IT'S HARD TO SWALLOW...BUT THERE IS HOPE

When a seemingly benign occurrence leads to a cancer diagnosis,
an amazing journey of discovery and faith begins.

by Dale Gianforte
with Frank Gianforte
March 15, 2007

Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul. (Psalm 143.8)

It started innocently enough on a pleasant May evening (5/19/2006) as I tried to take an Allegra for my spring allergies. I choked on the pill, and then could not even hold down water. After calling an internist, my husband Frank and I were advised to go to the local hospital emergency room. It was a Friday evening, with the typical ER wait of a few hours. We were planning to go to a family wedding in upstate Pennsylvania the following day. The courteous ER staff reassured us that the problem was probably food caught in the esophagus; the gastroenterologist (GI) would clear it, and we would be on our way. It happens all the time.

After examining me, the GI called Frank outside and told him that the endoscope had revealed a large mass in the upper- to mid-esophagus. He was scheduling a chest x-ray and CT scan for that evening, and he wanted to admit me to the hospital overnight.

Needless to say, we were shocked. What is esophageal cancer (EC)? I'd never heard of it. Sure, I saw the Nexium ads...and laughed. Erosion of the esophagus...get real...and take a Tums.

The range of emotions I felt is indescribable. Why me? Why now? Am I going to die? When? What about all the things I've been planning to do? I've taken good care of myself—a healthy diet and plenty of exercise. How could this happen?

The next day, the GI met with Frank and me in the hospital room and confirmed that the large mass was probably squamous cell cancer. It's not the most common type of EC (that's adenocarcinoma, near the stomach junction). Only male smokers and drinkers get squamous carcinoma. Thanks—glad to know I'm so unique!

The doctor wanted to confirm his diagnosis by performing another endoscopy and doing a biopsy of the mass the following Wednesday (5/25/2006). After this was done, I emerged from the Short Procedure Unit and found the GI and the head of the hospital's cancer center waiting for me. The GI confirmed his findings, pending pathology results, and referred us to the cancer unit.

Frank and I then started our search for every bit of credible information on the subject, tapping into sources that included doctor friends and the Internet. We also prayed, and we asked everyone else to do the same.

Everything is possible for him that believes. (Mark 9:23)

In a matter of days, our emotions went from disbelief to grief (lots of crying) to anger to a strong resolve to beat the cancer. We learned right away that time is of the essence. That thing is growing, and we'd better get a plan fast—and it had better be the right plan.

We later conferred with the head of the cancer center, a medical oncologist, and a radiation oncologist who outlined their treatment plan and ordered a PET scan (6/1/2006). I was to receive chemotherapy (cisplatin and 5FU) the first and fifth weeks, in conjunction with a five-week regimen of five-day-a-week radiation of the esophagus.

They ordered a mediport to be inserted the clavicle area for IV chemotherapy and a feeding tube. They explained that radiation would probably swell the tumor before shrinking it, making eating very difficult.

Early on in our research we discovered the Bloch Foundation, established by multiple-cancer survivor Richard Bloch of H & R Block fame. (He and his brother changed the spelling of the company name for the sake of simplicity.) The foundation has a program called BLAST, which signs up national cancer centers to provide newly diagnosed patients with a second opinion within seven days. Through this program, we were able to get an appointment at Fox Chase Cancer Center (FCCC) in Philadelphia.

We explained our position to the local doctors. Although we wanted to begin preparations for treatment because we knew it was important to take action quickly, we also valued a second opinion. We had never done such a thing, but were emboldened by the Bloch Foundation.

The cancer center doctors concurred with our feelings, and offered to have their office help with the referral. Little did they know that Frank had already set up the appointments at FCCC for 6/7/2006. However, the local hospital cancer office was helpful in getting the somewhat recalcitrant records department to give us all necessary records and slides to take to our appointment.

I went ahead and had my planning session for radiation, including tattoos—semi-permanent ink dots made on the skin to assist in focusing the radiation beams. Chemo and radiation were scheduled to start on 6/12/2006. (I'm providing dates to indicate the rapid timeline under which we attempted to educate ourselves, evaluate what we'd learned, and make decisions without losing precious time to fight the cancer that was growing inside me.)

Meanwhile, the PET scan results came back as Frank was in the office of the local radiation oncologist. An astounding dialog took place.

Frank was told there was bad news. The PET showed metastasis to the lungs. Frank heard a word—palliative—that was unfamiliar to him.

What does it mean?

Well, Frank, it means we will treat Dale to make her as comfortable as possible. Would you like a prognosis for how long she has to live?

No. You are not God. You don't know the fight in her heart. It sounds like you have given up.

No, I haven't, but I am being realistic.

Goodbye.

A doctor friend had a contact with Memorial Sloan Kettering (MSK) Cancer Center in New York who arranged for a consultation with a top MSK EC oncologist. His advice was to stay local. Go to FCCC and try to see Dr. Barbara Burtness, with whom he did a fellowship at MSK. The doctor we were scheduled to see at FCCC, by chance or providence, was Dr. Burtness.

Accompanied by our middle son Doug and armed with questions, we went to the second opinion with a radiation oncologist and the medical oncologist, Dr. Burtness.

The radiation oncologist, Dr. Andre Konski, entered first and announced, "You do have an esophageal tumor and lung metastases, but I do not agree with the planned treatment. The body has a limited tolerance for toxicity, and I believe that you would be better served by aggressive chemo to fight the systemic disease rather than radiation concentrated on the esophageal tumor."

Dr. Burtness, with whom he had previously conferred, then went on to explain the treatment. If chemo were successful, then radiation could be considered—as well as other options. At this time, surgery was not in the picture. In fairness, they agreed that control of the disease—not cure—was the goal. The word palliative was not used. A feeding tube would not be needed. There was something about Dr. Burtness. She exuded confidence and provided thoughtful, detailed explanations for all our questions. When she started to talk, Doug and Frank stopped taking notes and just listened, their mouths open.

I knew this was my doctor. I felt the tumor shrinking as she talked.

The three of us conferred and decided to have Dr. Burtness and FCCC treat me. We knew this was right, but it was such a difficult choice to make. I would have to live with my decision—I would have to live, period!—so I hoped and prayed. Once you arrive at such an emotionally charged conclusion, a certain peace falls over you. Actually, the hardest part, emotionally, is over.

The chemotherapy would start on June 16—only four weeks to the day from the first diagnosis. Not too bad, considering all the tests, appointments, second opinion, scheduling, and decisions. We prayed we made the right decisions. We never regretted anything.

The chemo to be used was Folfox (oxaliplatin and 5FU). 5FU has been around for many years, but oxaliplatin was developed fairly recently for gastrointestinal cancers and is not FDA approved for EC. Dr. Burtness was very confident about using it and has studies to support her position. It turns out that Medicare initially refused payment, but FCCC's social work department went to work and either got it approved or went to the manufacturer to reimburse the hospital. Other than filling out a financial form, we never heard any more about it. The chemo infusions were to be given every two weeks for four weeks, and then I would have a scan to evaluate the results.

At this point, I'd like to interject a note about searching the Internet. It's home to a wealth of information and many support groups—all readily accessible. However, you must consider the source when it comes to accuracy of information and your tolerance for bad news. In particular, statistics can be devastating. They are all there: mortality rates, median survival rates, and every distressing number you can think of. I urge anyone who is the least bit mathematically inclined to read The Median Isn't the Message by Stephen Jay Gould, a cancer survivor and Harvard professor. (Just Google the title or author.)

For a disease like EC, the survival rates are so poor that it's easy to feel hopeless. You have to consider your position in the statistics. For example, what is the population of the study? Does it have a high percentage of smokers...of very elderly people in otherwise poor health? If the distribution around the mean is right-skewed—not normally distributed—the mean will over-predict mortality.

There are Web sites that provide support by having survivors of the same cancer call you and establish a lifeline. I had the experience of calling one site and being told by the volunteer that there was no record of any survivor who had squamous cell EC and did not have surgery. At first this sounded terrifying, but it turned out to be due to the fact that the group's database was too small. Frank and I eventually did connect with survivors by e-mail and phone, and they were very helpful and supportive—particularly the ones we "met" through the EC-Group of ACOR.org.

During chemo, it came to light that I am extremely sensitive to 5FU. I was hospitalized twice for severe diarrhea, dehydration, fever, and infection—despite reductions in the amount of 5FU infused. Dr. Burtness was very concerned for my health, but I was steadfast in my wish to continue if it was doing the job on the tumor. After all, what is a little diarrhea in the overall scheme?

On the day of the first infusion, I received a prayer quilt from our church in San Diego, where we spend the winters. It was made by a group of concerned and compassionate people, and was dedicated to me one Sunday and placed on the altar. Members of the congregation each tied individual knots in it as they offered a prayer. It was a great comfort covering me each night, and I took it with me to the hospital.

After the first infusion, when I was admitted to the hospital, Dr. Burtness asked if I could swallow better. I said I didn't know, because I'd had nothing but liquids. She said that patients often sense that the chemo is shrinking the tumor. An hour later, my dinner tray came and I ate some meat, cubed potatoes, and green beans—my first solid food in weeks.

Dr. Burtness decided to push up the timing for the evaluation scans, since, as she put it, "If we are going to threaten your health with this chemo, we ought to find out if it's doing any good."

The CT scan results could not have been more positive. There was significant improvement in the size of the primary tumor, the nodule in the right lung was deemed insignificant, and the surrounding lymph nodes looked much better. Suddenly, my prognosis was improving.

After a confirming PET scan, the decision was made to take a break from treatment and perform a restaging of the cancer with an endoscopic ultrasound and biopsies, all of which were very promising. I was then referred to Dr. Melvyn Goldberg, chief of thoracic surgery at FCCC and a respected EC surgeon, who concurred that I was a candidate for surgery.

Surgery was now an option!

Unfortunately, nothing good is ever easy. The same week as our surgical consultation, Dr. Burtness took my case to the tumor board, since she thought it was unusual. The board, as we understand it, had a spirited discussion and could not agree on whether I should have surgery because of the suspected metastasis to the lungs. Did it spread or not? Some felt that I should have radiation with chemo before considering surgery, and then re-evaluate.

Dr. Burtness explained these discussions to us and suggested that we might want to get another opinion. She recommended seeing Dr. Arlene Forastiere a well-known EC oncologist at Johns Hopkins. We agreed, and had our records sent to her.

Since Dr. Forastiere could not see me until October 31, we decided to start the therapy, since chemo-radiation before surgery is the normal route. I was to have radiation five days a week, with chemo (carboplatin and Taxol) given on Mondays. As had become my pattern, I was again hospitalized after the second chemo/tenth radiation treatment due to a fever and low white blood count.

At the end of October, Frank and I drove to Baltimore, where Dr. Forastiere examined me after reviewing my slides and reports. She agreed with the diagnosis and treatment, but felt that I could not tolerate much more chemo, and suggested switching to a single chemo agent. Most significantly, she felt that my prognosis for cure was good after surgery. She had experience with other cases like mine with questionable lung metastases. She said they would either resolve themselves to be non-cancerous, or they could be removed during the EC surgery. "You have to have surgery," she said. "You have 20 more years to live."

Dr. Andre Konski, the radiation oncologist, once again reappeared in my life.

I recount all this history to illustrate the real-time decisions that the non-medically trained patient faces. It is essential to have faith in the medical team you have selected...to ask the tough questions...to pray...to make your commitment.

Frank and I learned a lot about the morbidity and the after-effects of this difficult surgery. We questioned why I had to go through with it if the tumor disappeared from chemo-radiation. Looking back, I can see how ironic this thought was, since we were disheartened in the beginning when surgery was not an option.

At present, the most favorable outcome results from chemo-radiation followed by surgery. It might change in the future, but I had to decide now. Frank talked to a survivor he met on the Internet and asked him about the post-op morbidity. The man said, "You don't get it. Forget the small stuff. I am alive."

I completed four infusions and 27 radiations (30 had been planned) before the doctors, Frank, and I agreed to shut down the pre-op therapy and let me build myself up for surgery.

I had my esophagectomy on January 16, 2007, and it went very well. I was out of the hospital in 11 days, and never had to use the feeding tube. These days, I have no problems with sleeping and eating. I was in excellent physical condition prior to surgery, but find that my energy is returning very slowly. I am taking physical therapy to regain my strength and flexibility, and plan to play golf later this spring.

The pathology from the surgery was very encouraging. The only cancer found was in the wall of the esophagus, and it was removed with good margins.

However, as I previously said, nothing good comes easy. Dr. Burtness explained that while my results are good, they are not as good as finding no residual tumor. In the light of that fact, and since my pre-op chemo was less than planned, she is going to give me weekly Taxol infusions for three months—or as much as I can tolerate. Although studies are mixed on the value of post-op chemo, she feels it will enhance my resistance to recurrence.

I am now experiencing one of the more benign, yet clearly visible, side effects of the treatment: the loss of my hair. I have to be honest and say it's a little tough to look in the mirror and see my previously thick tresses dwindle day by day. But I'm doing my best to set vanity aside and replace it with the belief that if my hair is falling out, the chemo is doing its job. Besides, this is a great opportunity for me to invest in a couple of wigs and try out life as a redhead or brunette.

Actually, now that Frank and I are both relatively bald, it might result in less confusion. Throughout my course of treatment, Frank was always thought to be the patient, since he sports the cue-ball look so common in folks undergoing chemo. To compound the mix-up, "Dale" is most commonly a man's name. Nine times out of ten, I'd show up for an infusion, only to be greeted with, "Hi! We've been waiting for your husband."

I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11)

For the first week after surgery, both Frank and I experienced post-op depression. After all, we had spent at least one to five days a week over eight months at FCCC. Now we were cut loose. We missed our second home (FCCC) and the people.

We are trying to get some normalcy back in our lives.

We had met cancer, faced up to it, fought it, and have survived so far. The one thing that is different about this challenge from any other is that it is never over. There is always the fear of recurrence, but you can't dwell on it. You take care of yourself. You pray. You get your check-ups. You get a life.

If it happens, it happens—and you deal with it then.

The most important thing I learned is to enjoy the present and all the simple, good things in life—family and friends.

Don't sweat the small stuff.

I can't say enough about the gratitude I have for the medical team that treated me, the fine and caring staff of Fox Chase Cancer Center, and all our family and friends who prayed for us and offered their assistance.

HISTORY IN BRIEF

• Dale, a 69-year-old female, was diagnosed on 5/16/06 with squamous cell cancer in the mid-esophagus (20-27cm from incisors) with possible metastases to the lungs.
• After four infusions of Folfox (oxaliplatin and 5FU), the tumor shrank significantly and swallowing was normal.
• The tumor was contained in the walls of the esophagus. The lung metastases were gone or insignificant.
• Due to the toxicity of 5FU, Dale was hospitalized twice and the regimen was stopped.
• Dale was re-staged to Stage II T2N0M0, and surgery was considered an option.
• The hospital tumor board recommended chemo-radiation before surgery due to questions about the possible existence of lung metastases.
• Chemo-radiation was done for 5-1/2 weeks. Taxol (pacitaxel) and carboplatin were given weekly, and radiation was done five days a week.
• Dale was hospitalized on 10/21/06 due to fever and very low white blood count.
• Treatment was suspended at 27 radiations (4860 cgys), two infusions of carboplatin and Taxol, and two more of carboplatin only.
• Surgery was performed on 1/16/07 via a modified McKeown technique (three-hole esophagectomy).
• Pathology showed all cancer isolated to esophagus and entirely removed with margins.
• Post-op chemo of a single agent (Taxol) is now underway weekly for prophylactic purposes.

LESSONS LEARNED AND RECOMMENDATIONS FOR ANYONE NEWLY DIAGNOSED WITH CANCER

• Learn all that you can as fast as you can about your cancer. Time is of the essence.
  • Consider the source and get corroboration before making decisions.
  • Your first decision about where to be treated is critical. Once you make that decision, place all your support behind it and trust those you have selected to treat you.
• Be positive. Believe you will be cured. If you don't believe it, who will? It's all about your attitude.
• Surround yourself with positive people. You have enough problems without having to deal with and support naysayers.
• Cry as much as you need to. Then get over it and start working on your cure.
• Get a second opinion from a National Cancer Center as soon as possible.
• Develop your own support structure—the people you will depend on. They need to be good listeners and doers.
• Don't sweat the small stuff, like side effects. You are fighting for your life.
• Prepare for every doctor visit like your life depends on it—because it does.
  • Write down any questions you may have.
  • Remember—you may have only 15 minutes with the doctor, so your questions must be prioritized and concise.
  • Make sure you and your doctor are clear on your objectives.
• Every person and every treatment is different. Understand your case and ask questions, but don't expect to get the same chemo as someone else.
• Get copies of all records of doctor visit notes, lab results, CDs of scans, etc.
  • Keep records chronologically in a notebook for future reference. You will be surprised at how useful they will be. Remember—doctors take only a few minutes of prep before seeing you in the clinic.
• Prepare your own chronological list of all procedures and major tests, such as infusions, scans, and radiations.
  • You will need to refer to it frequently when seeing doctors, and after a while you start to forget.
• Ask for pain medicine. Don't try to be a hero.
• Get yourself into the best possible physical shape before treatment, and continue doing so as much as you can.
  • Being in shape helps you recover quicker.
  • After surgery, get physical therapy.

REFERENCES

National Cancer Institute (NCI) 1-800-4-cancer www.cancer.gov

National Institutes of Health (NIH) www.nih.gov

Medline Plus www.medlineplus.gov

Centers for Disease Control and Prevention www.cdc.gov

Bloch Foundation www.blochcancer.org www.blastcancer.org

Association of Cancer Online Resources www.acor.org

EC-Group http://listserv.acor.org/archives/ec-group.html

Cathy's EC Café www.eccafe.org

Esophageal Cancer Awareness Association www.ecaware.org

100 Questions and Answers about Ginex, Hanson, Frazzitta & Bains Esophageal Cancer (available on Amazon.com)

DALECAREPAGE

Through the Web site www.carepages.com, Frank kept our family and friends updated on my fight with esophageal cancer. The intent was to provide timely updates without having to recount the details over and over in phone conversations. It really helped, and we were told countless times how much everyone appreciated it. However, we do fear that some folks felt they should never call to bother us, and that was not what we had intended. We simply hoped that calls could concentrate on positive supportive conversations.

We did find that we had to remember to keep in touch with those who were not on the Care Pages access list and who were not Internet users. By February 2007, we had 62 people on our access list and nearly 1,600 hits since the initial posting. That's a lot of phone time saved. Ninety per cent of our guests checked each posting within 24 hours of getting e-mail notification. We put guests on the access list only if they requested it.

Send Dale & Frank a message