off, then you start rationalizing and thinking well at least it's localized or at least its not past muscoular membrane, etc
I wanted to cancel the wedding, stop everything, and just be with her every second of the day. She wouldnt let me do that. We had the wedding and it was lovely. She smiled and never cried so that the rest of us can be strong. She was perfect, beautiful, and the whole day was extra special and wonderful.
Last 8 weeks were special for me because I took time off of work and stayed with her during her treatment and it help me by allowing me to at least feel a bit useful. And it allowed us to talk, laugh and cry (sometimes all three of these together)
When something like cancer enters your life you realize whats important and all I want to do is to be able to have her forever and ever and never let go. And God willing, I wont have to for a very,very, very long time.
We started with local surgeon, but heard that Dr Darling is the best in Canada so we decided to meet with her.
We were told she has T2, squamous cells, M0, and local lymph nodes - 4 to 6 - so between stage II and III.
Tomorrow is a big day, we find out when the surgery is, CT results after chemo/radiation, what to expect.
We are hopeful...and inmy mind there is only one possible outcome since I cant see life continuing with any other outcome...so With God's grace and help she will beat this...and be there to help me raise my kids once I have them...
Can you let me know when is it better and more needed to be with my mom...right after surgery...while she is in hospital? when she goes home? we have to figure out time because of work...
Thank you again for your kind words...
I hope that all of our stories will have happy ending..
God bless you all

JimboC

Just to underscore some of
Just to underscore some of the other suggestions. I would definitely ask about the Minimally Invasive Esophagectomy (MIE). Is it an option for your mother and if not, why. If it comes down to a lack of surgeon experience, is it possible to be referred to another surgeon who can do it? The open procedure has a tougher recovery path. It is a good procedure but the MIE has proven as effective so why put your body through that if you don't need to?

Cousin

paul61 said:

Dr. Darling has excellent credentials
Hello. I am sorry that you find us under these difficult circumstances for your mother.

You did not mention any specific staging information for your mother, but since she is being scheduled for surgery, I assume she is stage 3 or below. Your doctor should have a staging level for your mother that includes a series of letters and numbers like T2N1M0 and a stage number.

Typical protocols include chemotherapy, radiation therapy, and then surgery.

Your mother is relatively young, so hopefully there are not any additional health issues that would complicate her surgery (e.g. coronary, respiratory, or diabetic issues).

Dr. Gail Darling certainly seems to have good credentials and a good reputation for successful cardiothoracic surgery. I see she practices at Toronto General. She performed surgery on a member of our board named Derek his CSN ID is dgsmith. I see she is qualified to perform the latest laparoscopic procedure for Esohpageal Cancer patients. Therefore, I am assuming that she is planning a "Minimally Invasive Esophagectomy" for your mother.

Questions I would ask would include:

- What type of surgery will be performed (Minimally Invasive Esophagectomy, Ivor Lewis, Transhiatal Esophagectomy)?
- How many of these surgeries do you perform each year?
- Is this surgery being performed with curative intent?
- What is my mother’s staging and how does that affect the surgical procedure used?
- Do you see any items of concern in my mother’s medical history related to this surgery?
- What steps need to be taken to confirm my mother is a candidate for this surgery?
- How long will my mother be in the hospital (how long in ICU, how long on the thoracic surgery floor)?
- Will you make arrangements for specialized after care resources she will need post surgery? (e.g. home care nursing, specialized medical equipment)
- Does Toronto General have extended stay facilities for families of surgical patients close to the hospital?
- Can you give me the name of one of your previous surgical patients that would be open to a contact and discussion about the operation planed and their recovery experience?

This is a MAJOR operation and you want to be sure your mother understands that recovery will take some time. By “some time” I mean four to six months at best before she begins to feel like herself again. Of course the two critical tests that need to be done after surgery are the “swallow test” a test to insure the surgical connection between the remnants of your mother’s esophagus and stomach has no leaks and the “pathology analysis” a study of the tissue removed in the operation to look for cancer cells that may have escaped from the primary tumor and may be in other structures around the esophagus. The results of the pathology tests will indicate if additional chemotherapy may be recommended post surgery.

Your mother should be scheduled for a CT scan and PET scan after chemotherapy and prior to surgery to evaluate the response of the cancer to her chemotherapy protocol.

It looks like your mother has an excellent surgeon. I hope the pre-surgery steps and the surgery goes well.

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
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!

Curious about stages and surgery
Hi all - I'm new - my father (66) was diagnosed last April with Stage 3 squamous cell esophageal cancer 12 cm tumor above the stomach. Now - we've been going back and forth on whether it was stage 3 or 4. There were approximately 15 lymph nodes from the neck down and possibly the adrenal gland. (Although CAT scan did not show if it was there or just in the lymph node beside it.) No other organs.

He started Chemo in May - had IV every 3 weeks (except for a few where he had low WBC) and wore a picc line with another chemo drug in between. By the first CAT scan half way through, the tumor had gone down a lot and many lymph nodes had shrunk by 50%. At the end of chemo they reported that almost all the visible lymph nodes were clear, except two near the stomach that grew. The tumor had shrunk more.

His main doctor has said it is inoperable. We're waiting for a second opinion from Dr. Gail Darling - we've also heard she's one of the best in Canada. We're a little frustrated. It feels like he's done well and it's good news. He's very healthy - never smoked, exercises, eats extremely well. He's responded well to the chemo and has had a feeding tube since the start. He only lost about 6lbs at the end when he got dehydrated. He's bounced back already. He's strong (he's worked half to full days through the entire chemo and even managed to golf a few times) and we're curious what the risks might be - why a doctor might say it's too risky to do surgery. He's sick of chemo already and doesn't like the idea of having to continue this on and off for years.

Anyway - I'm still reading many posts, but any thoughts you can share, I'd appreciate it.

Heeran

milica said:

Our story
Thank you kindly for all you answers. Our whole family is learning as we go.
My mom is the greatest person that I know. She has the warmest smile, kindest words and is sort of a rock for all of us. I have many friends, but I feel she is my best and greatest of all.
It was 6 weeks before my wedding when our whole world crashed and crumbled into pieces. She had a barrium swallow and it looked bad. After CT, PET, biopsy, endoscopic ultrasound they confirmed our worst fears.
The funny thing was that my mom was probably the strongest and was calming the rest of us down (I was probably the worst). By seeing how strong she was you couldnt help but become stronger.
My dad became a cook, a cleaner, a shopper, and never ending burst of support for all of us. My brother held us all together, willing to do anything without one word of complain. The two of them could have moved the earth if it could help my mom.
The ironic thing is how your scale of what's good vs bad news changes...at first the only good news is that it's not cancer, after that shock wears off, then you start rationalizing and thinking well at least it's localized or at least its not past muscoular membrane, etc
I wanted to cancel the wedding, stop everything, and just be with her every second of the day. She wouldnt let me do that. We had the wedding and it was lovely. She smiled and never cried so that the rest of us can be strong. She was perfect, beautiful, and the whole day was extra special and wonderful.
Last 8 weeks were special for me because I took time off of work and stayed with her during her treatment and it help me by allowing me to at least feel a bit useful. And it allowed us to talk, laugh and cry (sometimes all three of these together)
When something like cancer enters your life you realize whats important and all I want to do is to be able to have her forever and ever and never let go. And God willing, I wont have to for a very,very, very long time.
We started with local surgeon, but heard that Dr Darling is the best in Canada so we decided to meet with her.
We were told she has T2, squamous cells, M0, and local lymph nodes - 4 to 6 - so between stage II and III.
Tomorrow is a big day, we find out when the surgery is, CT results after chemo/radiation, what to expect.
We are hopeful...and inmy mind there is only one possible outcome since I cant see life continuing with any other outcome...so With God's grace and help she will beat this...and be there to help me raise my kids once I have them...
Can you let me know when is it better and more needed to be with my mom...right after surgery...while she is in hospital? when she goes home? we have to figure out time because of work...
Thank you again for your kind words...
I hope that all of our stories will have happy ending..
God bless you all

Hi
Hi, your post brought me to tears. I felt like I was reliving the last couple months. I was so touch reading about how lovely it's been for you to spend time with your mom during treatment. My mom and I are super close as well and I've been with her every step of the way fighting Stage 3b squamous cell cancer. It's in the middle of her chest. T3N2M0. I pray your mother has a great surgery and speedy recovery with no complications. I've been crying off and on today as the chemo/radiation is making her very sick. Cannot get her to keep any food down. I'm monitoring her liquids and checking to see how many times she uses the restroom today. Please keep us all posted regarding the surgery.