Continued on page 2

TogetherTogetherLife after cancer

Finding your way to stop feeling adriftWe don’t want to stop rowing, so we drift in circles fora time looking for guidance

In this issue...

Tending your spiritamid physicalchange. Our spirit –that energy deepwithin us – can helpus cope with therealities and difficulties of ourlives. Page 3

Bill Sands –Survivor. Sevenyears ago, he wasgiven six months tolive, maybe a year. Henow lives by thephilosophy that "eachday you have to getout of yourself and seewhat you can enjoy."Page 4

Intense heat stopssevere pain.Research study findsradio-frequencyablation significantlyreduces the severepain some patientsexperience whencancer has spread to the bone.Page 6

By Mary Amundsen

The last day of cancer treatment. Finally! Now I can get on with my life and everything will be back to normal. Cancer will be history and I can forget it ever happened.

As a nurse, cancer survivor and family member of cancer patients, I know those thoughts arecommonreactions to completing treatment. I also know that the reality of life after cancer is much different - it’s usually a combination of surprise and bewilderment. It often feels like this…

During chemotherapy or radiation therapy, which typically follows surgery, we feel we’re partners with our doctors and healthcare providers in an active process to defeat the cancer. We focus our energy on physical healing and we’re part of a team working for that goal.

But like other graduations, the elation of reaching the goal soon wearsoff and we find ourselves feeling tired, vulnerable and really missing the medical team that was so much a part of our daily life. We don’t

trust our body and wonder if each ache and pain means the cancer is coming back. If we’re not actively fighting the cancer, are we

playing a waiting game? How do we get on with “our life” when we’re not sure what that is anymore?

Feeling adrift aptly describes life after cancer. During treatment, we actively row the boat and see the other side

where we want to be. When treatment ends, we feel like we’re surrounded by a fog and can’t tell which direction to go. We

don’t want to stop rowing, so we drift in circles for a time looking for guidance.

Adapting to all the changes from cancer can take months,sometimes years. The people around us want life to be

like it was before cancer, but as much as we try, our old life doesn’t fit us anymore. Things that we put on

SPRING 2003

2

Together...Timothy G. Call, M.D.Hematologist/OncologistMedical Editor

Mary LawsonCommunications Consultant

Cheryl AshelinGraphic Designer

Laurel KellyCommunications Assistant

Editorial Board:Lynn C. Hartmann, M.D.,medical oncologistMary E. Johnson, chaplainWayland Eppard, patientadvocateJacalyn See, dietitianKelli Fee-Schroeder,nurse educatorMary Amundsen, cancer survivor and family memberCarol Brueggen, oncology clinicalnurse specialistMary Burk, oncology nurseJulie Ponto, oncology clinicalnurse specialist

Mayo Clinic Cancer Center is part of Mayo Clinic. It isdesignated as a comprehensivecancer center by the NationalCancer Institute. The mission ofthe cancer center is to providecompassionate state-of-the-artcare for the cancer patient oftoday and continued advance-ments in the prevention, diag-nosis, treatment and cure ofcancer in the future. The pro-grams and services of the cancercenter span the three MayoClinic campuses in Rochester,Minn., Jacksonville, Fla., andScottsdale, Ariz.

Together provides educationalinformation for cancer patientstreated at Mayo Clinic, theirfamily members, caregiversand friends. Physicians and staff of the cancer center writethe articles.

Mayo Clinic Cancer Center

hold with our diagnosis now needto be addressed or resolved butsome of those things don’t have thesame importance for us. Ourpriorities have changed.

These feelings of foundering sur-prise and bewilder us. But as withother major life changes and transi-tions, we can adapt to this challengeof getting on with life after cancer.

These suggestions may help you infinding your way:

■ First, know that feeling adrift is anormal part of the cancer journey.Most cancer survivors feel this way after they have completed their treatment.

■ Carefully planning your day may help you cope with fatigue.Prioritize your tasks and separatethem into manageable pieces. Set small achievable goals to regain a sense of accomplishmentand control.

■ Within your daily planning, allottime for thinking, grieving andplaying. Find a way to expressyourself in art, music or writing.

■ If you feel you need to talk withsomeone who understands whatyou’re going through, considerjoining a support group. Yourhealthcare provider or the AmericanCancer Society can tell you aboutsupport groups in your community.

Finally, focus on the future withrenewed hope. Even though yourlife has changed, you have a wealthof courage and strength in you andfrom those who support you.

Continued from page 1

Stop feeling adriftFocus on the future with renewed hope

These books and Web sites provide more information about surviving cancer:

■ Surviving Cancer Emotionally: Learning How to Healby Roger Granet, M.D.

■ The New Cancer Survivors: Living with Grace, Fighting with Spiritby Natalie Davis Spingarn

■ Chicken Soup for the Surviving Soul: 101 Stories of Courage andInspiration from Those Who Have Survived Cancerby Jack Canfield, Mark Victor Hansen, Patty Aubrey andNancy Mitchell, R.N.

■ National Coalition for Cancer Survivorship(www.canceradvocacy.org)

■ Cancervive: Dedicated to Life after Cancer (www.cancervive.org)

For Your Information

Mary Amundsen is aregistered nurse and acancer survivor. Shenow works with MayoClinic Cancer Center’sWomen’s Program as a study coordinator.

3 Mayo Clinic Cancer Center

Tending to your spirit amid physical change and distressBy Phillis Bennett

Introducing Patient PartnersThe American Cancer Society’s Patient Partners program helps cancer patients, survivors and theircaregivers adapt to the life changes that cancer brings and cope with issues that arise from a cancerdiagnosis. Two types of volunteers comprise Patient Partners — survivor volunteers and support volunteers. Survivor volunteers are cancer survivors who are carefully screened and trained to addressthe concerns of cancer patients and survivors. Support volunteers are family members or caregivers ofsomeone who has had cancer. They provide a listening ear and information to other caregivers. They are not necessarily cancer survivors. For more infomration about the Patient Partners program, call theAmerican Cancer Society, 1-800-ACS-2345.

I recently asked a patient with cancerto close her eyes and go to herfavorite place in her mind. When Iasked where she was, she said shewas looking out over the GrandCanyon. I asked her to see herself asan eagle and fly over what she saw.She gasped and even with her eyesclosed I could see that she wasletting go of her cancer pain andanxiety and soaring if only for amoment over the beauty of nature.

This example illustrates that in times of physical illness and distress, the spirit - that energy deep within us - can help us copewith the realities and difficulties of our lives.

Spirituality is the search for meaningand purpose. It is a way to relate on a deepr level to self, God,other people, and all of creation.

Spirituality is a dynamic relationship- a living thing that is influenced bylife experiences - joys and sorrows,victories and defeats. Becausespirituality is alive it needs tendingand nurturing.

A person dealing with cancer maynot be able to control the physicalaffects of the disease, but they cantake charge of their spiritual life.

These activities may help heal orstrengthen your spirit:

■ Walk in nature if you are able; sitby a window in the warm sun; sharea sunset with someone you love.These kinds of simple pleasuressustain us.

■ Participate in guided meditation orrelaxation techniques, such as in theexample, to connect to your spirit.Sitting quietly, focusing on yourbreathing and using a prayer wordor phrase to hold your attention canget you started. A phrase might be “Iam one with God.” Or try breathingin “peace” and exhaling “let go.”

■ Pray. Simply talking to God or a higher power can bring a measureof peace and connectedness that may help you deal wth pain and suffering.

■ Maintain relationships with family,friends and a community, whetherchurch or a support group, tonourish your spirit.

Phillis Bennett is achaplain at Mayo Clinicand works primarilywith cancer patients andtheir families.

Spirituality

is the search

for meaning

and purpose.

Spirituality is a way to relate on a deeper level to self, God, other people, and all of creation.

For

Your

Info

rmat

ion

4Mayo Clinic Cancer Center

ill Sands of El Prado, New Mexico, doesn’t live infear of death. Instead he’s found a new and better lifewith a great sense of peace and freedom.

That’s how Bill describes the outcome of his experiencewith cancer. He credits the love of his wife, Martha, andthe help of several people he calls his heroes for bringinghim through his ordeal and to his changed attitude.

Now age 64, Bill was born in Indiana and raised inDelaware, but his life’s values come from North Dakotaand Minnesota where he attended college and began hiscareer. Before his cancer diagnosis, his life had its upsand downs but he lived it pretty much on his terms. His30-year career in the legal and sales departments ofNational Farmers Union Insurance Companies (NFUIC)challenged him. Getaway trips to northern Minnesota acouple of times a year energized him.

In 1993, Bill left the corporate world in Colorado wherehe had relocated with NFUIC. Martha, his wife of 15years and a former insurance company executive,continued her career while Bill opened a small sandwichshop in Aurora. He used the shop to help troubledteenagers by giving them jobs and guidance in furtheringtheir education.

On the eve of Good Friday in 1995, while doing the workschedule for his employees, Bill felt a slight bump on theleft side of his neck. He dismissed it as an insect bite, butan hour later, the bump was the size of a hardboiled egg

and he went to the local emergency department to haveit checked. The doctor told him the bump could be eitheran infection of a lymph node or a tumor. He wrote Bill aprescription for an antibiotic and gave him the name of aspecialist in ear, nose and throat (ENT) problems.

“For the next few days, I hoped the bump was aninfection, but it wasn’t going away,” Bill says. He wentto the ENT doctor, who referred him to an ENT oncolo-gist. Martha went with him to that appointment.

The oncologist confirmed Bill’s fear. He told him he hada rare cancer of the nasal system, called nasopharyngealcancer, also known as NPC. He also told Bill that withouttreatment he might live six months; with radiation andchemotherapy he might have one year.

“I was shocked,” Bill says.

Martha also was stunned, but her years as a decision-making executive started her thinking about options. Shesaid to Bill and the oncologist, “We’re going to MayoClinic for a second opinion.”

“It seemed logical because Bill had been to Mayo a fewyears before for another problem that no other placecould help him with,” Martha says.

The Colorado oncologist suggested they see H. BryanNeel, III, M.D., Ph.D, specialist in ear, nose and throatproblems at Mayo Clinic. He had heard Dr. Neel speak at

“Each day you need to get out of yourselfand see what you can enjoy because every

day above ground is a good day.”

Bill Sands

B

5 Mayo Clinic Cancer Center

a medical conference about the type of cancer Bill had.(Dr. Neel and other Mayo researchers have conducted alot of basic and clinical research on nasopharyngealcancer.)

Bill and Martha drove the nearly 1,000 miles to Rochester,Minn., and Mayo Clinic. Although they cried a lotduring the drive, they also talked about being positive. “We felt like the whole world around us had disappeared,” Bill says. They had packed clothes for only a few days not reallyknowing what the results of theMayo Clinic visit would bring.

Then they met Dr. Neel.

One of the first questions Dr. Neelasked Bill was what he had beentold about his condition. Bill report-ed the grim prognosis and added hewasn’t sure he wanted to undergothe difficult treatments for only afew more months of life. He wouldrather take a long meditative canoetrip and enjoy his last remainingdays with his family.

“As I talked, I saw Dr. Neel stiffen and the hair on theback of his neck seemed to stand out,” Bill recalls. “Then

he said nobody really knows how long anybody has tolive, and that from his research and experience, I did notneed chemotherapy because that didn’t work on my typeof cancer. He said I needed conventional, and intense,radiation treatments and he talked with a radiationoncologist. Surgery to remove scar tissue from the neckwould come later.

“For the first time since being told I had cancer, I feltrelief and a lot more confident,” Bill says. “I received aglimmer of hope. Right then and there Dr. Neel becameone of my heroes.”

Bill met another of his new heroes the next day – James Bonner, M.D., (now at the University of Alabamain Birmingham) and later Robert Foote, M.D., bothradiation oncologists.

“I thought that after talking with Dr. Bonner, Martha andI would go back home to either stay or arrange to returnto Mayo for treatment, but instead Dr. Neel and Dr.Bonner were eager to get started right away with thetreatments,” Bill says.

Martha adds,“Although Bill was reluctant to stay, ourmeetings with both doctors convinced me that Bill was inthe right place.”

Nearly eight years after hisbattle with cancer, BillSands and Martha, his wife,enjoy a normal, activelifestyle. Martha is now anadjunct professor at theUniversity of New Mexicoin Taos, and Bill does somesubstitute teaching andvolunteer work. Each yearBill comes to Mayo Clinicfor checkups. He continuesto take an annual canoe tripin the boundary waters ashe as has done for 45 years.He also cross-country skisin the winter and bicyclesin the summer to stayphysically fit and keep hismind off the cancer.

H. Bryan Neel, III,M.D., Ph.D,

Continued on page 8

6Mayo Clinic Cancer Center

Even though it was two years ago, Heather Henrichs of Billings, Mont., remembers the unbearable pain she felt in her left shoulder after lifting a laundry basket as if itwere yesterday.

“The pain just took my breath away,” recalls Heather. “I had to lie on the basketbecause I couldn’t get up.”

Now 29 years old, Heather was diagnosed seven years ago with paraganglioma, a rarecancer of the endocrine system. She received the diagnosis at about the same time shelearned she was pregnant with her son, Tristan. The pain she felt resulted from thecancer having spread to her shoulder bone.

Cancer spreading to bone is a common problem for cancer patients. Although thespread of cancer to bone is usually not life threatening, it can cause excruciating painand severely affect a patient’s quality of life. For some patients the pain can become soextreme that it becomes difficult, if not impossible, to walk, sit or lie down.

Treatments used routinely to control cancer pain include radiation therapy, surgery,chemotherapy, hormonal therapy and pain-relieving drugs such as morphine. Thesetreatments work well, but all of them have limitations or side effects.

Now another method is helping to alleviate pain for some patients like Heather. Aresearch study led by Mayo Clinic and involving researchers at nine other cancercenters in the United States and Europe has found that a fairly simple radiologicaltechnique can provide huge benefits to some patients with severe bone cancer pain. Thetechnique is called radio-frequency ablation, or RF ablation, and it uses heat to killcancer cells in the bone and thereby greatly reduce the pain.

Radio-frequency ablation does not cure cancer, but according to a Mayo Clinic research study,

it can safely and effectively reduce the severe pain some patients experience when their

cancer has spread to the bone.

Tthe radio-frequency ablationneedle is directed to a tumorin the bone.

The, electrodes spread outthrough the needle, causinga zone of intense heat to thetumor in the bone andalleviating the pain.

Ultrasound is used to guide the radio-frequencyablation needle to the site of the cancer in the bone.Dr. Charboneau, right,maneuvers the ultrasounddevice while he and Dr. Callstrom watch themonitor on the ultrasoundmachine to pinpoint thedestination for the needle.

Intense heat stops severe pain

7 Mayo Clinic Cancer Center

The study has thus far involved 62 patients with cancerthat had spread to the bone. These patients either werenot helped or were not eligible for the standard pain-relieving treatments. After receiving RF ablation, 95percent of these patients had a significant reduction intheir pain. These patients were asked to report their painon a standard 10-point pain rating scale before and afterthe procedure with 10 being pain “as bad as you canimagine.” More than 50 percent of the patients reportedsignificant relief four weeks after the procedure. At 24weeks after the procedure, the average pain reductionwas 69 percent. Follow-up on these patients indicatesthey continue to enjoy significant pain relief six monthsto a year after their treatment.

“RF ablation is actually remarkablyeffective at reducing pain,” saysWilliam Charboneau, M.D., a MayoClinic radiologist and researcher onthe study. “It was really quiteamazing that patients can go fromso much pain to resuming a near-normal life.”

“Our study provides evidence thatthe RF ablation procedure is safe,the relief from pain dramatic and the treatment shouldprovide an alternative for the treatment of painful bonemetastases when standard treatments fail,” says Dr.Charboneau.

According to Matthew Callstrom, M.D.,also a Mayo Clinic radiologist andresearcher on the study, “On a scale of10, our patients typically begin withabout a 7 pretreatment pain score andthen drop down to an average score of2. Many patients’ pain levels havedropped to 0.”

“A score of 7 generally means that painis the dominant concern, with the

patient watching the clock between medication dosesand requiring as much pain medication as can be tolerat-ed,” says Dr. Callstrom. “Through RF ablation we havebeen able to reduce fairly severe pain down to the pointwhere pain is not controlling our patients’ every thought.They have a good quality of life.”

The procedure takes about an hour to perform undergeneral anesthesia. With the aid of computed tomogra-phy (CT) or ultrasound guidance, electrical energy istransmitted through a long thin needle inserted throughthe skin directly into carefully targeted tissue around thetumor. The high-frequency currents heat and destroy alarge part of the tumor.

William Charboneau, M.D.

Heather Henrichs has been living with cancer for seven years.Treatment with radio-frequency ablation helps her enjoy a nearnormal life with her husband and son.

MatthewCallstrom, M.D.

While the pain-relieving capability of RF ablation isnoteworthy, Dr. Charboneau and Dr. Callstrom cautionthat RF ablation is not a cancer cure and not appropriatefor every patient with bone cancer. While the procedurekills cancer cells, it is intended to treat the pain not thecancer. A patient with more than two or three painfulbone metastases is not a good candidate for the procedureunder its current use.

Meanwhile, Heather enjoys a near normal life with herhusband, Scott, and their son, Tristan, at home and in herfamiliar surroundings of Billings.

“I feel kind of like my myself again,” she says.

The results of the study on radio-frequency ablation for relief ofcancer pain in bone were published in the November 2002 issueof Radiology journal.

200 First Street SWRochester, Minnesota 55905www.mayoclinic.org

© 2003, Mayo Foundation for Medical Education and Research (MFMER). All rights reserved. MAYO, MAYO CLINIC, Mayo Clinic Cancer Center and the triple-shield Mayo logo are trademarks and service marks of MFMER.

MC1604-37rev0303

After finding a small apartment andgetting Bill settled in, Martha flewback to Colorado to her job and totake care of their business. Billstarted treatments, twice a day,Monday through Friday, for 30 days.Along with the radiation treatmentsto his head and neck came the sideeffects of burns to his tongue andthe loss of saliva. Emotionally, he took inventory of his life andsought spiritual guidance, but found himself feeling angry and depressed.

While struggling with coming togrips with having cancer, Bill’s now long-time friend and cancersurvivor, Wayland Eppard ofRochester, gave him some of thebest advice he’s ever received.

“I was at a point where I did notwant to get another book on livingwith cancer,” Bill says. “Waylandunderstood my struggle and toldme that anybody can die fromcancer but it takes courage to learnto live with it. He was a godsend tome because he didn’t give me aninch of sympathy but lots of sup-port. What he said made me takethe position that I wanted to survivemy cancer.”

Bill turned to his physicians forinformation and trusted their skills.

“I had faith that they were the bestat their work and knew what wasbest for me. For one time in my life,I did just as I was told instead ofdwelling on dying,” he says.

Bill completed his radiation treat-ments, and on Aug. 8, Dr. Neelchecked him. That day also was Billand Martha’s wedding anniversary.

“To my surprise and gratitude, Dr. Neel told me ‘you’re cancer-free’,” Bill says. “I couldn’t haveasked for a better present.”

Martha was equally relieved.“Through an experience like thatyou realize just how short life canbe,” she says.

Martha describes herself and Bill aspeople who like to keep working,doing things. They compartmental-ized the cancer as an occurrence intheir lives and got on with living.They sold their business in Coloradoin 1999 and moved to the Taos areain New Mexico, a place they hadalways wanted to live, and builttheir new home. Both agree thatthey have become better partnersand appreciate each other more as a result of the cancer experience.

“I’m so thankful that Marthainsisted on going to Mayo Clinicand for the care and support Ireceived there; otherwise I mightnot be here,” Bill says.

After seven years, Bill is regainingsaliva, and the senses of smell andtaste, which were impaired duringradiation treatment. Bill now livesby the philosophy that “each dayyou need to get out of yourself and see what you can enjoy because every day above ground is a good day.”

Continued from page 5

Bill Sands - Survivor

“To my surprise and gratitude, Dr. Neeltold me ‘you’re cancer-free.’ I couldn’thave asked for a better present.”

& AQ Will I get sick

from mychemotherapy?

That question is easier to answerthese days because of a class ofeffective antinausea drugs devel-oped in the past decade. This class of drugs is called 5-HT3 blockersand includes Zofran™, Kytril™ and Anzemet™.

Oncologists, pharmacists and nursesat Mayo Clinic have developed anantinausea guideline for patientsreceiving chemotherapy. Thisguideline uses 5-HT3 blockers incombination with dexamethasone, asteroid, to control nausea andvomiting associated with thestronger chemotherapy treatments.

A few patients experience nauseaafter their first chemotherapytreatment, despite the 5-HT3 blocker and the dexamethasone(Decadron™). When the dosage of their antinausea medication isadjusted, these patients usuallytolerate the remaining chemotherapytreatments without nausea.

Thankfully, nausea and vomitinghave become the exception ratherthan the expectation with today’schemotherapy treatment.

John Wilke, R.N.,Oncology NursingSupervisor

Bill Sands