ATC E-mail Support Group—Support Mailing List
That page provides information about the Anaplastic E-mail Support Group,
together with a link to the instructions for joining this free group.
ATC Journey Stories
Bill B's Story
In January of 2002, my 9-month-old daughter sneezed on me with a mouthful of food. In cleaning up, I found a lump in my neck.
I went to my family doctor the next day. He said it was probably no big deal but sent me on for tests, ultrasound and fine needle biopsy. The biopsy showed that it was thyroid cancer but not which kind. Again my doctor told me it was no big deal and there was only a slight chance it could be nasty especially considering my age at the time, 33.
I wasn’t getting good vibes from the oncologist I went to see nor the surgeon I was referred to. So I got on the Internet and after talking to an Endocrine Surgeon in NYC on the phone, he referred me to one in Connecticut (which is where I live). I was blessed to be sent to an experienced thyroid surgeon. Less than a week later (2/27/02) he had me in surgery because he did not like the pathology reports or the answers that I gave to his questions. When the hospital re-did the pathology on the biopsy, it was found that the tumor was made up of insular cancer (another rare thyroid cancer) (3/1/02).
After the surgery, the final pathology showed that I had negative margins (meaning they got the whole tumor) and many types of thyroid cancer. The major nodule was 90% insular and 10% anaplastic. They also found two more nodules that were papillary. Because of the anaplastic piece, they treated it as if it was all anaplastic, for obvious reasons. The surgeon said that I had to see the absolute best in the oncology field to make sure it would be obliterated out of my system. He sent me to a treatment center in NYC.
I started treatment at the beginning of May 2002 on an IMRT (Intensive Modulated Radiation Therapy) machine. I had one treatment a day, 5 days a week, for seven weeks. I was supposed to have 7 chemo treatments with Doxorubicin once a week during radiation. I only had 5. I missed one the week they put the feeding tube in and one another week when I had a fever. My last date of treatment was 6/24/02.
In November 2002, I had nuclear radiation to take care of the papillary cancer and the insular cancer. (If I had just insular cancer, they would have treated me with EBR, nuclear radiation, and chemotherapy because insular is a cross of fast-growing and slow-growing thyroid cancer).
The recovery was hell. But I am here today and very strong. I still have a problem with swallowing some foods and I am still very thin due to the high dose of levothyroxine that I am on and will be on for the rest of my life. I am here to watch my two little girls grow up, who are now four and five.
I’ll never know why I am one of the lucky ones, but while I am still on this earth I will be here to help each and every one of you get through this. Please let me know if there is anything else that I can answer for you.
PS – I also want to add that within the first week of IMRT/chemo treatments, I had a feeding tube put in. It was a real lifesaver because I lost 35 lbs. throughout the treatments. (I was only 125 lbs. starting out). I don’t know what it would have been like if I did not have it.
More comments from Trish, written in the spring 2005, on her experiences with Surgery, Chemotherapy, Radiation, and the Feeding TubeTop of page
Bill’s Fight is the story of my husband, Bill, and his opponent, Anaplastic Thyroid Carcinoma (ATC). Bill is a 44 year old from Connecticut. ATC is the nastiest form of human cancer known to man. Going into the ring, ATC is favored.
After complaining of earaches, numbness on the left side of his face, and a sore jaw, Bill went to the doctor and was referred for a head CAT scan (Sept 2004). Results showed no problem. A month later, a lump appeared overnight on the left side of his neck. A head and neck CAT was performed. Results showed a goiter or thyroid tumor. Surgery was scheduled and a needle biopsy was taken.
The biopsy results came back. Bill was diagnosed with ATC. Our life changed!
Bill’s doctor had never seen or treated ATC and had been totally shocked by the diagnosis. Bill’s scheduled surgery to remove the goiter was canceled. We were instructed to find another doctor, one who had experience with ATC. The doctor arranged for Bill to be presented to the Head and Neck Tumor Board at a teaching hospital where they had some experience with ATC. He also encouraged us to get a second opinion somewhere else.
After crying, we started scrambling. We managed to get another opinion at another teaching hospital. It was scary how quickly (the very next day) these doctors were arranging to see us. A 44 year old with an ATC diagnosis really makes the medical community move.
Our choice between two major thyroid cancer treatment centers in New England took careful consideration. At one center, Bill’s case was presented to a board of about 20 doctors ranging from pathologists to oncologists. They presented a plan that began with an open biopsy to ensure we were really dealing with ATC, then surgery, and then conventional radiation without chemotherapy because they didn’t believe that chemo worked for ATC. At the other center, they presented an aggressive treatment plan. Surgery would be performed and IMRT radiation would be used. Chemo, consisting of Adriamycin and Cisplatin, would be given weekly to enhance the effects of the radiation. They presented a scary, aggressive plan, but one we felt would move rapidly against the growing ATC. We choose the second center.
With doctors and a hospital selected, we were still shaking. Not only did we need to update wills, create living wills, and assign Power of Attorney, but we also had to help our three teenage boys cope with Dad’s diagnosis and think clearly enough to make more medical decisions.
The surgeon wanted to do surgery first and the radiation oncologist felt that the tumor was inoperable and that radiation needed to be done first. Long story short, we went with radiation and chemo first.
Treatment began (November 2004). Bill and I both took a medical leave from work. Our boys were left at home with Bill’s parents, and Bill and I moved to my brother’s home near the hospital. Twice-a-day radiation and various other appointments provided us with a full day of activities. The first few weeks of treatment were a breeze. Then pain set in, his voice started to change, a sore throat developed, and Bill got increasingly weaker. The radiation was taking its toll. A feeding tube was inserted when Bill was no longer able to swallow. Soon after, Bill developed a radiation burn and treatment was postponed for a week. Then, a fever set in and infections were uncovered. Bill had an infection in his eyes, at his feeding tube site, in his phlegm, and on his radiation burn. He was admitted to the hospital for IV antibiotics. Soon after, a lump appeared on the right side of Bill’s neck. Scans indicated that it was not cancer, but it was still worrisome. In addition, we worried that his tumor didn’t look much smaller from when we began and was still protruding from his neck.
When radiation and chemo were finally completed (January 2005), Bill had received 54 of the 63 grays of radiation that were originally planned. Although Bill was done with this phase of treatment, we knew that radiation was the gift that just keeps giving, meaning that Bill would continue to feel its effects for several more weeks.
Surgery was scheduled for 5 weeks (February 2005) after the completion of radiation. Bill’s surgeon informed us of all the difficulties he would be facing during surgery. The tumor was still very large and fluid-filled. It was still wrapped around his trachea. The surgeon indicated that he might have to remove more than just the tumor, possibly Bill’s vocal cords, nerve to shoulder, larynx... A tracheostomy was also a possibility. How encouraging! It appeared that the surgery would be the referee as to who would win the fight, Bill or ATC.
Surgery went better than anyone had expected! The doctor had separated the tumor from Bill’s trachea, scraped it from his jugular vein, and removed it as one mass! The mass on the opposite side of Bill’s neck turned out to be his voice box, which had been shoved out of place by the large tumor. Bill massacred ATC in this round! When the pathology came back it indicated small but clear margins. Another winning round for Bill!
Although thrilled with surgery results, Bill’s recovery was difficult. Bill did end up with the tracheostomy, which caused multiple little complications. The day he was set to be discharged from the hospital, he suddenly got very sick. As it turned out, he had developed aspiration pneumonia from his tube feedings and a sepsis line infection from his port site. He was a mess. Back to ICU he went. After three more additional weeks in-patient, Bill was finally released (March 2005).
Recovery at home was slow and scary. Visiting nurses came and were a great support. Friends came by for short visits, but Bill had difficulty talking with the trach. He wasn’t allowed to take any food, drink, or medicine by mouth, and his ability to focus on anything was greatly diminished. However, each day was a little better.
Follow-up scans showed no evidence of cancer. Bill won yet another round! Follow-up exams showed both vocal cords moving and functioning well. Again, a winning round for Bill! ATC was getting knocked down hard!
CAP chemo was then planned as the last phase of treatment. This would be the insurance Bill needed to ensure his victory over ATC. This treatment would last another three months and consist of Cytoxin, Adriamycin, and Platinum. These were given at a much more toxic level then the previous chemo, but it still was the easiest of all the phases of treatment Bill had gone through.
I end here (June 2005) as Bill awaits his last CAP chemo treatment scheduled for next week. He has no pain, but remains weak. His trach is out, but he still has his feeding tube. Swallow evaluations have shown that Bill’s esophagus has closed in on itself, so he is only allowed small quantities of pureed food by mouth. His primary source of nutrition remains his formula through his feeding tube. When cancer treatment is completed, Bill will be referred to a thoracic surgeon who will perform surgery/procedures to allow him to eat again.
The doctors would say that it is too early to tell who has won the fight, but I think the winner is obvious. My courageous husband has beat ATC in the ring every round.Top of page
Link to articles about Clayton:
Journal of the National Cancer Institute, Vol. 92, No. 7, 520-522, April 5, 2000
Messages to the ATC E-Mail Group From Rose and Clayton:
Here are some collected words of experience and wisdom from Rose and Clayton:
- “As I am sure you have been told, the prognosis is not always optimistic. There are success stories, each with a different treatment history, at this site (all include radiation early, with chemo concurrent or following). Doctors are learning with each of our successes— and sharing with one another as well. We'd encourage you and your family: stay strong, explore options, and share your concerns. We have always been impressed by the supportive folks at this site.”
- “Second opinion is always wise, if only to confirm that your dad's treatment plan is the best for his particular circumstance. If your dad is the first ATC patient your doctor has seen, his knowledge is limited to what he's read in medical books or learned in Med School. Survivors success stories are not in those textbooks yet!”
- “For my husband, Clayton, diagnosed in November of 1997, surgery was not an option. Doctors were not optimistic, but were aggressive in their treatment. He was 55 at the time and healthy except for the cancer. Initially, he had radiation with cisplatin, then later doxirubicin with vincristine, and he finally participated in a Phase I clinical trial with CA4P (combretastatin, still in clinical trials today). Surgery near the end of the clinical trial was 'investigative' — his scans, x-rays, etc continue clear today! His is just one of several 'success stories' you may read if you go back through prior postings. Each treatment history is different, but all have one thing in common: early diagnosis and aggressive treatment. Doctors are learning a bit more from each of these successes.”
- “ATC is an aggressive cancer, requiring aggressive measures. Treat it like a heart attack! Doctor to doctor calls usually get speedier results. They can ask and answer questions and save time. Generally, we would recommend your doctor as your best advocate.”
- “… medical books in college…stated ATC patients' prognosis is very poor. This is not always true, research has come a long way— there are long-term survivors— Clayton was diagnosed in 1997.”
- “Wonder if the new chemo will be Doxirubicin (aka adriamycin). Clayton had this drug as a second chemo after his initial radiation/cisplatin treatments. For him it did not further shrink the tumor, but held disease in check for several months (10) until his participation in the CA4P trial. An interesting side effect for him was 'radiation recall'. Tissue having been irradiated 'remembered' and he experienced some of the radiation side effects, though not as severe, as he had the first time around. This we took as a good sign. Radiation seemed to work so well the first time, we thought the radiation recall was almost like receiving additional treatments. Clayton's doxirubicin was given as a bolus infusion the first time (2.5 hr IV) but the rest of his treatments were administered by a portable pump he wore for 96 hours. This slower infusion allowed for the drug to remain in his system longer and also seemed to lessen side effects.”
- “…your family is in our thoughts & prayers. Your mom's doctors are correct when they say she is extremely lucky to be diagnosed early. Survivors, though having had a variety of treatment histories, all have one thing in common—early diagnosis and aggressive treatment. Sounds like your family is on the right track.”
- “Anyone seeking treatment away from home should inquire about facilities in the area they will be visiting for treatment/consultation. If there is not a " Hope Lodge"-like facility, hospitals usually have arrangements with hotel chains for reduced rates.”
- “We encourage making a lodging inquiry when patients' families are making initial appointments for consultation.”
- “Hospice will offer support in many ways. Both Clayton and I lost our moms to cancers. Hospice was available for one but not the other. In comparing the two end-of-life experiences, there is really no comparison! Hospice is wonderful! Their focus is making the patient and family comfortable, making the most of good moments by managing symptoms such as those you described. We urge you to inquire. Our thoughts and prayers are with you and your family!”
Hugs from our house to yours,
Clayton & Rose
by Betty T.
December 27, 2005
This is the story of my father's diagnosis, battle, and death from anaplastic thyroid cancer (ATC).
My father, Alex T., was born in Greece in 1932. He served in the Greek military in the 1950's. I do not know if he was exposed to radiation following World War II. My father came to Chicago as an immigrant with my mom and his siblings in 1966. He worked hard and built a successful wholesale ice cream distribution company. After many, many years of hard work, my father retired the year before his ATC diagnosis. He was in good health prior to the ATC diagnosis, but was a smoker.
In October 2004, my father began to have a sore throat and to experience hoarseness and coughing. He believed that he had a cold. In fact, he saw his physician, who diagnosed this as a run-of-the- mill cold.
The symptoms continued until they became far more pronounced in January 2005. In mid-January, he experienced trouble swallowing a pill. He was also in pain in his neck and jaw area. The pill lodged in his throat, and he asked my mother to take him to the emergency room (ER). I believe that he must have known something was wrong, though he did not want to alarm my mother.
The ER took x-rays. I do not know if they did an MRI or CT scan. The ER determined that my father suffered from degenerative arthritis. They referred him to his primary care physician (PCP) for follow-up. The PCP, who had been treating my dad for 20 years, sent him to physical therapy.
My father's pain got significantly worse, and the swallowing became worse. The physical therapist told him that he did not think that arthritis was his problem and that he should go back to the doctor. My dad returned to the PCP, who then sent my dad for a neck MRI. The neck MRI showed a mass on his thyroid. The PCP told him that this was nothing significant. The PCP told him to continue physical therapy. It continued until my dad could no longer bear it and refused to go. My father also pointed out a mass on his side to the doctor, who told him this was nothing to worry about. Later, we learned that this was a cancerous tumor.
Eventually, my dad was sent to a thyroid specialist at a university hospital in the Chicago area. The specialist immediately conducted a battery of tests and diagnosed my dad with ATC by that afternoon. This was March 16, 2005—many months after my dad's initial complaints.
On March 17, 2005, I flew in from Denver so that my family and I could meet with the oncologist at the university hospital. The oncologist told us the ATC was very advanced and inoperable. We were told that my dad would have 2 months to live with no treatment whatsoever, but that they might be able to extend this time with some treatment. I felt as though I was falling and that I wanted to throw up. I thought I might completely pass out.My head felt as though it was on fire.
The remainder of that day is somewhat of a blur, but I recall that we made an appointment with a radiologist.
Once we met with the radiologist, my dad began the treatments within several days. He was given radiation approximately 3 times per week and was also given chemotherapy to help facilitate the efficacy of the radiation. The tumor responded to the radiation and stopped growing. As soon as the radiation treatments stopped, the tumor began to grow again.
At the conclusion of radiation, we learned the ATC had spread to his bones, lungs, skin, and possibly his brain. He exhibited bizarre behavior and became agitated and hostile. Though his CT scan did not come back as positive for the spread to the brain, the only way to rule it out conclusively was by way of spinal tap, which we saw no point in putting him through. As the weeks progressed, my dad began to not recognize his siblings and his children. However, he recognized mom until the very end. He withdrew, refused to eat, and told my mother that he would divorce her when he got well.. In the beginning, he had grazped the concept that his prognosis was extremely grim, but later, he seemed to not understand this, which was better.
I watched my father go from being a strong man, the rock of our family, to someone I had to pick up off the bathroom floor when he collapsed. As his daughter, I never thought I'd have to pick my father up and carry him to bed. It was devastatingly heartbreaking for all of us.
Fortunately, once my dad was diagnosed and I returned to Denver, I began to see a therapist specializing in grief counseling. It was immensely helpful to me in trying to understand the grief process and my own emotions, including my panic, nightmares, and inability to sleep.
For nutrition, we tried Ensure shakes and liquid vitamins. These worked for a while, but then he just stopped eating and drinking altogether. The feeding tube was proposed shortly before he died. We never got to the feeding tube, and I believe we should have done it much sooner than it was proposed. He also began wetting himself uncontrollably. However, the oncologist thought we could try Taxol, a chemotherapeutic drug that was being used experimentally with ATC patients. Unfortunately, dad was only able to withstand one treatment. At that point, he was so disoriented, weak, and scared that we admitted him to the hospital. His heart rate was also extremely high and could not be brought down. This was mid-May 2005. The oncologist told us that my dad had 3 weeks or so to live.
During this period, I was still living in Denver. By profession, I am an attorney. I lived out of a bag, making weekly trips home to be with my family. However, I made my dad's funeral arrangements before I went back to Denver, knowing that the next time might be to bury him.
The first week of June, dad's oncologist told me that he did not have much time left. I was stunned, shocked, and completely disconnected from this bombshell, although I had expected this moment for the last two months. When I returned to Denver, I quickly managed to pack up my house and rent it. I came back home to Chicago on June 8th. My law firm allowed me to work remotely for 8 weeks and went to great expense to set up a virtual office for me in Chicago.
When I arrived at my father's bedside, he was sedated and seemed disoriented. He asked if I was his wife, although my mom was right there.
Then I had a few moments alone with him. I held his hand, I cried, and I told him how much I loved him, and that it was okay for him to go. I told him I would make sure mom and our older disabled sister were taken care of. Then he opened his eyes and said he knew I would take care of things. I asked him how he knew and he said because you are smart and I trust you. Then he closed his eyes and never recognized me again.
He died at 2:00 a.m. on June 12th in the hospital. My mom had just fallen asleep holding his hand and I came into the room to find that he had passed away. It was a terrifying moment for me to find my father dead. I put my hand on his chest looking for that labored breathing I had come to know. I touched his hand and it was still warm. I knew I needed to wake my mom but did not want to alarm her. I also wanted a moment with just him again. I held his hand and felt relief, for his suffering had finally ended. I then got the nurse to make the final call and we woke my mom. The doctor came in shortly thereafter to call the time of death. It still seems so surreal to me.
We buried my father on June 16th. I have missed him so terribly and cannot believe he was snatched away from us so quickly and in such an ugly fashion. On the other hand, I am thankful we got to spend time with him and that his ordeal did not drag on for longer. It seemed that he was in no discomfort in the end.
My dad was 72 when he died. He and my mom were married for 45 years. For as much as I know I miss him, I know she misses him even more terribly. They were in love until the bitter end, despite the ugly words the ATC brought forth from his mouth.
I remained in Chicago and resigned my position with my firm in August 2005. I believed it was necessary for me to be in close physical proximity to my family for the sake of all of our healing as a family. My employer showed nothing short of complete compassion. I could not have made a better choice.
As you can all imagine, the holidays have been immensely difficult. I think of him every day. I hurt in my soul for the suffering I know he went through. I hurt that I could not have done more to try to save him. In short, my dad was my hero and the best father anyone could ask for.
January 30, 2006
Just thought I would let you know about my situation, as I know when diagnosed with Anaplastic, the prognosis is grim.
I am male and at the time I was diagnosed I was 51 (54 now). I live in New Hampshire.
I was diagnosed in July 2003 after the lump on my neck grew to about 5 centimeters in about 2 months.
Underwent surgery in August 2003 and had a great surgeon in Boston. Well, the surgery went very well. Even though my thyroid was removed completely, as well as the tumor, a muscle in my neck, and some nerve endings, it was pretty certain that all the cancer had been removed without damage to anything else and without the removal of any of my parathyroids.
I underwent daily radiation treatments (5 days a week) for 7 weeks in October and November of 2003.
I went back into the hospital for a radioactive iodine treatment in January 2004. The radioactive iodine treatment was to clean up or make sure that any remaining thyroid cells were destroyed. I needed to come off my thyroid hormone pills (levothyroxine) for a couple of weeks, as well as maintain a low-iodine diet so that when I received the radioiodine capsule, any thyroid cells would take up the iodine because they had been deprived of it. I remained quarantined in the hospital for 4 days [after the radioiodine] and could not come into close contact with other people for about a week afterward as I was "hot" (radioactive).
Then I was sent in for a WBS (whole body scan) and thankfully didn't "light up" anywhere. Quite the experience.
Anyway, the surgery and radiation treatments probably would have been sufficient but I guess most doctors, or at least mine, say that the radioactive iodine treatment is something that is recommended as part of the treatment plan for ATC, although not necessarily imperative. I went into detail about this treatment as I don’t see much mention of radioactive iodine treatment on the site.
I have been cancer-free since then (recently celebrated 2 years since my last treatment) and have periodic CT and PET scans to check to make sure that the cancer cells have not come back. As most of you know the chance of re-occurrence is very high.
Anyway, in my long-winded way, I just wanted to let other people know who may have been recently diagnosed that, although the statistics tell you that the survival rate for ATC is very low, there are survivors. I am living proof of that.
Thanks for your interest. I hope this helps others with ATC. And frankly, it has helped me. It had taken well over a year to even think about talking to other survivors about my story.
And please, never underestimate the power of taking control of your treatment in an aggressive manner. An aggressive and positive approach helps immeasurably in fighting this disease.
Top of page
What is it like to be on a clinical trial? Do you have contact with others on the trial?
I'm the first patient in this clinical trial at Henry Ford Hospital, so I have not talked to anyone else. I'd really like to hear from another person (even if they are at another site) that is enrolled in a Sorafenib study.
What is the goal of the trial?
They tell me the objective is not a cure but the reduction of the speed of the progression of the disease. It is simply to buy time.
How is your trial financed?
The National Cancer Institute and possibly Henry Ford pay for the drug. I have to pay my own doctor's visits, tests such as CT scans, transportation, and lodging.
What is the relationship between your local doctors and the trial doctors?
My doctor can email or call either the doctor treating me there or the coordinator of the study, a RN. I was sent home with the tests the study required and my treating doctor wrote a standing order for them. I get my CT Scans at Henry Ford Hospital in Detroit where I must return every 28 days. I get the CT Scans every other visit or every other month. I have to bring in my pill bottle with me and get a new one every 28 days.
What advice do you have for when to leave a conventional treatment and join an experimental one?
I have no real advice about when to leave conventional treatment. In my case, I completed conventional treatment and at the first sign of metastasis, I researched clinical trials and decided to go with one near my sister.
My oncologist was very supportive and coordinated having my records sent down there. She appreciated all the information I provided and was not offended by it.
So, I went down there once conventional treatment failed. Others may want to enroll in the clinical trials sooner but you have to qualify for the trial. In my case, the study requires patients to have a measurable lesion no smaller than 1 cm. so that they can measure the results of the drug. There are other requirements that one has to meet as well such as a life expectancy of over 6 weeks.
I was diagnosed with ATC at the beginning of August 2006.
In my case, the tumor was caught early and a complete thyroidectomy and debulking of the tumor kicked off my treatment. My surgeon basically handed me the pathology report, which he thought was pretty much hopeless (read: death sentence) and gave me two phone numbers for referral. That was the last visit I had with him.
After the shock wore off, I got busy and got into treatment promptly at the radiation oncology department at a military medical center in Maryland.
That was followed by 6 weeks of radiation along with chemotherapy (Adriamycin -doxorubicin). The radiation was carefully modulated and was a combination of XRT and IMRT with two treatments a day for a total 55 treatments adding up to 66 Gr. It was rough, but I got through it OK with strong pain medications.
So far, the tumor(s) have apparently stopped (read: fried). Before and after CT scans show no disease progression, which is very good.
Note that every single ATC case varies greatly, along with the patient's ability to tolerate aggressive treatment. It is important that treatment is obtained promptly and from a TEAM of doctors (not a single one!) that has treated ATC in the past. I have between 5 and 7 doctors looking at my case at a given time from different specialties.
I have a PEG (Gastric Stoma for feeding) but no Trach, which my civilian surgeon thought was necessary. The thorough debulking and prompt radiation eliminated the need for a trach in my case. However, difficulty breathing is often the symptom that prompts discovery and treatment, usually late in the process. In that case there may be no alternative. My radiation oncologist had treated four other ATC cases: One had no response to treatment, and literally died on the table. Another lived for 11 months in spite of late treatment and advanced age. So far I appear to be his "wonder child" at age 62 (!)
I received treatment at through a federal cancer research center’s clinic. I am retired military and was eligible for treatment at the military hospital where the clinic is located. Other sites throughout the country are also experienced in treating ATC.
Best wishes for a positive outcome.
Story of Hope: My Dad’s (Bill B.) ATC Journey
By Mary Catherine B. P., June 2007
It started in October 2006 as a tremendous whirlwind and rollercoaster that I never hope to ride again. A rollercoaster that we’re all looking forward to jumping off soon when my Dad is healthy and well again.
On October 9, 2006, My Dad (greatest man I ever met - William (Bill) B.) goes to the Ear, Nose & Throat (ENT) doctor in Mississippi to see about finally getting rid of this "cold" he's had off and on for a few months (accompanied by hoarseness, difficulty swallowing and drainage/phlegm). We never expected what was to come of this ENT visit -- not in a million years. They found a lump on his thyroid -- and the doctor immediately took a Fine Needle Biopsy. And the waiting begins –
Results of the biopsy come in on October 13 (Friday the 13th no less!!) and suddenly our worst nightmare comes true – it's malignant. We were all in a state of shock but also comforted somewhat by the thought that thyroid cancer is one of the least aggressive and easy-to-cure cancers out there.
As the days went by, we had done a little research and all of a sudden it is clear to us that there are in fact multiple TYPES of thyroid cancers, and they run the FULL spectrum of outcomes (yes, still one of them is one of the easiest to cure yet one type is one of the most aggressive and difficult to cure of *all* cancers). I'm constantly praying..."PLEASE let it be one of the easy-to-cure ones."
The preliminary biopsy results showed undifferentiated. I later learn that's a nice way of saying Anaplastic (i.e., another hurdle to cross). I'm terrified. Thankfully, the doctor agrees to put us in touch with a team of doctors at a thyroid cancer treatment center in another state. We flew over as soon as they could see us and tried to remain positive and have faith that through God, our doctors, and prayers — we will continue to move mountains and have Daddy well and home soon. We met with the Head & Neck group who told us my Dad could have two to four weeks to live and then the radiation team there told us treatment would really be pointless because everyone with ATC dies. I wasn’t sure if I should curl up and cry or simply punch him in the face quite frankly. It became clear after a series of tests and several disappointing moments, our journey had begun and there was no turning back.
I can’t even begin to tell you how frustrating those first few weeks were. I believe much of the frustration comes from all the *waiting* — especially when you are dealing with such an aggressive and time-sensitive cancer. The doctors were debating whether Daddy has Anaplastic Thyroid Cancer, Poorly Differentiated Thyroid Cancer, or some sort of Thyroid Sarcomatoid. At this point what we do know is that Daddy's cancer is Big, Aggressive, and Rare. Because of that, we knew we had to get started on treatment ASAP!
Things weren’t going quite as we had hoped at this particular institution so we researched multiple other institutions for a new team of doctors with knowledge about our case and also who understand a will to live and a will to beat this thing! Luckily, we found our new doctors at another major thyroid cancer treatment center. This was the best decision we could’ve made along the way.
We met with the new doctors on November 2. Filled with fear and anxiety that we were now almost a month after diagnosis and nothing had been done, we continued to march forward and have faith. The surgeon confirmed (again) that Daddy's not a surgical candidate due to the size and location of the tumor. Not what we wanted to hear, but there's something to be said for professionalism and compassion that makes a difference. He immediately scheduled us with the resident thyroid cancer specialist and endocrinologist, the medical oncologist, and the radiation oncologist. The team is fantastic and we all felt very comfortable. One thing we've learned, if you're going to be going through a very difficult situation, you want to be surrounded by a medical team you trust to go above and beyond to "fix it" –
Before starting treatment, Daddy had to go to the dentist and also get a PEG (feeding tube) and a port (two things that I would recommend to anyone starting down this ATC journey!). All systems go and we were ready to begin treatment, which consisted of 66Gy of IMRT radiation (given once a day, five days a week for 33 total treatments) and 60mg of Adriamycin chemo (given once a week in 20mg doses for three weeks).
I have to say (again) that I've been so very proud of my both my Mom and Dad over the course of this journey. We have hit quite a few bumps (from being told you could have "weeks" or "months" to maybe "years" left on your life and to still not really know). It has been miserable and hard and at times we have wanted to curl up in a ball as if we have been punched in the face. But he is so strong (as he always has been). It promises to be a difficult journey but I have the utmost faith that we are up for the challenge and Daddy will pull through. He always does. He simply has to because he is our "Daddy" and we've got too many things left to do!!
One of our doctors reminded us that miracles DO happen and it all depends on how Daddy and the tumor work it out (how he responds to chemo and radiation, etc.). My Dad is a fighter. He knows what he wants and he goes after it. I know in my heart that he wants to beat this - and I am comforted by that.
My sister keeps telling me that faith, even as small as a mustard seed, can move mountains. Every time I look at my Dad's face, I am reminded of just how precious that faith is and just how badly I want that mountain to move. I created a blog to keep family and friends updated on Daddy’s progress. I named the blog Bill's Mustardseed — because I believe that's the journey we are on here— to move mountains!! Daddy's been the strength of our family for as long as we can remember. I know that strength will be instrumental in his recovery.
The months of treatment were difficult. We bunked up in a hotel room – my parents 8 hours from home and me 5. We are all blessed to be surrounded by such loving friends, family, colleagues and are so grateful for the overwhelming support we have received with people’s thoughts, prayers, e-mails, calls, visits, lit candles, chants, good karma, light, positive energy, words of encouragement, etc. coming our way. My Dad and I both celebrated our birthdays in the hotel. And Thanksgiving and Christmas for that matter. Friends and family flew or drove over often and my family will never be able to express our sincere gratitude. With a tear in our eye, smile on our face and hope in our hearts, we ended treatment on December 29.
Scans on January 26, 2007, showed the tumor had shrunk upwards of 90% (though still not good enough for surgery) and the cancer had not spread to any major organs (lung, brain, liver, etc.). We did have a slight scare on the PET scan for the hilar lymph nodes and had to go in for another biopsy. We tried to remain positive. Our doctor called February 1 to give us the results – LYMPH NODES ARE CLEAR! To quote him, “this is good news!” – I love that. In fact, my response simply consisted of “I LOVE YOU!!!!!!” I'm quite positive he thinks I've lost my mind!!!
I could hear the excitement in Daddy’s voice when I called to tell him. I wanted to jump through the phone and give him and Mom the BIGGEST HUG!! We were thrilled, as you can imagine.
Scans again in February and March and May left us a few scares on the PETs so the waiting was hard… but ultimately, we are living what is quite possibly the most real and fantastic miracle in our lifetime. Daddy’s had a “remarkable response” to the chemo and radiation treatment. In fact, he said Daddy’s in the top 1-5% as far as successful response. The last PET showed the tumor seems to be completely inactive. Ultimately, the scans confirmed that there is “NO EVIDENCE OF RECURRENCE OR METASTATIC CANCER” ---- In plain English, that means he is essentially “cancer free” – with no evidence of the cancer in the neck or in any other part of the body. In even more plain English – that means OUR MIRACLE CONTINUES.
Our doctor gave my Dad a book and signed it, “To a true survivor… in every sense of the word!” – we all teared up.
I've learned a lot about ATC over the last months. Quite a bit enough that sure, I understand we’re not out of the woods yet. And sure, I understand that with ATC, you never know what it will do or how it will react or respond or when it might come back with a vengeance. But I like the idea that we might actually get to breathe for a few months without wondering what will happen the next day or how something might change before the end of the week. It will be a nice change of pace. Next set of scans will be in October 2007 (one year after diagnosis!!). So we wait. But we wait with even greater smiles on our faces and hope in our hearts.
Meanwhile, Daddy got the clearance to remove his PEG and his Port! He was so excited about that and today is doing great. I talked to him this week and he was laying pine straw. He has always loved working in the yard and I love that he is able to do that again.
So here we are. August 13, 10 months after diagnosis and he continues to have clean scans. It is an amazing feeling when you realize just how fragile we all are. And when you realize you’ve been given a second chance at life. That’s what I believe we’ve found here. I’m confident it is largely in part due to the love, support, prayers – and faith in the Mustardseeds!!! – that you’ve all shown. It does in fact take a village. In the beginning, I didn't know what to think. I wanted so badly to believe things would work out and Daddy would be well. It was part faith, part stubbornness, and part just plain wanting something so badly and not knowing how to accept it couldn't be possible. We’ve been fortunate to find the right doctors and maintain our faith. I look forward to giving everyone an update in October and hope and pray our miracle continues.
Good news is that the medical community is making progress with this terrible disease. It is my sincere hope and wish that we can keep all the courageous and wonderful people who have been affected by ATC well enough until we can eventually find a “for sure” cure. Miracles do happen, right?Top of page