Mary Van Diepenbos
Editors Note: I had the pleasure of meeting Mary, a woman with the Anaplastic form of thyroid cancer, at the 2009 ThyCa conference in Boston. Using Mary’s own words, it is my pleasure to tell the story of her thyroid cancer journey with amazement and congratulations and most of all – as a testament to the fact that we all have the ability to survive and thrive even with the worst (or so we are told) of circumstances.
Mary Van Diepenbos’s thyroid cancer journey story begins in much the same way as it did for many of us. On Boxing Day 1994, when Mary was 56 years old, she noticed a lump on her neck. Two weeks later, she had a neck dissection to remove a large tumor and three lymph nodes. A few days after that she was told by phone that the pathology was positive for thyroid cancer.
Once Mary got that phone call she contacted the American Cancer Society for a package of information (Mary lives in a town outside of Grand Rapids, Michigan). On the same morning she received the envelope of printed matter from the cancer society, she noticed another lump on her neck.
Mary said, “I tore open the package and read: ‘There are four types of thyroid cancer.’ I ticked them off as I read each description: Follicular – no, that didn’t fit; Papillary – no, that one either; Medullary – not that one; Anaplastic – yes! I couldn’t believe what I read: ‘Does not respond well to treatment. Most patients die within six months.’ We were numb. We were prepared for cancer, but not this.”
It is said that thyroid cancer is the form of the disease with the largest range of outcomes, based on the type diagnosed. That is, Papillary type (the most common type) has an almost 100% survival rate for the majority of patients. Whereas, the very rare Anaplastic type is completely at the other end of the spectrum. Normally this type spreads rapidly and is very hard to treat. Although sharing some characteristics with papillary disease, it is thought to develop from an existing follicular cancer that further mutated, that is, became undifferentiated over time. It is believed that Anaplastic cancers are likely long existing tumours that were left untreated and suddenly became aggressive. The mechanism that makes tumours switch to this type is not currently known. About 1.5% of cases are Anaplastic.
Mary and her husband soon had the follow-up appointment with the surgeon who confirmed that she did in fact have the Anaplastic form of thyroid cancer. The initial tumour and three lymph nodes removed were positive for the disease. He assured them that the new lump was an abscess from the surgery and he scheduled an appointment with radiology for external beam radiation treatment.
A week later Mary had two more lumps. The surgeon had another look and made a phone call to assure that radiation treatment could begin the following day. An ultrasound appointment also confirmed that all three new lumps were indeed new tumours.
Mary had four weeks of external beam radiation including all parts of her neck and upper chest. This was followed with two weeks of high-energy linear acceleration electron radiation. (According to the National Cancer Institute, the stream of radiation produced via electron linear accelerators damages the genetic material of the cancer cells, rendering them unable to continue dividing.)
“It wasn’t long before the radiation took its toll. I was very tired, sleeping about 16 hours a day. I had a hard time swallowing and keeping food down. My salivary glands dried up. I carried a water bottle everywhere I went.”
That very low point also seemed to be the turning point. One day Mary had the thought that the tumours seemed to be shrinking a bit. Her doctor had the same thought. The surgeon confirmed that the central mass was gone. He said, “In my years of practice I have seen two or three cases that are really miracles; and you are one of those.”
Mary’s next visit was to a medical oncologist who suggested that she would certainly require chemotherapy once the tumours started to grow again. He’d wait for evidence for that change in condition.
He’s still waiting! On the 4th of July, 1995 Mary and her family celebrated the 6 month point. They beat the mortality statistic and passed that significant milestone. The following month her doctor made it official and told her she was in remission.
It took a full three years for Mary to feel she had her stamina back after the aggressive treatment she had received. At that point she asked whether she should have a thyroidectomy as her initial surgery only removed the metastatic tumor. The oncologist advised her not to as she would have a great deal of scar tissue from the previous surgery and radiation.
At Mary’s five year anniversary appointment her doctor said “So few people get to this point with Anaplastic thyroid cancer, there’s no protocol for follow-up. I would like to see you in a year.”
In January 2001, Mary’s family doctor wanted to drop the dosage of her thyroid replacement hormone. She’d been on a very suppressive dose to help keep the cancer under control. When he explained his rationale for reducing her dose, it sounded reasonable. He lowered the dose again in February. But, when he suggested in April that he lower it still more, Mary said ‘no’. She felt this may not be a wise course of action for her and “had visions of the lowered dosage freeing every one of those little cancer guys to run all over my body and do their thing again.” Instead she contacted a well-known endocrinologist who specialized in thyroid cancer. He studied all her medical reports and agreed to take her on as a patient.
In September 2001 Mary saw her new specialist. He was interested in the fact that she’d had a lot of treatment, but none of it was conventional for the primary source of the problem, that is, her thyroid gland. She’d had a CT scan and ultrasound test, neither of which was able to find evidence of a thyroid gland, thus some had presumed she no longer had one due to the aggressive radiation she received. Nevertheless, the new doctor ordered a test dose of radioactive iodine treatment (RAI) in order to conduct a Whole Body Scan. The scan did in fact indicate that she still had a wafer thin thyroid gland -- the size of a lima bean.
Back to square one. Mary then had very successful thyroidectomy surgery with a new surgeon. The pathology report indicated no evidence of cancer in the thyroid gland or the lymph nodes around it.
Finally in early April 2002, Mary had RAI treatment to ablate any remaining thyroid tissue. Almost seven years had passed since the time of her diagnosis, yet this was her first treatment dose of this type. In October she had a follow-up scan that was negative for any remnant or recurrent tissue.
Mary says “It’s been 15 years since I was diagnosed with thyroid cancer. I am considered ‘cured’ of the Anaplastic cancer – I’m not dead. In the last 7 years I have been monitored with various CT scans, PET scans, bone scans and ultrasounds. My blood work continues to show Tg antibodies, an indication that something microscopic is still lurking. Taking my daily Levoxyl tablet is a constant reminder that I’m living with a chronic disease. So though I am a long-term survivor, follow-up and awareness are still a way of life.”
Editor’s Note: Mary’s pathology report following her 1995 surgery was prepared by the director of pathology at her hospital in Grand Rapids Michigan, and the diagnosis was confirmed by consultation with the Mayo Clinic. In 2001, Mary’s slides were re-examined once more and the microscopic description again confirms a diagnosis of Anaplastic thyroid cancer.
Mary’s advice for coping with thyroid cancer
One important lesson I learned is that having cancer is not a passive ordeal. There are plenty of things you can do to not only help you get through it, but also help you to be pleasant through it.
- Learn as much as possible about your type of cancer, so you can make an informed decision. Keep asking questions until you understand and get the answers you need.
- If need be, get a second opinion.
- Ask for copies of the test results. You may not understand all the implications, but you may pick up on some key phrases that help in sorting everything through.
- Keep a journal of medical visits, treatments and phone conversations. It will help you keep track of which doctor said what when.
- Have someone with you at all your doctor visits. Two sets of ears are better than one; what one misses the other may pick up. The person who goes with you can act as a scribe too, taking notes on what is discussed. It will also give you someone with whom to talk things through afterward who knows what the conversation was. Verbalizing your thoughts helps you sort them out and put them in the proper perspective.
- Let people know!! They cannot respond if they aren’t aware of what’s going on.
- Some of the things you will have to go through may be very unpleasant. That is not a license for you to be rude to your caregivers. They are all on your side (and this includes the medical people) to help you fight this cancer that has invaded your body.
- Get enough rest. Some days that may be your full-time job. Tiredness is a natural way for your body to let you know it’s so busy working on the healing process; it doesn’t have time for anything else.
- Admit your emotions. This is a time when journaling is helpful; putting it on paper helps to sort through the various feelings whirling around in your head. Once they are identified they can be addressed. Allow for emotional swings. Mourn what you’ve lost.
- Accept help. Gracious receiving is a gift. It’s one we too often haven’t cultivated. Accept each offering as it is intended. There will be some very inappropriate gestures; however, they are much better than if the person had not tried at all.
- Express gratitude. Being aware of and acknowledging all the kindnesses, big or small, shown to you will give you a measure of pleasure no matter what you are going through at the time. It will make you aware that not all of life is bad.
- Count your blessings. They are there and making a conscious effort to be aware of them will be a blessing in itself.
- Laugh. Laughter is such a great safety valve.
- Use the arts. Listen to music or literature you enjoy. If you are of a creative bent, express yourself in that way. It’s helpful in finding a way to express the things going on in your life.
- Make time for meditation and receive support via your religious beliefs.