Esophageal Cancer Metastasis and Local Recurrence

mccoomb

I have just found this site, and wanted to share my story. Maybe someone has had a similar experience or may have encouraging advice or information.

I am a male age 51. In May 2010 I was diagnosed with Esophageal Cancer stage III ademocarcenoma. I had a j-peg feeding tube implanted in my small intestine, and underwent chemo and radiation. In October 2010 I had most of my esophagus and half my stomach removed, along with some nodes near the site. I was told that the cancer in the tumor was completely killed and that I was cancer free. I was offered more chemo post surgery but the doctors at Fox Chase Cancer Center, who did the surgery, strongly advised against it because I was not in good condition; so I declined. I was unable to eat and was tube fed for nearly a year.

I was finally getting back on my feet and then in March 2012 I had a metastatic lesion in my skull in the back of my head. I underwent a craniectomy, the bone was removed and replaced with a 'plate' of titanium screen and bone putty. I received more radiation, this time to my head. The tumor seems to be completely gone.

Now, in July 2012 I have a recurrence locally, with a tumor in my remnant esophagus. I see a surgeon tomorrow, I suppose to see if it can be re-resected, and am awaiting whatever next step there will be. Needless to say I am devastated, and finding it increasingly difficult to keep my chin up. I welcome any advise, experience, encouragement or general info anyone may be able to offer.

Thank you, Mitch

ryckej1

Keep Fighting
Mitch

First of all, cancer sucks. You have been through a ton of crap, but please do not give up at this point. You clearly are super strong, and can get through this also. I will be thinking of you and praying for good outcomes with everything you will be going through. It is people like you that keep me going.

Jeremie Ryckewaert

jaycc

Stage III get some additional help Immediately
Mitch,
You have really been through alot. Sounds like you are one tough cookie, good for you. Keep going. Set your goals and tell them to the doctors loud and clear so they don't forget what you want.

My husband was also a patient at Fox Chase, age 50. I found they were good at somethings but not at others, not always reaching out to other experts. I would not put all your eggs in one basket there.
I would suggest you check in with Univ of Pittsburg, or Sloan. 2 of the best EC surgeon treatment centers in the country, and right in our backyard.

Others on this site can tell you about Univ of Pitt and some great surgeons there.
Also Sloan,NY are not far.

Though this is just an opinion, Penn will do a case review for you, but not as experienced as Pitt and Sloan with EC, based on what survivors have said.

paul61

Keep Fighting!!!
Mitch,

You have really been through a battle and I am sure at this point you must be asking yourself "what can possibly go wrong next". But it sounds like you are a fighter and at least your medical team is talking about treatment options. It sounds like you responded positively to chemotherapy and treatment before so hopefully they can repeat that same success. Hang in there!!! Every day is a gift.


Best Regards,

Paul Adams
Grand Blanc, Michigan

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!

mccoomb

jaycc said:

Stage III get some additional help Immediately
Mitch,
You have really been through alot. Sounds like you are one tough cookie, good for you. Keep going. Set your goals and tell them to the doctors loud and clear so they don't forget what you want.

My husband was also a patient at Fox Chase, age 50. I found they were good at somethings but not at others, not always reaching out to other experts. I would not put all your eggs in one basket there.
I would suggest you check in with Univ of Pittsburg, or Sloan. 2 of the best EC surgeon treatment centers in the country, and right in our backyard.

Others on this site can tell you about Univ of Pitt and some great surgeons there.
Also Sloan,NY are not far.

Though this is just an opinion, Penn will do a case review for you, but not as experienced as Pitt and Sloan with EC, based on what survivors have said.

EC Metastasis and Recurrence
The doctor proposed to remove my remnant esophagus and replace it with intestine. He says he can drop the stomach back down then. I think the doctors at Fox Chase will not re resect because I have had the bone met. I belirve I am at stage IV now because I have had the bone met. I will look into these questions and get at least a second opinion. I am trying to figure out the next best step.
Mitch

betsi7

mccoomb said:

EC Metastasis and Recurrence
The doctor proposed to remove my remnant esophagus and replace it with intestine. He says he can drop the stomach back down then. I think the doctors at Fox Chase will not re resect because I have had the bone met. I belirve I am at stage IV now because I have had the bone met. I will look into these questions and get at least a second opinion. I am trying to figure out the next best step.
Mitch

ec mets
I am at UPMC in Pittsburgh right now. My husband was supposed to have an esophagectomy last Weds. when they discovered a liver metastisis. We briefly met with an Oncologist, Dr. Gibson on Fri. suggested by Dr. Luketich. We are formally doing a plan on Weds. They said that although Ed is technically now Stage 4, further resection is not totally out of the question (I personally am not too hopeful on this score). However, Dr. Gibson was totally with it, approachable, smart and listened. I will send you a message when we know more on Weds. in case any of it is applicable to your situation. I know you are reeling as we are. Betsy

jaycc

mccoomb said:

EC Metastasis and Recurrence
The doctor proposed to remove my remnant esophagus and replace it with intestine. He says he can drop the stomach back down then. I think the doctors at Fox Chase will not re resect because I have had the bone met. I belirve I am at stage IV now because I have had the bone met. I will look into these questions and get at least a second opinion. I am trying to figure out the next best step.
Mitch

Second opinion
Mitch,
Response from Fox Chase is not surprising, get ready to reach out beyond our area.
People on this board have mentioned Pitt has done wonders.
Here's the contact info
contact Dr. Luketich's office.
You will need to speak with Angela Gallagher. Her phone number is (412) 647-2844. Or you can email her at: ScolieriA@upmc.edu For the future, to fax her test results, etc.. the fax number is (412) 647-3007.
and
Sloan Kettering Memorial Hospital
Dr. Manjit Bains-Thorasic Surgeon
Dr. David Ilson- Medical Oncologist
Dr. Gewanter- Radiation

Its alot coming at you. If you need rides or help, please feel free to reach out.
You can get me directly on email as well. On left panel you select CSN email. Then select my name.

Jaycc

mccoomb

jaycc said:

Second opinion
Mitch,
Response from Fox Chase is not surprising, get ready to reach out beyond our area.
People on this board have mentioned Pitt has done wonders.
Here's the contact info
contact Dr. Luketich's office.
You will need to speak with Angela Gallagher. Her phone number is (412) 647-2844. Or you can email her at: ScolieriA@upmc.edu For the future, to fax her test results, etc.. the fax number is (412) 647-3007.
and
Sloan Kettering Memorial Hospital
Dr. Manjit Bains-Thorasic Surgeon
Dr. David Ilson- Medical Oncologist
Dr. Gewanter- Radiation

Its alot coming at you. If you need rides or help, please feel free to reach out.
You can get me directly on email as well. On left panel you select CSN email. Then select my name.

Jaycc

I Am at Stage IV Now
They tell me I am at Stage IV now, since I have had the bone met. That tumor appears to be completely gone now but I have involvement in my lymph nodes in my neck as well as the recurrence in the esophagus. My onco is going to start me on chemo asap to try to kill off any more of it that might be getting ready to show, then there is the possibility of the surgery proposed to replace my esoph. with intestine. He says we shouldnt do the surgery first because by the time I heal enough to start chemo I may have more cancer back. Fox chase is gathering my reports and will consider whether they can do anything more for me. I believe the the U of Pitt sounds good, but does anyone ever survive long with Stage IV EC?