Dear Family and Friends,

My dad has esophageal cancer. 

His case seems to be a mystery that so far no one can solve. It is presenting in a very unusual way. The doctors all agree that he looks healthy and isn't showing the signs and symptoms of someone with advanced esophageal cancer. The doctors can't agree which stage he is in. Some think 4, one doctor thinks 2, and the rest are somewhere in between. They all agree that it is T3 and no one has a guess to what N is, but the part they don't agree on is whether the M is 0 or 1. The cancer is present. They think it has spread to nearby lymph nodes and tissues. They don't know yet if the cancer has spread to distant parts of the body. 

Stages of esophageal cancer are assigned based on The American Joint Committee on Cancer’s (AJCC) TNM system, a commonly accepted method based on 3 key components:

1. Tumor (T) describes the size of the original tumor.

2. Node (N) indicates whether the cancer is present in the lymph nodes.

3. Metastasis (M) refers to whether cancer has spread to other parts of the body.

A number (0-4) or the letter X is assigned to each factor. In esophageal cancer staging, as in all cancer staging, a higher number indicates increasing severity.

Anatomic categories include T descriptors (tumor invasion), N descriptors (regional lymph node invasion), and M descriptors (distant site). Non anatomic categories include grade differentiation (G descriptors) and tumor location (L descriptors). Category descriptors are currently assessed by endoscopy with biopsy, by endoscopy ultrasound fine-needle aspiration (EUS-FNA), by thoracic-abdominal-pelvic computed tomography (CT), and whole body flurodeoxyglucose positron emission tomography (FDG-PET) fused with CT.  

More tests are being done and we will keep you updated. For the full story read on 2 sections below under background information. 

About My Dad: 

I wanted to share a little bit about my dad, for those of you who don't know him yet...

     My dad is someone who is genuine, patient, giving, loving, accepting, respectful, supportive, dependable, thoughtful, incredibly funny with a fantastic sense of humor, loves you for who you are, is not judgmental, he's straightforward, forgiving, can always cheer anyone up, selfless, a listener, trustworthy, loyal, open, honest, non defensive, sharing, intelligent, ambitious, an animal lover, an overall kind human being, and I can keep going on and on listing my dad's wonderful attributes, but all those fantastic traits don't really do him justice. It's hard to put into words how much my dad means to me, my mom, and our family and friends. 

     I feel a bit odd about asking family, friends, even strangers for help, but then I think about my dad and how he is always the 1st to lend a helping hand to anyone no matter the cost to himself. He regularly does whatever he can, generous to a fault, and sometimes even his own detriment. He has been there supporting me every step of the way and hardly ever says no if he can help it. He put me through fancy schools, helped me with my homework and projects, always cheered me on in my extra curricular activities, opened up our home in order for me to be an exchange student in England, allowed me to study abroad in Australia, and gave me the chance to branch out travel on my own starting at 16 and every year in those 15 years since. He funded my undergrad education with full room and board as well and when I wanted to go to grad school he told me to just get in and not worry about the rest because he would take care of it. He has always been there for me supporting my hopes and dreams however unrealistic those ventures may be. He has literally given me the world and every opportunity in it and while I know it was never necessary or expected of me I always planned on repaying the favor. I just hope I get the chance to. And so, I would hate it if there was something I could do and I missed the opportunity to help him when he needs it most. We need to try everything. 

     He's constantly on top of birthday, anniversaries, special events, and making the most out of the little celebrations in life. He consistently sends cards, gifts, never misses a phone call, he keeps in touch, and is never far from his loved ones. My dad is gregarious and makes friends fast. He isn't one to shy away from a conversation with a stranger and is always chatting people up wherever he goes and making them laugh. It's always a good time when you're with him no matter the situation. Time with him always moves too quickly. And I'm afraid that it's only going to move faster. I can't imagine not having my dad walk me down the aisle and give me away on my wedding day and miss out on sharing the father daughter dance with me. I can't picture him not being there when I finally graduate with my PhD nor being there to celebrate with me when I get my 1st, real, adult job. He is going to make an amazing grandfather one day and I can't conceive of a world where he miss out on getting to be a Papou to my future kids. I don't know how to envision a world without my dad and I very much hope I don't have to until he has grown old and gray, 35 year from now. Which is why I'm writing an open letter to you, asking for your help in any way possible. 

     My dad is strong and resilient. He has beaten the odds many times before with everything from hernias to hemorrhoids. In 2000, he had lung surgery to remove 1/4 of his lung due to bullous which went wrong and they thought he wasn't going to make it. They called us back to the surgical ICU to say goodbye, but thankfully he fought and lived. Although, because he lost so much blood he needed to have emergency transfusions and ended up catching Hepatitis from the tainted blood in the hospital. He managed to beat that as well through a year of Interferon treatments. He had part of his intestine removed due to diverticulitis and that spurred a change in diet. Along with that changed diet he has come back from diabetes, high blood pressure, and high cholesterol, all of which he manages 100%. He doesn't let anything get him down. He always bounces back and we have no doubt that he will do so again this time around. 

     No donation is too small, every little bit helps. As does you sharing this link https://sites.google.com/view/jpvass/ or www.gofundme.com/jpvass and story on social media, with your family, friends, everyone you can think of. If you know any specialists or treatments or have advice and can help with connections, that would also be incredible. Thank you so much in advance! It is really appreciated! 

Background:  

The long story... 

Happy Halloween!

Hospital stay #1- 

    Just after Halloween, in the middle of the night of Wednesday November 1st, my dad was rushed via ambulance to the Memorial West ER in Pembroke Pines. He had been having back pain and throwing up the previous day. That night he was shivering uncontrollably, with a fever of 104°. 

     After a bunch of tests and misdiagnoses over the next 5 days of everything from the flu, pneumonia, bladder infection, UTI, a rare Asian waterborne tropical disease from amphibians and fish, etc. it turns out he had a sever infection of his gallbladder. A nuclear imagining test showed that he also had a 4cm mass on his liver. The next day they transferred him to Regional Memorial in Hollywood and went in laparoscopic to remove his gallbladder and the abscess on his liver, but it so happened that the gallbladder was so swollen and infected they had to change the procedure mid-surgery and open him up. Turns out a gallstone had clogged his bile duct causing the gallbladder to swell and leak fluid creating an abscess on his liver. They removed the gallbladder and 1/4 of the solid left lobe of his liver. 

     He spent the next 5 days in the hospital recovering from surgery and with a therapist to get him walking again. They analyzed the mass and they didn't find it to be a cancerous tumor, but just a solid abscess. The day his drainage tube was taken out he was sent home after 10 days total in the hospital on Friday November 10th. They gave him 2 weeks worth of antibiotics that were supposed to clear up the infection. 

Happy Thanksgiving! 

Hospital stay #2-

    Fast forward to Thanksgiving, 2 days after my dad's antibiotics ran out and he's feeling ill again. Same thing with uncontrollable shivering again accompanied by a fever. We convince him to go back into the hospital's ER on Friday November 24th and it was a good thing he did. It became apparent after a few days of more exams and more misdiagnoses that he had caught some antibiotic resistant infection from his surgery and that it had pooled creating a liquid abscess in the spot where they removed his previous abscess 3 weeks prior. They used interventional radiology to place a drainage tube in his side and was put on a full spectrum of heavy duty antibiotics. It took a few tries to figure out the combination of three which worked on his bacterial infection. 

     After 2 weeks in the hospital his insurance sent him home on Friday December 10th with the drainage tube still in and 2 weeks more of antibiotics. Thankfully we had an excellent home care nurse, Rosie, come by the house daily to empty and flush his highly contagious drain. After those antibiotics ran out, he was finally 100% cured of the infection and was almost fully recovered from his gallbladder and liver surgery.  

Cancer:

     And that's when we get the news from his last round of tests. While trying to diagnose the infection they had suspected it might be cancer as opposed to bacteria. They did a colonoscopy and bronchoscopy and took biopsy samples of his lymph nodes as well. The in house team of doctors couldn't figure out what was wrong and they had to send it off to a few different labs. Originally, they had thought it was gallbladder cancer, then liver cancer, followed by pancreatic cancer, then bladder cancer, someone tested for lung cancer, and then colon cancer, thankfully all came back negative. So after a week of hearing pretty much every type of cancer being tossed around and coming back false, we didn't think much of the diagnosis of esophageal cancer. We had just assumed it would come back later as negative too, just like all the others. 

     However, on Tuesday December 12th the top pathologist in the country from Cleveland Clinic in Ohio had sent us his report saying that it was in fact advanced staged esophageal cancer.  The Memorial hospitals have been really awful about communication both with the patient and between doctors, so we had no idea what was going on.  I had to ask my friends in the medical field (Shout out to kidney specialist Dr. Rohan an awesome friend and classmate from UF and my new buddy GI oncology pathologist Dr. Sandy) to read and translate the reports, images, results, etc. and tell us what was going on pretty much from the beginning.  A huge thank you to them during the entire process and still now.  So back to Memorial...they signed my dad up for radiation and chemotherapy before ever speaking with him.  Thankfully he insisted on having a PET scan on Thursday December 21st before treatment began because that completely changed the treatment plan.   

Dr. #1- Memorial Hospital Radiologist: 

    In shock we went off the next day, Friday December 22nd, to our surprise scheduled appointment with the doctor who was set to do my dad's radiation treatment. She looked at the PET scan and asked if anyone had told us what was going on.  She said someone should have told us everything by now, but since they hadn't she'd quickly summarize for us the best she could from the notes she saw...

   Her opinion was distal anterior esophageal adenocarcinoma, not squamous, and that they saw it is a 7cm mass. It's a malignant tumor formed from glandular structures in epithelial tissue.  She thinks it's grade 3 poorly differentiated and aggressive.  The PET scan showed it spread to the mediastinal chest lymph nodes and it looked like small bone lesions in his posterior medial left 5th rib, the anterior right 2nd rib, the medial right scapula, posterior medial right iliac bone, and anterior left sacrum.   Based on that she guessed it's stage 4 and T3, N1, M1.  She said for sure it's not in his liver, lungs, nor abdominal lymph nodes.  She recommended to change course and to 1st do only a full dose chemotherapy on its own.  Then followed by radiotherapy only if needed.  And as a last resort surgery.   

     It was bad news, but still hopeful at the same time.  She was very optimistic.  She said she has 3 former patients who like to talk to her new patients for motivation.  They were in worse shape than my dad and they survived at least 5+ years and like to inspire new people.   

Merry Christmas!  

Dr. #2- Memorial Hospital Oncologist: 

     Tuesday December 26th we finally met with an oncologist.  He was also optimistic, so that's good.  He told us to to not read the statistics online because they are outdated and not valid for everyone.  He said the treatment he wants to do works 80% of the time and then they have backups.  He said not to let the stats scare us.  

     He had a different treatment plans and wants 3 sessions of chemotherapy, 1 session every 3 weeks for 6 hours repeated 3 times and then come back to reassess.  If it works, he'll have my dad repeat that 9 week pattern until the cancer melts away and is gone or it stops working and then switch to different regiment.  He said it could take a year to disappear.  He wants to put in a port asap and he says no surgery and no radiation.  He said he thinks my dad is stage 4 esophageal cancer, T3, he was not sure about N, and M1.  He also thinks it has spread to the lymph nodes and bones.   

Drs. #3 and 4- University of Miami's Sylvester Comprehensive Cancer Center chief of surgery and head oncologist: 

     A few hours later that same day we drove down to Miami and met with the chief of surgery from UM's Sylvester Center.  He had a completely different opinion.  He wants to do surgery to remove the tumor and all but the top 3 inches of his esophagus. However, he said that could be dangerous because of my dad's previous lung surgery in 2000.  He doesn't think it's metastatic because my dad doesn't show any clinical symptoms of advanced cancer.  He said he's healthy looking and doesn't have the physical symptoms.  He thinks the lymph nodes are inflamed from the gallbladder and liver infection and surgery and still from the antibiotics.  So that's more positive news at least. 

     The surgeon had the head hematologist come in and give her opinion and then had her put in a request for the blocks and all the slides of everything they have to be brought over and stained for her2neu, pdl1, microsatellites, and to recheck his liver. 

     Then they switched and we saw their head oncologist who said 100% it's esophageal cancer, probably T3, but he doesn't think it's stage 4 like the other doctors had said.  Although, like them he is not sure of the N either, but he thinks it's M0 which is wonderful news.  He thinks in between stage 2 and 3 and that it's not as ominous.  He thinks the PET scan was a  false positive for it showing up in the bone as it doesn't usually spread there or present like that.  He said it would be very unusual.  Although, that's not unlike my dad's care so far.  Everything about his case has been uncommon and strange.  

     Like the previous UM doctors he took his time to read all the reports and images and also asked for more slides to be send and looked at again.  He said if for sure it turns out to be metastatic then there's no cure and it's lifelong because it will spread through the lymphatic system and can pop up again years later as a different type of cancer.  Otherwise it's an easier, treatable treatment regime.  He wants 6 weeks of a once a week chemotherapy session and then surgery.  He also wants to put in a port.  On his plan my dad will come in for treatment in the morning and then leave the next night.  He developed a new regime of 4 drugs which he uses in different combinations and strengths each week for 3 weeks, followed by a rest week off, and then repeat it all over again once more.  He developed the program in Germany because they had more trial participants, 1,000+, and no FDA to worry about.  He said it works on most patients.  He told my dad to enjoy the holiday season and then come back for treatment after the new year.  He was all positive and optimistic.  He said a lot of hopeful things we liked to hear and is confident about the future. 

Happy New Year!

Dr. #5- UM Pathologist: 

     We heard back from the pathologist on January 5th. They were not able to tell if it's adenocarcinoma, poorly differentiated carcinoma, or neuroendocrine carcinoma. It's not a usual type of cancer and not straightforward no matter what it is. Even among the experts the only thing they can agree is that it's highly unusual. They think it's T3 and like the other doctors said N and M are unknown. They said that the sampled lymph node was necrotic, but they weren't sure if that was because the demanding cancer had outrun it's supply of blood in the region and died off or if it is because it outgrew the region and moved onto another area. It looks like one kind of cancer, behaves like another, and stains like a 3rd different type, so it's really bizarre and throwing everyone for a loop. Where's Dr. House to solve this mystery when you need him? 

What's Next:

-We ruled out Memorial Hospital from the running as they didn't seem like they had it together and they were a bit behind the times when it came to technology and treatments.

-While the H. Lee Moffitt Cancer Center & Research Institute in Tampa has excellent doctors, they are not esophageal specialists, so we ruled them out. 

-We liked UM's Sylvester Cancer Center, but we'll see how they compare to our 3rd opinion. 

-Where's Dr. House when you need him? 

-Next week we're off to the Memorial Sloan Kettering Cancer Center in New York to meet with their team of doctors on Thursday January 11th. He will be retested for everything again from scratch there. 

-We're asking them to test the slides for HER2/neu, PDL-1, microsatellites, MOC-31, and trying to better identify the cancer as it is a strange case. It's missing a neuroendocrine stain and an adenocarcenoma stain, so hopefully those will be done as well. We also want a bone scan to determine definitively if it has spread to the bones. 

-Hopefully we'll like what they have to say and their treatment plan. If not we're on our way to MD Anderson in Houston and then John Hopkins in Maryland if need be.  Fingers crossed and wish us luck!!!

New information as we get it will be posted under the updates section 

Costs of Cancer

Cancer is costly. Paying for cancer care shaped the way people make daily decisions, and it also takes an emotional toll. It can take a toll on your health, your emotions, your time, your relationships – and your wallet. There will be unexpected charges, and even the best health insurance won’t cover all your costs.

⦁ According to the American Institute of Cancer Research (AICR) the price for one year of life increased to $54,100 in 1995, $139,100 in 2005, and $207,000 in 2013.

⦁ The U.S. Food and Drug Administration approved a treatment which shrunk tumors in 60 percent of patients in a clinical trial. The drug’s manufacturer, Bristol-Myers Squibb, will charge $141,000 for the first 12 weeks of treatment and $256,000 for a year of treatment, according to the Wall Street Journal.

⦁ According to the Medical Expenditure Panel Survey from the Agency for Healthcare Research Quality, cancer care cost an average of $85,201 per patient in 2010-2011 (When accounting for inflation that would be about $100,102 per patient in 2018). 

⦁ Annualized mean net costs of care for Male 65+ years old Esophageal Cancer Patients $79,822 in 2010 US Dollars. NIH estimates adjusted for patient deductibles and coinsurance expenses. About $90,997.08 in 2018. 

⦁ Newly approved cancer drugs cost an average of $10,000 per month, with some therapies topping $30,000 per month, according to ASCO, which discussed the costs of cancer care at a 2015 meeting. 

⦁ 11 of the 12 cancer drugs the FDA approved for fighting cancer in 2012 were priced at more than $100,000 per year. (Journal of National Cancer Institute)

⦁ Patients typically pay 20 to 30% out of pocket for drugs, so an average year's worth of new drugs would cost $24,000 to $36,000 in addition to health insurance premiums.

⦁ Average costs of radiation therapy: 1 Month $13,209, 2 Months $24,150, 3 Months $38,732 (Avalere Health study)

⦁ Average costs of chemotherapy: 1 Month $13,828, 2 Months $61,661, 3 Months $102,395 (Avalere Health study)

⦁ Drugs aren't the only expense. Patients must also pay for drugs that mitigate the side effects of chemotherapy, pay provider and facility fees, and often lose income when they miss work or lose their jobs.

⦁ 67% of the total costs of cancer treatment are non-medical(American Cancer Society)

⦁ According to UnitedHealthcare data, drugs themselves account for only 24% of direct cancer costs. Hospital and outpatient facilities account for 54 % of costs, and physician fees account for 22%.

⦁ Costs of surgery averages ranging from $14,161 to $56,587 (MayoClinic)

⦁ Cancer patients are 2.5 times more likely to file for bankruptcy than people who don't have cancer. A study presented at the 2014 Palliative Care in Oncology Symposium found 27% of cancer survivors reported suffering a financial problem like debt or bankruptcy. Another 37% reported modifying work plans or delaying retirement.

⦁ A survey by the American Cancer Society revealed that 25% of cancer patients in the U.S. put off getting a test or treatment because of the cost.

⦁ The same survey by the American Cancer Society found that 1 out of 5 respondents over the age of 65 said they had used all or much of their savings on cancer care.

Medical expenses for things like:

⦁ Provider visits 

⦁ Lab tests (blood tests, urine tests, and more, which are usually billed separately)

⦁ Clinic visits for treatments

⦁ Procedures (for diagnosis or treatment, which can include room charges, equipment, different doctors, and more)

⦁ Imaging tests (like x-rays, CT scans, MRIs, PET scans, nuclear imaging, ultrasounds, which may mean separate bills for radiologist fees, equipment, and any medicines used for the test)

⦁ Radiation treatments (implants, external radiation, or both) 

⦁ Drug costs (inpatient, outpatient, prescription, non-prescription, special nutritional supplements, and procedure-related)

⦁ Hospital stays (which can include many types of costs such as drugs, tests, and procedures as well as nursing care, doctor visits, and consults with specialists)

⦁ Surgery (surgeon, anesthesiologist, pathologist, operating room fees, equipment, medicines, and more)

⦁ Transportation and travel (gas, tolls, parking, taxis, bus, train fares, or airplane fares to get to appointments & treatment center. Hotel or other lodging. Meals while away from home. Communication costs, like copies of medical records. Special equipment or clothing.)

⦁ Family and living expenses

⦁ Employment, legal, and financial issues (Loss of wages by the patient & caregiver, learning about employment rights under the law, figuring out medical expenses to prepare income taxes, writing a will)

⦁ Home care (can include equipment, drugs, visits from specially trained nurses, and more) 

Our situation is very urgent.  If you can't afford to donate, despite no donation being too little, and still want to contribute there are other ways you can help.  Donations can also be made via PayPal at jpvass@aol.com fee free unlike the 2.9% + .30¢ that GoFundMe charges.  Please feel free to contact us directly.  Please spread the word and share our story and link.  We very much appreciate your help and kindness.  Thank You!

Love,

The Vassilopoulos Family: John-Paul, Isa, and Tatianna