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Advanced Esophageal Cancer

cruiser1
Posts: 17
Joined: Jul 2010

Hi,

I am doing research for my sister and her family, we are all devastated.

My brother-in-law, a Vietnam Vet, was just diagnosed with advanced stage of squamous cell esophageal cancer that has spread to his lymp nodes and his spine. One doctor told him it is not operable. This has all come as a shock to us since he just started to have symptoms a little over 3 weeks ago with acid reflux. He is not a smoker, drinks beer some but not hard liquor or a heavy drinker. He was in Vietnam in area that was heavily sprayed with Agent Orange.

The doctor told him he is a candidiate for radiation and chemo.

I need help with some questions please.

Has anyone gone through this and survived it with the radiation & chemo treatments?

What can we expect with this type of treatments?

They live in Florida the (Tampa Bay Area) does anyone know of any doctors in this area that has been successful in treating this type of advanced cancer?

Thank you in advance for any and all help.

BMGky
Posts: 666
Joined: May 2010

As I understand, this Cancer Center is supposed to be very good. More knowledgeable people on this site may know more. Also, I understand Mayo Clinic also has centers in Florida. Again, I have no personal knowledge but I believe there is some good help for you nearby. I am sorry to hear of the diagnosis. When I heard my husband's diagnosis, I was devastated. He, too, had no symptoms and met none of the risk factors. It is an ugly disease. My husband caught his at Stage II, I think, because his nasal allergies with its drainage competed for space with food in his esophagus and the cancer caused him to throw up drainage. We thought it was a hiatal hernia. Appropriate staging is very important and requires a special CT scan. Further, time is of the essence. If you can access a major cancer center that treats esophageal cancer, contact them immediately. From what I understand, much can be done to prolong life and improve quality. Staging holds the key to knowing exactly what should be done. Our prayers are with your family. Check this site daily as it offers great answers--far better than mine--and much support.

cruiser1
Posts: 17
Joined: Jul 2010

Thank you for your information.

I checked with my sister unfortunatley the insurance they have is "Quality Health Plan" does not have the Moffett Cancer Center in their plan nor the Mayo Clinic.

They do have the Lakeland Cancer Hospital. They went for their first appointment with the Lakeland Cancer Hospital yesterday. The Doctor is not specialist in his type of cancer but she told him with his type of cancer the average survival rate is 6 to 8 months!

It is such a shame to have to fight with an insurance company to be able to get the correct/best care needed for a person.

They are seeing a Radioligist Doctor on Tuesday so maybe they can get some idea on the treatment.

I am so glad I was directed to this website from a person on the Cancer Compass. I have already read some very postive messages on here that I have forwarded to my sister and her family.

Thank you.

BMGky
Posts: 666
Joined: May 2010

I understand that a diagnosis of EC makes a person eligible for disability. Also, his being a Vietnam Vet, (thank you for his service and sacrifice), may make him eligible for VA care???? I don't know. I was thinking that perhaps if he has a disability, he might be able to kick into Medicaid or VA support. Always worth a try. I have no information as whether any of this is a possibility but surely,you can get help. Keep on researching. I also understand some centers have clinical trials. I don't know if that helps with costs or costs more. Hope you can find a positive answer.

cruiser1
Posts: 17
Joined: Jul 2010

Thank you so much for your caring. I will have my sister check into this. They did meet with our local VA clinic last week so they could be documented for Agent Orange. Not sure how this would work with them have an Medicare HMO but we are willing to check any and all options.

geraldo1
Posts: 4
Joined: Jun 2010

First check recent edition of U S News and World Report, BEST HOSPITALS, for Cancer.

SHANDS IN GAINESVILLE is highly ranked for cancer and cancer research.

If you are eligible for VA medical, definitely check there. One of the most certified doctors (German med. school, plus 3 residencies at YALE) gave me radiation in private hospital and ALSO gave and was Dept. Head of radiation at the local V A Hospital.

My biggest Anger is you are limited by financial problems even with insurance. I am in my 3rd year of being treated, primarily with Chemo and except for minor travel and misc. costs, it has with Medicare and secondary insurance cost me nothing but the $4000 of premiums I normally paid. (Plus $4000 for wife)

For those of you who feel your insurance is adequate< CHECK > If you live to be older you will be sick and when its you, second class medical won't due.

cruiser1
Posts: 17
Joined: Jul 2010

Thank you for the information.

dragonflymom's picture
dragonflymom
Posts: 47
Joined: Mar 2010

Hello! It's nice that you are doing research for your family. However, one thing I want to tell you is to not get bogged down with statistics. It's something I have learned to do while traveling this cancer path. My mom has stage 4 EC but is doing quite well right now. While the statistics mentioned by the doctor may be true for some, it is equally untrue for others. Each person is unique and they are not a statistic. Do as much research as possible and tell your BIL to fight the good fight. Take care!

cruiser1
Posts: 17
Joined: Jul 2010

Glad to hear your Mom is doing quite well. It is a comfort to know of so many who are fighting the good fight and making it. Thank you for your encouragement.

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hi Cruiser and welcome to our EC family! I was a caregiver for my dad. He had stage iv EC in 11/08. Not operable. He had 6 weeks of radiation and chemo treatments, and did very well.
He was in remission for one year. Do not go by the stats!! We learned not to. Everyone is different, everyone responds differently. In December my dad developed severe pain in his right side. Went for ultrasound, it was cancer in the liver. The ec was the primary cancer and it had metastisised to his liver. He lost his battle and passed away in March. Dealing with insurance cos is the pits. What a pain in the neck they can be. I have some friends on this site that live in Florida, I will contact them and have them reply to you. Keep doing your research, and try your best to get a second opinion. Keep in touch. Know that we will always be here for you, and we will be praying for you.
Tina

cruiser1
Posts: 17
Joined: Jul 2010

Tina I am so sorry for your loss. Thank you so much for coming on here to offer encouragement, information and prayers to others that are going through this.

cruiser1
Posts: 17
Joined: Jul 2010

Sherri,

Thank you for the information. I have a question I hope you can help me with. I did see that the "J" tube was suggested instead of the "G" tube can you give me anymore information about this? Also we have read that nutrition is the best way to fight the EC, it was suggested to us that my sister buy the Vita-Mix to liquifiy the raw veggies and fruits. Is this something that can be fed through the "J" tube? Or do you have other suggestions? My BIL is loosing weight he has been taking boost and trying to eat small meals several times a day but these last few days have been hard very emotional after hearing the statistics from the doctor last week of 6 to 8 months. This is why this site is so wonderful to find so many that are going through this and surviving it. They were told only that his EC was Advanced but from what we have read it appears to be EC IV hopefully the radiologist they meet with on Tuesday can give them more information on this and course of treatment. Thank you again for taking the time to give your information and so glad to hear your husband is a survivor and a real fighter of this.

cruiser1
Posts: 17
Joined: Jul 2010

Thank you Sherri for taking the time to answer my question. My BIL and sister met with the radiation doctor yesterday now they have to wait for approval for the chemo doctor so they can meet with him/her. The radiation doctor suggested they have a flexible tube put down his throat in lieu of the Jtube. I think this is what they are considering for now to get my BIL built back up before they start treatment.
I hope Jim is doing good.

cfight's picture
cfight
Posts: 77
Joined: Jan 2010

Hello, I just spent the weekend with my father who was diagnosed with Stage IV EC in December. He is also a Vietnam Veteran and developed non-Hodgkins lymphoma soon after his service. Eventhough he has had acid reflux for years, the oncologist still believes that his EC is from the treatments he received 30 years ago. I personally think it's a combination of both along with other environmental factors.

His first line of treatment which lasted until early June completely reduced the tumor in his esophagus. He also had hot spots in the bone in his arm which was treated with radiation. He started his second line of treatment in mid June because there were spots showed up on his liver. His blood work remains good and he's actually gained weight over the past 6 months. His biggest symptom from chemotherapy has been fatigue and weakness along with tingling in his hands. He has good days where he can go out to dinner or a party and he has bad days where getting out of bed is difficult.

The CSN has been a wonderful resource for me. I'm glad you found this site! I wish you and your family strength during this challenging time.

Take care,

Carolyn

cruiser1
Posts: 17
Joined: Jul 2010

Carolyn,
Thank you for your story it really helps to see so many on here fighting the good fight and still making it. I too am so glad I found the CSN it has been a great help to me, sister and family. I hope your father is doing good.

catluvr05
Posts: 1
Joined: Aug 2012

Hi, my husband was in Viet Nam and now has passed away from this cancer caused by Agent Orange.

He became very sick, was diagnosed and only had 1 chemo and then was in the emergency room. He bassed away in the hospital.

How can anyone get over this type of awful thing happening?  We had been married 42 years, great marriage.  I am so very lost without him.  I  welcome any suggestions.Thanks

JKGulliver
Posts: 82
Joined: Apr 2013

Your posts resonate with me.  When my husband learned of his EC, we found outselves is two fights - one with cancer, the other with our insurance company.  Make no mistake about it, you are in a fight to the end with them.  If your oncologist really said she was not famliar with this kind of cancer, you can ask for a referral.  If the insurance company denies the referral, you may be able to go to the attorney general's office in your state to file a complaint.  EC is a relatively uncommon type of cancer.  Survival is highly correlated to the skill of the doctor who treats you. To get the best treatment, you need to go to a physician who sees many EC cases a year - or specializes in EC.  Don't take "no" for an answer from them.    

Insurance companies usually have three levels of referrals:  Level 1 is consultation only.  Level 2 is consultation and diagnosis.  Level 3 is Consultation, diagnosis and treatment.  You want to be sure to ask your current oncologist to ask for a level 3 referral.  In addition, you can go to any of the Cancer Centers mentioned by others in their posts and see if they have a clinical trial going on.  If you are accepted into a clinical trial, the oncologist will go to your insurance company for you and ask that they cover your treatment as "in network".  The vast majority of insurance companies participate in clinical trials.  So, in this way, you can be seen at a center, in network, and be a part of cutting edge treatment.

Finally, you should have VA coverage.  You can be seen at Walter Reed.

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