My dad was diagnosed with EC stage 2 - need your opinion

juliamaz

Hello All,

My name is Julia Mazurova. My dear dad Aleksandr Mazurov has recently been diagnosed with esophagus cancer stage 2 T2N1M0. He is 58 years old. He is in South Korea now and started on his treatment yesterday. He was prescribed 6 weeks of combo radiation and chemo. Radiation for 25 days and dosage is 45 grams, if it will not work then another 8 times can be performed for 15 grams dosage. Chemo is Cisplatin and 5FU for 5 days then 2 weeks gap then another 5 days thru the port they installed. After 6 weeks of treatment they will do scans again to see how his body reacted and if cancer shrink and they will make a decision on surgery. I am so worried but the only way I can help him now is to try find money to cover his treatment and make sure I understand every single move they are performing.

I just wanted to ask if you think the treatment plan seems reasonable to you guys?

Here is our story:

My dad lives in Russia and if we choose to treat him there he would be placed on the waiting list to await his turn. There is a waiting time for everything in Russia: to get an appointment with doctors, to get images done, to have a surgery. The waiting time can last months! Russian hospitals offer chemotherapy with “chemo” produced in Russia but the doctors suggest to buy the “better chemo” abroad. To put it in perspective, the quality and accuracy of the medical system in Russia, the biopsy that was performed in Russian hospital was negative for cancer. Based on all research and findings we believe the positive result will come only if we choose to treat him abroad. The South Korea seems to be our best bet! We decided on South Korea hospital because my dad already traveled there to get all of his correct tests done and we received a treatment plan from the hospital and they are ready to accept him. Also South Korea is close to my home town and it will be easier for my parents to travel there.

Although it would be ideal and it devastates me that it is not a viable option, I cannot bring my dad here to the US and get a medical insurance for him. The family reunion process will take about 1 year and we do not have this time. The US hospitals will not admit him or treat him without the medical insurance or without an upfront cash payment that would be 10 times more than the treatment in South Korea.

The only possible way I can help my dad is to raise money to pay for his treatment and surgery in South Korea. The whole treatment (chemo, radiation) and surgery will cost us $200K. I am an only child and trying my best to help my mom to raise the money. I already sent them all my savings, actively trying to apply for personal loans and various credit cards as much as possible here in the US to try to find as much and as quickly as possible. My mom is doing the same to get loans in Russia but the clock is against us!

I did not see my dad for 4 years but he is always in my prayers. I believe in God and that everything is possible through him. I believe my dad will recover and I and my son will see him again

LorettaMarshall

Julia~Agree w/U SKorea is best option~Hope that will B possible

Dear Julia,

Based on the costs here in America, I would say that the "whole" treatment of $200K is a good deal.  Now I'm a Stage IV Ovarian Cancer patient.  One of my radiation treatments (Cyberknife) for 3 cancerous nodes on the Caudate lobe of my Liver was $343,000.  Thankfully I pay a lot for my insurance policy, but it has paid off many times over.  The prospects for a successful surgery, in my opinion, are definitely in S. Korea.  Once a person has been diagnosed, treatment should be started ASAP.  Clinical trials have shown that those patients who follow the pattern that has been laid out for your father proves to be the most successful.  That includes pre-op chemo/radiation and surgery.  And a Stage II diagnosis is better than Stage III or IV.  For Stage IV only palliative treatments are prescribed most often.

This is one time that being an "only child" is not advantageous because I'm sure that if you have more brothers and/or sisters that "collectively" you could come up with the needed money.

You say you live in America.  I know that there are people that participate in a "GO FUND ME" site.  Often there are people there with needs that they cannot meet.  And others who read the site, often are very generous in their donations.  Do you have a church family?  If ever one needed to show "brotherly love", seems to me now is the time.  So keep praying that God will open a door for your dad.  He needs to be treated NOW.  

Praying that God will guide you to find a way.  You've certainly "given it your all!"  

Love & prayers,

Loretta (Wife of William Marshall) who was diagnosed "Adenocarcinoma at the Gastroesophageal Junction", Stage III, T3N1M0 back in 2002 at the age of 65.  He had pre-op chemo/radiation and then surgery at the University of Pittsburgh Med. Ctr. on May 17, 2003.  Dr. James D. Luketich, the pioneer of the Ivor Lewis Minimallly Invasive Esophagectomy (MIE) performed the surgery.  Thank God, William is now into his 16th year of survival with no complications and still cancer free! 

 

Deathorglory

Hello Julia

Hello Julia,

You have such bad news to report.  I feel sad for you & your family.  There is a little bit of a bright spot, though.  Your father is stage II, which is a fight that can be won.  There are many folks on here who successfully fought stage III and a few (myself included) who have beaten back stage IV EC.  Not that any cancer is good, but it is a good thing that your father's is in an early stage.  That is at least a fair fight and he can win it.  EC doesn't usually fight fair.  It is frequently not diagnosed until the later stages.  

You ask if his treatment plan seems reasonable.  I think it does.  While the ideal situation might be to get him to the Mayo Clinic or somewhere comparable, you guys are doing the best you can do with the limitations you have.  Chemo/radiation followed by esophajectomy is the standard of care here in the US, and if he's receiving that same standard of care in Korea, then you're doing well.  I think you can sleep well knowing that you are doing everything possible to help your father.

Best Wishes,

Ed

juliamaz

LorettaMarshall said:

Julia~Agree w/U SKorea is best option~Hope that will B possible

Dear Julia,

Based on the costs here in America, I would say that the "whole" treatment of $200K is a good deal.  Now I'm a Stage IV Ovarian Cancer patient.  One of my radiation treatments (Cyberknife) for 3 cancerous nodes on the Caudate lobe of my Liver was $343,000.  Thankfully I pay a lot for my insurance policy, but it has paid off many times over.  The prospects for a successful surgery, in my opinion, are definitely in S. Korea.  Once a person has been diagnosed, treatment should be started ASAP.  Clinical trials have shown that those patients who follow the pattern that has been laid out for your father proves to be the most successful.  That includes pre-op chemo/radiation and surgery.  And a Stage II diagnosis is better than Stage III or IV.  For Stage IV only palliative treatments are prescribed most often.

This is one time that being an "only child" is not advantageous because I'm sure that if you have more brothers and/or sisters that "collectively" you could come up with the needed money.

You say you live in America.  I know that there are people that participate in a "GO FUND ME" site.  Often there are people there with needs that they cannot meet.  And others who read the site, often are very generous in their donations.  Do you have a church family?  If ever one needed to show "brotherly love", seems to me now is the time.  So keep praying that God will open a door for your dad.  He needs to be treated NOW.  

Praying that God will guide you to find a way.  You've certainly "given it your all!"  

Love & prayers,

Loretta (Wife of William Marshall) who was diagnosed "Adenocarcinoma at the Gastroesophageal Junction", Stage III, T3N1M0 back in 2002 at the age of 65.  He had pre-op chemo/radiation and then surgery at the University of Pittsburgh Med. Ctr. on May 17, 2003.  Dr. James D. Luketich, the pioneer of the Ivor Lewis Minimallly Invasive Esophagectomy (MIE) performed the surgery.  Thank God, William is now into his 16th year of survival with no complications and still cancer free! 

 

Thank you!

Dear Loretta,  I am so grateful and thankful for all your time and support. I believe I am getting support from you that I would not be able to get from any other person. Grateful forever! You are such a strong and inspiration person to me, even though you are still going thru your recovery and diagnosis you have will to help other people in need! I am very impressed how well you know the topic! Thank you endless!

 

juliamaz

Deathorglory said:

Hello Julia

Hello Julia,

You have such bad news to report.  I feel sad for you & your family.  There is a little bit of a bright spot, though.  Your father is stage II, which is a fight that can be won.  There are many folks on here who successfully fought stage III and a few (myself included) who have beaten back stage IV EC.  Not that any cancer is good, but it is a good thing that your father's is in an early stage.  That is at least a fair fight and he can win it.  EC doesn't usually fight fair.  It is frequently not diagnosed until the later stages.  

You ask if his treatment plan seems reasonable.  I think it does.  While the ideal situation might be to get him to the Mayo Clinic or somewhere comparable, you guys are doing the best you can do with the limitations you have.  Chemo/radiation followed by esophajectomy is the standard of care here in the US, and if he's receiving that same standard of care in Korea, then you're doing well.  I think you can sleep well knowing that you are doing everything possible to help your father.

Best Wishes,

Ed

Thank you!

Dear Ed, thank you so much for your kind words! I am very happy to hear your opinion and more happier that the treatment plan sounds resonable to you as well! God bless you and your family!

 

juliamaz

no surgery needed - is it even an option?

Hello Loretta and Ed, 

I was taking to translator who helps my dad in Korea and he said he was talking to oncologist who prescribed chemo and radiation and oncologist said that surgery might be not needed. I got surprise and upset and asked why would they think so. So translator said that they believe that result with surgery or without surgery will be the same. Just to note that we did not talk with surgeon yet and we have to wait until my dad is done with his 6 weeks treatment. I just wanted to ask if you ever heard that they would choose not to perform surgery with stage 2 and what is the survival chance. 

LorettaMarshall

juliamaz said:

no surgery needed - is it even an option?

Hello Loretta and Ed, 

I was taking to translator who helps my dad in Korea and he said he was talking to oncologist who prescribed chemo and radiation and oncologist said that surgery might be not needed. I got surprise and upset and asked why would they think so. So translator said that they believe that result with surgery or without surgery will be the same. Just to note that we did not talk with surgeon yet and we have to wait until my dad is done with his 6 weeks treatment. I just wanted to ask if you ever heard that they would choose not to perform surgery with stage 2 and what is the survival chance. 

Julia~Educate yourself so U know what options are best 4 Dad!

My Dear Julia –

Recently we have read of a “few” newbies who are wondering if they should have the surgery if their primary chemotherapy & radiation indicates that scans performed after completion of the recommended chemo and radiation indicate eradication of the tumors.  Multiple clinical trials have shown that the tri-modality regimen, that being chemo/radiation/surgery is proven to be the most successful for those diagnosed with Esophageal Cancer.  Only very recently have I seen anyone writing here and saying they are thinking about just skipping the surgery.  Some have said, they aren’t willing to forego their state of health.  Let it be known that we are NOT really in control of our bodies once we’ve been diagnosed with Esophageal cancer. 

My husband and I have discussed this with one prestigious thoracic surgeon here and our oncologist.  Both agree that it is best to have the surgery after the initial treatment for this reason.  Sometimes tumors are not detected by the scans and only show up during the actual surgery.  My oncologist and I discussed this only in the last two weeks.  He just shook his head in a negative fashion when I told him that recently some were opting to not have the surgery.  I’m in total agreement with one of our well-respected local Thoracic Surgeons and also my oncologist that it would be most UNWISE to forego surgery, given the propensity for metastasis.

And on another note, in other instances, it seems that of the lymph nodes removed for pathological analysis during an esophagectomy, some patients have tested positive for residual cancer.  In those instances, here-to-fore adjuvant (after surgery) chemo has been prescribed as a “mop-up” operation to eliminate the possibility of further metastasis.

However, it seems that some recent patients who had residual cancer in some of their lymph nodes after surgery are saying—no more chemo for me.  However, my personal thoughts are these given the hundreds of stories I’ve read since reading this forum for now 15 years.  What makes a person think that the cancer cell isn’t going to continue to proliferate?  After all, at some undetectable point in the beginning of that person’s primary cancer, a cell decided “to go rogue” and do its own thing.  And then that one cell decided to divide, making 2.  Then those 2 cells divided and suddenly there were 4.  Then those 4 divide and suddenly you have a family of 8 doing their own thing.  So “on and on they go, and where they stop, nobody knows.”  So if I were given a choice, surgery or no surgery, I would ALWAYS opt for surgery. 

Furthermore, if after the surgery, residual cancer was found in any of the lymph nodes that were removed for biopsy, I would opt for adjuvant (post-op) chemo.  No one need argue with me about chemo effects since I’m a 4-star general when it comes to that.  I have undergone chemotherapy on 4 different occasions.  Each treatment consisted of Carboplatin/Paclitaxel (Taxol) for 6 treatments given at 3-week intervals.  And yes, there has been a lot of miserable days during that time. 

If I understand some of the “reasoning?” behind opting out of surgery is because of the disappointing stats for Esophageal Cancer.  Some have stated that they are not willing to give up their present state of health to go through a major surgery that will never allow them to return feel as good as they feel now.  Once again, after an EC diagnosis, one’s choices are relatively few!  You are never going to be exactly the same once cancer enters your life.  It is definitely “life altering”. 

Of course, some of these have just learned that they have EC, and have yet to know their stage, or their true options.  It is a bit premature to state what one will “settle for” or “not settle for” when they haven’t even received a full diagnosis that includes staging and treatment choices.

There are some sad stories about people who have been diagnosed with Stage IV who would love to have had the chance to have an esophagectomy.  Those who haven’t been through the entire ordeal cannot truly know what is involved.  They cannot know how they will feel after surgery, unless they have “been there—done that!”

And as “Ed” will tell you, even though he had the surgery and has now had a recurrence, he wouldn’t trade a thing and is thankful for the additional years he has lived since becoming a Stage IV patient.  But he will tell you that himself.  And I can tell you that my husband is now entering his 16^th year of being cancer free since his Esophagectomy as a Stage III EC patient back in 2003.  Moreover, Paul has said that although he had a difficult time, he would never have foregone the post-op chemo that he had to ward against a recurrence.  He is 8 years out on the other side of surgery.  We all say that the “gain is worth the pain.”

Lastly, it is premature for any surgeon to suggest that surgery may not be necessary for your father when Dad just had his first treatment.

I’m surprised, and if I were Dad, I wouldn’t opt out of surgery, no matter the monetary costs.  Cross that “money bridge” when you get to it.  Take the safer route.  Go the whole 9 yards, and pray for total success.  Your dad is very young, and Stage II is not considered “advanced” stage.  That is a plus in his favor.

So put me down as one that DISAGREES with the oncologist.  Show me some clinical trials that indicate that just plain chemo and radiation have eradicated innumerable Stage II Esophageal Cancers, and there has been NO EVIDENCE OF RECURRENCE.  Then I’ll believe it.

So far I’ve not read an abundance of stories here from patients who were diagnosed with Esophageal Cancer that opted out of surgery and are doing “just fine!”  (Only in the very earliest of stages has removal of the tumor been possible without the need for an Esophagectomy.) 

But we’ve read a lot of pitiful, heartbreaking stories from patients who were diagnosed with Stage IV Esophageal Cancer and never had the “option” to have surgery.   My advice is to educate yourself about this cancer and be an advocate for your father.  Speak your mind, state your case, and don’t just “settle” for whatever the doctor says.  And be certain that when Dad signs any papers anytime, that he gives you and mom both permission to be consulted about any choices that Dad will be asked to make.  You may have to intercede on his behalf more than once. 

But for now the hour is late, and I’ll be back in touch.

Loretta

P.S.  Here’s a poem and I’m not sure of the author, but I think it is fitting for you at this time.  Here is a reference as well. (Stents have not been the best option for most patients writing to us here, but for the sake of this discussion I will put this reference here in its entirety.)  The subject matter at hand is to debate the surgical options.  

1.  https://www.umms.org/umgccc/cancer-services/cancer-types/gastrointestinal/esophageal/tri-modality-therapy

 

“Tri-Modality Therapy to Treat Esophageal Cancer

In later stage esophageal cancer (stages 2-3), the cancer has spread deeper into the esophageal wall. Treatment for these cancers may involve trimodality therapy, a combination of chemotherapy, radiation and surgery. It is most common for chemotherapy and radiation to take place before surgery. However, often patients with later stage cancer have difficulty or inability in swallowing food or liquid. When the cancer causes swallowing problems, weight loss, esophageal obstruction or vomiting, a gastroenterologist will use an endoscopic procedure to open up the esophagus. This may involve the placement of a stent to keep the esophagus open. This allows the patient to proceed first with chemotherapy and radiation therapy, which is associated with better long-term survival rates.

When a patient presents with stage 2-3 esophageal cancer at UMGCCC, he or she is evaluated by a multidisciplinary team. This team consists of a medical oncologist, radiation oncologist, and thoracic surgeon. These experts tailor a treatment plan to the patient’s individual cancer and other factors such as age, functional status and other health conditions.

Treatment usually begins with chemotherapy and radiation given at the same time in a treatment regimen than usually lasts 5-6 weeks. Four to six weeks of the last dose of radiation, a restaging PET/CT scan is done. If the cancer has not spread, then the patient is a candidate for surgery. Other testing may be required to determine the patient’s health (testing of the heart and lungs) to make sure it is safe for the patient to have surgery.

Trimodality therapy not only gives patients a survival advantage, but it sometimes “downstages” the cancer to an earlier stage. This gives patients the best chance to have their cancer completely removed by surgery.”

_________________________________________________________________ 

 

DON’T  QUIT

 

When things go wrong, as they sometimes will,

When the road you’re trudging seems all uphill,

When the funds are low and the debts are high,

And you want to smile, but you have to sigh,

When care is pressing you down a bit,

Rest, if you must—but don’t you quit.

 

Life is erratic with its twists and turns,

As everyone of us sometimes learns,

And many a failure turns about

When he might have won had he stuck it out;

Don’t give up, though the pace seems slow—

You might succeed with another blow.

 

Often the goal is nearer than

It seems to a faint and faltering man,

Often the struggler has given up

When he learned too late, when the night slipped down,

How close he was to the golden crown.

 

Success is failure turned inside out—

The silver tint of the clouds of doubt—

And you never can tell how close you are,

It may be near when it seems afar;

So stick to the fight when you’re hardest hit—

It’s when things seem worst that you mustn’t quit.

Deathorglory

Hello Julia

Hello Julia,

As I mentioned before, trimodal therapy (chemo/radiation and then surgery) is the standard of care here.  If your father's doctors are suggesting to veer away from that, then I would think your father will not be receiving the best treatment that he can.  Very early cases of EC can possibly be treated just as effectively with just chemo and radiation, but I don't know if that's the case for your father.  I would look to find out all of the specifics of your father's case and find out why the doctors think that surgery wouldn't be beneficial.  This specific cancer has a propensity to recur.  In a lot of cases, it keeps coming back until it kills the patient.  I know it tried to do that with me.  Anything that can be done to reduce the chance of a recurrence should be strongly considered.  I'd want to know why the doctors think the chance of recurrence (and increase in the chance of survival) isn't going to be reduced by surgery.  I am of course, not a doctor, but I have had some experience on this ride.

Best to your family,

Ed

juliamaz

Happy 4th of July!

Dear Loretta and Ed,

 

Happy 4^thof July!!!

 

I am totally agreed with all what you are saying and trying to make sence from what I heard from Korea. I recently read on cancer.net that squamous cell cancer (which my dad has) surgery may be used afterwards depending how well chemoradiotherapy worked vs for adenocarcinoma cancer surgery is almost always recommended after chemoradiotherapy.

So far this is the only explanation I can find why would they say that surgery might not be needed. But again I will know exactly only after I talk to surgeon after my dad finish his 6 weeks of treatment. I will let you know as soon as I hear anything. I also talked to my mom and said to her that if the hospital my dad is in now will refuse surgery we will definitely go to another one and will get a second opinion.

Below is the link.

 

https://www.cancer.net/cancer-types/esophageal-cancer/treatment-options

 

Particularly for squamous cell cancer, chemotherapy and radiation therapy, a combination called chemoradiotherapy, are commonly recommended as the first treatment. Surgery may be used afterwards depending how well chemoradiotherapy worked. Recent studies show using chemoradiotherapy before surgery is better than surgery alone. 

Foradenocarcinoma, the most common treatment in the United States is chemotherapy and radiation therapy followed by surgery. Surgery is almost always recommended after chemoradiotherapy,unless there are factors that increase the risks from surgery, such as a patient’s age or overall health.