Hi, Kathy. My brother has stage 4 cancer (mets to the lymph nodes around his stomach, those in his neck, and to the juncture where the stomach meets the small intestine). He's also currently ineligible for surgery, but I do know some folks here whose stage 4 tumors were brought under control enough through chemo and radiation to permit surgery at a later date. It's by no means hopeless.

Hi Kathy, You have come to the right place! This is a fantastic support group. Martin (ML) wrote a post on 5/02/13. It was so encouraging, that I copied it, printed it, and hung it on my wall. He's a stage 4 survivor who is still alive 4 years after being told that he had 11% chance to live a year. Perhaps you can find the post and read it. My thoughts and prayers are with you.

Linda....thanks for the kind words and i'm glad I could offer some hope. Kathy...there are many people who were told they were inoperable and then had a positive response to treatment and became surgical candidates. Second opinions are sometimes helpful in this regard. If they can shrink the primary they can do chemo on the metastatic disease, then remove the primary. I'd search around for someone to be more aggressive ....ML.

Does healthcare system in Australia offer any other treatment options at all?

Just wondering if you are able to get a second opinion? As Martin said, several seemed to have good results with shrinking the tumor(s) making surgery possible -

hi, new here today but i thought i'd reply.
i was diagnosed with stage IV almost a year ago.
no surgery because the tumor was too large (10cm) and i had lymph node involvement.
i was given the option of chemoradiation to try to"buy" a little more time. first round sent me to the hospital with pneumonia for a week. after 6 weeks of radiation and more chemo... PET showed no change, cancer stable.
doc suggested new chemo, taxol and carboplatin. i was hesitant but my dear husband convinced me to give it one last try. i was sooooo sick!
but PET in April showed NED (no evidence of disease). Another scan in August was also NED. I have another schedule for early november,
i am apprehensive because i know that most of the time, the cancer returns - even with surgery but more often without it.
but cancer has stolen away so much from me, i have refused to let it take away my hope! i live each of these bonus days i have been given trying to find the happiness in ordinary things!
i wish you hope, too! please don't waste precious time with worry or let the cancer take away your joy!!!

dietgeeks thank you for the inspiring words.

Thank you everyone for your kind replies! Looks like I have come to the right place. I send my best wishes to you all.

dhenth: my primary tumor is at the esophagus/stomach junction with several mets in the liver - one of these was in fact larger than the primary tumor. Just over six months of chemo has significantly reduced the size of all liver tumors, at this stage I am stable. I still don't think surgery will be an option as my oncologist believes there will always be some trace of the cancer in my liver - i.e. would not put be through such a major operation when its likely the cancer will still be there.

Linda65401: thank you for your kind words and I will look for Martin's post.

MartinL: thank you for your advice and I will look for your previous post.

ml9st: the public healthcare system (Medicare) in Australia is excellent, I cannot fault the treatment I am being given (for which I don't pay). But I do wonder sometimes if I was a private patient I would be given other options. I'm also not sure about being able to get a second opinion, being a public patient.

dietgeeks: thank you also for your kind words. The chemo I started with were Epirubicin (horrible), Cisplatin and Flurouracil by infusion. After 8 cycles the Epirubicin was stopped. I switched from Flurouracil infusion to Xeloda tablets (once my esophagus was open enough to swallow tablets) and two cycles ago I was changed from Cisplatin to Carboplatin becuase of peripheral neuropathy. I am tolerating the chemotherapy well, but for 4-5 days of every three week cycle I am terribly sick. Yes the cancer takes so much from us. I am trying to make the most of every day, and to try and be positive for my children (teens) and partner, but some days it's easier said than done!

Martin: I've now read your earlier post (as recommended by Linda). Very, very inspiring and positive. The statistics for this cancer are terrifying, and my oncologist gave me a 40% chance of surviving one year past diagnosis (which was end January 2013). My wonderful, supportive partner reminds me that I don't fit the statistics (being 50 years old and female) so I should ignore them!

I will also think more about getting a 2nd opinion.

All the best to you Martin.

Hi Kathy. My husband was diagnosed Stage 4 with mets to the liver in Feb 2008. We were told no surgery, just chemotherapy. By the grace of God, my husband went into remission three months after beginning chemotherapy, We were told he still was not a surgical candidate because the cancer would eventually return. It never did, but no one would operate. 17 months after the initial diagnosis, I finally found a surgeon in another state who was willing to take a chance on us. My husband is now 4 years out from surgery and his oncologist has released him from his care.

Hello, Kathy -

I'm heartened to read the many encouraging responses to your question, & I'm sure you are, too.

Exactly two yrs ago my husband was Dx'd w/ Stage 3 EC, with lymph node involvement. Both a NYC surgeon & Ted's local oncologist said no to surgery. He went thru 5 months of aggressive chemo, which put him in the hospital for two wks at one point. It was grueling. He then had 3 months of targeted radiation, from which he had NO side effects other than fatigue. He was luckier than most folks in that.

Throughout the whole 8 month process, his tumor kept shrinking until it was no longer visible at all! The doc said he will never be cured - the cancer will eventually resurface somewhere, sometime. But the same would be true if he'd had surgery. So for 16 months now his PETS have been clean, & his quality of life and frame of mind are excellent.

To have surgery or not? This is a very sensitive, personal question. Many in this group believe that surgery saved their lives, as indeed it may have. But I'd be dishonest if I didn't tell you that some doctors have credited my husband's robust health to NOT having had surgery. Maybe it depends on the candidate's quality of life upon diagnosis.

Like you, Ted didn't have a choice. And we hold our breath after every 3-month PET scan. But I'm here to tell you that remission IS possible without surgery, so don't give up hope.

Peace & blessings to you & your family. Stay positive!

It is important to get tested for HER2. If you are positive, HERCEPTIN needs to be added to the treatment.
My husband had surgery , but had a recurrence last year . he had six rounds of cisplatin 5 FU last year. They had forgotten to test him for Her2 last year at the time of his recurrence. This year when I asked about it he was tested and is in fact HER2 positive . He is now getting Herceptin along with chemo and last pet scan there was a very good response to the treatment. My husband was diagnosed March 2010, had chemo radiation ,then surgery July 2010, recurrence March 2012. He feels very good and you wouldn't know he was "sick".
all the best,
danile

DreamcatcherNJ, Is your husband continuing to get endoscopies? My husband's PET scans were clear after chemo. The esophageal cancer that had spread to his liver was completely gone. However, the PET scan did not show that the tumor in his esophagus was still there. That was discovered with an endoscopy and that is why we elected to have surgery even though his PET scans were clear.

Dear Giving Back -

I'm sorry I didn't read your question sooner. Yes, in the past 16 months (since remission), Ted has had 2 upper endoscopies, & one lower. The plan is to keep him on a six-month schedule until he hits the two-year mark, then only go once yearly. We say our prayers & keep our fingers crossed.

Bari

Hi Giving back,

Sorry, I've just read your response, for which I thank you and apologise for not responding sooner. I have not been on this site for a while, I guess I don't need to explain that some days I just don't want to know or think about the cancer. Very encouraging to read about your husband and how well he is now doing, having had surgery after being told it was not possible - similar to my situation. All the best to you both.

Kathy