Has anyone opted to NOT have surgery after a complete response to chemo/radiation?

slpmom

My husband was staged at T2N0M0 and underwent chemo and radiation (for which he had a really rough time and ended up getting a jtube inserted for feeding because he couldnt eat). Recent PET/CT as well as endoscopy are showing no spread to lymph nodes and believe it or not, no tumor (and it was a big one right at the GE junction). We are awaiting final biopsy that was done during the endoscopy. I have been reading all kinds of research - it is showing benefits to surgery of course but the statistics do not show huge benefits in my opinion. On the contrary I read about so many people having trouble after their esophagectomies and also of recurrence after esophagectomy. I was just curious if there was anyone on the site who had NOT had the surgery and just did chemo/radiation.

 

Thanks!!

faithinlord

No test is 100 percent.

No test is 100 percent. Though pet and ct show 100 percent response, there "might" be some traces of cells left either at tumor site or lymph nodes. Surgeon cannot guarantee no cancer cells left unless he literally opens up a person. You might have come across quite many people on this site who were told there staging was lower on pet ct and even with fine needle biopsy. But when doctor actually went in there were some more lymph nodes involved or spread was more as thought originally.  The fact about this cancer is in spite of even with surgery micrometastasis undectable can stay and spread later on. 

It is very much individual choice. Though chances are better with surgery. But no guarantees with surgeries that it won't come back.

 

slpmom

faithinlord said:

No test is 100 percent.

No test is 100 percent. Though pet and ct show 100 percent response, there "might" be some traces of cells left either at tumor site or lymph nodes. Surgeon cannot guarantee no cancer cells left unless he literally opens up a person. You might have come across quite many people on this site who were told there staging was lower on pet ct and even with fine needle biopsy. But when doctor actually went in there were some more lymph nodes involved or spread was more as thought originally.  The fact about this cancer is in spite of even with surgery micrometastasis undectable can stay and spread later on. 

It is very much individual choice. Though chances are better with surgery. But no guarantees with surgeries that it won't come back.

 

Yes this is true, we

Yes this is true, we understand. We are also looking into clinical trials to see if there is some other thing he can try besides such a drastic operation. I wonder if they can go in and take out just the lymph nodes if nothing shows during the biopsy of the esophageal junction....then maybe just keep watch on that area..maybe even use photodynamic therapy on the esophagus if they see it growing again...I dunno. Its about quality of life for him too.

paul61

slpmom said:

Yes this is true, we

Yes this is true, we understand. We are also looking into clinical trials to see if there is some other thing he can try besides such a drastic operation. I wonder if they can go in and take out just the lymph nodes if nothing shows during the biopsy of the esophageal junction....then maybe just keep watch on that area..maybe even use photodynamic therapy on the esophagus if they see it growing again...I dunno. Its about quality of life for him too.

Surgery improves the chances but nothing is foolproof

I had an Ivor Lewis esophagectomy after being diagnosed with esophageal cancer. Even though multiple tests including an endoscopy with ultra sound indicated there was no lymph node involvement; when pathology examined the lymph nodes removed in my surgery, they found esophageal cancer cells. I then completed six months of follow up chemotherapy, and so far, (five years out) I have had clear scans.

They tell us surgery is the best option to improve the odds, but it is important to understand that there are several different forms of esophagectomy with very different levels of invasiveness and recovery time.

The major approaches include:

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 http://surgery.med.umich.edu/thoracic/clinical/what_we_do/esophagectomy_faq.shtml

 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 http://www.upmc.com/media/NewsReleases/2003/Pages/study-minimally-invasive-esophagectomy.aspx

 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 surgeons 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.

I would say my quality of life is good after surgery. I did need to learn to make some lifestyle adjustments after surgery but certainly nothing particularly difficult. My major change is that I eat small amounts about 7 times a day and I have learned to avoid certain foods. But we learn to adjust and life goes on.

I know this is a difficult decision, I just felt that if I did have a recurrence I wanted to have done all I could do to improve my chances of a long term remission.

 Best Regards,

Paul Adams T2N1M0 DX 11/03/2009  Surgery 12/03/2009 Post surgery chemo Cisplatin, Epirubicin, 5 FU

faithinlord

slpmom said:

Yes this is true, we

Yes this is true, we understand. We are also looking into clinical trials to see if there is some other thing he can try besides such a drastic operation. I wonder if they can go in and take out just the lymph nodes if nothing shows during the biopsy of the esophageal junction....then maybe just keep watch on that area..maybe even use photodynamic therapy on the esophagus if they see it growing again...I dunno. Its about quality of life for him too.

clinical trial

I would have liked the same kind of treatment as you are mentioning. But the fact is surgeons don't practice medicine according to patient's choice. They have certain protocol and they have some legalities to watch for as well. Moreover once surgeon opens up a patient he cannot biopsy unless he cuts the piece of affected area and some surrounding. Other thing about clinical trials ,you will be very lucky if some one accepts you in clinical trial at this stage after complete response. Clinical trials are meant to see if certain cancer  will respond to new drugs and how effectively. Your husband had complete response with chemo radio treatment. 

slpmom

faithinlord said:

clinical trial

I would have liked the same kind of treatment as you are mentioning. But the fact is surgeons don't practice medicine according to patient's choice. They have certain protocol and they have some legalities to watch for as well. Moreover once surgeon opens up a patient he cannot biopsy unless he cuts the piece of affected area and some surrounding. Other thing about clinical trials ,you will be very lucky if some one accepts you in clinical trial at this stage after complete response. Clinical trials are meant to see if certain cancer  will respond to new drugs and how effectively. Your husband had complete response with chemo radio treatment. 

Yes thank you for such a

Yes thank you for such a great summary of the procedures - I am a bit of a research junkie and had asked the surgeon about all these options (our surgeon has done over 1000 Ivor Lewis procedures in his 20 year career!) - unless I misunderstood him, he said they do Ivor Lewis because they can remove the lymph nodes. They can't get at the lymph nodes in the other procedures (?). He told me the robotic procedure has a high leak rate and because it is fairly new, has had a lot complications. Its a gut wrenching decision, particularily when we hear of people. like you  who were told there was no lymph node involvement and then there was! how awful. There is a clinical vaccine trial now in Maryland where they only take you if you have No evidence or minimal evidence of disease, after you are done treatment. Problem is they need a small sample of your tumor - we may ask if the place he was originally diagnosed still has the biopsy. I'm not saying we're doing it may not be possbile but i think its fascinating. A friend of ours is in a study at MD Anderson in Texas because her cancer returned (not esophageal) and they are doing molecular treatment which is shrinking the tumors. Its amazing what they are coming up with now. I don't see why they can't just go get the lymph nodes out of there...its not the opening him up that bothers us its the permanent removal of the esophagus and stomach. I will ask the surgeon when we see him again and let you all know how it goes. Thanks for your replies!!

slpmom

slpmom said:

Yes thank you for such a

Yes thank you for such a great summary of the procedures - I am a bit of a research junkie and had asked the surgeon about all these options (our surgeon has done over 1000 Ivor Lewis procedures in his 20 year career!) - unless I misunderstood him, he said they do Ivor Lewis because they can remove the lymph nodes. They can't get at the lymph nodes in the other procedures (?). He told me the robotic procedure has a high leak rate and because it is fairly new, has had a lot complications. Its a gut wrenching decision, particularily when we hear of people. like you  who were told there was no lymph node involvement and then there was! how awful. There is a clinical vaccine trial now in Maryland where they only take you if you have No evidence or minimal evidence of disease, after you are done treatment. Problem is they need a small sample of your tumor - we may ask if the place he was originally diagnosed still has the biopsy. I'm not saying we're doing it may not be possbile but i think its fascinating. A friend of ours is in a study at MD Anderson in Texas because her cancer returned (not esophageal) and they are doing molecular treatment which is shrinking the tumors. Its amazing what they are coming up with now. I don't see why they can't just go get the lymph nodes out of there...its not the opening him up that bothers us its the permanent removal of the esophagus and stomach. I will ask the surgeon when we see him again and let you all know how it goes. Thanks for your replies!!

Biopsy came back as trace

Biopsy came back as trace cancer cells remaining in the esophagus. RRRRGGGGG.

tanseyj

Esophageal Cancer

I was diagnosed with Esophageal Cancer on 29 Sep 2014! Immediately had a CAT Scan to confirm no Metastasis. Was givin a port for chemo. Was given a feeding tube 'just in case'? Started series of chemo and then simutanious Radiation (28). Was scheduled for surgery and about 2 weeks prior I discovered a tiny lump under my armpit, now Type IV. Biopsy said malignant and removed. Now no chance of Surgery? Back on chemo for 10 sesions (chemo for 2 hours with the pump for 46 hours) with three more to come! Meanwhile had an MRI, CAT and PET scans! All showed no mets?  Had and Endoscope 3 weeks ago and it showed 'no cancer'?  Nice clear pink pictures?  

Has anyone out there experiened my situation? I am very happy to hear the 'no cancer' of the Endoscope! No talk about an operation, is this normal?  I still am unable to eat through my mouth, even juice does not always go down?  I have been experiencing 'thick white mucus' from my throat for several days now?  Have to keep 'hacking it up. So bad that I cannot go to a store or far in a car without having to do this?  I am scheduled to have my Esopagus 'stretched (dialated?) on Sep 4th at the Univ Hospital in Tucson!  Hoping this will allow me to eat again. I realize it may take a few of these procedures. Anyone had this also? I am 74 years old! Never any major problems! Have had no pain with the cancer? Chemo and radiation presented not much after effects and took them well! With this diagnosis woul I be considered a 'Survivor'?  My hopes are high, and I have always remained optomistic and in good humor over this! I think that helps! I do play softball with a not so senior league? Girls 25 and men 45 and up!  Other than a little fatigue I feel pretty good everall, except for the mucus problem. Am hoping that will go away withthe 'stretching'? Cheers!

BobHaze

slpmom said:

Yes thank you for such a

Yes thank you for such a great summary of the procedures - I am a bit of a research junkie and had asked the surgeon about all these options (our surgeon has done over 1000 Ivor Lewis procedures in his 20 year career!) - unless I misunderstood him, he said they do Ivor Lewis because they can remove the lymph nodes. They can't get at the lymph nodes in the other procedures (?). He told me the robotic procedure has a high leak rate and because it is fairly new, has had a lot complications. Its a gut wrenching decision, particularily when we hear of people. like you  who were told there was no lymph node involvement and then there was! how awful. There is a clinical vaccine trial now in Maryland where they only take you if you have No evidence or minimal evidence of disease, after you are done treatment. Problem is they need a small sample of your tumor - we may ask if the place he was originally diagnosed still has the biopsy. I'm not saying we're doing it may not be possbile but i think its fascinating. A friend of ours is in a study at MD Anderson in Texas because her cancer returned (not esophageal) and they are doing molecular treatment which is shrinking the tumors. Its amazing what they are coming up with now. I don't see why they can't just go get the lymph nodes out of there...its not the opening him up that bothers us its the permanent removal of the esophagus and stomach. I will ask the surgeon when we see him again and let you all know how it goes. Thanks for your replies!!

Lymph nodes

I would only comment that it is not accurate to say that they cannot remove lymph nodes during a THE or MIE.  My surgeon tole me before my MIE that he would remove evvery lymph node he saw, and afterwards he told me he had removed 26 nodes (all path reports came back negative, thank God).

Bob

T1aN0M0

Dx   8/3/11

MIE 9/23/11

 

Mickey Plumley

Your question regarding not having the surgery

I chose to have the surgery although CT Scan showed no cancer remaining after 25 radiation and 5 chemo treatments.

Heres Why:

The statistics of people dealing with Esophagial Cancer are this:

5 Year Survival rate for those that have radiation and chemo and no surgery = 15%

5 year survival rate for those that have radiation, chemo AND the surgery = 83%

So I guess it comes down to: Are you a gambler?

slpmom

Thanks for the replies...and

Thanks for the replies...and yes he opted to have the surgery and we are 3months out now. He has been very very sick with every problem that can be...has a few good days then lots of bad. We are wondering if the loss of quality of life was worth this. They want him to get better so they can do more chemo. I can't see him being strong enough for that but we are hanging on to stories of the brave people here who made it through this horrific disease.

ktchicago

slpmom said:

Thanks for the replies...and

Thanks for the replies...and yes he opted to have the surgery and we are 3months out now. He has been very very sick with every problem that can be...has a few good days then lots of bad. We are wondering if the loss of quality of life was worth this. They want him to get better so they can do more chemo. I can't see him being strong enough for that but we are hanging on to stories of the brave people here who made it through this horrific disease.

Hang In There

Hi - I am so sorry to hear the recovery has been so difficult for him.  My dad also had the surgury at the end of April.  It is a difficult recovery to say the least and hard to be a caregivers and watch someone struggle.  Keeping you in my thoughts.