Surgery with stage IV esophageal cancer

Is there anyone who has had stage IV esophageal cancer and had the surgery to remove the esophagus and resection. If so could you please mention the city, the hospital and the doctor(s)

We live in Boston and go to MGH hospital. My husband's cancer had spread to his liver, but the tumors there have shrunk 20% so far. The tumor in the distal area (next to the connection to the stomach) has grown extensively in the past four weeks thus, creating an  inability to eat. A metal stent was inserted a week ago and has enabled him to eat, but the motility in the stomach has become a major problem. The stomach muscles are not working efficiently and he has been given reglan and baclofin.to induce more muscular contractions.

If anyone has any suggestions or comments, it would be appreciated.

Thanks!

Twokatzeyez

I read your post and know of two on this forum when they read your post they will respond. I was a stage lll and had my surgery at Brigham & Womens in Boston on Jan 08 and doing well at this time with several minor problems off and on. I hate to read that someone has been diagnosed with EC, but you have definitely come to the right place to receive info from people that have encountered all forms of side effects. They all have knowledge and compassion in helping everyone that ask. Please keep us informed how things are going and how everything turns out. I believe the info you seek will be answered shortly after Stacey and Tongrenhealer have read your post.  Phil A.

Husband had stage 4 but his mets were lung. Our oncologist is no longer in this area, but she used a protocol that was in clinicals with Dr Enzinger at Dana Farber. Pat had a three drug combo of cisplatin, irinotecan and docetaxel with 25 radiation treatments at the onset. This may be a more standard mix now that it's been a few years since we set out on this path. The radiation began shrinking the esophageal tumor almost immediately, and the chemo cleaned up the lung mets. His radiation oncologist was Dr. Shetty at Holy Family in Methuen, MA (oncologist was originally in Haverhill where we live). The surgeon was at Lahey in Burlington and we really liked her. She had lots of experience and bedside manner to go with it. Her name is Christina Williamson. We also have friend who used her for liver surgery who did well with her. She was willing to discuss the possibility of surgery, although the original plan was to resect his lung and biopsy it before proceeding with the esophagectomy. When the time for surgery came, she did the esophagectomy first since he had clean scans. Three of the six lymph nodes biopsied with EC with everything else clean. He's had several lung recurrences but we did not do clean up chemo and have been very fortunate to get rid of the lung mets several times now. He is currently enjoying another chemo holiday, feeling very good and thankful for each day. He has a few more months till he hits the 4 year from dx point. We feel happy with where we are, even though it's been quite a roller coaster ride.

My mom was stage 4 mets to the celiac node. she did cisplatin & 5fu concurrently w/radiation. this shrunk her tumor enoughs that she became a surgical candidate. she then went to NY Presberyterian Cornell where Dr Paul C. Lee did her surgery. she is 5 months pre-op & had a hamburger today. she was very happy about that!

Phil,

Thank you for your response. Presently all they will do at MGH is Pallative Care. They do not want to treat the tumor in the esophagus aggressively with radiation. They just are giving him irinotecan and erbitux (cetuximab) and treating symptoms with temporary soutions as the metal stent. I would like to see what other options we have. The chemo has only been somewhat effective in the liver.

Tongrenhealer has responded, but I need to get more information from her. There lung cancer was involved. We have stage IV EC with metastizing to the liver.

Have you heard of any particular physicians at MD Anderson in Houston?

Thanks again for your info.

Twokatzeyes

On 8/2/2009 Phil A. wrote:

I read your post and know of two on this forum when they read your post they will respond. I was a stage lll and had my surgery at Brigham & Womens in Boston on Jan 08 and doing well at this time with several minor problems off and on. I hate to read that someone has been diagnosed with EC, but you have definitely come to the right place to receive info from people that have encountered all forms of side effects. They all have knowledge and compassion in helping everyone that ask. Please keep us informed how things are going and how everything turns out. I believe the info you seek will be answered shortly after Stacey and Tongrenhealer have read your post.  Phil A.

 

Thanks so much for responding. Even though we are at MGH, we went to Dana Farber and met with Peter Enziger to get a second opinion.

Unfortunately, at MGH they said because it metastized, they would not aggressively treat the esophageal tumor. They would only give him "pallative care". This includes chemo (presently irinotecan and erbitux(cetuximab) which shrunk tumors in the liver by @20%. The esophageal tumor, we were told from the endoscopy 5 weeks ago, was the same or smaller. Well, it appears in 5 weeks it grew insidiously to cover the opening almost completely so my husband could not eat. This past week, they put a stent (metal) in and now he can swallow, but what about the tumor itself?...It will still be growing without radiation. They say they would give radiation if they would operate, but since it metastized they will not do that. What do you think of this?  Also, now the motility of the stomach has been decreased and it is difficult for him to digest foods and move them into the small intestine.

Do you know of any specific doctors at MD Anderson in Houston?

 Thanks for your informative initial response!

On 8/2/2009 tongrenhealer wrote:

Husband had stage 4 but his mets were lung. Our oncologist is no longer in this area, but she used a protocol that was in clinicals with Dr Enzinger at Dana Farber. Pat had a three drug combo of cisplatin, irinotecan and docetaxel with 25 radiation treatments at the onset. This may be a more standard mix now that it's been a few years since we set out on this path. The radiation began shrinking the esophageal tumor almost immediately, and the chemo cleaned up the lung mets. His radiation oncologist was Dr. Shetty at Holy Family in Methuen, MA (oncologist was originally in Haverhill where we live). The surgeon was at Lahey in Burlington and we really liked her. She had lots of experience and bedside manner to go with it. Her name is Christina Williamson. We also have friend who used her for liver surgery who did well with her. She was willing to discuss the possibility of surgery, although the original plan was to resect his lung and biopsy it before proceeding with the esophagectomy. When the time for surgery came, she did the esophagectomy first since he had clean scans. Three of the six lymph nodes biopsied with EC with everything else clean. He's had several lung recurrences but we did not do clean up chemo and have been very fortunate to get rid of the lung mets several times now. He is currently enjoying another chemo holiday, feeling very good and thankful for each day. He has a few more months till he hits the 4 year from dx point. We feel happy with where we are, even though it's been quite a roller coaster ride.

 

I think our oncologist hemmed and hawed a bit within herself about Patrick. He was 49, and otherwise healthy, and for some odd reason the gastroenterologist sent us to her fully expecting she was going to treat him successfully and he would survive, when his prognosis was actually around six months. He had trained at Lahey and knew the surgeon and highly recommended her, so we never considered going to Boston if we could stay outside the city. The oncologist had a stage 3 who had responded to our treatment, so we pushed on, hoping we could get to the point where Dr Williamson could do the surgery. That was our goal from the start. I don't think it's standard treatment for a stage 4, but sometimes you just find the right people who are willing to push for you. We talked about surgery from the start, but it wasn't assured because of the mets, but it didn't stop us from going the aggressive route and radiating to shrink the tumor. It was very difficult, he was really sick from side effects and he lost a lot of weight because he had been having trouble swallowing for a while before he was diagnosed, but we did it.

I know everyone is different, and sometimes there are other reasons they can't use radiation, but frequently it's just because it's not the general standard of care and doesn't fit into the flow chart. Did they do the team approach when you saw Dr Enzinger, so you know Dana Farber wouldn't have done radiation either, or did you just go for gastro oncology consult?

I know I mentioned Denver. I know of another person who went there after being given palliative care by their original doctor and they were willing to treat more aggressively in Denver, but unfortunately he was too far gone by then to make it. I know our PA oncologist is out of the office this week, or I might ask her if she had any idea about someone in the Boston area who might treat aggressively.

hi there.

i was dx in march of 2008 with advance squamous cell carcinoma...i was told my tumor was stage 4, however it had only spread to nearby lymph nodes.  i met with Dr. Valerie Rusch, a surgeon who specializes in the espohagus, lung and stomach, at Memorial Sloan Kettering.  She is regarded as one of the best in the world and I would recommend her in a heartbeat.  I was treated by members of her team, Dr. David Ilson is my onoclogist and Dr. Karyn Goodman was my radiation oncologist.  I was given, what I was told to be the most effective treatment available at the time and it proved to be successful.  surgery was my option since, all tests came back as NED after treatments were complete.  i opted for surgery because it was the only way to be 100% sure all the cancer was gone and because i was told it was my last chance at a 100% cure.  after surgery, pathology reports proved treatments were a success...no cancer was found.

if you have any questions or need any information, please feel free to let me know.

 i wish your husband all the best...stay well, be positive and God bless!

-Stacey

 

On 8/2/2009 twokatzeyez wrote:

Is there anyone who has had stage IV esophageal cancer and had the surgery to remove the esophagus and resection. If so could you please mention the city, the hospital and the doctor(s)

We live in Boston and go to MGH hospital. My husband's cancer had spread to his liver, but the tumors there have shrunk 20% so far. The tumor in the distal area (next to the connection to the stomach) has grown extensively in the past four weeks thus, creating an  inability to eat. A metal stent was inserted a week ago and has enabled him to eat, but the motility in the stomach has become a major problem. The stomach muscles are not working efficiently and he has been given reglan and baclofin.to induce more muscular contractions.

If anyone has any suggestions or comments, it would be appreciated.

Thanks!

Twokatzeyez

my husband was just stage 2 no mets no lymph node involvement, but he has heart issues. We meet with oncologist and sugeon at Beth Israel in Boston. both said they were treating 'for a cure', which we have effected. 

Surgery was an ordeal, that's all i will say on this site... but survival happened. There are always other options, I hope you can find some folks willing to take the leap you need. Good luck. 

Truebrit.

I would go to the internet and contact the thorasic surgery dept at John Hopkins Hospital or MD Anderson in Texas and run your case by them and have all your test faxed to them for a second and if necessary a third opinion. I believe their is always someone with a different opinion on what can and cannot be done with EC cancer.  Please try everything possible and question why he can not have surgery. I wish you both the best.  Phil A.