Help Needed - Dad newly Diagnosed w/ Esophageal Stage IV

JMcDaniel
JMcDaniel Member Posts: 1
edited September 2015 in Esophageal Cancer #1
I apologize for the length, first post and I want to make sure I include everything for anyone who's interested. 

 

***My most important questions regarding overall treatment will be towards the bottom. 

 

Any help or suggestions is extremely appreciated at this time.

 

Hello,

My name is Jeremy and I'm 28 years old living in the Northern Virginia area. My Dad was recently diagnosed on Friday (09.11.15) with Esophageal Cancer Stage IV that has metastasized to his liver.

Brief information regarding my father Kenny. He is 55 years old, never smoked, never drinks, and is a relative healthy active guy (could lay off the McDonald's sometimes lol). Retired Professional Firefighter, Retired Chief Warrant Officer for the Coast Guard, and now current civilian at Coast Guard HQ in Washington working for Homeland Security (you could say he's a personal hero of sorts). He did have Hodgkin's lymphoma back in '99 but has been in remission ever since.

**First Symptoms and Synopsis of Appts over last two weeks.

Two and a half weeks ago he woke up to a sharp pain in his right side with stomach aches. He went to the ER which was surprising because he barely goes to the doctors so I knew this was something serious. They did a sonogram of his side which showed lesions on his liver. The ER at this point sent him home to follow up with a GP.

Next was scheduling a CT which confirmed the findings. 

Also at this time, Sept 3rd, he scheduled to meet with a Gastroenterologist to discuss the stomach and upper GI pain (acid reflux). He scheduled an Endoscopy for the 11th, this past Friday.

Now my frustration is slowly increasing that these doctors are not taking more immediate action. He first went to the ER on August 26th and by this point, a week later, his condition has decreased drastically.

Then comes one of the hardest days of my life. A text from my mom to leave work and meet her at the house as quickly as possible... I of course find out my father's prognosis from the scope on Friday.

The GP had already referred and scheduled an appointment with a local oncologist for the 17th, again almost a week later. By the end of the weekend he could barely eat, keep food down, sleep, etc. Most of you know these awful symptoms.

**Current status at ER right now:

This brings us to our current status. I am currently sitting in an ER at 2:04am on what is now Wednesday the 16th. I stopped by to check on him after a concerning text from my mom. She mentioned his overall color was different and upon arriving immediately realized he was jaundice. I told him it's time to call 911 and that this has gone far enough. He nodded in agreement.

They finally are getting his pain somewhat under control which is a least a partial relief. Right now they are running some tests but have had a few complications.

1. Blood drawl: his blood kept clotting in the tubes before the tests could be run. I'm assuming they finally got a sample they could use. 

     -kind of worrisome for myself not knowing what the cause was.

2. Urine sample: extremely dark, possible red from blood?

      -more worrisome with the clotting as well.

ANY thoughts?

3. Waiting to attempt second sonogram because the first was to painful to bear. 

Luckily I think the main ER doctor tonight realized the severity of the situation so they most likely will admit him.

 

****Follow Up Treatment and Suggestions

I found the iNova Fairfax Hospital about 30min away has a Gastrointestinal Multidisciplinary Clinic with a doctor specializing in Esophageal Cancer. I made a call (actually before I saw my dad yesterday evening) and am hoping to receive a call back today.

I'm looking into other oncologist because I don't feel going to the first doctor a GP refers is necessarily the best source... Nothing against that doctor but he doesn't specialize in any particular cancer, just oncology and hematology in general.

 

 

Would you recommend I do whatever it takes to get him to this specialist? iNova Fairfax, to anyone unfamiliar, is truly one of the best hospitals around here besides Hopkins in MD which is a much longer commute.

Most important but broad question.. 

Can anyone please suggest topics, tests, research, etc that I should be asking and/or doing? I have already learned a lot from this community and found comfort in knowing I'm not alone. I will be making sure we test for the HER2 protein so I can get an idea of all possible  treatments.

 

For anyone that has read my long ramble and can provide any help I truly truly appreciate it. Without meeting an actual oncologist yet I have so many questions and concerns. I don't even have some sort of timeframe of what could happen down the road. I'm going to start taking control because I originally was letting my Mom and Dad make the decisions. But I refuse to wait any longer for actions to be taken.

Thank you and God Bless.

 

-Jeremy McDaniel

Woodbridge, VA

 

Comments

  • paul61
    paul61 Member Posts: 1,392 Member
    #2
    I am sorry you find yourself here

    Jeremy,

     I am so sorry that you and your family find yourself here. Unfortunately your Dad’s symptoms sound very familiar. The sad thing about esophageal cancer is that the symptoms don’t typically show up until the cancer is in an advanced stage.

    I think you are taking the right steps in terms of researching the hospitals and health care providers that have the best background in treating esophageal cancer. Since this type of cancer is relatively “rare” in the United States many medical facilities and physicians just do not have the expertise to treat patients aggressively.

    I am not familiar with iNova Fairfax but am of course familiar with Johns Hopkins. In researching facilities I find the National Comprehensive Cancer Network (NCCN) is an excellent reference. Hospitals on this list are on the forefront of innovation in treating various kinds of cancer. Here is a reference to their web site: http://www.nccn.org/members/network.aspx

    Esophageal Cancer, particularly Stage IV esophageal cancer can be difficult to understand and over the next few months you will hear a lot of terms that are new and difficult to understand. I find the NCCN treatment guide for esophageal cancer to be an excellent research document. Here is a reference to a copy of the document: http://www.nccn.org/patients/guidelines/esophageal/#

    I know this is a difficult and frightening development for your whole family. Your Mom and Dad are lucky to have your support at 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
    Five Year Survivor

     

  • slpmom
    slpmom Member Posts: 34
    #3
    Hi Jeremy - we hate going to

    Hi Jeremy - we hate going to the ER but it really is the place to get the fastest answers from tests. Insist they admit him (I'm sure they will anyway with those symptoms) and get as much done during the hospital stay as possible...don't rush your dad's stay (my husband is always in "get me outta here" mode) - We too were very frustrated because there were many appointments to make and many drs to see and everytime we would make an appointment, it was another week or two of waiting. But you are just going to have to take it one step (if not one appointment) at a time. You gotta be patient but kinda pushy at the same time! It's very stressful, I know. 

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