CSN Login
Members Online: 10

Fighting for Dad

Dad'sfight
Posts: 155
Joined: Feb 2013

My name is Justina and I'm new to this site. My 55yo father was dx with Stage 3 EC 9/2012.  We were told the tumor was 7.7cm and extended into the stomach.  He has 2 enlarged lymphnodes and several small ones that have been affected but they say they consider all that localized.  I had taken my father to the hospital in 1/2012 because he was complaining of difficulty swallowing food with increased pain as it would go down the esphogas into stomach.  He also was having chest pains more in the center of his chest.  He was admitted to the hospital and underwent several tests to determine if it was heart related. The cardiac doctor said heart looked clear so he called in a Gastro Consult.  The Gastro doctor came in and looked in his throat with light and had my father swollow a solution of Mylanta and Lidocaine. FINALLY HE GOT SOME RELIEF!!! She then said it was acid reflux causing the pain because the acid was coming up from his stomach and he was discharged with Ranitidine and told to follow up with Cardiac doctor.  We did the follow up in Feb. and was told that he had a blockage and that was what was probably causing his pain. Stent was placed and the pain seemed to decrease, he wasn't really having difficulty swallowing anymore.

Then came time to follow up with PCP.  We told him what had happened and he said that with my father's obesity and hx of the pain with difficulty swallowing he wanted him to go to a Gastro doctor for scope. He thought maybe my dad had an ulcer and felt like he's at that age to be checked regardless.  To this day I can't thank him enough, for really taking the time to listen.  We were completely shocked, like most, when we were told it was cancer.  Even his PCP was taken back for a moment, when I called him from the hospital it took him a few moments before he said anything.

Life has changed, drastically.  My father has heart disease that was dx at age 47 and in my opinion that little heart of his is the strongest I've known, disease or no disease. He underwent surgery to place port, J tube for preperation of chemo/radiation, and the Thoracic Surgeon wanted to get a good look himself and do additional bx. We were sent home with no formal training on the J-tube and even then I felt like things were moving to fast. A technician came out to drop off the J-tube stand and did a 5 min. editorial on how to operate the machine.  Even then when I asked specifics he said that he wasn't a nurse and that I would have to call the 1-800 number provided.  So after about 2 days my father was saying that the feedings were really uncomfortable, causing him not to sleep since we hooked the machine up at night.  I was confused on why we were already using it when he was still able to swallow soft foods. We were told that it was to help  the nutrition since he wasn't taking enough daily by mouth.  Back to the discomfort, I called that 1-800 number and explained the symptoms he was having and questioning the fact that maybe he was getting too much.  She didn't know anymore than I did, so I ended up just calling the surgeons office.  The Nurse Practioner called me back and said to stop the tube feetings since he was eating something by mouth and we would discuss it again when we came in for f/u, 2days away.  Then the next day my father was acting strange, out of his head so I called the Nurse Practioner and he said that it could be too much pain medication, but that he would stay on the phone while I checked his temp.  101, heading back to hospital.

Arrived in ER, they took us immediatly.  They said the J-tube area was infected and that the CT scan showed that there wasn't an abcess under the incision so my father was sent to a nursing home. I couldn't believe it, they said that he had to go there for monitoring of infection.  There wasn't any type of monitoring being done there, I spent every day there arguing with the charge nurse and every night arguing with the night nurse about the poor care.  Within a day of being there the incision started to look bad, but the in house doctor assured me that was normal and the antibiotic would clear it up.  I think the moment I realized that I was going to have to be my fathers mouth piece(he calls me his Pit Bull-LOL) was when he called me at midnight and said a nurse came in to remove the bandage from the J-tube area and it was so painful he was crying then he said she covered it with gauze and hadn't been back since.  2 hours later he contacts me and says that it's really burning and draining down his side. I got in the car drove up and was beside myself. I took the gauze off myself and it was like open flesh, hamburger looking.  I ran out into the hall, found the nurse and the nurse aide that bandaged it up and asked if they thought this looked normal. They responded no but they were going to call wound care in the am, I said you can call the ambulance now, we are out of here.  They came and to make a long story short he was sepsis on arrival,  had a form of an infection that even the CDC couldn't figure out. 2 additional weeks in hospital with surgery to remove J-tube and an open wound about the size of a grape fruit that couldn't be sutured because of infection. An abcess did form under the incision. They were really concerned about him being able to eat with chemo/radiation tx so they went ahead and placed a stent. That ended up placing a stent to make sure he would be able to eat during chemo/radiation.

All of that delayed the Chemo/radiation, we started 11/29, we were so nervous about the delay it had been 2 months since dx.  He did really well, I think that helped boost his confidence.  I was impressed myself, the blood counts and everything that goes along with that stayed in the range of ok because he finished tx with no breaks inbetween. He was able to eat little bites, but we were IV hydrating him at home. The port has really been a blessing. Even though he finished chemo/radiation, it has since caught up with him.  He has lost a total of 76 lbs since September, but he is a fighter.  He has no appetite but I'm good about sneaking nutrients in shakes that otherwise turn him off if he drinks them alone.  We were told that he is not a good canidate for surgery given the hx I explained above. We were told that he might not be in the beginning before starting the chemo, but they said they would wait and see how he does during the chemo.  They decided against it. I was very thankful that the wound healed on it's own even though he was under going Chemo the whole time.

I'm worried because it seems like everything I've read, especially on here that the majority of the people who are survivors have under gone the surgery.  Does the chemo/radiation work alone? We are going for a pet scan at the end of Feb. , waiting for results is one of the worst parts of all of this.  I do believe in miracles, but I'm not niave to the fact that EC survival isn't great. 

I know this is going to be a lot to read, but I have to say this is the first time I've ever told this story from the beginning.  Before this I had never really heard anything about EC, now that I'm going through this with my father, I would love to be a part of changing that.  God bless all those that have been affected by EC.

Justina

 

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

Justina,

Welcome to our little EC family. I am sorry you find us under such difficult circumstances for your Dad. It sounds like he certainly has had a history of sub-standard medical care in the past. Why the first GI consult did not do an endoscopy, given your Dad’s symptoms, is a bit confusing. Perhaps they were taken down the wrong track due to your Dad’s history of cardiac issues.

I am glad to hear that your Dad has completed his chemotherapy. You don’t mention if there has been any further testing to determine your Dad’s response to the chemotherapy in terms of tumor reduction. Has a CT or Pet scan been done to define your Dad’s response to the treatment?

There are certainly some long term survivors here that have not had the opportunity to undergo surgery; either because they had other significant health issues, or because they were staged as Stage IV. However; experience shows that the best treatment approach to improve long term survival chances is chemotherapy, radiation, and surgery.

The survivors that I am aware of that could not undergo surgery due to other significant health issues are being treated at nationally recognized EC treatment centers like MD Anderson, University of Pittsburgh Medical Center, or Sloan Kettering.

You will also find some survivors here who have undergone minimally invasive esophagectimies who also had cardiac issues. You would need to find the right surgeon and the right after care facility.

Clearly NOT the kind of places your Dad appears to have been in the past.

Unfortunately most local medical facilities, even if they have a cancer care center, do not know how to effectively manage esophageal cancer.

If you let us know where you are located we could possibly suggest the NCI certified specialty center closest to you.

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 

Dad'sfight
Posts: 155
Joined: Feb 2013

We live in Phoenix.  They have scheduled another scope for 2/20/13, the radiologsit wanted the surgeon to take a look and do some biopsies if any of the tumor is left.  His insurance runs out on 2/28/13 so they also have him scheduled for a pet scan 2/22/13.  The reason for another scope is the amount of radiation he recieved and the pet scan being so soon that sometimes the body hasn't healed from Radiation and it could show false positives.  I've read some of your previous posts about doctors and finding the ones that aren't so negative, fortantely we love are radiologist.  She is so positive and a great support for my family and father.  In response to the first GI, they did do a CT scan of the chest with contrast at the hospital and the tumor was actually there.  They missed it. I was very fustrated because at the time if I had known more about EC I would have requested the scope myself.  We can't go back now Frown.  Thank you so much for taking the time to read and respond.  It took me awhile to actually post something, but I think those who suffer from EC can actually provide better insight than doctors. Congrats on your 3 year survivel.  It gives me HOPE,

Whats the difference with esophagectomy and the minimally invasive esophagectimies?

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

Justina,

 The major approaches include:

First, the traditional Ivor Lewis (IL) approach. In this approach two large incisions are made. One in the abdomen between the belly button and sternum and one from just under the right shoulder to the middle of the patient’s back. The abdominal incision is used to release the stomach so it can be modified and moved higher to be connected to the remainder of the esophagus. The back incision is used to enter through a space in the ribs to remove a section of the esophagus and form the new connection between the remainder of the esophagus and the remainder of the stomach.

Many surgeons around the US perform this surgical approach.

This approach is the most invasive of the approaches and typically has the longest recovery time. I had this particular surgery and I was in the hospital for 12 days. The original estimate was 10 days but I got an infection in my incisions and was there an extra two days while they gave me IV antibiotics.

  

Second, the Transhiatal Esophagectomy approach. In this approach a large incision is made in the abdomen between the belly button and sternum and a smaller incision is made in the patient’s neck. The abdominal incision is used to perform the same functions as in the IL approach described above. The incision in the neck is used to remove a section of the esophagus and to form a new connection between the remainder of the esophagus and the remainder of the stomach. A more detailed description can be found at 

http://surgery.med.umich.edu/thoracic/patient/what_we_do/esophagectomy_faq.shtml

Dr. Mark B. Orringer at University of Michigan Medical Center is a leader in this surgical approach.

 The in hospital recovery time for this approach is shorter than the IL approach and the recovery time is somewhat shorter.

 

Third, the Minimally Invasive Esophagectomy (MIE) approach. In this robotically assisted approach a number of very small incisions are made in the abdomen and in the neck. The surgeon uses the robot “arms”  and cameras through the small incisions to release and modify the stomach, remove a section of the esophagus and a section of the stomach and re-attach the remainder of the stomach and esophagus. A more detailed description can be found at:

http://www.thoracicsurgery.medicine.pitt.edu/content/Minimally_Invasive_Esophagectomy.pdf

 Dr.  James D. Luketich at  University of Pittsburgh Cancer Institute is the leader in this surgical approach.

 The in hospital recovery time for this approach is the shortest of the approaches and the recovery time is shorter as well.

  

There are a number of reasons why a surgeon may recommend one approach over another. The area around the esophagus has a number of lymph nodes connected into the lining of the esophagus and frequently a number of these are removed to insure a clear surgical margin around the cancer and for pathological examination to validate the staging done prior to surgery. In some cases, prior surgical scar tissue and other medical issues may dictate one approach over the other.

Be sure you understand your surgeons reasoning for selecting one approach over the other. “I don’t do that approach” is not the answer you are looking for. This is MAJOR surgery and you want to have a surgeon that does MANY of these surgeries a year.

When I had my surgery I did not even know an MIE was available. Given my experience, if I had it to do over again I would have traveled to a major cancer center and found a surgeon who is competent in MIE.

Of course you need to be comfortable with your surgeon and insurance is sometimes an issue. But I wanted to you be aware that there are choices and you should make an informed decision.

Given your location I would consider a second opinion at MD Anderson in Huston, TX http://www.mdanderson.org

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 

 

 

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

copied to you from my post in 6 year survivor

Hello, Dad's Fight :)

My husband was a Stage 3 with limited lymph node involvement.  Esophageal Cancer is aggresive and unrelenting and must be met with aggressive medical response.  If surgery is possible, it's the best thing your dad can do toward a successful outcome.  However, having surgery is no guarantee of a bright future - have a read of my About Me page for more information, but not having surgery is not meeting this beast head on.

There are dietary changes that come with the surgery.  There is intense recovery.  But 55 is NOT too old for any of this.  He will need to make the choice however, not you.  Please encourage your father to be well informed - read everything he can to make a proper decision.  If he hasn't had it yet, do get a 2nd opinion.  A 3rd even if you aren't confident from the 1st two.

Best of luck to you and your family.  Prayers to your father!

 

Terry
PROUD wife to Nick, age 49
lost battle to EC, June 19, 2012

BMGky
Posts: 666
Joined: May 2010

Thank goodness you are there to help your Father.  If the hospital is not familiar with EC, they just don't understand the level of care needed.  Just about all who have had to deal with EC treatment and surgery have had some shall we say undesirable interactions with unknowledgeable staff.

I don't know what type of heart disease your father has.  All I can offer is that my husband was 69 when diagnosed; had had a quadruple by-pass some 8 years before.  He received the Ivor Lewis surgery.  Challenging but doable.  Upon returning to intensive care following surgery, his heart went into extreme atrial fibrillation.  Because the surgery is so near to the heart, sometimes the heart acts up.  This is one of the concerns with the surgery as with other possible heart related issues.  Sometimes a person survives the surgery only to be done in by other matters.  One never knows.

My husband survived the surgery and is coming up for his three year scan to see how he is doing.  So far, he has been NED and we continue to pray that his scans are clear.

There are great people on this site.  Paul has been immensely helpful in giving me advice and his advices to you are right on.  

As to insurance, check with your state agencies.  His is possibly considered a health crisis that may qualify him for some sort of state supported insurance or financial help.  Is he eligible for SSI under the circumstances.

Keep coming here with your questions and experiences as all on here are interested in helping.

BMGky

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Justina,

Welcome to the board, thank you for sharing your story.  Sounds like you have already figured out what a roller coaster ride this EC is.  Its good that you can be that pit bull for your dad.  Hopefully you will find some of the support you need here.

Lee Ann

Dad'sfight
Posts: 155
Joined: Feb 2013

The information I have recieved from you guys is so wonderful.  I'm overwelmed with your kindness and the fact that you would take the time to read my post and respond with helpful informtio, is a blessing to me.  At this point we are waiting to find out the results of the pet scan and then I will be digging deep into exactly why they think my father isn't a good canidate.  I will be contacting MD Anderson of Houston since that's the closest for a second opinion.  First I need to find out about insurance, its unfortanate that my fathers potental for treatment is going to be determined by affordability vs. the top centers with skills.

@birdiequeen-Since my mother works my father doesn't qualify for SSI :(.

 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network