Stage 4

 My dear Betsy:

 No sooner had I finished writing a letter to a dear sister who has just learned that her brother also has Stage IV EC cancer.&n

Betsy (I'm assuming you're Betsy and your husband is Chad),

I am so sorry to hear about your situation.  I too was recently diagnosed with Stage IV esophageal (diagnosed last month).  Before I get into my story, let me just say that the advice given to you by Loretta and Ed is exactly right.  If you scan the other entries under esophageal cancer you'll see that they are regular contributors and are truly caring people who have a wealth of information to provide you that they gained (unfortunately) through experience.  I hope you'll take the time to research the options you have and know that we are all here to help you in any way we can.

One thing that I tell new patients is that YOU must be proactive and take charge of your life.  Doctors come in various degrees of knowledge, competency and bedside manners.  You and Chad must be comfortable with your oncologist...remember this...if Chad passes away your oncologist WILL have another patient, YOU will not have another Chad.  This should be your motivation to be the best advocate you can possibly be for him.  Loretta's suggestion that you get a second opinion is spot-on...I had FOUR!

I hope my story illustrates to you that there is always hope, it's important to stay on top of things, and getting other opinions is very important.

I was diagnosed with lung cancer when I was 34 years old...no typo...lung cancer.  I was told that there was nothing that could be done for me other than make me comfortable while I lived out my life. My wife and I had two young kids (11 year old son and 7 year old daughter at the time).   I lived with this prognosis for several weeks before one of the thoracic surgeons offered that he felt that he could get the tumor out but it would cost me my right lung.  I had my lung removed and volunteered for a high dose chemo/radiation protocol to make sure that the cancer was gone.  That was 19 years ago.  During the wait time,   I sought a second opinion at Bethesda Naval Hospital and finally a third opinion at Memorial Sloan Kettering.  Unfortunately, the treatment for my lung cancer has had its affect on me.  I've got congestive heart failure because the radiation clipped the right side of my heart and, now, stage IV esophageal cancer because the radiation essentially fried my mediastinum.

So let's talk my esophageal cancer diagnosis.  I was diagnosed with what would be stage II in July by Walter Reed Army Hospital (formerly Bethesda Naval Hospital...the place I got my second opinion for my lung cancer).  I then went to Johns Hopkins in Baltimore and was told that I needed a radical esophagectomy (long story and I'll spare the details but suffice to say it was far more than a standard esophagectomy).  I then went to Memorial Sloan Kettering in NYC which kind of went no where.  Finally, I went to MD Anderson in Houston for a fourth opinion. The doctor at MD Anderson reviewed my paperwork and asked me to postpone my surgery at Hopkins (which was alredy scheduled) to give him time to provide me with a full opinion.  He went on to say that he felt if I had the surgery that I would die on the table given my heart failure and compromised breathing from missing my lung.  He also wanted to test a few suspicious nodes that were identified in scans that Hopkins thought were insignificant.  I had MD Anderson perform the biopsies and one of the test came back with metastatic disease placing me at stage IV.  Had i survived the surger that Hopkins wanted to do, and survived, I would still have had cancer since they would not have removed all of the cancer...THAT would have absolutely sucked!  I should also add that I cannot have radiation as I've had my lifetime allotment with my lung cancer...the ONLY thing that I can have now is chemotherapy.  So on August 29th I had my first round of PALLIATIVE chemotherapy (FOLFOX).  i'll have another scan in 3 months and find out how much time they're giving me.

The nurse's comment to you that Chad is receiving chemo to prolong his life is a true statement.  But any medical treatment one receives is technically to prolong ones life.  Agree that her delivery lacked compassion, was rather crass and was ill-timed but if the treatment does extend Chad's life that is a good thing.  Now what we've got to figure out is how best to take the time he's being given to do something that kicks the crap out of the cancer.  The fact that he's young will certainly help.  Remember, I was 34 when I had lung cancer so I was able to have (and survive) a much more agressivve treatment plan. 

If you have ANY questions or need to bounce ideas off someone I hope that you'll remember us on this board...we've got a lot of first had experience and are all willing to help in any way we can. 

My best to you and Chad,

pat

Betsy - I am there with you - my huband and I have 3 children (youngest in elementary school) ...... my husband was just diagnosed with stage 4 on Nov 4th and we are likely where you are.   However, I am reading all I can and I encourage to do the same - I agree with above post that making significant changes in diet and helping the body naturally kill the cancer cells (which is what the bosy is supposed to do) would be worth pursuing....