Doctor said all margins were good, but still needs immunotherapy. Why?

Posted by dorenemonchil @dorenemonchil, Feb 23 1:44am

My husband 71 years old has esphogeal cancer. Treatment of chemo, immunotherapy and radiation followed by surgery to remove tumor and esphogus . After surgery the Doctor told me that he removed the tumor and 1 lymphnode and the all margins looked good. To me those words meant that he had gotten all of the cancer. We went to see his oncologists two days ago and he tells us that they did not get all the cancer. That there is more in other lymphnodes but he does not know how much and that Bill will need to come in for immunotherapy every two weeks for 1 year. Also after surgery we find out that the doctor removed his gallbladder . We had no knowledge this may happen . We will see the surgeon on the 27th. I am not complaining I am shocked and confused.The reason for removing his gall bladder, could it be that it had cancer and if other lymphnodes have cancer why not remove them ? I almost feel as if we are being told only so much . As everyone here knows being told you or someone you love has cancer is devastating. It turns your world upside down. The only way for us to make the best choices for my husband is by having total honesty from everyone involved in his care . Even if it will be hard for us to hear it's what has to happen . What does clear margins mean and did his gallbladder possibly have cancer so it was removed.

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

I took opdivo, an immunotherapy drug, for a year after surgery. Compared to chemo it was a piece of cake. I am 4 years cancer free and had a similar regimen as your husband. He will recover, although it can be difficult at first. We will be praying in Montana for you and your husband. It’s okay to be afraid. I am 70 years young and know first-hand what you and your husband are going through. Cheers and blessings to you both.

REPLY

@dorenemonchil, I completely understand your confusion. You're asking all the right questions and hopefully you've had a chance to discuss them with your husband's cancer team.

Clear margins in surgery mean that enough healthy tissue surrounding the cancerous tissue or tumor was removed during surgery. This is good news that the tumor was able to be cleanly removed and the cancer cells didn't invade nearby tissues. Think of a ball vs an octupus (an oversimiplified description).

However, cancer cells can also break away and travel to other parts of the body through the blood stream and/or the lymphatic system. It is routine to remove nearby lymph nodes to see if cancer cells are on the move. It sounds like cancer cells were found in the lymph nodes and that to kill the traveling cancer cells immunotherapy is being recommended.

I can't know why your husband's gallbladder was removed. However, sometimes things are not seen on imaging before surgery and only discovered once the surgeon gets in there. This is an excellent question to ask the surgeon and to ask questions about how this will affects your husband's recovery.

How did your appointment go today?

REPLY

It went well and you are right. Since one lymphnode was cancer and removed the immunotherapy is a precaution incase the cancer made it to others . The gallbladder was taken out because it looked as if it was going to cause him issues soon. So today is a very good day for us. He continues to feel better every day.

REPLY

Where do you folks get your care... ? I've never heard of an esophagectomy where 1 lymph node was removed... it is ALWAYS 15 to 30 or so. Was this a typo on your part? And if they only removed 1 lymph node... how is it they now see cancer in other lymph nodes... from scans? And not post-op pathology?

And removing the gall bladder during the surgery... I could see this happening... but NOT without letting you both know right after the operation (well at least you, since he might not remember anything he's told that first day or two post-op).

But more immunotherapy... probably can't hurt. Is the adjuvant immuno the same as the neoadjuvant immuno? And if more cancer has been seen... They're not adding in some chemo? Hmmmmm...

Gary

REPLY

Immuno therapy for me was a walk in the park. Much easier than chemo and it works. At least opdivo works. Trial results were phenomenal so I took it. Well worth the hassle. I am going on 4 years since diagnosis and treatment and so far no cancer. Even one cancer cell can spread the disease and they want to do everything possible to prevent that from happening. Cheers and blessings to you and your husband.

REPLY
@colleenyoung

@dorenemonchil, I completely understand your confusion. You're asking all the right questions and hopefully you've had a chance to discuss them with your husband's cancer team.

Clear margins in surgery mean that enough healthy tissue surrounding the cancerous tissue or tumor was removed during surgery. This is good news that the tumor was able to be cleanly removed and the cancer cells didn't invade nearby tissues. Think of a ball vs an octupus (an oversimiplified description).

However, cancer cells can also break away and travel to other parts of the body through the blood stream and/or the lymphatic system. It is routine to remove nearby lymph nodes to see if cancer cells are on the move. It sounds like cancer cells were found in the lymph nodes and that to kill the traveling cancer cells immunotherapy is being recommended.

I can't know why your husband's gallbladder was removed. However, sometimes things are not seen on imaging before surgery and only discovered once the surgeon gets in there. This is an excellent question to ask the surgeon and to ask questions about how this will affects your husband's recovery.

How did your appointment go today?

Jump to this post

Sorry it has taken so long for me to reply. Update on Bill . He will receive immuno therapy every 2 weeks also he will be taking chemo orally . The Doctor says that there is still cancer somewhere in his body. They did not get it all with the IV chemo / radiation. Were not sure exactly which chemo medication he will be taking but thr oncologists said he will be very aggressive with treatment. I pray Bill can tolerate this chemo. Bill's blood pressure dropped so low during his previous treatment that the doctor stopped giving it to him so he ended treatment not getting his last 2 of chemo.

REPLY
@mrgvw

Where do you folks get your care... ? I've never heard of an esophagectomy where 1 lymph node was removed... it is ALWAYS 15 to 30 or so. Was this a typo on your part? And if they only removed 1 lymph node... how is it they now see cancer in other lymph nodes... from scans? And not post-op pathology?

And removing the gall bladder during the surgery... I could see this happening... but NOT without letting you both know right after the operation (well at least you, since he might not remember anything he's told that first day or two post-op).

But more immunotherapy... probably can't hurt. Is the adjuvant immuno the same as the neoadjuvant immuno? And if more cancer has been seen... They're not adding in some chemo? Hmmmmm...

Gary

Jump to this post

Update on Bill. They did not get all the cancer . Still shows he has cancer. Along with immuno therapy he will be taking chemo orally. He has gotten 2 immuno therapy treatments but has not started this new chemo yet . The oncologists said he is going to be very aggressive with treatment. Waiting on the his insurance and speciality pharmacy then he begins this chemo.

REPLY

There are reasons for doing more treatments, even with clean post-op pathology. I have seen this before, but in stage 1 patients who went straight to surgery, where the tumor was a bit deeper into the esophageal layers than was thought going into surgery. There are studies in Asia (where most patients who are not stage 4) go straight to surgery, then they do adjuvant treatments... (they don't do any neoadjuvant treatments first).

Anyways... I still find it strange only 1 lymph node was removed during his esophagectomy... are you certain of this? And removing his gall bladder also seems odd... was this not discussed as an option prior to his surgery? Did he have gallstones? But I'm sure he'll do just fine without his gallbladder... as bile will continue to drip into his intestines straight from his liver.

But it is concerning he did not complete his neoadjuvant CROSS protocol treatments (if that is what he did)... due to side effects. I'll assume his chemo regimen is going to change now... to Folfox or something. And yes, now that he is post-op, it will be harder on him... they will have to watch him very closely.

All the best.

Gary

REPLY
@dorenemonchil

Update on Bill. They did not get all the cancer . Still shows he has cancer. Along with immuno therapy he will be taking chemo orally. He has gotten 2 immuno therapy treatments but has not started this new chemo yet . The oncologists said he is going to be very aggressive with treatment. Waiting on the his insurance and speciality pharmacy then he begins this chemo.

Jump to this post

My husband was put on oral chemo and IV chemo after scans /biopsy showed esophageal cancer cells in some lymph nodes. This was 4 years after chemo, radiation, surgery and many good scans. The initial chemo was TOO aggressive! New oncologist stopped the IV chemo (oxaliplatin) after terrible side effects and then reduced the oral chemo (capecitabine) from 2000mg 2 X a day to 500mg 2X a day. He has quality of life, appetite and functioning. He just finished 28 days of radiation , hoping to zap the cancer cells in the lymph nodes with the goal of getting off the oral chemo. 2 scans after being on oral chemo before radiation, showed things were stable, not growing. We won't know if the radiation worked until the next scan in 12 weeks. So, once the fatigue lessens we plan to live it up til the next scan.
We order the oral chemo (capecitabine) through Mark Cuban's pharmacy. It is not filed thru insurance and is mail order and much cheaper. Without insurance= $7,000
with insurance= $225, Mark Cuban =$30 (per month)
It was recommended to us by the medical team. It is easy to use the website and has been very prompt.
Mark Cuban has other expensive drugs too. Check it out if you have expensive meds.
Esophageal cancer is a very sneaky, tough cancer. We pray for all dealing with this disease.

REPLY
@bb17

My husband was put on oral chemo and IV chemo after scans /biopsy showed esophageal cancer cells in some lymph nodes. This was 4 years after chemo, radiation, surgery and many good scans. The initial chemo was TOO aggressive! New oncologist stopped the IV chemo (oxaliplatin) after terrible side effects and then reduced the oral chemo (capecitabine) from 2000mg 2 X a day to 500mg 2X a day. He has quality of life, appetite and functioning. He just finished 28 days of radiation , hoping to zap the cancer cells in the lymph nodes with the goal of getting off the oral chemo. 2 scans after being on oral chemo before radiation, showed things were stable, not growing. We won't know if the radiation worked until the next scan in 12 weeks. So, once the fatigue lessens we plan to live it up til the next scan.
We order the oral chemo (capecitabine) through Mark Cuban's pharmacy. It is not filed thru insurance and is mail order and much cheaper. Without insurance= $7,000
with insurance= $225, Mark Cuban =$30 (per month)
It was recommended to us by the medical team. It is easy to use the website and has been very prompt.
Mark Cuban has other expensive drugs too. Check it out if you have expensive meds.
Esophageal cancer is a very sneaky, tough cancer. We pray for all dealing with this disease.

Jump to this post

What a story... and gotta love Mark Cuban... I'm even a Mavericks fan.

But Oxaliplatin and Capecitabine (known as Capox regimen)... both of these chemo drugs are brutally hard on the patient, especially in the adjuvant setting. Also because those pills are being taken daily... you never get a break! And then to throw radiation in... that seems very strange. What area (lymph nodes) is being radiated? This is rare for stage 4 spread. How many local lymph nodes were removed during esophagectomy?

REPLY
Please sign in or register to post a reply.