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New to all this, Dad has stage IV

ernie694
Posts: 8
Joined: Apr 2013

Hello All,

Ill try and keep this brief, so much has happened these last few months.  In December Dad, he will be 73 tomorrow, started complaining of a backache, which is a normal thing for him.  When the pain did not get better and other symptoms started to appear we became concerned that this was something else.  He was experience a lot of confusion and balance issues.  We actually were begining to think these may be storke symptoms.  Many tests later and deterioation of his condition which lead to a fall that left my mom with 2 broken ribs from trying to catch him, they finally admitted him for further testing.  They found a 2.2cm tumor on his cerebellum.  He had surgery to remove the tumor on 2/5/13, we were told this was a metastic tumor but at that time the origin was still unknown.  9 days in rehab, and then released home, he began to deterioate again.  Balance and confusion were getting worse instead of better.  He was re-admitted, more tests and scans found he had excessive fluid on his brain and 2 more very small tumors were found on the frontal lobe. 3/6 He had a shunt placed to drain the fluid.  He was sent to a rehab again, He actually gets out today.

He had a scope done on 3/30 which found the orgin of the cancer,  what had appeared to be an inflamed portion of his lower espohgas was cancer and the cells match the cells of the tumor removed from his cerebellum. The PET scan taht was done also found 2 lymph nodes, and 2 other small spots near the esophogas.  We met again with his Oncologist, on 4/5, who confimred the diagonsis as Stage IV Espohgeal Carcinoma.  We were told surger is not an option because this was an "established cancer" (not sure what that means).  Dad is currently on day 10 of 15 of whole brain radiation, to shrink the 2 new tumors and to kill any cells left at the site of the removed tumor. 

I am a little overwhelmed with all the information that is being presented, and dealing with the facts presented, trying to honor my Dad's wishes. trying to be supportive of my mom, and keep the rest of the family informed.  To say a ittle overwhelmed is an understatement for sure. 

The treatment plan at the moment is to have a begin chemo the week of 3/22, giving Dad 1 week off following the daily radiation. Chemo will be 1x per week for 3 weeks and then a week off. 

A few of the questions (issues) I am trying to figure out, Dad had said prior to the visit with Oncologist, that he knew he was in denial of the cancer and the one thing he didnt want to be told was that it was incurable. Sadly that was the first thing the Dr told him without being asked.  I understand the importance of Dad staying positive at this point, but i am finding it had on my side with all the information at hand.  I am greatly concerned with eating issues that may present themselves.  Dad has a living will which specifically says no food or water.  The Dr did make a comment that Dad was almost 3 months post diagonsis and doing pretty well.  Very hard to know what he meant by that without thinking of some of the very grim statistics out there on prognosis.  Distance between the rest of the family and my parents is a issue too.  they live 1300 miles away. I am currently home for a week after spending the last month done with them. 

Not really sure what question i have specifically now... but have found since coming home, this is all sinking in.

 

paul61's picture
paul61
Posts: 1122
Joined: Apr 2010

Welcome to our group Ernie, I am sorry you find us under such difficult circumstances for your Dad. It sounds like he is doing quite well considering the circumstances.

I know it is difficult to hear such a grim prognosis. Esophageal Cancer is a very aggressive cancer and particularly hard to diagnose and treat. That being said however there are a number of survivors here who have been diagnosed as Stage IV and are living with cancer a substantial time beyond their oncologist’s estimate of survival. The bottom line is only God knows how long we have on this earth and appropriate medical care, a positive attitude, and the support of a loving family can make a huge difference.

Of course, with chemotherapy, we all need to evaluate quality of life against quantity of time and make the best decision for ourselves and our family. That balance is different for each of us and a highly personal decision.

It is great to hear your Dad has strong advocates in both your Mother and you. As eating issues present themselves there are medical interventions; for example a “J-tube” or jejunostomy tube can be of great assistance in providing additional nutrition and hydration when required. I had one for a number of months after my esophagectomy and it provided support when I needed it. Here is a reference that provides some information:

http://www.dukehealth.org/cancer/health_library/care_guides/treatment_instructions/jejunostomy

I wish your Dad the best and am glad he has you for support during this difficult time.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Three Year Survivor

troy07
Posts: 1
Joined: Apr 2013

Hello, my dad was diagnosed with a tumour on the top of stomach, lower esophagus back in December 2010; had surgery to remove tumour and some surrounding lymph nodes; had chemotherapy and radiation and almost a year of cancer free CT scans; before xmas of this year he had a pleural effusion that had malignant cells.  He has lost significant weight and now has feeding tube as he is unable to eat without vomitting.  This has been very difficult for the family and just today the palliative team/oncologist said his prognosis isn't good and have given him 3-4 months.  We are very hopeful that he can beat it and pray each day, I just wish he could be able to successfully eat some of the foods he previously enjoyed.  If anyone has any experience with this let me know if there is anything that helped with the eating process.

A concerned son!

Great forum by the way, really helps to read these stories and know that cancer is an awful disease and that my dad is not alone in his fight!

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