My husband has just been diagnosed, too

ChiefTom
ChiefTom Member Posts: 15
edited March 2014 in Esophageal Cancer #1
Hi, my name is Liz. My husband Tom was just diagnosed with EC that has spread to his spine. He had an MRI, petscan, biopsy of the spine and an endoscopy. As you know, I am just heartbroken and devastated. The onc said chemo only and wants to start on Tuesday. We have an appt tomorrow for a consultation.

A little background information. Tom was a NYC Fire Dept Battalion Chief and retired almost 2 yrs ago with a shoulder injury. He worked at the World Trade Center for about 2 months after 9/11. I don't know if all the toxins were a cause of this. He is 59 yrs old and in relatively good health. All his labs are always good including chest xrays. About 3 months ago he started having a piercing pain in his chest and back. He also started having hiccups after he started to eat. His primary sent him to an ortho who did some xrays and referred him to Physical therapy. It did absolutely nothing. He even tried acupuncture last month while we were on a cruise.

He finally returned to the ortho and said please give me an MRI. The rest is history.

Our daughter is graduating HS on Saturday and ready to go away to college in the fall. Our son is only 16. They don't know anything yet. They do know their Dad has been going for some tests and they've seen my swollen eyes. I don't cry in front of them. Tom is not expressing much emotion. I think he is in denial. He is taking dilaudid for pain control. I hope he doesn't need it on a regular basis.

We live 50 miles from NYC so I called Sloan Kettering. They said they have a 3-4 wk wait and to call 3-4 wks before the repeat scan. Cancer center of America has an even longer wait because of our insurance. I guess we have no time to wait. Please keep us in your prayers as you are all in ours. Liz&family

Comments

  • Lylesmyprince
    Lylesmyprince Member Posts: 130
    #2
    Praying for you and your
    Praying for you and your family, Liz. One does go through a state of numbness and denial. So many stages. Hold fast to your family and the love you share with each other and make a mental bookmark of all the times you have together. They will help you get through this journey.

    Blessings,
    Susie
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • K_ann1015
    K_ann1015 Member Posts: 500
    #4
    Hi Liz,
    my situation is
    Hi Liz,

    my situation is different because it is my dad---so I just want to say--- TALK TO SHERRI! not kidding here...

    but I did want to add that the shock fear and utter feeling of devastation is not unique---we all have have went through it---but it is so hard with kids. I do think that you will need to share info once you can with your kids---because they know something is going on (I have 4 ages 9-18).

    But also---wanted to let you know that my dad first had complaints of swallowing issues many months before we could get him to get it checked out. I always kick myself thinking I should have pushed harder---but really I couldn't...long story, but just know --you don't want to wait 1 day, but just take 1 day at a time...it will be hard, but can be done. You obviously are going to have some wait time. LEt others say if they agree or not, but I think this wait---to be able to go to Sloan Kettering AND be able to be fairly close to family---may not be that bad of a trade off. It is much better than going to a small hospital farther away that has little experience with this kind of thing!!!!! I think my dad may have had his first symptoms 6 months before his diagnosis---stage 3, so I guess he is relatively lucky it wasn't worse. BUT I still fear that an initial fear of a "questionable lymph node near the liver" may still be there somehow (that would have made him stage 4). He was a very healthy active 70 yr old---still volunteering at a local church thrift shop fixing things & a volunteer fire fighter--now he is light duty (post chemo radiation & surgery 12/09 @ Duke).

    This isn't going to be easy, but isn't a death sentence, as Sherri and others can attest to. Please keep posting--so many others are in the same boat---it is a place you can vent, ask friends quite the way I could here...you'll see. Prayers are with you, your hubby and kids---stay strong for them--take long walks when you can.
    Kim
  • unclaw2002
    unclaw2002 Member Posts: 599
    #5
    Liz,
    Sloan is a great cancer
    Liz,

    Sloan is a great cancer center doing ground breaking research and clinical trials. My father's experience there was exceptional even though he was getting a second opinion and was going to get treatment in New Orleans.

    I took my father to Sloan for a second opinion and they were responsible for changing the treatment plan from his local doctors and I believe really changed his outcome.
    I have some close family friends that work at Sloan in the medical profession and they said if it were their family members these would be some of the people they would want treating them. They also said to keep pushing for the appointments and to go ahead and get the medical records and fill out all the forms so if a cancellation occurs you are on the list. Don’t give up you can likely get in sooner than you think - keep up the faith and the phone calls.

    As for doctors at Sloan here are some additional recommendations to the surgeon William suggested Inderpal S. Sarkaria, MD, http://www.mskcc.org/prg/prg/bios/1158.cfm

    there are six other doctors who perform MIE’s – here is the link to the general Sloan treatment team doing MIE’s http://www.mskcc.org/mskcc/html/86502.cfm#ESOP-SUR-MIN

    Another surgeon at Sloan who performs MIE’s and has been highly recommended to me is, Nabil Pierre Rizk, MD, FACS his bio is at http://www.mskcc.org/prg/prg/bios/835.cfm

    The medical oncologist who consulted with my dad and who treated my father as a person was Yelena Y. Janjigian, MD her bio is at http://www.mskcc.org/prg/prg/bios/1130.cfm

    The radiation oncologist was Dr. Karen Goodman her bio can be found at http://www.mskcc.org/prg/prg/bios/998.cfm

    There is a good web cast you can view that is about Esophageal Cancer and advances in treatment on her webpage --- here is the link http://www.mskcc.org/mskcc/html/86446.cfm

    And for places to stay during surgery/treatment recovery there is a Hope Lodge in NYC, which offers free housing for cancer patients, here is the web site (there are other locations and this site will allow you to find other lodges throughout the US)- http://www.cancer.org/docroot/subsite/hopelodge/NY_NewYorkCity/nyc_index.asp


    Good luck – I also heard that there are some hotels that have special offers if you need more information let me know. Or if you have any questions about Sloan let me know as well.

    Best,
    Cindy
  • Unknown
    Unknown
    #6
    This comment has been removed by the Moderator
  • ChiefTom
    ChiefTom Member Posts: 15
    #7
    unclaw2002 said:

    Liz,
    Sloan is a great cancer
    Liz,

    Sloan is a great cancer center doing ground breaking research and clinical trials. My father's experience there was exceptional even though he was getting a second opinion and was going to get treatment in New Orleans.

    I took my father to Sloan for a second opinion and they were responsible for changing the treatment plan from his local doctors and I believe really changed his outcome.
    I have some close family friends that work at Sloan in the medical profession and they said if it were their family members these would be some of the people they would want treating them. They also said to keep pushing for the appointments and to go ahead and get the medical records and fill out all the forms so if a cancellation occurs you are on the list. Don’t give up you can likely get in sooner than you think - keep up the faith and the phone calls.

    As for doctors at Sloan here are some additional recommendations to the surgeon William suggested Inderpal S. Sarkaria, MD, http://www.mskcc.org/prg/prg/bios/1158.cfm

    there are six other doctors who perform MIE’s – here is the link to the general Sloan treatment team doing MIE’s http://www.mskcc.org/mskcc/html/86502.cfm#ESOP-SUR-MIN

    Another surgeon at Sloan who performs MIE’s and has been highly recommended to me is, Nabil Pierre Rizk, MD, FACS his bio is at http://www.mskcc.org/prg/prg/bios/835.cfm

    The medical oncologist who consulted with my dad and who treated my father as a person was Yelena Y. Janjigian, MD her bio is at http://www.mskcc.org/prg/prg/bios/1130.cfm

    The radiation oncologist was Dr. Karen Goodman her bio can be found at http://www.mskcc.org/prg/prg/bios/998.cfm

    There is a good web cast you can view that is about Esophageal Cancer and advances in treatment on her webpage --- here is the link http://www.mskcc.org/mskcc/html/86446.cfm

    And for places to stay during surgery/treatment recovery there is a Hope Lodge in NYC, which offers free housing for cancer patients, here is the web site (there are other locations and this site will allow you to find other lodges throughout the US)- http://www.cancer.org/docroot/subsite/hopelodge/NY_NewYorkCity/nyc_index.asp


    Good luck – I also heard that there are some hotels that have special offers if you need more information let me know. Or if you have any questions about Sloan let me know as well.

    Best,
    Cindy

    Thank you all so much for
    Thank you all so much for all of you prayers and support. I know that you all mentioned 2nd opinions. But did you mean delay treatment until then? The onc said Tom has 7-8 spots on his spine and it appears to be one lymph node involved. His pain level is pretty high and he is taking some powerful painkillers around the clock. The regular onc referred us to a radiation onc and wants Tom to start on that 5 X per week for 3 weeks for his spine.He feels that this will relieve some of his pain. They also want to start some chemo on Wed.

    Tom will call his union this monday morning to see if anyone can pull a few strings and get him a consult at Sloan. I'm not sure what to do at this point.
  • Unknown
    Unknown
    #8
    ChiefTom said:

    Thank you all so much for
    Thank you all so much for all of you prayers and support. I know that you all mentioned 2nd opinions. But did you mean delay treatment until then? The onc said Tom has 7-8 spots on his spine and it appears to be one lymph node involved. His pain level is pretty high and he is taking some powerful painkillers around the clock. The regular onc referred us to a radiation onc and wants Tom to start on that 5 X per week for 3 weeks for his spine.He feels that this will relieve some of his pain. They also want to start some chemo on Wed.

    Tom will call his union this monday morning to see if anyone can pull a few strings and get him a consult at Sloan. I'm not sure what to do at this point.

    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #9
    ChiefTom said:

    Thank you all so much for
    Thank you all so much for all of you prayers and support. I know that you all mentioned 2nd opinions. But did you mean delay treatment until then? The onc said Tom has 7-8 spots on his spine and it appears to be one lymph node involved. His pain level is pretty high and he is taking some powerful painkillers around the clock. The regular onc referred us to a radiation onc and wants Tom to start on that 5 X per week for 3 weeks for his spine.He feels that this will relieve some of his pain. They also want to start some chemo on Wed.

    Tom will call his union this monday morning to see if anyone can pull a few strings and get him a consult at Sloan. I'm not sure what to do at this point.

    This comment has been removed by the Moderator
  • Anj_and_Rob
    Anj_and_Rob Member Posts: 29
    #10
    HI Liz
    You and your husband are in our prayers. Like your husband mine was exposed to toxins in Iraq being stationed so close to burn pits. Sinch he had no other risk factors at all, the oncologist thinks he must have had to of been exposed to something and that some people have a genetic defect that makes them more prone to cancers. It was a bumpy road when he was first diagnosed in February waiting and more waiting for everyone to get tests scheduled, very frustrating. But keep bugging the doctors and be assertive. My husband didn't show much emotion at in at first, he had the state of mind like he used to tell me "I got to deal with what I gotta deal with" I think it just may take some time for him to come to terms with it. We wish you the best.

    Anjanette & Robert
  • BMGky
    BMGky Member Posts: 621
    #11
    Our prayers are with your family
    EC diagnosis is a shock to every family who hears the diagnosis. This site will help you through the many stages of treatment and needs. I'm relatively new to the site but it has been very helpful to me. The best and prayers to you and your family.

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