My Mom

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photowander
photowander Member Posts: 7
edited March 2014 in Esophageal Cancer #1
In early November, my mom started having painful and difficult swallowing, and she felt that something wasn't right. She made an appointment with her regular doctor and he said that, considering her history of Acid Reflux, an Endoscopic exam of her Esophagus was needed. On November 16th, she had that examination and they took a few pictures and several biopsy samples. The pathology reports said that it was cancer and more tests were scheduled. On November 19th, she had a CAT scan that showed a spot on her liver as well as the esophagus. This was sad news for all of us, but we were very thankful that her doctor's had reached a diagnosis so quickly.

After the Thanksgiving holiday we discussed mom's options with a friend of ours and he referred us to a doctor at the NMC, Dr. Sasson, and by Dec. 8th we had an appointment with him. Mom was comfortable with her new doctor and he was able to schedule an extra couple of tests (PET scan and Ultrasound) for the next morning. We got a call on Friday morning from his assistant and we found out that the little spots on her liver lit up on the PET scan and therefore could be canerous. With all this information they are now recommended a liver biopsy. She had a biopsy on Dec. 20th and the pathology report came back yesterday as negative for cancer. The doctor feels these could be a false negative and wants to do a Laproscopic Exam of her liver. In the meantime, they said she would need 6 weeks of radiation treatment, then 4 weeks of rest and evaluation, followed by surgery, but this has NOT started yet and I am worried that it will be a few more weeks before they start it. That can't be good. What should I be doing to speed this process along?

It is difficult for mom (who is 73 and in relative good health) to keep getting tested week after week and never receive treatment. She is on blood thinners and must go off the blood thinners for each test and then go back on and then back off. She did develope a clot in her leg but it was treated and got better. I am just wondering what to expect and if this delay in treatment is normal and won't be bad for her. I just imagine the worse! Like cancer cells eating their way through everything as fast as they can!!

Any advice for me, as I care for my mom, would be appreciated.

Comments

  • sandy1943
    sandy1943 Member Posts: 824
    Options
    Hello, You are blessed to
    Hello, You are blessed to have accessed this site. Even though, I went thru treatment and surgery three years ago, I'm not a good one for giving answers. We do have people that are so knowledgeble and they will be responding to you soon. I was diagnosed on Nov, 13,2007 and had my first chemo on Dec. 26, 2008. With all the testing, I was miserable. All I wanted was for them to take it out then. I am fortunate i didn't have any other health issues to deal with.
    All my test have come back cancer free and I thank God for this. Please keep coming to this site. We have so many caregivers that can be so much help to you.
    My prayers are with you and your mon,
    Sandra
  • This comment has been removed by the Moderator
  • paul61
    paul61 Member Posts: 1,391 Member
    Options
    Your Mom's medical team is moving WAY too slowly!!!
    Hello, and welcome to our little family of EC Survivors.

    It seems that the time that has passed between your Mom’s initial pathology diagnosis of cancer in mid November and now is way too long.

    The questionable spots on her liver require evaluation to determine if your Mom is a surgical candidate, but irrespective of that outcome, radiation and possibly chemotherapy should begin as soon as possible.

    I would recommend you take the following steps as soon as possible:

    1. Have your mother evaluated at a major cancer center that specializes in esophageal cancer. (If you provide us with your location we could recommend one or two nearby.)

    2. Find an aggressive oncologist and get your mother started on a plan for radiation and chemotherapy. It is not clear what specialty Dr. Sasson follows but someone should be asking questions about when a treatment plan will be defined and when it will start.

    3. You did not mention if your Mom had an ultrasonic endoscopy (EUS) to determine the depth of penetration of the cancer in her esophagus and involvement of any nearby lymph nodes. One should be considered to define a clear staging for her treatment plan.

    The duration of these tests and definition of a treatment plan should take a couple of weeks, certainly not almost two months. Your Mon’s current medical team is moving too slowly (unless I am missing some major facts).

    Please let us know where you are located and we can provide some suggestions of major cancer centers to contact.

    Time is important here, you and your Mom need to move quickly!!!

    As a quick guide please find below a list of the top 10 Cancer Centers in the US

    1. University of Texas, M.D. Anderson Cancer Center, Houston, TX
    2. Memorial Sloan-Kettering, New York, New York
    3. Mayo Clinic, Rochester, Minnesota
    4. Johns Hopkins, Baltimore, Maryland
    5. University of Washington, Seattle, Washington
    6. Dana-Farber Cancer Institute, Boston, Massachusetts
    7. Massachusetts General Hospital, Boston, Massachusetts
    8. University of California, San Francisco Medical Center, California
    9.Cleveland Clinic, Cleveland, Ohio
    10. Ronald Reagan UCLA Medical Center, Los Angeles, CA


    Esophageal Cancer is a growing but still relatively rare form of cancer and many local surgeons and oncologists are not familiar with the best treatment options.

    Your Mom is fortunate to have you as an advocate, please move quickly and let us help.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • This comment has been removed by the Moderator
  • Susan_E
    Susan_E Member Posts: 9
    Options
    Moving much too slowly...
    I can truly relate to what you're saying. My dad (age 75) was diagnosed with EC on November 9, 2010. Unfortunately, my parents' insurance severely limited their options. My dad's original oncologist was a DO (not an MD) and was not board certified. This doctor left my dad with the impression that he should go home and die. When we asked for a second opinion at City of Hope, USC, or UCLA, our requests were denied. They finally approved a second opinion at Cedars Sinai in Los Angeles.

    While the insurance company was busy denying our requests for a second opinion, they did take the time to send a representative to my parents' home to discuss end of life care.

    We feel we're on the right path now, and my dad should start aggressive chemo and radiation shortly after the new year. We also switched his Medicare Advantage HMO policy to a PPO policy. It's open enrollment through the end of the year so acceptance is guaranteed, despite a pre-existing condition.

    If you don't feel as though your mother is receiving the right level of care, get a second opinion as quickly as possible. Time is ticking away... and you can never get it back.
  • photowander
    photowander Member Posts: 7
    Options
    sandy1943 said:

    Hello, You are blessed to
    Hello, You are blessed to have accessed this site. Even though, I went thru treatment and surgery three years ago, I'm not a good one for giving answers. We do have people that are so knowledgeble and they will be responding to you soon. I was diagnosed on Nov, 13,2007 and had my first chemo on Dec. 26, 2008. With all the testing, I was miserable. All I wanted was for them to take it out then. I am fortunate i didn't have any other health issues to deal with.
    All my test have come back cancer free and I thank God for this. Please keep coming to this site. We have so many caregivers that can be so much help to you.
    My prayers are with you and your mon,
    Sandra

    thank you
    Wow! I can’t tell you the difference this posting has made for me. I feel so much better informed and since my mom relies on me so much to make decisions with her; this has been extremely helpful for her and I. Thank you! I would also like to say how grateful I am for the care that is expressed by all of you. I am very concerned about my mom and I love her so much. We lost my granddad (mom’s dad) to cancer in 2005 and we lost my dad to Urethra Cancer in 2006. So our family is well acquainted with the grief and pain of this disease. After dad died, mom came to live with us in Omaha, NE. It was rough for everyone; my husband must be a saint to be able to live with 3 generations of strong-willed women under one roof; our 3 daughters have been wonderful as they have navigated through High School and started College with their grandma living down the hall (but not sharing a bathroom, they had to draw a line there!) but especially for my mom, who not only grieved the loss of her husband but of her home. I felt like the frosting in the middle of an oreo cookie, but if you pressed down on me, you didn’t always get something sweet! We all daily relied on the Lord to supply us with strength and grace, and He did.

    Then 3 years later, we felt the Lord was telling us it was time for mom to move out. Yikes! After a month of prayer (my hubby) and a little research (me) about our options, we felt certain it was time to tell mom. She didn’t take to the idea very well; she was comfortable in our home, even though she was miserable. But, a few days later, after talking with some friends and pouring her heart out to the Lord, she agreed to look at her options with us. My mom is a very brave woman. We found a wonderful place for mom at Maple Ridge Senior Community Living, and she moved in to her own apartment in Dec. 2009. Her whole outlook on life changed within a month! Then she met a wonderful man named, Don, and a friendship ensued. Then Don decided he really liked my mom, admired her courage, laughed at her jokes and respected her strong faith in the Lord, he pursued her. I will never forget the day that Don asked us for our mothers hand in marriage, it was so sweet! We consented, and they were legally and happily married in June 2010. They are quite the pair of newlyweds and I enjoy seeing their new zest for life and love together. Don is 80 years young and a cowboy at heart, he wears the hat and boots to prove it. They make their home together at Maple Ridge and life has been good.

    Life is full of ups and downs. I have to admit I like the valley life as much as I enjoy the mountain peaks but it is the hard climbs in between that I find difficult. When mom was first diagnosed with Esophageal Cancer on 11-16 and then we found out on 11-19 that there was a spot on her liver too, I knew we were headed back down to a valley. I like to hike, especially in the mountains, and it has been my experience that the descents are the place where you can lose your footing the easiest. I have found that getting low to the ground; even sometimes slowly, sliding on my bottom, is the best way to descend to the valley. I am always reluctant to leave the heights, with its incredible views, but the campsite in the valley is a welcome place of shelter, warmth and food.

    I think this holiday season has been a hard time to try to start a cancer treatment and I hope the New Year will bring a welcomed time of routine; a different routine, a much unexpected one; but one that can be managed, especially with the help of our new friends here on this website. Thank you. God bless you for being such beautiful reflections of His heart. We appreciate your prayers, Wanda
  • photowander
    photowander Member Posts: 7
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    unknown said:

    This comment has been removed by the Moderator

    So glad you understand
    Your words of understanding actually helped me better understand Esophageal Cancer and how it will effect my mom. Thank you! I am so grateful for more clarity. I spoke with the doctor about what the difference would be in the chemo protocol and they agreed to go ahead and do the powerport along with the laparoscopic exam. No word on a jtube yet. No staging yet. The doctor wants to stage it after seeing the liver. Dr. Sasson is our 2nd opinion (I didn't mention mom's first doctor). After speaking with mom's Cardologist yesterday, I might even consider a 3rd opinion. But, we will wait until after the Lap Exam on Monday. You are right about the spots on the liver being a hold up. I wish the biopsy had been more conclusive, but I am holding on to the hope that her liver will be declared cancer free upon further exam and that she can then have a surgery for the EC. Keep us in your prayers. Thank you! Wanda
  • photowander
    photowander Member Posts: 7
    Options
    paul61 said:

    Your Mom's medical team is moving WAY too slowly!!!
    Hello, and welcome to our little family of EC Survivors.

    It seems that the time that has passed between your Mom’s initial pathology diagnosis of cancer in mid November and now is way too long.

    The questionable spots on her liver require evaluation to determine if your Mom is a surgical candidate, but irrespective of that outcome, radiation and possibly chemotherapy should begin as soon as possible.

    I would recommend you take the following steps as soon as possible:

    1. Have your mother evaluated at a major cancer center that specializes in esophageal cancer. (If you provide us with your location we could recommend one or two nearby.)

    2. Find an aggressive oncologist and get your mother started on a plan for radiation and chemotherapy. It is not clear what specialty Dr. Sasson follows but someone should be asking questions about when a treatment plan will be defined and when it will start.

    3. You did not mention if your Mom had an ultrasonic endoscopy (EUS) to determine the depth of penetration of the cancer in her esophagus and involvement of any nearby lymph nodes. One should be considered to define a clear staging for her treatment plan.

    The duration of these tests and definition of a treatment plan should take a couple of weeks, certainly not almost two months. Your Mon’s current medical team is moving too slowly (unless I am missing some major facts).

    Please let us know where you are located and we can provide some suggestions of major cancer centers to contact.

    Time is important here, you and your Mom need to move quickly!!!

    As a quick guide please find below a list of the top 10 Cancer Centers in the US

    1. University of Texas, M.D. Anderson Cancer Center, Houston, TX
    2. Memorial Sloan-Kettering, New York, New York
    3. Mayo Clinic, Rochester, Minnesota
    4. Johns Hopkins, Baltimore, Maryland
    5. University of Washington, Seattle, Washington
    6. Dana-Farber Cancer Institute, Boston, Massachusetts
    7. Massachusetts General Hospital, Boston, Massachusetts
    8. University of California, San Francisco Medical Center, California
    9.Cleveland Clinic, Cleveland, Ohio
    10. Ronald Reagan UCLA Medical Center, Los Angeles, CA


    Esophageal Cancer is a growing but still relatively rare form of cancer and many local surgeons and oncologists are not familiar with the best treatment options.

    Your Mom is fortunate to have you as an advocate, please move quickly and let us help.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!

    Help is welcome
    Thank you, Paul, for your wise words of advice. This slow pace has been difficult. I think the main thing that has slowed things down is mom's desire to stay local. Omaha has some great doctors and our hospitals are good, but it has been slow. At first I agreed with mom about staying local, her and Don are elderly and want to be close to home and family; I have 2 daughters still living at home, as they attend college. Being away for weeks at a time seemed awful, but in a fight for your life...I am hoping that mom might change her mind...if needed. MD Anderson in Houston is a place of interest, I have a cousin who lives there. The other thing that has slowed things down, the holidays; family coming to visit and doctors taking time off have affected the pace. Other factors, her heart and her coumadin therapy. I try to be patient, while mom tries to be a good patient: we make a good team. HA! We appreciate your help. What a blessing YOU are!

    If you have read my other responses, you know we have a Laparoscopic Exam scheduled for Monday. They will also insert the powerport then, as we got clearance from her Cardiologist yesterday. Yippee! My prayer is that the spots on the liver are NOT cancer and that mom will then be a eligble for surgery. If they are cancer...then we hope to talk with Dr. Sasson about the most aggressive approach we can take by other means, such as TheraSphere. I try to learn as much as I can as quickly as possible. My hubby is getting a little tired of going to bed with me searching websites till the late of night. HA! But, I am sure glad that I found this website!! (he is too:>)
    Thank you for your help, Wanda
  • photowander
    photowander Member Posts: 7
    Options
    Susan_E said:

    Moving much too slowly...
    I can truly relate to what you're saying. My dad (age 75) was diagnosed with EC on November 9, 2010. Unfortunately, my parents' insurance severely limited their options. My dad's original oncologist was a DO (not an MD) and was not board certified. This doctor left my dad with the impression that he should go home and die. When we asked for a second opinion at City of Hope, USC, or UCLA, our requests were denied. They finally approved a second opinion at Cedars Sinai in Los Angeles.

    While the insurance company was busy denying our requests for a second opinion, they did take the time to send a representative to my parents' home to discuss end of life care.

    We feel we're on the right path now, and my dad should start aggressive chemo and radiation shortly after the new year. We also switched his Medicare Advantage HMO policy to a PPO policy. It's open enrollment through the end of the year so acceptance is guaranteed, despite a pre-existing condition.

    If you don't feel as though your mother is receiving the right level of care, get a second opinion as quickly as possible. Time is ticking away... and you can never get it back.

    insurance woes
    My mom has had some insurance trouble too. She has Medicare, Humana and then also a policy with United Health Care, that my dad had as he retired from NCR. I may have done the wrong thing in seeking a second opinion, I didn't even ask the insurance company if I could, I just did it. OOPS! I hate it when they think they are in charge, but I do try to get along with them nicely, so I better call them. We are in the process of switching mom's United Health Care, because she got a friendly letter from NCR saying that non -union employees have to make a change. But, during the open enrollment period she can make a choice and her pre-existing conditions won't be a big deal.

    I feel for you, Susan, between the government, the insurance company, and the doctors, it is hard to get what you feel you need. More time, is what I really wish I had right now! HA! tick tock! You can't get that time back ...and you can't go back...only forward...but it is good to look back and see things from a different perspective. Thank you! Take care, Wanda
  • photowander
    photowander Member Posts: 7
    Options
    unknown said:

    This comment has been removed by the Moderator

    My turn to write an "epistle"
    Thank you, William; it is evident to me that you put a great deal of thought and heart into your postings. My heart had almost fainted, and then I found this website and received much encouragement from all of the responses by this wonderful community of survivors. God blessed me through each one. I see His hand at work and His heart being expressed. I am so grateful for your “Barnabas” ministry, it a gift from the Holy Spirit, and I welcome it! Thank you.

    I feel that I should probably give you more information about the process that we have been through. This might be long, so take it in slowly. Not everyone speaks so freely and easily about medical things and this website is amazingly open. One of my greatest frustrations has been the lack of good communication with knowledgeable people. I use to work in a hospital as a Medical Technologist and so I want to be able to talk about this stuff with educated care givers and patients, as well as the doctors, both are important to me.

    My mom, Betty; I call her beautiful Betty, is the wife of Don Carlson and the mother of 5; I am the oldest and because of my medical background, the one that mom trusts to help her manage all things health related. Her medical history includes high blood pressure (since 2000), congestive heart failure (in 2002) and pulmonary embolisms (in 2002 and in 2005) due her weak heart and to the tendency to get blood clots; she now has a pacemaker, a filter in her venae cava and she is on warfarin. After daddy died of Urethra Cancer in 2006, she moved to Omaha to live with us and her new cardiologist was surprised at how good heart was doing. In fact, he found it hard to believe that she had CHF, and after a year of further improvement he took the diagnosis off her chart, and each year since then her heart continues to get better. This was an answer to prayer for me. My grandmother had CHF, my mom had CHF and I started praying for God to remove the disease from our family line. I believe He answered that prayer. Her cardiologist gave her clearance yesterday for her to have the laparoscopic exam and the power port.

    Her medical history also includes some cancer on her father’s side. Her father had colon cancer, his brother had esophageal cancer and a sister had breast cancer. She is fearful of cancer; I am praying once again that the Lord would do a miracle for our family and remove this disease from our family line. My mom jokes that if I keep praying our family we won’t have anything left to die from. HA! I love life and I love life in Christ! I am not afraid of death, but I don’t like Satan trying to rob my family of life. So, I go to battle, both in prayerful and medical ways.

    What more can I say? I hope you have read my other responses. But, I will repeat a few things for you anyway. Mom’s first doctor was Dr. John Joseph Cannella with MGI, a fine doctor and an excellent clinic; he did the initial endoscopy of the esophagus (done on Nov. 16th) and recommended 6 weeks of radiation treatment, 4 weeks of rest and then surgery. They said the CT (done on Nov. 19th) revealed a single spot on the liver but made no recommendations or suggestions for that spot. I felt that was short sighted and wanted some advice so I started praying. In the meantime we celebrated Thanksgiving with family visiting from Colorado. On Monday, Dec. 6th we still had not heard anything from Dr. Cannella, nothing about treatment or further testing, and I was asking the only person I know to ask, my heavenly Father, what to do and where to turn. He said, “Call Don” a friend of ours who is a Physician’s Assistant at UNMC; I laughed (just call me Sarah) and thought now is a funny time to call, because he would be at work. I called (I think it is good to obey sooner rather than later) and Don answered the phone. He and I had a wonderful chat and he recommended that I call and try to get mom in to see Dr. Aaron Sasson, he warned me that he is a very busy doctor but that he thought Dr. Sasson would be the best. I called his office and got an appointment for mom on Wednesday, Dec. 8th at UNMC.

    When we arrived that morning we found that he had already viewed mom’s Endoscopic Exam of the Esophagus, had the biopsy confirmed with his Pathologist, and was looking at the CT scan (a disc that we picked up that morning on our way to his office) and felt that the spot on the liver was concerning and he wanted to do a PET scan and an Ultrasound. We got those scheduled for the next day at UNMC. This is a pace that I am comfortable with since I worked in a hospital once. The PET scan revealed 2 spots on the liver, the lymph nodes appear unaffected and so Dr. Sasson then thought a biopsy would be good. That was done on Dec. 20th and we heard back on Dec. 27th that it was negative for cancer. In the meantime, mom had developed a clot in her leg, while off her warfarin for the first endoscopy with Dr. Cannella, and she had been receiving enoxaparin (Lovenox), prescribed by Dr. Sasson, to bridge the gaps now when she goes off her warfarin. This is a very expensive medication but necessary for mom, especially when she has any procedures that require her to go off the warfarin.

    Mom has done very well with all the test procedures; she is such a good patient! She hates the Lovenox shots though:<( She can’t do them herself and her hubby has been doing them. I wish I had time to tell you more of his story. He is a gentle giant, a bit grumpy at times, 80 years young and a cowboy at heart. He even wears the hat and boots to prove it. His first bride was diagnosed with Pancreatic Cancer and passed away in 2006, about the same time mom’s first hubby died. They both moved into Maple Ridge Senior Living Community in Nov. (Don) and Dec. (mom) 2009, very depressed and lonely. They met about a month later at one of the functions and a friendship ensued. It wasn’t long before Don decided that he really liked my mom (she tends to have that effect on people) and he started pursuing her romantically. A few months later he asked my husband if he could court her and we were delighted. They got engaged in May and were married in June 2009. It was a whirlwind wedding but the relationship has been an anchor of love and care for my mom. He is a great man and our family loves him dearly. They share a home together at Maple Ridge and life is good. God is amazing!

    Since reading your “epistle” on EC and the other responses from so many caring people…I have a renewed commitment to fight for mom. I have also found that Dr. Sasson’s patient coordinator (Rachel) is an awesome young woman! She has been a tremendous help this week, last week (the week of Christmas) she was off, but this week we have talked on the phone several times each day. All I have to do is tell her what I need and she gets it. WOW! She helped us get in to see mom’s cardiologist ASAP; we were there yesterday. He gave mom clearance for the Lap Exam and the Power Port, any time she has to have general anesthesia I guess we have to get clearance. Dr. Sasson is out of town for a vacation but his partner (Dr. Lee) will do the procedures.
    I just got off the phone with Rachel again today, Thursday, (everyone is off tomorrow for New Year’s) and I talked with her about the HER2, she will get that ordered; I talked with her about TheraSphere, she says that is a possibility…down the road, if the liver spots are cancerous and if they are the right size and in the right place. I also asked her about a jtube and if that could be inserted at the same time as the power port and she said “Yes”! Rachel also made an appointment for mom with a Medical Oncologist, Dr. Schwarz on Tuesday, Jan. 4th so that we can start talking about treatment. YIPPEE! What a week it has been, and next week will start with a double bang…Monday at UNMC for the procedures and Tuesday at the new doctor’s office for a Med. Onc. consultation. I feel a little like we a diving into the deep end of the big pool. No more wading in the baby pool for us.

    The wait has been hard. I am really not a very patient person, and I have to rely on the Holy Spirit to produce that fruit in me. I loved what you shared in your “epistle” about waiting. You said, “I've also dubbed this link ‘the other waiting room.’ You know we have one in all hospitals where anxious caregivers and friends ‘wait and pray’…We become angry and frustrated when we see doctors dilly-dally around, and not seem to know exactly what they should be looking for, meanwhile the ‘cancer is growing’…Some doctors work willingly with the patient…We want the doctors to know more than we do, but we want them to listen to us, and give us an ‘honest’ answer to our questions.” As I read what you wrote it helped me recognize my feelings, express my emotions and then move through them with God’s grace. Thank you!

    Your words that day were like a balm to my heart. I had just posted a journal entry on mom’s CaringBridge webpage about waiting on the Lord, Psalm 37; and so your words were very timely for me. I am always in awe of how God will let other people minister His love and grace to one another. Thank you so much for helping me, as I help mom. Gratefully, Wanda
  • LivingFaith
    LivingFaith Member Posts: 74
    Options

    insurance woes
    My mom has had some insurance trouble too. She has Medicare, Humana and then also a policy with United Health Care, that my dad had as he retired from NCR. I may have done the wrong thing in seeking a second opinion, I didn't even ask the insurance company if I could, I just did it. OOPS! I hate it when they think they are in charge, but I do try to get along with them nicely, so I better call them. We are in the process of switching mom's United Health Care, because she got a friendly letter from NCR saying that non -union employees have to make a change. But, during the open enrollment period she can make a choice and her pre-existing conditions won't be a big deal.

    I feel for you, Susan, between the government, the insurance company, and the doctors, it is hard to get what you feel you need. More time, is what I really wish I had right now! HA! tick tock! You can't get that time back ...and you can't go back...only forward...but it is good to look back and see things from a different perspective. Thank you! Take care, Wanda

    Hello
    Wanda,

    I just got around to reading the boards again and see that you are from Omaha. Me too! There are several of us with "Husker" connections. "Bob's Wife" is from Omaha as well.

    My dad, age 65, was dx on July 13th with EC IV. Sadly, his journey ended Dec 13th, exactly 5 months. It is hard to think it was 3 weeks ago today he went to walk with Jesus. Happy for him, heartbreaking for us.

    I worked at UNMC for 8 years, mostly in Cardiology. It is a great facility for a lot of things, liver transplants being one of them. I will say, they tend to be SLOW! There were times it took 3 weeks to get a Cardio appt consult. The doctors are on salary, which is good, but also aren't super motivated to see people quickly, especially during the Holidays.

    If want to stay local for a second opinion, I highly recommed Creighton, Dr. Mittal. They have a Esophogeal Center. They are doing quite a bit of research as well. I'm participating in a research study of the genetic link of EC and Barretts in families. My dad got an appointment in 3 days, 4 days later he started chemo. He went back to our home town for chemo and treatment. I wish he would have stayed here for treatment, but his Drs always stayed in contact with his hometown drs. Dr Mittal gave me his email and we have been in contact several times when I had questions about my dad. He was very honest and sincere. He is the first dr I have ever met that apoligized to me for not having better medical knowledge and treatments for this dreadful agressive disease. He went on to say, it is his life's work to educate people on how serious reflux disease can be, find treatments, and maybe prevent EC, so another family doesn't have to suffer losing a loved one.

    Time is not your friend! Even with chemo, my dad had a PET scan in Sept, 2 months after the first one showing his cancer was "stable". He still had the "hot spot" on his liver but no other mets. 3 weeks later he was too sick to get his chemo and they did a a CAT scan. It showed mets in his lungs, more spots in his liver, and the little "hot spot" had grown 2cm in those 3 weeks.

    I'm not telling you this to be negative or scare you. This was my dad's timeline and proof of how fast this beast can travel. We had hundreds of people praying for him all over the world for a miracle, but that was not God's will.

    Please feel free to send me a private message if you have any questions.

    Blessings,

    Deb
  • unclaw2002
    unclaw2002 Member Posts: 599
    Options

    insurance woes
    My mom has had some insurance trouble too. She has Medicare, Humana and then also a policy with United Health Care, that my dad had as he retired from NCR. I may have done the wrong thing in seeking a second opinion, I didn't even ask the insurance company if I could, I just did it. OOPS! I hate it when they think they are in charge, but I do try to get along with them nicely, so I better call them. We are in the process of switching mom's United Health Care, because she got a friendly letter from NCR saying that non -union employees have to make a change. But, during the open enrollment period she can make a choice and her pre-existing conditions won't be a big deal.

    I feel for you, Susan, between the government, the insurance company, and the doctors, it is hard to get what you feel you need. More time, is what I really wish I had right now! HA! tick tock! You can't get that time back ...and you can't go back...only forward...but it is good to look back and see things from a different perspective. Thank you! Take care, Wanda

    Insurance
    Wanda,

    Please get your mother off the Human HMO - they will not allow you to get the care you will need. You can switch to regular Medicare (which will cover all the major expenses) with the required supplemental insurance from another provider. You have until the end of January to make the switch so it isn't too late even though the enrollment period technically ended on 12/31.

    From my experience with my Dad - Humana's HMO denied his request for a second opinion at a cancer specialty hospital (SLOAN in NY) and wanted him to go to a local hospital. They refused to pay for the second opinion even after an appeal from his primary and cancer doctors who sent him for the second opinion. Since he has been on Medicare there have been no problems with insurance or his care. If you have any questions please feel free to send me an email.

    Good luck,
    Cindy