Diagnosis: Multiple Myeloma
Date Diagnosed: April 2004
Diagnosis: Multiple Myeloma
Date Diagnosed: April 2004
Christine Behan, breast cancer survivor and the inspiration behind Hugs for Healing patient comfort and care products, shares the story of her TomoTherapySM treatment experience.
Christine and her husband pose with grandchildren on a post-treatment trip to Disney World I thought I was the picture of health until I received a phone call from my doctor in February 2007. When I picked up the phone that day, I didn’t know how radically my life was about to change. It was this phone call that would send my life in a spin, and take me, and my family, on a life-changing journey.
The radiologist on the other end of the phone was very matter of fact. He explained that there was something suspicious within my left breast and referred me to a surgeon, Dr. Jessie MacVicar for a breast biopsy. I assumed it was a routine procedure which would produce normal, (meaning non-malignant), results. I was in shock when I received the news that there was, in fact, a growth…and it was malignant. Everything seemed so surreal…this happens to others, but not to me. I am a nurse…a caregiver, I cannot be the one with the illness…I cannot have cancer.
My surgery was in March, after which I was referred to Signature Brockton Hospital to meet with Dr. Mark Vasa, the chief of Radiation Therapy. I remember going to the hospital for the initial meeting with Dr. Vasa, but do not remember any details of our meeting. I was completely numb from my diagnosis. Even though I’m sure the doctor explained everything to me, including my treatment options, my mind was spinning and I did not comprehend what he said. There was a whole new vocabulary to learn - malignancy, biopsy, radiation, chemotherapy, TomoTherapy.
What followed was a complete blur to me. The diagnosis, biopsy and surgery all seemed like a dream, or rather a nightmare, and I really hoped that I was going to wake up from it. In a subsequent meeting with Dr. Vasa and my oncologist, Dr. Stephen Mayer, my treatment options were explained in detail. After outlining my options, the doctors and I agreed that the best course of therapy would be TomoTherapy, a newly-offered treatment at the hospital.
Because I live so close to Boston, I could have opted to receive my treatments at another hospital, but after considering the pros and cons of each type, I felt very confident in my decision to proceed with TomoTherapySM.
I began the first of my thirty-three treatments in April of 2007. Before the first scheduled session, I received my tattoos, which would be used to guide the laser to the precise location of the tumor. Although I was still numb from my diagnosis, I found myself interested in how TomoTherapy differed from other treatments. I remember reading what literature I was given from my doctor, as well as diligently researching on the Internet. I was so impressed with the technology, and thankful that I was a match for this state-of-the-art technique. The fact that this machine would be able to pinpoint my cancer cells and destroy just them, rather than affecting a larger area, was comforting.
The day of my first treatment in the TomoTherapy® machine was very frightening for me. I had done the research, asked my questions, but still I felt unprepared. I walked into the room and got positioned and anxiously awaited the beginning of the session. What an unexpected surprise it was when the technician came over and placed a heated blanket on top of me! It was soothing and warm, and gave me a sense of comfort as the machine started and the noises circled around me like a halo.
The sessions became more tolerable as I got into a routine. Every day I would grab my tote-bag, or life-preserver, as my family jokingly called it. It was a canvas bag that was presented to me on Easter in lieu of an Easter basket, and it was filled with items that my family knew would bring me comfort and peace of mind during this crazy time. It had a journal and pen for me to write down my thoughts, feelings and questions, a stress-ball to squeeze while I waited to be called in to treatment, and my favorite thing of all….a comfortable, gray, zip-up sweatshirt that had the hand prints of my grandchildren and nieces and nephews on it which wrapped me in hugs every time I slipped it on. I also filled the bag with lotion for my skin, and as I made friends in the waiting room I collected the names, phone numbers, and other information of the members of our “cancer club”. This bag became my security blanket, it held everything I needed to feel in control of an otherwise uncontrollable situation.
At the conclusion of my treatments, I met once again with my surgeon. She was pleased with my response to the TomoTherapy treatments, and put me on a five-year maintenance plan of Tamoxifen. She commented on the condition of my skin that had been exposed to radiation, and was extremely pleased to see that there was no scarring, which is a common occurrence in the treatment of breast cancer using traditional linear radiation methods.
I feel very fortunate to have had the opportunity to be one of the first patients to be treated with the TomoTherapy machine at Signature Brockton Hospital. It was the best course of treatment for my cancer and I am confident that I will remain cancer-free due to the care and treatment I received.
Thank you, TomoTherapy, for your innovative, cutting-edge technology!
South Easton, Massachusetts
Chuck Mueller proudly calls Sun Prairie, Wisconsin home. Nonetheless, he and his wife Sandy like to hit the road as often as they can.
“We have wheels,” Chuck says, referring to his Airstream Motorhome. “We want to be mobile.” But when Chuck was diagnosed with prostate cancer, travel plans were forced to take a back seat.
“Oh, you know how it is, I go for my annual physical every five years,” he jokes. But during one of his routine physicals, Chuck’s doctor noticed an elevated Prostate Specific Antigen or PSA, essentially a protein produced by the prostate. A biopsy confirmed a diagnosis of prostate cancer.
“I told them I wanted a booth review, like in football,” he says half-jokingly. But, 72-year-old Chuck admits, “When you get diagnosed with cancer, your life flashes before you. You realize that you are human.”
Chuck was given a long list of treatment options and said radiation coupled with hormone therapy called Lupron sounded like the best route for him. He was referred to Dr. Rakesh Patel*, a Radiation Oncologist at University of Wisconsin, Hospital and Clinics, in Madison. Dr. Patel began treatment with a shot of Lupron two months prior to beginning the course of TomoTherapy® radiation treatment.
“Chuck was a good candidate for treatment on the Hi·Art® system because the prostate is in a challenging location,” said Dr. Patel. “With TomoTherapy, we can deliver radiation helically, treating both the prostate and pelvic lymph nodes concurrently while minimizing radiation dose to the small bowel and rectum.”
Chuck received 28 fractions of radiation, which meant that he returned to UW Hospital and Clinics every Monday through Friday for about 6 weeks. Each treatment fraction lasted approximately 30 minutes, from entering the treatment room to leaving.
Dr. Patel says the daily CTrue™ image, essentially a CT scan taken just prior to each radiation treatment, was used to verify the location of the prostate and normal structures to be sure the treatment would be as accurate as possible each time.
“The daily CTrue image gives us a tremendous advantage because the prostate is often in a different location from day to day, so we can shift the entire plan to address the target. It’s because of the conformal nature of TomoTherapy that we can treat more precisely. The nature of the prostate treatment area is harder to treat on other machines because you do not have this assurance.”
In fact, it’s this daily assurance that Dr. Patel was treating exactly what he saw that caused Chuck’s treatment course to be shorter than if he had been treated on a different radiation delivery machine. “Because we are using TomoTherapy and are more confident in our targeting, it allows us to give a higher dose of radiation in a shorter period of time. Without this targeting capability, Chuck’s treatment would have taken about two more weeks.”
Chuck MuellerDr. Patel says that side effects are also minimized thanks to the conformal nature of TomoTherapy treatments. “In general, patients receiving any kind of radiation to the pelvis might experience nausea and diarrhea. With TomoTherapy, we’re able to limit the amount of radiation to the small intestine and bowel so we see fewer incidences of major side effects,” said Dr. Patel.
Chuck says that while he did experience some mild side effects including diarrhea and more frequent urination, he did not have any pain during treatment. “My wife said she didn’t notice that treatments slowed me down at all,” laughed Chuck.
Now about 8 months post-treatment, Chuck says that the mild side effects disappeared some time ago. With a clean bill of health (Chuck’s PSA at diagnosis was 17; currently it’s 0**), he’s grateful to Dr. Patel and to the treatments made possible by the Hi·Art system. “TomoTherapy is the only way to go,” he says matter-of-factly.
With a renewed sense of freedom, Chuck and Sandy Mueller have taken up traveling once again. For their next trip, they’ll drive the Airstream down to Florida, then embark on a truly off-roads adventure.
“We’re treating the whole family to a cruise. All three of our kids and their spouses, plus seven grandchildren,” Chuck says with a grin. “It will be quite a trip. We’re looking forward to it.”
*Dr. Rakesh Patel is Assistant Professor of Human Oncology with the University of Wisconsin Medical School Faculty. He carries out treatments at UW Hospital & Clinics in Madison, Wisconsin.
**Chuck’s follow-up regime includes check ups every three to six months and four shots of Lupron each year.
This article is posted with permission from writer Alice Ryan, the Cambridge News and the family of John Stewart.
The phrase “fit family” could have been coined for the Stewarts. Mum and dad are keen rowers; both their daughters are members of a triathlon club. And, as Saturday dawns, they won’t be slumbering under the duvet - they’ll be heading for the swimming pool, ready to rack up another 80 or 90 lengths.
“It’s not always easy getting out of bed at 7.30am on a Saturday,” admits 13-year-old Jessica, laughing. “But once you’re in the pool it’s fine. And we all know we’re doing it for a good reason.”
The Stewarts, who live in Girton, each pledged to swim the equivalent of the Channel to raise cash for ACT, Addenbrooke’s Charitable Trust - more than 5,600 lengths between them.
It is, explains dad John, a way of saying thank-you: diagnosed with prostate cancer less than a year ago, he is being treated at the Cambridge hospital. And he says he couldn’t have asked for better care.
“When I was diagnosed it was a huge reality check,” says John, 46. “My first thought was: ‘What about the girls? Will they grow up without a daddy?’ But the team at Addenbrooke’s have been amazing. I’ve just finished my radiotherapy and, to be honest, I quite miss seeing them every day.”
John, a businessman, first went to the doctor in January. “I found myself needing to wee more often,” he explains. “But it creeps up on you really slowly: you don’t notice that you’re getting up twice a night, then three times - you just starting thinking that’s normal.
“My wife Catherine and I both row in the Bumps and I can remember having to jump out of the boat more frequently than usual. But I prevaricated: it wasn’t until Christmas, when we stayed in a very old house, that I thought: ‘I really have to get this checked out’. I was having to creep down the creaky old staircase four times a night.”
John’s GP immediately referred him to Addenbrooke’s for tests, including a biopsy. The results showed he had an aggressive form of prostate cancer.
A disease of a male reproductive gland, it is the most common form of cancer among men in the UK. The condition kills about 10,000 Brits each year but, thanks to advances in treatment, about seven in 10 newly diagnosed prostate cancer patients now survive beyond five years; in the 1970s it was only three in 10.
“Telling the girls was the hardest thing,” says Catherine. “We waited until we knew the extent of the cancer; thankfully John didn’t have any secondaries. Both the girls have been brilliant. It made us think: ‘What if?’ . . .
Three days after John was diagnosed I was cycling back from the school run and a car reversed out, nearly hitting me. I was going quite fast; it could have been very nasty. That confirmed my view that you have to take each day as it comes - because you never know.”
Both John and Catherine credit staff and pupils at St John’s School with supporting their daughters, Jessica and her younger sister Esme, 9, in the wake of his cancer diagnosis. Running their own company, Histon-based IT security firm Signify, the couple also say business partner Dave Abraham has been “absolutely great”.
“We’ve been lucky to receive some amazing support,” adds John.
“From the beginning we agreed we wanted to do our bit: we want to raise awareness of this disease. If men do notice they need to wee more often than normal, they should go to the doctor and just have it checked.”
Prescribed a combination of medication and a course of cutting-edge radio treatment, known as TomoTherapy, John first had to have surgery to relieve problems with his urinary system.
“I’ve learned that it’s no laughing matter,” he adds. “It got to the point where I couldn’t go on a long car journey; if I had a pint of beer I knew I’d have to wee four times to get rid of it - and it would be painful all four times. It’s not something to joke about: it can be really embarrassing and, if you can’t control it, it can be humiliating too.”
Before beginning TomoTherapy, a high-tech form of treatment which uses a special scanner to target radiotherapy, John went on a family holiday to the Middle East. It was a much-needed break. But, on their return, John came down with a cold - which turned into something far more sinister.
“To start with I thought he had man flu,” explains Catherine. “But he ended up in Addenbrooke’s with pneumonia. That’s the only time he took time off work, except when he had the surgery. He’s kept going through it all. But that’s what you have to do, keep going.”
Esme adds: “It was horrible seeing daddy go off to hospital. I think that was one of the hardest things.”
Wanting to get fit for his two-month course of radiotherapy, to help combat the fatigue which can be a side-effect, John struck upon the idea of doing a sponsored “Channel crossing”.
Deciding to swim 22 miles (that’s 1,416 lengths) in between treatments, his wife and daughters all decided to join in; between them, they have just completed the equivalent of four Channel crossings - and raised about £2,000 for ACT.
“It has been great for us to do something as a family,” adds Catherine. “We’ve always quite liked a challenge! We were worried that, only being nine, Esme might not make it. But she was amazing: if she’d only done 40 or 50 lengths, she felt like she hadn’t had a proper swim.”
Completing the challenge in stages, the Stewarts got into a routine of swimming first thing on a Saturday morning. “I really think it helped me through the radiotherapy,” adds John. “If I hadn’t swum for maybe three days I found I was far more tired afterwards. That made it harder to get back in the pool but, once I had, I always felt better.”
John now has to wait until January for tests to show how successful the TomoTherapy has been.
“The money we raise will go towards expanding the TomoTherapy service,” explains John. “It allows the radiotherapy to be targeted, which keeps side-effects down - that’s what allowed me to carry on working the whole time.”
The Stewarts are now planning a marathon cycle ride. “Sometimes things like this make you closer as a family,” adds Catherine. “I definitely think that’s true in our case.”
You can still sponsor the Stewarts on http://www.justgiving.com/stewarts-of-girton-for-act.
84-year-old Günther Christian was told radiation therapy was not an option. To beat a recurrence of cancer, surgeons recommended removal of his left eye, socket and jaw. Mr. Christian’s family sought a second opinion, and found a new way of seeing things at Germany’s University Hospital of Heidelberg.
In 2001, Günther Christian was enjoying his life’s work as owner and keeper of his family’s fruit orchards in the beautiful countryside of Dieburg, Germany. He had recovered well from Gamma Knife® treatment for a head tumor (a cavernous sinus meningioma).
By 2006, Mr. Christian thought he was cancer free. Instead, pressure began to build behind his left eye, causing the eyeball to bulge. Double and triple vision followed. Finally, Mr. Christian could no longer work in his orchards. He scheduled a visit to a nearby physician.
Mr. Christian’s diagnosis was squamous cell carcinoma; a tumor was found in his upper jaw extending behind his left eye.
“The doctors in Frankfurt wanted to do surgery,” Mr. Christian says. In fact, the surgical option presented involved removal of his eye, socket and jaw. Mr. Christian faced a decision requiring a complex, emotional balancing of the possibility that surgery might extend his life with marked concerns about the quality of that life.
Mr. Christian’s niece questioned whether the risks of such extensive surgery were justified for her 84-year-old uncle. She approached a local physician in a search for options and was referred to University Hospital of Heidelberg, and radiation oncologists Prof. Dr. Dr. Jürgen Debus and Dr. Florian Sterzing.
“Mr. Christian’s surgeons recommended a surgery that would have amounted to removing the eye and much of the left side of his face,” Dr. Sterzing says. “Was this a viable option for an 84 year-old man with multiple additional medical problems? I’m not sure.”
Radiation oncologists at University Hospital of Heidelberg examined options for treating Mr. Christian with radiation therapy; his case was a complex mix of constraints and challenges.
“He had received radiotherapy using Gamma Knife® treatment for a previous, unrelated tumor,” Dr. Sterzing says. “His left optic nerve had received the maximum allowable dose of radiation. The squamous cell carcinoma tumor was displacing the left eye, creating a painful pressure.”
Mr. Christian’s treatment required precise delivery of radiation to spare the left optic nerve. At the same time, the pressure behind his left eye and the resulting protrusion of the eyeball made conventional immobilization devices too painful to use during radiation treatments.
The University Hospital of Heidelberg team said immobilization was difficult because the tumor had pressed the eye forward and they worried Mr. Christian would not be able to tolerate the rigid fixation device usually required for IMRT (intensity-modulated radiation therapy). Instead, a very soft head mask was used.
However, since even small movement can affect the accuracy of radiation delivery and resulting dose distribution, the soft head mask could hinder clinicians’ efforts to control exactly where and how much radiation is delivered to the tumor and surrounding healthy tissues.
Prof. Dr. Dr. Debus and Dr. Sterzing believed the TomoTherapy® Hi·Art® treatment system would offer the precision of radiation delivery required to spare the optic nerve while effectively reaching the tumor even when the patient couldn’t be totally immobilized.
University Hospital of Heidelberg radiation oncologists chose TomoTherapy® because the daily image guidance capability allowed them to determine the exact location of the tumor and optic nerve immediately before each treatment session.
“We see a lot of head and neck squamous cell carcinoma,” Dr. Sterzing says. “But this situation was unique. The combination of radiation from previous Gamma Knife® surgery coupled with the difficulty with immobilization…the fact that TomoTherapy has daily image guidance was crucial. It enabled us to correct immediately for movement.”
In addition to radiotherapy, Mr. Christian received antibody treatment with cetuximab. This antibody treatment is known to have synergistic effects with the radiation and is better tolerated than chemotherapy.
Antibody treatment actually can increase the effectiveness of radiation therapy. “In the cell itself, the antibody blocks receptors responsible for tumor cell growth,” explains Dr. Sterzing.
Mr. Christian completed 30 sessions of radiation with the TomoTherapy Hi·Art treatment system at University Hospital, Heidelberg.
Mr. Christian had a skin reaction to the antibody infusions and experienced discomfort lying still for extended periods of time during radiation treatments. However, uncomfortable side effects commonly associated with radiation therapy were conspicuously absent.
“TomoTherapy was 1,000 times better than surgery,” Mr. Christian says. “I feel good and I’m happy.”
The University Hospital of Heidelberg clinicians are pleased as well with the oncological result of Mr. Christian’s treatment. “At the moment, we’re seeing complete remission,” Dr. Sterzing says. “One goal was sparing the optic nerve; the patient has full vision in the eye. No nausea. Swelling and protrusion of the eyeball had been 1.5 centimeters. Now, it’s completely gone.”
A CT scan six months after TomoTherapySM radiation treatments ended showed no tumor. For ongoing follow-up, Mr Christian will visit an ear, nose and throat specialist quarterly.
Since its installation at University Hospital of Heidelberg in March, 2006, Prof. Dr. Dr. Debus, Dr. Sterzing and their team have treated 300 patients using the TomoTherapy Hi·Art treatment system.
“Our patients have ranged from 5 years to 90 years,” Dr. Sterzing says. “The value of TomoTherapy is especially apparent with very complex cases….large tumors, close proximity of organs at risk. Situations like Mr. Christian’s where a patient has received radiation therapy previously, or where immobilization is a problem.”
Dr. Sterzing speaks to patients and fellow clinicians about TomoTherapy as a valued tool for treating patients. “It isn’t magic. Sometimes we still lose the fight. But TomoTherapy is an outstanding option, especially for difficult cases. Very good dose distributions are achievable. The daily image guidance gives [clinicians] fewer headaches in planning.”
“TomoTherapy is a safe way to treat with low acute toxicity. Some side effects do occur, but chronic side effects like dryness of mouth with head and neck patients are much less than with standard radiotherapy. We see patients’ recovery is better and faster.”
Mr. Christian is back home in Dieburg, enjoying his orchards, family and friends. He recently celebrated his 85th birthday at a party with his three children, five grandchildren and one great-grandchild.
“I’m happy to be able to take walks again and eat everything I like,” Guenther says. “I’m the happiest person in the world.”
In August of 2009, 45-year-old Mark Montgomery completed his first full (140 mile) Ironman in Louisville, Kentucky. Just over four years ago, he was dealing with the distinct likelihood that distance running of any distance might never be possible for him again.
While shaving one morning in February 2005, Mark noticed a small lump on an upper lymph node by his ear and thought he “might be coming down with something,” like a cold or flu. When a week passed with no illness and no change in the lump, Mark visited a doctor who diagnosed him with a clogged saliva gland and prescribed a course of antibiotics. When the antibiotics didn’t help, Mark was referred to an Ear, Nose and Throat specialist who scheduled an operation to cut the lump out.
A health-conscious endurance athlete and non-smoker, Mark was in such a low-risk category that no one mentioned the possibility the lump could be cancerous. Though Mark too hoped this was the case, he decided to get a second opinion before surgery. He enlisted the help of his sister, a critical care doctor, who referred him to the Brown Cancer Center at the University of Louisville Hospital where a needle biopsy was performed on the lump.
A week later, in mid-March 2005, Mark was diagnosed with secondary squamous cell cancer. Though this was still a stage one (basic) cancer, the concern was that cell in the neck was a secondary cancer cell, which meant there was a primary cell the doctors had yet to locate. Understandably shaken by this news, Mark was grateful his sister had accompanied him to this initial meeting, as she was able to provide, in Mark’s words, ‘technical support,’ making sure he received the correct information and understood the medical terminology.
Mark was then referred to Dr. Jeffrey Bumpous, an ENT (ear, nose and throat) surgeon and cancer specialist. On March 31, 2005, Mark underwent a bilateral tonsillectomy and a right modified radical neck dissection. The pathology demonstrated 3 nodes with metastasic squamous cancer in the upper neck and squamous cancer in the right tonsil.
Though the doctors removed the cancer, Mark remained at risk for residual microscopic cancer. Therefore, radiation to the tonsil and neck was recommended. A husband and father to a 14-year-old daughter and 10-year-old son, Mark agreed with their recommendation: “Chances were good they got it, but because of my wife and children, I didn’t want to take any chances.”
A tri-athlete and distance runner since high school, Mark had learned the side effects of standard radiation treatment to the neck and throat could include irrevocable damage to and/or loss of teeth, voice box and salivary glands. Justifiably, he was concerned that the athletic lifestyle he had enjoyed for so many years was about to become a thing of the past.
With this information in hand, Mark started asking questions and doing research on the Internet (and with the help of his sister) to find out what he could do to avoid these consequences and maintain his quality of life.
Mark was referred to Dr. William Spanos at the James Graham Brown Cancer Center in Louisville, Kentucky. Mark described Dr. Spanos as a ‘good listener,’ who understood how important it was to Mark that he be able to continue the athletic lifestyle he had come to value.
The radiation team told Mark he was a good candidate for treatment on the TomoTherapy® Hi·Art® system—technology that was new to the hospital at the time.
Explaining that the machine enabled them to better control where the radiation was going in order to preserve the teeth, voicebox and salivary glands, Dr. Spanos presented TomoTherapy as the best opportunity for a higher quality of life after radiation treatment. Mark agreed to the treatment plan without hesitation: “I’d reviewed his (Dr. Spanos’s) history and he had a pretty outstanding track record.”
As this was new technology at the time (the Brown Cancer Center was among the first 15 sites to install the Hi·Art treatment system; today there are over 250 worldwide), Dr. Spanos was upfront about treatment being a collaborative process between Mark and the radiation team to devise the best way to keep him still during the radiation sessions. For Mark, the extra time and effort was well worth the chance to preserve his active, athletic lifestyle.
A parts and service manager for a large RV store, Mark continued to work while undergoing radiation. With the treatment center just five minutes from his office, he was able to do most of the thirty-five treatments during his lunch hour.
As Dr. Spanos had said, experimenting with ways to keep Mark still during treatment was a team effort. For the first few treatments they used a molded mask that bolted to the table (so shoulders, neck, head were in same position) and had Mark breathe through a small tube in the mask. Later they devised a denture-based, halo-type restraint that would keep Mark in place by locking to the top of his mouth.
Mark credits TomoTherapy radiation treatments for keeping him on track with his active lifestyle.
“Three weeks into treatment, things started tasting not so good,” Mark said. By week six, he was starting to tire more easily and everything had begun to take on a metallic, rust-like taste. As he could still taste vanilla and chicken, Mark drank lots of Ensure and water, and ate chicken and dumplings. Mark recollected some long dinners around this time where he “would sit down and make (himself) eat until it was all gone.” His perseverance paid off, and he lost only fifteen pounds during treatment.
Mark understood his side effects were minimal when he compared them to what he saw in the waiting room during his lunchtime appointments: “I saw other folks doing treatments on different machines and they weren’t faring as well as I was. I could tell by the way their necks were swollen, blistered and by (their) eating tubes.” Beyond some markings on his neck, hair loss along the back of his head and mild weight loss, Mark doubts anyone would have known he was undergoing radiation.
Two weeks after ending radiation treatment, Mark’s hair started growing back and he regained his sense of taste. After two months, Mark could eat or drink anything—including hot, spicy foods—and felt his life was almost entirely back to normal.
Now almost five years cancer-free, everything is back to normal for Mark. In fact, he has continued distance running, and has successfully taken on the challenge of half- and full Ironman races.
“Since 2007, I have competed in many races, so I can honestly say I haven’t lost a step,” said Mark. “I have run in the Kentucky Derby Marathon in 2008 with a finishing time of 3:56. In the fall of 2008 I ran in the Louisville Fall Half Marathon. In 2009, I started out with the triple crown races of the Kentucky Derby, a 3-miler, 6-miler, and a 10-miler. I also did the Oschner 70.3 Half Ironman in New Orleans. And, in August of 2009 I finished my first 140 mile full Ironman, the Ford Ironman in Louisville. I have no problem with dry mouth or any other of the side effects that you hear about when receiving radiation to the throat. I owe my quality of life to Dr. Spanos and his staff, and the wonderful folks at TomoTherapy.”
Diagnosis: Squamous cell carcinoma at base of tongue and in two lymph nodes.
Date Diagnosed: June 2006
TomoTherapy Treatment Experience:
Short-Term Side Effects from TomoTherapy:
In Mike's Own Words: "I can infer from my experience with radiation and how I tolerated it versus others who went through other types of radiation, that I made the best decision with my treatment choice. A lot of people have to wait a year before returning to work and I was back in six weeks."
Five-Year, Cancer-Free Date: October 2011.
Follow Ups: Mike will have to get an X-ray and check up each year to confirm that there are no recurrences of the cancer.
As of the publication of this story in June 2012, Mike has remained cancer free.
Living cancer free for six years after his initial diagnosis of squamous cell carcinoma, Mike Schafer said it's important to let other patients know that "life does go on…there was a period in my life when that was impossible to believe. But then a day comes when you wake up and realize that life is back to where it was before you found out you had cancer. And then you realize that you don't have to drag this thing around anymore."
There are a few things you'll quickly learn about Mike Schafer: he's a true leader and a real family man. It was a combination of these traits – along with desire to seek superior care – that helped Mike defeat cancer, and remain cancer free for more than six years since his TomoTherapy® treatments.
In April 2006, Mike first noticed a lump on the left side of his neck, just under the jaw line. "Like most people, I didn't think much of it at first," he said. "After several weeks, it hadn't gone away and it started to get a little bigger and that's when it started to concern me."
Mike decided to get it checked out by his Primary Care Provider, who told him to follow up with an Ear, Nose and Throat (ENT) specialist. That's when panic set in. After a biopsy, Mike was diagnosed with squamous cell carcinoma that had originated at the base of his tongue and had spread to two lymph nodes in his neck.
Haunted by memories of his mother's death from lung cancer a few years before, Mike was determined to take a more active role in his cancer care, and he set out to find the best treatment possible.
First Mike needed delicate surgery, after which his surgeon also recommended that Mike start a course of radiation treatment. In researching different types of radiation treatments, Mike met with Dr. Glenn Tonnesen at Inova Fairfax Hospital Cancer Center in Virginia.
"I explained to Mike that there are lots of linear accelerators doing IMRT (intensity-modulated radiation therapy) that just weren't designed to do it," said Dr. Tonnesen. "The only machine designed from the ground up to do IMRT is TomoTherapy. So, if you want to sculpt the dose and aim at one thing and miss another there is no other option. I think that's what appealed to Mike—that this was a purposeful machine designed to do exactly what he wanted."
"Mike was a good candidate for TomoTherapy because he had disease only on one side of his tongue and neck," said Dr. Tonnesen. "Therefore, we wanted to treat the areas of high risk and skip the rest." He continued to explain that avoiding the salivary glands and spinal cord, and preserving Mike's ability to easily taste and swallow, were very important.
Mike received 35 radiation treatments over the course of seven weeks on the TomoTherapy Hi•Art® System. A daily CT image was taken before each treatment to make sure Mike was lined up as precisely as possible.
"Since we've started using TomoTherapy's daily CT, we have learned that our patient set-ups are more precise than relying exclusively upon masks, lasers and skin marks," said Dr. Tonnesen. "As carefully as we try to set patients up, the TomoTherapy daily CT usually shows they need to be moved millimeters on average every day."
Mike didn't completely lose his taste as a result of the TomoTherapy treatment, but he said that nothing tasted good or right for awhile. However, his taste quickly returned to normal. A lingering side effect is a bit of dry mouth while eating or talking a lot, but water helps with that. While Mike noted that it's hard to compare his experience to others treated on more conventional machines, he is convinced that he fared better than many fellow patients from his support group.
"I've heard from others who have had terrible dry mouth for years afterwards. While I had some mouth sores during the process, I know of others whose mouths were so inflamed that even drinking was horrible. They've told me their skin was burned. I didn't experience that, just some mild redness was the extent of it." Mike said he had heavy mucous as the treatments wore on, but it was gone a week after treatment. "One gentleman I spoke with still has to deal with that heavy mucous years after treatment."
Looking back at his choice of TomoTherapy treatments, Mike said, "I can infer from my experience with radiation and how I tolerated it versus others who went through other types of radiation, that I made the best decision with my treatment choice. A lot of people have to wait a year before returning to work and I was back in six weeks. People were shocked that I returned to work and a normal schedule so quickly."
When you first meet Andrea Gildner, you can’t help but notice her warm personality, welcoming smile and striking features. It is only after you speak with her that you realize she seems wise beyond her years, and you begin to understand why.
Andrea gets a loving squeeze from husband, Wayne. Andrea was diagnosed with breast cancer at age 25.
“It was a highly aggressive cancer affecting my left breast and 18 lymph nodes,” she says. “I was given a very poor five-year survival rate with a 90-95% chance the cancer would recur in less than five years.”
As a young woman and mother, the diagnosis came as a shock. “I didn’t know if I would see my son go to kindergarten, much less graduate from high school,” she reflects.
Although the odds were stacked against her, after a lumpectomy, chemotherapy and radiation therapy, Andrea’s cancer was in remission.
Until nine years later.
“I first noticed some swelling under my left arm that came and went for the summer. I worked in a Gynecologist’s office at the time and he examined me and thought it was probably just an after effect from previous conventional radiation that I’d had. When my left breast started to swell up and become red, I knew something was wrong.”
This prompted Andrea to see a local surgeon who ordered an ultrasound and biopsy. When the initial biopsy results came back positive for cancer, Andrea was crushed.
“The doctor said he was sorry but the results were positive for a cancer recurrence. He asked me what I wanted to do. I told him that I wanted both breasts removed immediately.”
A few days later, Andrea had a double mastectomy.
“I know a lot of women have a hard time with the loss of both breasts, but for me there was never any sadness involved. I mean, how do you mourn the loss of what I felt was a total betrayal? When the cancer recurred, I honestly felt like my body had let me down….once again.”
Final biopsy results revealed that Andrea was dealing with another aggressive form of recurring breast cancer, known as “inflammatory” breast cancer, that affected her entire left breast. Andrea was again facing a poor prognosis, “I was so distraught and robotic,” she says honestly.
On top of that, she had already been treated with radiation once before and there was a concern that she might not be able to receive treatment again due to a possibility of already receiving her maximum radiation dose. “There are sensitive structures all around the breast, like the heart that can only be exposed to so much radiation,” says Andrea. “I went to see a medical oncologist and he told me that he thought I had already maxed out on radiation. He asked me to give him three days to consult with a radiation oncologist. At that point, I didn’t even feel like I had three days.”
Andrea pushed for other options.
“It’s important not to accept one answer. Regardless if we’re talking about a pain in your chest, a cold or cancer, we have choices and we don’t have to settle for the physician who is most convenient or someone we have gone to all our lives. I don’t understand, because we’ll shop around for things that are so trivial in life. We’ll go to 15 furniture stores to pay less for a couch, but we don’t do that with our healthcare.”
Andrea’s father helped her discover a possibly lifesaving choice.
He led her to Cancer Treatment Centers of America (CTCA) after calling their care line and learning about TomoTherapySM radiation treatments. Andrea also realized that getting the best treatment would involve some travel since she lives in West Branch, Michigan. The closest TomoTherapy treatment center, at the time, was Midwestern Regional CTCA in Zion, Illinois.
At Andrea’s first CTCA meeting, she immediately felt at ease because the doctors were open and honest. “Dr. Dennis Citrin, a CTCA-Midwestern medical oncologist, told me, ‘It will be a rough road, but if you’re willing to fight, we’re willing to fight for you.’”
The Gildner family enjoy quality time together. Dr. Bernard Eden, director of radiation oncology at CTCA-Midwestern, led her radiation therapy regimen. He says TomoTherapy radiation treatments were well-suited for Andrea since she had experienced previous radiation. “TomoTherapy is a good option for breast cancer patients who previously reached their maximum radiation dosage or need to spare underlying lung and heart tissue,” explains Dr. Eden. “It spreads out the dosage from 360 degrees around the tumor, and can thereby minimize dose to surrounding normal tissue. Plus, by taking a daily CT just before each treatment, we are able to be more accurate.”
He adds, “Inflammatory breast cancer is very aggressive and not too common. Without radiation treatment, there is a high risk of recurrence, which is why TomoTherapy was recommended.”
Andrea’s re-treatment was as aggressive as the cancer.
“We began with a hyperfractioned course of radiation two times a day for three weeks to decrease the late effects of radiation like lung damage and fibrosis,” says Dr. Eden.
In addition to radiation, Andrea received chemotherapy and was supported with naturopathic medicine to help alleviate side effects associated with treatment.
Andrea reflects, “The first time I was diagnosed with breast cancer, I felt like daily treatments were a constant reminder of the cancer and they mentally set me back. When I was at CTCA receiving TomoTherapy treatments, I started to see another side. I focused on relationships I was making with other patients and staff. I came to see my treatments as a daily effort towards my wellness.” After pausing a moment she continues, “When I had my radiation treatments the first time it was negative and I was so resentful. I hated the daily reminder. But the second time, I didn’t feel that way. I think it had so much to do with the atmosphere at CTCA. It’s a hard place to feel sorry for yourself.”
In total, she was away from her family for the month of December 2004. She tolerated the radiation well.
“I was blessed because I never ended up with any major side effects. I never had any blistering. Other than being a little fatigued, I would not have known I was receiving treatment.”
She says that even her family was impressed when she came home for Christmas break. “My sisters picked me up at the airport and they were so amazed at how good I looked,” she laughs. “I think I looked better than I did when I left.”
Andrea is almost three years out from the second recurrence and continues with follow-ups every six months. “I just had a major check up in August and it was the best one yet,” Andrea says with obvious relief. “The doctors were very pleased. It was so nice to come home without any unanswered questions.”
Andrea is currently on a leave from her job as a medical assistant, but plans to go back. In the meantime, she enjoys spending family time with her husband Wayne, 9-year-old daughter Hannah and 16-year-old son Josh. “My kids are both involved in sports so we’re running all the time. We don’t get a lot of downtime around here!”
She says they enjoy cheering on the Detroit Tigers, fishing and off-roading on the trails of their wooded backyard.
And, she makes sure to save some time for her friends.
Andrea leads the way for some four-wheel fun. “I just went on a girls tubing trip down the Au Sable River in Michigan. We called it our ‘Girls Gone Wild’ trip,” she laughs.
While Andrea does find time to enjoy life, she knows that she has to take care of herself and encourages other cancer patients with a wisdom that only someone who has experienced cancer twice could have. “You have to be positive, but don’t try to be Wonder Woman,” she says. “I feel like I often didn’t give myself enough downtime and that is really important to just take it easy on yourself sometimes. Also, understand that you’re going to have weeks where you feel so completely normal and others where you struggle emotionally. For me, the emotional aspects of cancer were much more of a challenge than any physical changes I had to endure.”
Andrea continues to do her part to help other cancer patients by hosting a support group in her home. She says it does get difficult because the reality of cancer has caused her to lose some close friends, but she remains optimistic about the future, “I try really hard not to skip a beat in my life. And, I tell everyone that TomoTherapy made a difference for me. I believe I am here today in part because of TomoTherapy.”
It’s 85 miles from Montgomery to Birmingham, Alabama. Laurens Pierce III made the trip there and back, every weekday, for 5 ½ weeks of TomoSM treatments. He’ll be the first to tell you it was worth every mile, and every minute.
A name like Laurens Pierce III comes with history. One ancestor signed the Declaration of Independence. Others trace leadership in the Montgomery, Alabama community back to pre-Civil War years. In spring of 2006, Laurens was looking forward to continued, active presence in Montgomery’s business community and a long future enjoying family and friends. Then, a series of Prostate Specific Antigen (PSA) screening tests showed rising PSA levels. And, fearing prostate cancer, Laurens asked for a biopsy.
Laurens was shocked when he received the results. “They took 17 tissue samples and all 17 were malignant,” recalls Laurens. A Gleason score was calculated, giving a grade or level to the extent of the cancer found in the prostate.
“My Gleason score was 8. The doctor said 80% of prostate cancer patients have a Gleason score of 6 or less. I was in trouble!”
Laurens’s oncologist agreed. “Mr. Pierce presented with high-risk prostate cancer. It was fast-growing and aggressive,” says University of Alabama at Birmingham (UAB) Associate Professor of Radiation Oncology Dr. John B. Fiveash.
“This was serious,” Laurens says, “For the first 10 days I was in mortal shock. I couldn’t stop thinking, I have cancer.”
Laurens, who describes himself as “medically proactive,” wanted information. His son-in-law, a regional manager for the oncology division of an international company and a son in the medical equipment profession gathered information from colleagues and clients. Laurens knew his situation was high risk and wanted the best options for treatment.
“The name TomoTherapy and Dr. John Fiveash kept coming up,” Laurens says. Immediately, he made an appointment with Dr. Fiveash at the Kirklin Clinic in Birmingham, 85 miles up I-65 from Montgomery.
“Dr. Fiveash gave it to me straight,” Laurens says. “Radiation treatment was my only option…They’d do adjuvant [hormone] therapy to shrink the tumor. Then radiation….I was told to expect chemotherapy afterward because of the tumor size and the way the cancer had spread….I felt like a guy who’d been in a car wreck…but I knew I had to be positive.” Also, Laurens was determined to learn as much as possible about the disease so he could make informed, confident decisions about his own care.
“The clinic had a handbook for patients telling you what to expect from radiation,” he recalls, “They list all these horrible things to expect…exhaustion, feeling sick…even lifelong side effects like bladder problems and rectal bleeding.”
“Dr. Fiveash said, ‘Throw that book away. That was printed before we had the TomoTherapy machine.”
Because Laurens had advanced prostate cancer, Dr. Fiveash recommended treatment using the TomoTherapy® Hi·Art® treatment system at the Kirklin Clinic.
“There are so many advantages to TomoTherapy,” Dr. Fiveash says.
“First, [the machine allows us to do] daily image guidance. We know, at every session, the exact location of the tumor and surrounding healthy tissue. This allows us to deliver more radiation to the prostate because we’re able to treat more accurately with lower toxicity.”
As a result, Dr. Fiveash was able to complete Laurens’s radiation therapy regimen in just 5 ½ weeks. Radiation therapy with conventional technology can take 8 to 9 weeks. And, without daily CT scans, radiation is directed toward a tumor based on radio opaque markers and data from periodic scans. If a tumor has shrunk or changed location, radiation could be incorrectly directed to healthy tissue.
By pairing CT scanning with a unique, 360 degree “helical” delivery of radiation, the TomoTherapy Hi·Art treatment system is equipped to deliver radiation to multiple sites in a single session. Dr. Fiveash describes this capability as a great advantage for treatment of advanced prostate cancer.
“TomoTherapy allows us to treat the lymph nodes and prostate at the same time, but, with a different amount of radiation to each….Other systems require 8 to 9 weeks. First, 5 ½ weeks with same amount of radiation to both the prostate and lymph nodes. Then, another 3 weeks to the prostate alone.”
The result? According to Dr. Fiveash, the 5 ½ week regimen with the TomoTherapy treatment system is not only more convenient for the patient, but more radiation is delivered to cancerous tissue with fewer and less severe side effects for surrounding healthy tissue.
“I’ve treated about 100 patients with the TomoTherapy machine…about 250 a year total in the clinic,” says Dr. Fiveash. “We’ve just completed a study of the first 30 patients where treatment included both prostate and lymph nodes…Despite higher amounts of radiation per day, toxicity was actually lower.”
“Even though we used more radiation in a shorter time we saw less side effects, not more …because of the image guidance and accuracy of the TomoTherapy system,” Dr. Fiveash says. The study showed promising results, even for advanced, high-risk patients like Laurens Pierce.
“No patients showed severe – grade 3 or 4 – toxicity,” Dr. Fiveash explains. “Before Tomo, about 5 to 10 percent of patients had long term rectal bleeding.”
At age 65, Laurens Pierce knows many men treated with radiation therapy for prostate cancer. He was prepared for a grueling experience.
“My golfing buddy was treated with ‘old fashioned ordinary radiation’ at the same time. We’d compare notes every Sunday. He had diarrhea, lost his hair…and worse. I didn’t.”
“I felt like I was playing Monopoly and got Park Place, Boardwalk and Get Out of Jail Free!” Laurens says.
“During the whole time I was receiving Tomo treatments I never missed work. Never had a side effect. I drove 100 miles to the clinic every day and came back to work….I never even missed my Sunday golf!”
“It’s critically important to be able to accurately locate the prostate gland and tumor on a daily basis,” says Dr. Fiveash. “With TomoTherapy we can minimize the extent to which rectal and bladder tissues are affected – and the resulting side effects.”
Laurens completed the treatment plan. Hormone therapy reduced the tumor size. The 5 ½ weeks of radiation therapy with the TomoTherapy Hi·Art treatment system followed. Now, Dr. Fiveash has scheduled regular check-ups and ongoing adjuvant therapy.
“I was told to expect chemotherapy to clean up residual cancer cells because of the tumor size,” Laurens says. “I didn’t need it. For the past 19 check-ups, over the past 4 1/2 years, my PSA levels have been so low they’re undetectable. Less than 0.1! And, because the amount of radiation on the tissue around my prostate was so small, I don’t have those long-term side effects like so many men.”
Laurens is also enrolled in a 4-year UAB Hospital study of prostate cancer patients treated with Androgen therapy to reduce testosterone levels and suppress growth of cancer cells. His PSA levels will be monitored regularly.
“Now, I want to tell everybody about TomoTherapy,” Laurens says. “I about wore out my printer copying pages from their website to give to people.”
Today, Laurens Pierce rarely sees a week pass without talking with someone about prostate cancer and TomoTherapy. In fact, he estimates his informal support network has referred more than 65 men for treatment at Kirklin Clinic. “I’ve made it my purpose to get a closet subject with a lot of men out into the open. I’ve even told my urologist here in Montgomery.”
Laurens has now returned to the life he enjoyed before prostate cancer and TomoTherapy treatment. “It took a few months to stop dwelling on the cancer,” he says. “Now, I’ve put it behind me. I’m going to see my grandchildren graduate from college. And, in 10 years, I plan to still be out there playing golf!”
Mary Barnhart is a breast cancer surgeon in Portland, Oregon. She spends her days working with women who have been diagnosed with cancer, consulting them on post-surgical treatment options and dietary changes that can benefit their overall health.
Through the years, particularly as a general surgeon, Mary has come to see the damage that conventional, less precise forms of radiation therapy can incur. The knowledge has led her to become highly suspicious of radiation therapy as an option. So, when Mary was herself diagnosed with endometrial cancer, she did everything in her power to avoid radiation treatments. Her doctor eventually convinced Mary to meet with two radiation oncologists, both of whom introduced her to the concept of IMRT, which started to make much more sense than the whole abdominal radiation blasts that she was familiar with. Between her scientific mind and passion to live, Mary began to realize IMRT was the right thing to do. She chose a doctor and was set to begin treatments the following week.
Mary was told that she would have to abandon her vegan diet due to severe diarrhea that could occur during treatment. Rightfully concerned over this lifestyle change, she spent much of the weekend researching radiation diets online. That’s when she stumbled upon TomoTherapy.com. The video below captures Mary’s story of finding the right treatment option, at the right time.