stage 4 esophageal cancer

good evening, and hello to everyone on line tonight, My husband has been diagnosed, with stage 4 esophageal cancer and has spread to one node in his neck, and his drs say they cant do surgury, and only chemo, he has a port put in on the 5th april, and starts chemo on the 11th, there using, epirubicin, cisplatin, and 5/fu, we are so upset and still in shock was just diagnosed 3 weeks ago, Is there anyone here, with simular situation? any info about this horrable disease would be so helpful. he has no pain and he has alot of problems swallowing, I feel like drs are not doing enough to save his live. i look forward to hearing from fellow survivers, and newly diagnosed ec patiants, is anyone on any of these chemo drugs? thanks for sharing, sherri

Hi, My dad was also diagnosed  with stage 4 esophageal cancer with mets to liver, lung and stomach. This was in December of this year. He started with esophageal dilation, followed by radiation and is xurrently doing chemo, same treated as your husband. He is only on his 3rd chemo because they do it every other week, and a couple of times it was put off due to low blood counts..Side effects yes, but he would rather fight than not. After chemo treatment he was of course tired, no appetite, and developed sores on his mouth....but they healed. He continues to fight daily, believing he will be a miracle..Hang in there, this diagnosis sucks, but stay positive and have faith. Good Luck.    :ynn

My husband had stage IVb adenocarcinoma at GE junction diagnosed December 2005. Started with chemo (cisplatin/irinotecan) and radiation concurrently with good response. Ivor-Lewis and lung resected March 2006 with clean margins and no residual EC, but 3 of 6 nodes still had live cancer cells. Will be five years post surgery this week with multiple recurrences as well as lots of time out of chemo between recurrences. He was 49 and in good health otherwise when diagnosed.

Hi Sherri    My husband also has stage 4 EC. Mets to lymph and lung. No surgery. 2 cycles of chemo then he tolerated a month of radiation along with 5FU. was going to get more chemo in Nov but the fistula reopened and he needed another stent to close it off and had lost a lot of weight. He's been trying to gain weight since then.  so maybe more chemo.  new cat scan tomorrow (if he is able to swallow the stuff). Another week til we know newest game plan.

 I know how frustrated you must feel. Phil's problem started Dec 2009. We went thru 6 months of BS from one gastro dr and were even told it was not cancer. Then to hear it is stage 4 takes your breath away and you want it treated  and gone yesterday. Hold on and take lots of deep breaths. This is a very suppportive site. Irene

Hi there.

I was diagnosed in March of 2008 with stage 3/4 squamous cell carcinoma of the esophagus.  I was 36 at the time.  I did not have spread to any major organs but did have spread to nearby lymph nodes.  i saw the surgeon at Memorial Sloan Kettering Cancer Center in nyc and from the start our goal was cure.. i was told chemo, radiation and then surgery.  My chemo was cisplatin, irenotican and docetaxel and I had 28 days of radiation.  PET and biopsy after treatment (prior to surgery) were negative for any live cancer cells, however surgery was recommended to be 100% sure.  I had the ivor lewis surgery in September, 2008 and have just had my 3 years since diagnosis scan... I am cancer free! :)

If you do not feel comfortable with your husbands dr.s please get a second opinion.  I met many people while being treated and have heard many stories where people were told there was only such much that could be done and it just was not the case...  it cannot hurt to have another dr.s thoughts. 

I wish you and your husband all the best.. please try keep us posted and let us know if you have any questions or just need a hand in getting through this.  Be well and God bless.

Stacey

Hi,

My mom 52 yrs old diagnosed on 14thJan2011,as having Esophagel cancer.It spread to 13 cms lenght in food pipe.It is observed on the outer diamater of the esophages.not spread to any other parts.But travelled to limph nodes near throat.Doctor s said surgery is not possible as the patient wont suit it and it more riskier. Treatement is started a comibantion of Chemo and radiation.Drs planned 30 radiations and 3 chemos. One chemo in the starting of the treatement, one  chemo after 15 radiations and last chemo after 30 radiations. Dont worry. Doctors will sure help. Take a second opinion. Try to show him in a hospital which is only for cancer treatement. They can correctly guide and give the treatement as they might have seen many of this cases. Dont worr he will definitely get cured. It also depends on the positive thinking of the patient also. Should keep confidence in treatement once started. Always second opinion is important.

i am very confused... i also had spread to lymph nodes and was told by 3 different dr.s, upon diagnosis that our goal was cure... i was told i would have to have chemo, radiation and then surgery... no one ever gave me reason to doubt, thank God.

i am curious as to why so many of you are being told something different...  granted i know not every case is the same, but i am not clear on what makes my case curable and yours not. 

Stacey

Sometimes it depends on how distant the lymph nodes are whether they feel they can cure it. They may have a goal of cure, but that isn't always reached...you are one very blessed woman. It also may be determined by whether it is adenocarcinoma or squamous cells. Believe you are also very young which means they may be able to use very aggressive chemo/radiation with you, but this isn't an option with other health issues. Pat was 49 and in good health and did 6 cisplatin/irinotecan treatments while he was undergoing his radiation. I was next to someone yesterday who was missing her last three radiations because her counts were so low, and she had a chemo at the start (infusion/5 day 5fu pump) and another last week as she was coming to the end of her radiation. I won't describe her condition because I don't want to scare anyone. I cried when I drove home while Pat tried to make me laugh (he's doing really well...he hid under headphones to escape the misery at the cancer center while I tried to study).

Doctors vary widely on who they feel is treatable. Pat is treating again, this time it's FOLFIRI and he immediately started feeling better than he has in a very long time, other than some mild side effects. It is the easiest chemo he has ever done. He is 5 years post Ivor-Lewis today. They would not have done the esophagectomy if he had not responded to treatment first, but we too started off wiith a surgeon who was willing to consider the possibility. The oncologist who administered his last chemo for our regular oncologist which he finished last spring felt he should have gone into hospice a year and a half ago, or treated less aggressively if he treated at all. If he had followed her advice he would be gone now. This is one of the things going on in the world of cancer. Some doctors feel the cost is too high to justify the treatment when the patient is ultimately going to die. Our oncologist prefers to believe in keeping him going as long as she can with the hope that a cure will come, and we have been very blessed to battle so many recurrences successfully and still maintain QOL. She recently used Pat as an example while arguing for treatment and the possibility of surgery for someone in a situation very similar to ours five years ago. The doctors on the tumor board were surprised by her success and the fact that he's still in decent shape. Of course we still believe part of our success comes from our persistent practice of tong ren to complement our traditional treatments, and the oncologist again said she doesn't understand why he is so atypical.

Bless you and Pat!  I have read a lot of your posts on this board and I want to tell you I think you are magnificent!  Thank you so much for your response... I think I knew the answers to my questions, but I guess I needed someone else to explain it.  Well done! ; )

I can't help but be angered and saddened by the thought of Dr.s giving up or, even worse, causing a person to lose hope and give up on themselves.  I truly believe a positive attitude is half the battle!  Had my Dr.s been negative going into it all, I am not sure I could have been blessed with such a good outcome.  I praise all of my Dr.s for never giving me reason to doubt I was going to make it.  I know I am very fortunate to have had things go the way they did for me... I wish the same could be for everyone!  I think it is truly a shame to think that things can vary so widely between dr.s and treatments.