New Diagnosis

Ghuber

I am the father of a newly diagnosed Esophageal Cancer patient. I have 2 biological children and now both of them have been diagnosed with cancer. The first one being 29 years ago having survived Wilm's Tumor at age 2 1/2. Now my 33 year old son has been diagnosed with stage 4 Esophageal Cancer. He has masses in his esophagus (obviously) and in one side of his lungs. He also has lesions throughout his liver. We are frantically looking for treatment options. The doctor has told us that this is incurable and the treatments can maybe prolong his life to 7 months from 2 months. He is not ill at this point and has no outward symptoms of the disease, other than a pain when he swallows.

I am scouring the internet and making calls around to find out if any others have survived this for long term. There are many claims out there, but my nature is skeptical. He and his wife will be traveling to Stanford Medical Center soon to see if there are any new experimental treatments available.

This is a man who has none of the risk factors of this. No smoking, drinking, and other factors the Doctors asked him about. Baffling to me.

Any help on this would be appreciated.

Thank you,
Gordon

sangora

So Sorry to hear this
I am so sorry to hear this about your son. There is a lot of variation in how long people can survive as stage IV's. I am a stage IV and at the time of diagnosis my esophagus was completely blocked and I had a small leision in my liver. I have been at it now for 22 months and am stable at this time. I had a CT scan last week and will get the results tomorrow. We will see how that goes. Anyway, I am one of those who tolerates chemo well. Am now on my 5th drug and for the most part am in good shape. I do have fatigue and have no hair anywhere but am able to live alone and take care of myself. For me that's a big thing. If your son goes the chemo route, tell him as he begins to get tired more quickly, keep doing things but pick one project each day and don't worry about the rest. You, your family and most of all your son has a long road ahead. Will keep you all in my prayers. Sam Stage IV

JReed

sangora said:

So Sorry to hear this
I am so sorry to hear this about your son. There is a lot of variation in how long people can survive as stage IV's. I am a stage IV and at the time of diagnosis my esophagus was completely blocked and I had a small leision in my liver. I have been at it now for 22 months and am stable at this time. I had a CT scan last week and will get the results tomorrow. We will see how that goes. Anyway, I am one of those who tolerates chemo well. Am now on my 5th drug and for the most part am in good shape. I do have fatigue and have no hair anywhere but am able to live alone and take care of myself. For me that's a big thing. If your son goes the chemo route, tell him as he begins to get tired more quickly, keep doing things but pick one project each day and don't worry about the rest. You, your family and most of all your son has a long road ahead. Will keep you all in my prayers. Sam Stage IV

So Sorry
Gordon:

I am so sorry to hear about your son. I cannot be of any help to you - but we can support you and we are always here to vent to, cry with, or whatever we can do.

The pioneers will be getting back with you regarding resources and information. Please hang in there.

Hugs
Judy & Don

Daisylin

sangora said:

So Sorry to hear this
I am so sorry to hear this about your son. There is a lot of variation in how long people can survive as stage IV's. I am a stage IV and at the time of diagnosis my esophagus was completely blocked and I had a small leision in my liver. I have been at it now for 22 months and am stable at this time. I had a CT scan last week and will get the results tomorrow. We will see how that goes. Anyway, I am one of those who tolerates chemo well. Am now on my 5th drug and for the most part am in good shape. I do have fatigue and have no hair anywhere but am able to live alone and take care of myself. For me that's a big thing. If your son goes the chemo route, tell him as he begins to get tired more quickly, keep doing things but pick one project each day and don't worry about the rest. You, your family and most of all your son has a long road ahead. Will keep you all in my prayers. Sam Stage IV

Welcome,
Hi, and so sorry to have to 'welcome' you here. You have come to the right place, however, and you will find more helpful information here than from any web site that you may find. First of all, please don't read the stats, they are very discouraging and also dated and inaccurate. Your doctor has no right to tell you a timeline, each and every person handles treatment differently and the progress of the disease varies from person to person. Your son may indeed have 2 months left, but he may also have years!!!

There are several stage iv's here that are handling treatment very well, a prime example is sangora (above). There have been many who have fought till chemo wore them out, and some who have chosen no chemo and are alive and doing well. The options are few, but each person must make their own choices, based on what they desire. The ultimate question is "quality" of life, or "quantity" of life. For many that is an easy choice, others struggle with it endlessly.

Unfortunately this disease is a nasty one with many bumps along the way. My husband Lee was 48 at diagnoses, and I am so saddened to see how very young your son is. Lee also was stage iv, with mets to the liver, which means no surgery. He also was not able to have radiation due to the size of his tumours. He suffered horribly through chemo, but for a short while they were able to shrink them down a bit. Unfortunately they grew back, and with a vengeance and he passed away within 10 months..... but there are many others who the chemo did work for!!! Like I said, each person is different, and no one can predict what will happen. We have our friend "chemosmoker" who has chosen no treatment, and he has had struggles along the way, but has outlived his doctor's prediction by months, and is still enjoying life to it's fullest.

No one can tell you what to do, but your son must ask many questions, research and do what he feels is best for him. There are no right answers.....
Wishing you all the best,
Chantal

Unknown

This comment has been removed by the Moderator

NikiMo

ACOR
Gordon,

I am sorry to hear about your son's diagnosis. My husband had stage 2 EC, he is NED now. I would suggest you check out the ACOR listserv. It is an email service that will connect you with other EC patients and family members. There are do kaon there that have aggressively treated stage 4 EC. One person whom I think you should reach out to or read older posts of is Lois Ackerman. Her husband had aggressive treatment and was NED for 6 years from a stage 4 diagnosis, with mets to liver and lungs. He is now battling a recurrence, 6 years later. You can read their story by searching the archive. I don't want to give you false hope, just a resource for aggressive treatment if your son wants to pursue that route.

The website is www.acor.org

My best to you and your family

Niki
Wife to Jeff T2N1M0
DX May 2011
Chemoradiation 6/21/11 - 7/28/11
IL 9/6/11
Pathological complete response
3 round of post-op Chemo 10/21- 11/15

ritawaite13

Hi Gordon
I'm sorry to welcome you to this site but know you've come to the right place for answers and support. Come back often and you will be amazed at the knowledge and compassion of the others on here.
It just doesn't seem right that a person who has no risk factors would get EC but the same thing happened to my husband. I guess it's just the (un)luck of the draw.
Chantal is absolutely right, this is a dreadful disease but don't let the numbers scare you. Everyone is a statistic of one. If you look at a bell curve, someone is at each end of that curve with many, many others all along that curve.
I'm not familiar with Stanford and what they may or may not have to offer but it's good that he's going for a second opinion. The doctor he saw has no right to estimate how long he will live...only God has the answer to that question.
Rita

Tina Blondek

Welcome
Hi Gordon and welcome to you and your son. Sorry to hear of your son's dx. I was a caregiver for my dad, Ray. He had stage IV EC, went for 6 wks of chemo and radiation, tumor shrunk, he went into remission, made it to a year after dx, in Dec he had pain on right side, went for ultra sound, showed a blocked bile duct in his liver, had stent put in bile duct. Ultra sound also showed lesions on his liver, within 3 mos he peacefully passed away. He fought a 16 mo battle. My point here is that my dad was with us for 12 good mos. Your son's dx of 2-7 mos. is just a guess. I would suggest you get to have him get a 2nd opinion. My dad did. His first opinion gave him 6 mos. The second opinion told him they can treat it and shrink the tumor...he lived for 16 mos. Where do you and your son live? Are there well known cancer hospitals near you? Hope my story helps. Keep in touch.
Tina in Va

Unknown

NikiMo said:

ACOR
Gordon,

I am sorry to hear about your son's diagnosis. My husband had stage 2 EC, he is NED now. I would suggest you check out the ACOR listserv. It is an email service that will connect you with other EC patients and family members. There are do kaon there that have aggressively treated stage 4 EC. One person whom I think you should reach out to or read older posts of is Lois Ackerman. Her husband had aggressive treatment and was NED for 6 years from a stage 4 diagnosis, with mets to liver and lungs. He is now battling a recurrence, 6 years later. You can read their story by searching the archive. I don't want to give you false hope, just a resource for aggressive treatment if your son wants to pursue that route.

The website is www.acor.org

My best to you and your family

Niki
Wife to Jeff T2N1M0
DX May 2011
Chemoradiation 6/21/11 - 7/28/11
IL 9/6/11
Pathological complete response
3 round of post-op Chemo 10/21- 11/15

This comment has been removed by the Moderator

Ghuber

Prognosis
My son and his wife had a conference with his Doctor the other day and he clarified the prognosis with explanation that what he said was statistical in nature. He admitted that there have been others who have had long term survival from this. I have read "internet accounts" of those who have been declared cancer free after treatment. I have also read those who have claims of divine intervention to rid them of this disease. I have hope now. I see my son as often as I can to make sure he knows that I am there to support him and the family. This event has done one thing good so far, it has solved many of the petty rifts that often occur in extended families.

My son lives in Northern California and I live in Southern Oregon, so travel is involved with my visits.

I am amazed at the attitude that my son has. He is confident that this can and will be beaten. We have had discussions about his feeling this way and that it is important to maintain the battle even after he starts to feel sick. If there is one thread that I have seen in all the survivors of this disease it is that upbeat spirit in the face of this thing. My son is a Marine ('96-'00 oncee a Marine, always a Marine) and he is a strong personality.

One question I have is whether it is productive or counter productive to exercise rigorously. I myself have always been a gym rat and believe that exercise can be a immune system booster.

Thank you for all the comments,

Gordon