Recommendations for Kaiser Permanente Oncologist in Northern CA?

vg91680

My father was recently diagnosed with stage 4 esophageal cancer. His oncologist told him he has 2 options which are radiation oncology and infusion therapy. His oncologist did not even give him a patient information sheet or anything. He did not seem very caring and it was very difficult to understand what he was saying. Does anyone have a recommendation for a good Oncologist? We are working on getting medicare set up. Considering going outside of Kaiser. If anyone has any recommendations, it would be greatly appreciated. I understand that the prognosis is not very good but if we could find a specialist that is caring and is not just trying to earn a paycheck, that would be great.

LorettaMarshall

vg91680~Hope some of this info helps 2 find a good oncologist

Hello “vg”

Sounds like your dad’s doctor has forgotten that each patient is an “individual”.  His attitude seems “cut and dried”, and I would certainly seek a second opinion.  The very least he could have done was provide you with a basic guide as to how Stage IV Esophageal Cancer patients are normally treated.  All of us here know how devastating a diagnosis of cancer is at any stage, but obviously the lesser the stage, the more options and possibilities there are for successful treatments. 

Below are some references to help you get started on familiarizing yourself with options, questions, etc.  I have found the web to be valuable in researching any type of cancer, but you must be careful to deal only with reputable sources.  I don’t get sidelined by “quackery”—life’s too short for that.

I will tell you that there is one excellent doctor, Dr. Ninh Nguyen who operates out of UC-Irvine in Orange California.  He is a young Vietnamese thoracic surgeon who served with Dr. James D. Luketich in the mid 1990’s when the Ivor Lewis Minimally Invasive Esophagectomy was in its infancy.  The procedure is called “MIE” for short.  It is totally laparoscopic and offers the best options for patients that qualify as “surgical patients.”  That is about the extent of what I know about CA.

Now I know that options are limited for Stage IV.  In that category the cancer has already metastasized to another major organ, so that Esophagectomies are not performed.  However, depending on the condition and age of the patient, and taking into consideration other health conditions, an individualized treatment plan can be worked up for that particular Stage IV patient.

I’ve checked out Vitals.com info on Dr. Ninh Nguyen, and I do not see Kaiser listed as one of the insurances he accepts.  However, his phone number and address are listed as:  http://www.vitals.com/doctors/Dr_Ninh_T_Nguyen/office-locations

12595 Hesperia Rd
Victorville, CA 92395
760-269-3099

Might I suggest that you contact Dr. Nguyen’s office, and explain that your father has been diagnosed with EC Stage IV?  That could be a start.  You could simply ask if he accepts Kaiser Permanente?  It isn’t in the list, but you could then ask if he can recommend a competent oncologist in your particular area.  Not being familiar with “Northern California”, I have no idea of what city you live in, so that’s why I suggested Dr. Nguyen’s office as a good place to start.  Doctors often communicate with one another and “know” the good ones as well one much like your first oncologist who didn’t even give you any information on your father’s cancer.

I feel certain that a call placed there, could guide you to a good oncologist near where your father lives.  It doesn’t hurt to call.  I’ve talked to his nurse before for other patients and I find them extremely kind.  So that is my only suggestion.  I wish I could be of more help.

I will tell you that I corresponded with a patient so long ago now that I have forgotten the name, but I do remember the circumstances.  The patient’s mother was in a hospital that was in the KP network.  The doctor in that particular hospital was not giving her mother the right kind of care.  The mother had Esophageal Cancer.  Kaiser would not give her a referral to go outside the network to get a second opinion, although there was another hospital close to that facility who did perform Minimally Invasive Esophagectomies.  After lodging an appeal, and demanding to get out from under this particular physician’s care, Kaiser agreed to pay for a second opinion outside the network.  Granted, that was most likely a rare exception.  But it paid off for her.

However, no doubt Kaiser will want you to select from their list of oncologists.  So this is the most help I can be.  While I know that Stage IV EC patient’s options are limited, it doesn’t mean that there aren’t treatments that can be given that will extend to them a good quality of life in the interim.  The traditional treatments are chemotherapy and radiation.  The doctor was right as far as he went, but he should have been more helpful.  The chemo will circulate throughout the body in search of cancerous cells, and the radiation is targeted directly at the tumor itself.  And of course, the definition of Stage IV is cancer that has spread to more than one major organ.

And by all means, you should seek a SECOND OPINION.  That’s a given, and most insurance companies will pay for a Second Opinion. 

I happen to have talked to a Stage IV EC patient that has been telling me she was diagnosed with Stage IV for over 4 years now, and she has only had a series of chemo treatments.  Yet today she tells me that she has been diagnosed as a Stage III patient with stomach cancer.  Go figure, so misdiagnoses are possible, and for peace of mind I ALWAYS RECOMMEND A SECOND OPINION.

Lastly, I do have letters that I saved in my files from the caregiver of a Stage IV caregiver.  Her name is Sherri.  Her husband was 48 when diagnosed and lived a good quality of life, even with his “IV” diagnoses.  She was diligent and so helpful when she was on this forum.  Even though she isn’t posting now, she has given me permission to share any of her writings that I deem appropriate for patients seeking help.  So below my name I will share her letter with you, and list additional references that should be helpful to start you on a more definitive search.  May you find the very best help possible for your father?

Loretta Marshall (Wife of William who was DX with Adenocarcinoma at the GE junction (EC T3N1M0) in 2002 and is now in his 14^th year of remission.  MIE surgery was performed at UPMC in Pittsburgh by Dr. James D. Luketich, pioneer of the Ivor Lewis Minimally Invasive Esophagectomy which is totally laparoscopic)

___________________________________________________________________________________________________________

Here is one of two letters from Sherri that I want to share with you.  Sherri and I are both alike in that “we tell it like it is” and hope the person reading it really wants to know the truth about this cancer.  Some are in denial, and will not accept what I say.  Others are realists and want to know all they can.  So you seem to be in the “realist” category, since you’re not satisfied with the first oncologist.  The statistics speak for themselves, but there are exceptions, but the American Cancer society will give you a link that tells about the survival by stages.  But at this point, you just want to know that you’ve “looked behind every bush” to find the very best help for your father.

                                               “FOR THE NEWLY DIAGNOSED

You are about to enter the roller coaster from Hell.  Unfortunately, you don't have time to feel sorry for yourselves.  You must move on to fight the beast.  Whether you are stage I or stage IV, only believe half of what is told and rely on your own knowledge of yourself or your loved one with the exception if you get a doctor who is upbeat and willing to go the extra mile for you.  Remember whatever they tell you is statistical, clinical or factual and that they don't know you as an individual.  Since coming on in June, I have read many stories whereas the patient or the spouse is afraid to confront the doctors or to get a second or even a third opinion.  I have also read where the caretaker is afraid to take control of the situation due to either fear or an uncooperative spouse or patient.

Remember to question everything and anything and if the doctor doesn't like this then find another.  Remember that you are the patient and that they are working for you.  Research everything and talk about it in your appointments.  Never be frightened to ask questions.  Even better is when you are with the Onco staff, Ask then whom I may call to get immediate answers.

Know your cancer!  Look up where it may metastasize to and be one step ahead with questions or clinical trials.  Don't hesitate to ask them about the HER2 Gene and has my tumor been tested?  Remember to ask about supplements that can help you while you are on chemo or radiation.  Ours allowed us to do what we wanted, especially for chemo-related neuropathy.

When you are first diagnosed, we sit there numb, dumbfounded, afraid, intimidated, shell-shocked and can't believe what we are hearing.  Well believe it quickly, take a few deep breaths and begin the fight.  The ones that delay treatment are the ones that suffer in the long run.  Don't dwell on “I should haves” or “I could haves,” it's too late for that.  Get going on the cure or the treatment. You can still lead a productive life.  Push yourself and DO NOT GIVE UP HOPE EVER!!!  Only God knows when it is your time.  Have faith in yourselves and know that you are not alone.  We are here to answer your questions to the best of our ability.  We have been through heartache.  We have lost loved ones dear to us.  We have cried together over someone we have never met.  We are a family and you may not like what we have to say but we care and have the experience.

You will meet people here that have experienced it all.  We have people that have been fighting for their lives all along but continue success. We have our “not-a-surgical-candidate” patients that have overcome their projected life spans and are doing well.  We have people that have had the surgery and have been cured or are in remission.  We have had many who have lost their loved ones but still come on to help others.  They share their experiences without a second thought.  Many give out their personal phone numbers to help some and others become great friends even though they have never met.  Just remember that you are in the right place and you will get honest, experienced answers from people who have walked in the shoes of Esophageal Cancer.

Good Luck and Best Wishes to all of you in your fight against esophageal cancer.  There will always be someone here to answer your questions the best they know how to.  Remember that we here have had success no matter how old you are.  Our goal is to beat it now or in the future by helping others.  You are never alone!

Sherri"_______________________________________________

                                                  Sherri's post - WHAT EVERY STAGE IVB PATIENT NEEDS TO KNOW

July 12, 2011 - 4:55pm

"Unfortunately stage IV's sometimes have limited resources at diagnosis. We are quite shell shocked at the news that we are hearing. We aren't equipped at that time to have gained the knowledge or the insight on the "Best Game Plan." Unfortunately, things need to happen and the need is NOW, immediately!

Most stage IV's already present with swallowing difficulties and weight loss. To have the best fighting chance, one cannot muster the strength without the proper nutrition.  Without the means to eat, a spiraling, downward effect will occur, dehydration.  You can ask any stage IV patient's caregiver here on what the downward trend in decline in health is.

Weight loss, dehydration, not wanting to eat, no appetite. When one is already dehydrated, then there will be no "wants to eat." They are struggling to get in anything under an already-reduced stomach. If by chance they can get in some food, then they will have no room for liquids. If they take in liquids, they will already have become full and will not want to eat.

Many wait on the J-tube saying, if I need it, then I'll get it later. But sometimes, later, they are already too weak to receive it and the damage has already been done. When Jim was diagnosed. He had already lost about 30 lbs. I insisted on that tube and with an esophageal stretch, he was then able to eat by mouth and by tube, taking in at least 6000 calories per day. He went from 172 to 198 lbs. in just under a couple of months.

The J-tube can also be used to ensure hydration, leaving the caregiver at peace knowing that their loved one is getting the proper balance of both nutrition and fluids.  In fact, medications can be crushed or ordered in liquids to be given in the enteral feeding bags.

 It is my opinion that stents should not be used unless it is a last resort for eating by mouth, but with that being said, I still would have a tube placed simultaneously. Just remember that at any given time, to ask for that esophageal stretch! The J-tube can be pulled out at any time.

Many stage IV's will hear at diagnosis that they are not radiation candidates. Remember that at stage IV, you will be treated palliatively. But you're in pain, radiation can then be used to reduce the pain. This is "Palliative" care.

Remember there are many tricks out there for gaining weight.  I, for one, do not recommend going the "Sugar" approach. Empty calories that fill you up in a short time but satisfies the hunger without really wanting to eat more. Eat good healthy foods, enriched with Whey protein. One can make soups, blenderize them and add Half and Half, and Whey to it.

 Lentils, cream of anything soups are great too. Carnation Instant Breakfast shakes, with added yogurt, fresh or frozen fruits, ice cream whey, etc...I even made pancakes with cream and I believe that the calories were almost double. Get a juicer and a pressure cooker. They worked wonders for me. And of course don't forget that magic bullet. Hydrate with sugar free popsicles and fudgesicles! Wanting to go out to eat, Panera was a great place for us. I would ask them to put in more cream or water for Jim's soups.

As you approach chemo. Yes, weight loss will probably occur. So you need to always stay one step ahead of the game. Take care of business before you start. Imodium, stool softeners, anti-nausea (Emend or Zofran) meds, magic mouthwash or melt tabs for taking on the dreaded thrush.

Keep a journal on the reactions experienced after the first dosage of chemo. We were able to pinpoint that on the Wednesday after chemo, Jim would get nauseous, diarrhea and vomit. We knew he would start the dehydration process. So on Tuesday, the next week, we started him up on anti-diarrhea meds, Zofran and IV hydration. In fact, we ordered the hydration for in-home use and I was able to set him up with it here for the duration. It worked wonders.

 Jim throughout his journey with EC cancer never had to be hospitalized once. His blood numbers were always up, never needed any blood nor Neulasta shots. This was all due to proper hydration.

As for supplements. We were given the go ahead to try everything and the kitchen sink. The one supplement that I feel is essential in a HIGH GRADE FISH OIL. I gave this to Jim three times per day. If they can't swallow, then pop the pill and add it to the J-tube or soup. It helps with Cachexia, cancer induced weight loss! Just recently I spoke with a woman at our local grocer whose husband had throat cancer. She stated he was given the all clear with the cancer but he was dying of weight loss. No appetite! So I told her about the fish oil and she said she would try. Three months later, she saw me in the store and came over to hug me. Her husband had gained almost 24 pounds and she knew it was the fish oil.

 Our hospital dietician told me to give it to Jim and I do credit this with Jim's ability to maintain weight. It is also great for the circulation system, skin and heart as well. Recently, I was told by my vet to give it to our three year old lab for eczema and allergies.

Don't forget that EXERCISE is very important. Just because you are diagnosed with stage IV, it doesn't mean to curl up in a bed or sit in a chair. Move, walk and exercise. Each day Jim and I would walk 3 miles. He would swim and when he no longer could do that due to bone mets, I bought him hand grips, hand weights and leg weights. An exercised body gets hungry!

As Jim’s cancer progressed, he never stopped the routines. By Jim's last days, he had metastasis to the choroid part of the eye, collar bone, multiple lymph nodes, three ribs, peritoneal cavity, celiac, esophagus, bones and we believe brain.  He said he was feeling great!

Hope this helps and remember that this is my opinion only. I am not a medical doctor, just an experienced Stage IV caregiver. Good Luck and may God Bless.

Sherri"

___________________________________________________________________

 1.  http://www.cancernet.co.uk/herceptin.htm

This is a good article describing the benefit of HER2 testing.  Some cancer patients have an “over-expressive” oncogene that causes the cell to multiply more rapidly.  FDA has approved Herceptin here for both breast and Esophageal cancer patients.  Originally, it was first approved for BC patients, but then it was noted that EC patients were also exhibiting the same over-expressive gene as well.  So often doctors are not testing the patient to see if they are HER2 positive.  So be sure to ask that your father be tested for HER2+. 

Here is an excerpt from the link above:

“…Each HER2 gene results in the expression of a receptor on the surface of the cell. If the gene makes too much receptor, it is referred to as being "over expressed".  Cells that over express too much of the HER2 gene can be a specific target for therapies such as Herceptin. Technology now exists to make antibodies in the laboratory called monoclonal antibodies. Specific antibodies have been made to detect and attach to the HER2 receptors. The antibody is therefore known as anti-HER2 called trastuzumab or its commercial name Herceptin.

How does Herceptin work?Herceptin works in a different way than standard cancer therapy, such as chemotherapy or hormone therapies. Herceptin® (Trastuzumab) is believed to function in three main ways:

1) Blocking tumour cell growth: Herceptin binds to the HER2 (receptors) on the tumour cell surface and this stops the receptor signalling the  cell to grow and divide.

2) Signalling of the immune system:  Certain immune system cells, called natural killer (NK) cells, attach to Herceptin when it is bound to the tumour cells. The NK cells then detect an abnormality, and kill the tumour cell.

3) Working with chemotherapy:  Herceptin and chemotherapy work in different ways, but when given together, the two drugs can form a partnership (synergy) so kill tumour cells more effectively than either Herceptin or chemotherapy when given alone…”

____________________________________________________________

2.  http://news.cancerconnect.com/types-of-cancer/esophageal-cancer/

A thorough explanation of Esophageal cancer, stages and treatment can be found here. 

_____________________________________________________________

3.  https://healthy.kaiserpermanente.org/care/doctors-locations/?kp_shortcut_referrer=kp.org/finddoctors#/search

Since you are in CA, you will be able to identify with this map containing locations of health care facilities that Kaiser Permanente utilizes

_______________________________________________________________________

4.  http://www.cancer.org/cancer/esophaguscancer/detailedguide/esophagus-cancer-treating-general-info 

________________________________________________________

5.  http://www.cancer.org/cancer/esophaguscancer/index

Research different aspects of how Esophageal cancer is diagnosed and treated

_______________________________________________________________________

 6.  http://www.cancer.org/cancer/esophaguscancer/detailedguide/esophagus-cancer-treating-by-stage

Treating Esophageal by Stage ~

                                                Stage IV

Stage IV esophageal cancer has spread to distant lymph nodes or to other distant organs.

In general, these cancers are very hard to get rid of completely, so surgery to try to cure the cancer is usually not a good option. Treatment is used mainly to help keep the cancer under control for as long as possible and to relieve any symptoms it is causing.

Chemo may be given (possibly along with the targeted drug trastuzumab if the cancer is HER2 positive) to try to help patients feel better and live longer, but the benefit of giving chemo is not clear. Radiation therapy or other treatments may be used to help with pain or trouble swallowing.

For cancers that started at the gastroesophageal (GE) junction, treatment with the targeted drug ramucirumab (Cyramza) may be an option at some point. It can be given by itself or combined with chemo.

Some people prefer not to have treatments that have serious side effects and choose to receive only treatments that will help keep them comfortable and add to their quality of life. For more information on treatments that may be helpful, see “Palliative therapy for cancer of the esophagus.”

Last Medical Review: 03/20/2014
Last Revised: 02/04/2016”

_________________________________________________________________________

7.  http://www.cancer.org/cancer/esophaguscancer/detailedguide/esophagus-cancer-treating-palliative-therapy

Palliative therapy for cancer of the esophagus

“Palliative therapy is treatment aimed at preventing or relieving symptoms instead of trying to cure the cancer. The main purpose of this type of treatment is to improve the patient’s comfort and quality of life.

Several types of treatment can be used to help prevent or relieve symptoms of esophageal cancer. In some cases, they are given along with other treatments that are intended to cure the cancer. In other cases, palliative treatments are given when a cure is not possible…”

__________________________________________________________________________

8.  http://www.vitals.com/locations/oncologists/ca

Find oncologists in California (CA) by City

__________________________________________________________________________

9.  http://www.vitals.com/

I’ve used this site frequently to check up on physician’s credentials.  I find it very helpful, and perhaps it can help you to make an intelligent informed decision as to where your father can best be treated.

1o.  http://www.forbes.com/sites/techonomy/2015/07/09/vitals-aims-to-be-the-priceline-of-american-healthcare/#5f367b612767

“…To arm people with knowledge to help them make sound medical-care decisions, Vitals first mapped the U.S. healthcare system, creating a taxonomy of hospitals and medical-care providers. It pulled data from state and federal databases—such as those at the Centers for Medicare and Medicaid Services and the Centers for Disease Control and Prevention, lists such as New York Magazine’s annual ranking of top doctors, and a host of other sources…”

_____________________________End of references____________________

 

Deathorglory

Hello

Hello,

Surgery isn't a real option for stage IV, but that radiation is considereed an option for you is a positive.  Hopefully means that although the cancer has metastasized, it is still contained enough for radiation.  When I had a stage IV recurrence of the EC I was told that surgery & radiation weren't options because it was on the loose.  I was given 7-8 months as a prognosis and told to put my affairs into order sooner, not later.  This was in late 2011, just a few months after herceptin was approved to treat stage IV EC where the patient was HER2+.  I strongly suggest that you INSIST that your father be tested for this.  If he tests positive, it means that he has a particularly aggressive form of EC, but it means that there is a powerful tool to be used against it.  Even today, many folks are at hospitals that don't know enough or care enough to do this simple test.  I can't promise it'll work for your dad, but it worked wonders for me.

Since surgery isn't likely to be part of your father's plan, looking for a top quality oncologist is your best bet.  I don't know where you are, but I'd suggest at a minimum looking for a hospital that is NCI designated.  It's not much, but it's sort of a seal of quality in cancer centers.

Best wishes,

Ed

vg91680

Deathorglory said:

Hello

Hello,

Surgery isn't a real option for stage IV, but that radiation is considereed an option for you is a positive.  Hopefully means that although the cancer has metastasized, it is still contained enough for radiation.  When I had a stage IV recurrence of the EC I was told that surgery & radiation weren't options because it was on the loose.  I was given 7-8 months as a prognosis and told to put my affairs into order sooner, not later.  This was in late 2011, just a few months after herceptin was approved to treat stage IV EC where the patient was HER2+.  I strongly suggest that you INSIST that your father be tested for this.  If he tests positive, it means that he has a particularly aggressive form of EC, but it means that there is a powerful tool to be used against it.  Even today, many folks are at hospitals that don't know enough or care enough to do this simple test.  I can't promise it'll work for your dad, but it worked wonders for me.

Since surgery isn't likely to be part of your father's plan, looking for a top quality oncologist is your best bet.  I don't know where you are, but I'd suggest at a minimum looking for a hospital that is NCI designated.  It's not much, but it's sort of a seal of quality in cancer centers.

Best wishes,

Ed

Thank you very much for the

Thank you very much for the helpful information and giving me a little more hope.  My father will appreciate it very much.  This is all very new to us.  I have never been around anyone fighting against cancer and it is good to have people like you helping others.  

vg91680

LorettaMarshall said:

vg91680~Hope some of this info helps 2 find a good oncologist

Hello “vg”

Sounds like your dad’s doctor has forgotten that each patient is an “individual”.  His attitude seems “cut and dried”, and I would certainly seek a second opinion.  The very least he could have done was provide you with a basic guide as to how Stage IV Esophageal Cancer patients are normally treated.  All of us here know how devastating a diagnosis of cancer is at any stage, but obviously the lesser the stage, the more options and possibilities there are for successful treatments. 

Below are some references to help you get started on familiarizing yourself with options, questions, etc.  I have found the web to be valuable in researching any type of cancer, but you must be careful to deal only with reputable sources.  I don’t get sidelined by “quackery”—life’s too short for that.

I will tell you that there is one excellent doctor, Dr. Ninh Nguyen who operates out of UC-Irvine in Orange California.  He is a young Vietnamese thoracic surgeon who served with Dr. James D. Luketich in the mid 1990’s when the Ivor Lewis Minimally Invasive Esophagectomy was in its infancy.  The procedure is called “MIE” for short.  It is totally laparoscopic and offers the best options for patients that qualify as “surgical patients.”  That is about the extent of what I know about CA.

Now I know that options are limited for Stage IV.  In that category the cancer has already metastasized to another major organ, so that Esophagectomies are not performed.  However, depending on the condition and age of the patient, and taking into consideration other health conditions, an individualized treatment plan can be worked up for that particular Stage IV patient.

I’ve checked out Vitals.com info on Dr. Ninh Nguyen, and I do not see Kaiser listed as one of the insurances he accepts.  However, his phone number and address are listed as:  http://www.vitals.com/doctors/Dr_Ninh_T_Nguyen/office-locations

12595 Hesperia Rd
Victorville, CA 92395
760-269-3099

Might I suggest that you contact Dr. Nguyen’s office, and explain that your father has been diagnosed with EC Stage IV?  That could be a start.  You could simply ask if he accepts Kaiser Permanente?  It isn’t in the list, but you could then ask if he can recommend a competent oncologist in your particular area.  Not being familiar with “Northern California”, I have no idea of what city you live in, so that’s why I suggested Dr. Nguyen’s office as a good place to start.  Doctors often communicate with one another and “know” the good ones as well one much like your first oncologist who didn’t even give you any information on your father’s cancer.

I feel certain that a call placed there, could guide you to a good oncologist near where your father lives.  It doesn’t hurt to call.  I’ve talked to his nurse before for other patients and I find them extremely kind.  So that is my only suggestion.  I wish I could be of more help.

I will tell you that I corresponded with a patient so long ago now that I have forgotten the name, but I do remember the circumstances.  The patient’s mother was in a hospital that was in the KP network.  The doctor in that particular hospital was not giving her mother the right kind of care.  The mother had Esophageal Cancer.  Kaiser would not give her a referral to go outside the network to get a second opinion, although there was another hospital close to that facility who did perform Minimally Invasive Esophagectomies.  After lodging an appeal, and demanding to get out from under this particular physician’s care, Kaiser agreed to pay for a second opinion outside the network.  Granted, that was most likely a rare exception.  But it paid off for her.

However, no doubt Kaiser will want you to select from their list of oncologists.  So this is the most help I can be.  While I know that Stage IV EC patient’s options are limited, it doesn’t mean that there aren’t treatments that can be given that will extend to them a good quality of life in the interim.  The traditional treatments are chemotherapy and radiation.  The doctor was right as far as he went, but he should have been more helpful.  The chemo will circulate throughout the body in search of cancerous cells, and the radiation is targeted directly at the tumor itself.  And of course, the definition of Stage IV is cancer that has spread to more than one major organ.

And by all means, you should seek a SECOND OPINION.  That’s a given, and most insurance companies will pay for a Second Opinion. 

I happen to have talked to a Stage IV EC patient that has been telling me she was diagnosed with Stage IV for over 4 years now, and she has only had a series of chemo treatments.  Yet today she tells me that she has been diagnosed as a Stage III patient with stomach cancer.  Go figure, so misdiagnoses are possible, and for peace of mind I ALWAYS RECOMMEND A SECOND OPINION.

Lastly, I do have letters that I saved in my files from the caregiver of a Stage IV caregiver.  Her name is Sherri.  Her husband was 48 when diagnosed and lived a good quality of life, even with his “IV” diagnoses.  She was diligent and so helpful when she was on this forum.  Even though she isn’t posting now, she has given me permission to share any of her writings that I deem appropriate for patients seeking help.  So below my name I will share her letter with you, and list additional references that should be helpful to start you on a more definitive search.  May you find the very best help possible for your father?

Loretta Marshall (Wife of William who was DX with Adenocarcinoma at the GE junction (EC T3N1M0) in 2002 and is now in his 14^th year of remission.  MIE surgery was performed at UPMC in Pittsburgh by Dr. James D. Luketich, pioneer of the Ivor Lewis Minimally Invasive Esophagectomy which is totally laparoscopic)

___________________________________________________________________________________________________________

Here is one of two letters from Sherri that I want to share with you.  Sherri and I are both alike in that “we tell it like it is” and hope the person reading it really wants to know the truth about this cancer.  Some are in denial, and will not accept what I say.  Others are realists and want to know all they can.  So you seem to be in the “realist” category, since you’re not satisfied with the first oncologist.  The statistics speak for themselves, but there are exceptions, but the American Cancer society will give you a link that tells about the survival by stages.  But at this point, you just want to know that you’ve “looked behind every bush” to find the very best help for your father.

                                               “FOR THE NEWLY DIAGNOSED

You are about to enter the roller coaster from Hell.  Unfortunately, you don't have time to feel sorry for yourselves.  You must move on to fight the beast.  Whether you are stage I or stage IV, only believe half of what is told and rely on your own knowledge of yourself or your loved one with the exception if you get a doctor who is upbeat and willing to go the extra mile for you.  Remember whatever they tell you is statistical, clinical or factual and that they don't know you as an individual.  Since coming on in June, I have read many stories whereas the patient or the spouse is afraid to confront the doctors or to get a second or even a third opinion.  I have also read where the caretaker is afraid to take control of the situation due to either fear or an uncooperative spouse or patient.

Remember to question everything and anything and if the doctor doesn't like this then find another.  Remember that you are the patient and that they are working for you.  Research everything and talk about it in your appointments.  Never be frightened to ask questions.  Even better is when you are with the Onco staff, Ask then whom I may call to get immediate answers.

Know your cancer!  Look up where it may metastasize to and be one step ahead with questions or clinical trials.  Don't hesitate to ask them about the HER2 Gene and has my tumor been tested?  Remember to ask about supplements that can help you while you are on chemo or radiation.  Ours allowed us to do what we wanted, especially for chemo-related neuropathy.

When you are first diagnosed, we sit there numb, dumbfounded, afraid, intimidated, shell-shocked and can't believe what we are hearing.  Well believe it quickly, take a few deep breaths and begin the fight.  The ones that delay treatment are the ones that suffer in the long run.  Don't dwell on “I should haves” or “I could haves,” it's too late for that.  Get going on the cure or the treatment. You can still lead a productive life.  Push yourself and DO NOT GIVE UP HOPE EVER!!!  Only God knows when it is your time.  Have faith in yourselves and know that you are not alone.  We are here to answer your questions to the best of our ability.  We have been through heartache.  We have lost loved ones dear to us.  We have cried together over someone we have never met.  We are a family and you may not like what we have to say but we care and have the experience.

You will meet people here that have experienced it all.  We have people that have been fighting for their lives all along but continue success. We have our “not-a-surgical-candidate” patients that have overcome their projected life spans and are doing well.  We have people that have had the surgery and have been cured or are in remission.  We have had many who have lost their loved ones but still come on to help others.  They share their experiences without a second thought.  Many give out their personal phone numbers to help some and others become great friends even though they have never met.  Just remember that you are in the right place and you will get honest, experienced answers from people who have walked in the shoes of Esophageal Cancer.

Good Luck and Best Wishes to all of you in your fight against esophageal cancer.  There will always be someone here to answer your questions the best they know how to.  Remember that we here have had success no matter how old you are.  Our goal is to beat it now or in the future by helping others.  You are never alone!

Sherri"_______________________________________________

                                                  Sherri's post - WHAT EVERY STAGE IVB PATIENT NEEDS TO KNOW

July 12, 2011 - 4:55pm

"Unfortunately stage IV's sometimes have limited resources at diagnosis. We are quite shell shocked at the news that we are hearing. We aren't equipped at that time to have gained the knowledge or the insight on the "Best Game Plan." Unfortunately, things need to happen and the need is NOW, immediately!

Most stage IV's already present with swallowing difficulties and weight loss. To have the best fighting chance, one cannot muster the strength without the proper nutrition.  Without the means to eat, a spiraling, downward effect will occur, dehydration.  You can ask any stage IV patient's caregiver here on what the downward trend in decline in health is.

Weight loss, dehydration, not wanting to eat, no appetite. When one is already dehydrated, then there will be no "wants to eat." They are struggling to get in anything under an already-reduced stomach. If by chance they can get in some food, then they will have no room for liquids. If they take in liquids, they will already have become full and will not want to eat.

Many wait on the J-tube saying, if I need it, then I'll get it later. But sometimes, later, they are already too weak to receive it and the damage has already been done. When Jim was diagnosed. He had already lost about 30 lbs. I insisted on that tube and with an esophageal stretch, he was then able to eat by mouth and by tube, taking in at least 6000 calories per day. He went from 172 to 198 lbs. in just under a couple of months.

The J-tube can also be used to ensure hydration, leaving the caregiver at peace knowing that their loved one is getting the proper balance of both nutrition and fluids.  In fact, medications can be crushed or ordered in liquids to be given in the enteral feeding bags.

 It is my opinion that stents should not be used unless it is a last resort for eating by mouth, but with that being said, I still would have a tube placed simultaneously. Just remember that at any given time, to ask for that esophageal stretch! The J-tube can be pulled out at any time.

Many stage IV's will hear at diagnosis that they are not radiation candidates. Remember that at stage IV, you will be treated palliatively. But you're in pain, radiation can then be used to reduce the pain. This is "Palliative" care.

Remember there are many tricks out there for gaining weight.  I, for one, do not recommend going the "Sugar" approach. Empty calories that fill you up in a short time but satisfies the hunger without really wanting to eat more. Eat good healthy foods, enriched with Whey protein. One can make soups, blenderize them and add Half and Half, and Whey to it.

 Lentils, cream of anything soups are great too. Carnation Instant Breakfast shakes, with added yogurt, fresh or frozen fruits, ice cream whey, etc...I even made pancakes with cream and I believe that the calories were almost double. Get a juicer and a pressure cooker. They worked wonders for me. And of course don't forget that magic bullet. Hydrate with sugar free popsicles and fudgesicles! Wanting to go out to eat, Panera was a great place for us. I would ask them to put in more cream or water for Jim's soups.

As you approach chemo. Yes, weight loss will probably occur. So you need to always stay one step ahead of the game. Take care of business before you start. Imodium, stool softeners, anti-nausea (Emend or Zofran) meds, magic mouthwash or melt tabs for taking on the dreaded thrush.

Keep a journal on the reactions experienced after the first dosage of chemo. We were able to pinpoint that on the Wednesday after chemo, Jim would get nauseous, diarrhea and vomit. We knew he would start the dehydration process. So on Tuesday, the next week, we started him up on anti-diarrhea meds, Zofran and IV hydration. In fact, we ordered the hydration for in-home use and I was able to set him up with it here for the duration. It worked wonders.

 Jim throughout his journey with EC cancer never had to be hospitalized once. His blood numbers were always up, never needed any blood nor Neulasta shots. This was all due to proper hydration.

As for supplements. We were given the go ahead to try everything and the kitchen sink. The one supplement that I feel is essential in a HIGH GRADE FISH OIL. I gave this to Jim three times per day. If they can't swallow, then pop the pill and add it to the J-tube or soup. It helps with Cachexia, cancer induced weight loss! Just recently I spoke with a woman at our local grocer whose husband had throat cancer. She stated he was given the all clear with the cancer but he was dying of weight loss. No appetite! So I told her about the fish oil and she said she would try. Three months later, she saw me in the store and came over to hug me. Her husband had gained almost 24 pounds and she knew it was the fish oil.

 Our hospital dietician told me to give it to Jim and I do credit this with Jim's ability to maintain weight. It is also great for the circulation system, skin and heart as well. Recently, I was told by my vet to give it to our three year old lab for eczema and allergies.

Don't forget that EXERCISE is very important. Just because you are diagnosed with stage IV, it doesn't mean to curl up in a bed or sit in a chair. Move, walk and exercise. Each day Jim and I would walk 3 miles. He would swim and when he no longer could do that due to bone mets, I bought him hand grips, hand weights and leg weights. An exercised body gets hungry!

As Jim’s cancer progressed, he never stopped the routines. By Jim's last days, he had metastasis to the choroid part of the eye, collar bone, multiple lymph nodes, three ribs, peritoneal cavity, celiac, esophagus, bones and we believe brain.  He said he was feeling great!

Hope this helps and remember that this is my opinion only. I am not a medical doctor, just an experienced Stage IV caregiver. Good Luck and may God Bless.

Sherri"

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 1.  http://www.cancernet.co.uk/herceptin.htm

This is a good article describing the benefit of HER2 testing.  Some cancer patients have an “over-expressive” oncogene that causes the cell to multiply more rapidly.  FDA has approved Herceptin here for both breast and Esophageal cancer patients.  Originally, it was first approved for BC patients, but then it was noted that EC patients were also exhibiting the same over-expressive gene as well.  So often doctors are not testing the patient to see if they are HER2 positive.  So be sure to ask that your father be tested for HER2+. 

Here is an excerpt from the link above:

“…Each HER2 gene results in the expression of a receptor on the surface of the cell. If the gene makes too much receptor, it is referred to as being "over expressed".  Cells that over express too much of the HER2 gene can be a specific target for therapies such as Herceptin. Technology now exists to make antibodies in the laboratory called monoclonal antibodies. Specific antibodies have been made to detect and attach to the HER2 receptors. The antibody is therefore known as anti-HER2 called trastuzumab or its commercial name Herceptin.

How does Herceptin work?Herceptin works in a different way than standard cancer therapy, such as chemotherapy or hormone therapies. Herceptin® (Trastuzumab) is believed to function in three main ways:

1) Blocking tumour cell growth: Herceptin binds to the HER2 (receptors) on the tumour cell surface and this stops the receptor signalling the  cell to grow and divide.

2) Signalling of the immune system:  Certain immune system cells, called natural killer (NK) cells, attach to Herceptin when it is bound to the tumour cells. The NK cells then detect an abnormality, and kill the tumour cell.

3) Working with chemotherapy:  Herceptin and chemotherapy work in different ways, but when given together, the two drugs can form a partnership (synergy) so kill tumour cells more effectively than either Herceptin or chemotherapy when given alone…”

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2.  http://news.cancerconnect.com/types-of-cancer/esophageal-cancer/

A thorough explanation of Esophageal cancer, stages and treatment can be found here. 

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3.  https://healthy.kaiserpermanente.org/care/doctors-locations/?kp_shortcut_referrer=kp.org/finddoctors#/search

Since you are in CA, you will be able to identify with this map containing locations of health care facilities that Kaiser Permanente utilizes

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4.  http://www.cancer.org/cancer/esophaguscancer/detailedguide/esophagus-cancer-treating-general-info 

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5.  http://www.cancer.org/cancer/esophaguscancer/index

Research different aspects of how Esophageal cancer is diagnosed and treated

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 6.  http://www.cancer.org/cancer/esophaguscancer/detailedguide/esophagus-cancer-treating-by-stage

Treating Esophageal by Stage ~

                                                Stage IV

Stage IV esophageal cancer has spread to distant lymph nodes or to other distant organs.

In general, these cancers are very hard to get rid of completely, so surgery to try to cure the cancer is usually not a good option. Treatment is used mainly to help keep the cancer under control for as long as possible and to relieve any symptoms it is causing.

Chemo may be given (possibly along with the targeted drug trastuzumab if the cancer is HER2 positive) to try to help patients feel better and live longer, but the benefit of giving chemo is not clear. Radiation therapy or other treatments may be used to help with pain or trouble swallowing.

For cancers that started at the gastroesophageal (GE) junction, treatment with the targeted drug ramucirumab (Cyramza) may be an option at some point. It can be given by itself or combined with chemo.

Some people prefer not to have treatments that have serious side effects and choose to receive only treatments that will help keep them comfortable and add to their quality of life. For more information on treatments that may be helpful, see “Palliative therapy for cancer of the esophagus.”

Last Medical Review: 03/20/2014
Last Revised: 02/04/2016”

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7.  http://www.cancer.org/cancer/esophaguscancer/detailedguide/esophagus-cancer-treating-palliative-therapy

Palliative therapy for cancer of the esophagus

“Palliative therapy is treatment aimed at preventing or relieving symptoms instead of trying to cure the cancer. The main purpose of this type of treatment is to improve the patient’s comfort and quality of life.

Several types of treatment can be used to help prevent or relieve symptoms of esophageal cancer. In some cases, they are given along with other treatments that are intended to cure the cancer. In other cases, palliative treatments are given when a cure is not possible…”

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8.  http://www.vitals.com/locations/oncologists/ca

Find oncologists in California (CA) by City

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9.  http://www.vitals.com/

I’ve used this site frequently to check up on physician’s credentials.  I find it very helpful, and perhaps it can help you to make an intelligent informed decision as to where your father can best be treated.

1o.  http://www.forbes.com/sites/techonomy/2015/07/09/vitals-aims-to-be-the-priceline-of-american-healthcare/#5f367b612767

“…To arm people with knowledge to help them make sound medical-care decisions, Vitals first mapped the U.S. healthcare system, creating a taxonomy of hospitals and medical-care providers. It pulled data from state and federal databases—such as those at the Centers for Medicare and Medicaid Services and the Centers for Disease Control and Prevention, lists such as New York Magazine’s annual ranking of top doctors, and a host of other sources…”

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Good evening Loretta.  Thank

Good evening Loretta.  Thank you very much for all of your time and resources.  I appreciate it very much.  I will be sharing this information with my father and step mother and we are going to fight back as much as possible.  It is wonderful to have people like you taking time helping others who are new to this.  Thank you for taking the time to respond.