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Spiritual care is central to patient care

BY GUEST BLOGGER | JUNE 25, 2014

Linda Emanuel
Somewhere along the line of my now long career, I became interested in learning more about the role of religion and spirituality in the care of patients needing palliative care. As other areas in palliative care got better and better, spiritual care remained little studied. Fortunately, since its origins with leaders such as Dame Cicely Saunders and Dr. Balfour Mount, inclusion of a person's spiritual needs has been a core part of the care provided by hospice as well as palliative care.

Indeed, experience suggests that when spiritual care is present, patients and family caregivers alike seem more comfortable as they go through their difficult times.

Spirituality, of course, is a very personal matter, but as doctors we ask our patients lots of personal questions when it is relevant to their case, such as information about their sex life. It is part of caring for the whole person. Clinicians may feel like they are crossing a boundary by raising the subject of religion or spirituality with their patients. Is it their place to raise the issue, or should they simply be prepared to answer questions from, and offer resources to, patients who raise the subject?

Prayer does come up in our interactions with patients. We have the option to call upon the chaplain. The role of the clinician is assessment; so isn't it important then, if facing a crisis, to involve a chaplain or the patient's clergy if the person is in spiritual distress? I think so.

Recently the HealthCare Chaplaincy Network sponsored six landmark studies on this issue. One of them, "Hospital Chaplaincy and Medical Outcomes at the End of Life," conducted by Tracy Balboni and her colleagues at the Dana-Farber Cancer Institute in Boston, focused on the presence and helpfulness of chaplaincy visits for patients with advanced cancer. The research showed how chaplain care influences patient well-being and decision-making for people facing serious illness. Over half (52.4 percent) of the 250 respondents reported not being visited by a chaplain. Of those patients who were visited by chaplains, 88 percent said the chaplaincy visit was helpful.

Researchers also collected qualitative data in response to the question: "Please explain why your time with the chaplain was helpful or not helpful." Several patients said that the chaplain was "comforting," noting that the discussion, support and prayer with the chaplain were helpful. Though this data is still in the process of being collected, some preliminary conclusions indicate that though chaplain visits may not be as frequent as desired, when they do occur, they are generally helpful to patients.

In several of the studies, the benefit of having chaplains available went beyond religious matters to human spirituality even for the non-religious. The implications are that chaplains can help with communication in the service of whole person care that integrates a person's spiritual resources with other resources in their well-being. Spiritual care is central to caring for patients. It should not be ancillary.

Certainly not everyone who is dealing with cancer as a patient or as a survivor is in the hospital where they can meet with a chaplain. There is a new resource where you can find thoughtful and practical spiritual care information, resources and support provided by professional chaplains: ChaplainsOnHand.org. Besides the good content for anyone regardless of religion or beliefs, it enables you to chat with a chaplain by phone or email.

Linda Emanuel is director of the Buehler Center on Aging, Health & Society at Northwestern University Feinberg School of Medicine and and the Buehler professor of Geriatric Medicine. She also holds the title of Senior Vice President for Research & Education, HealthCare Chaplaincy Network.

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Survivorship research

BY KATHY LATOUR | JUNE 19, 2014

Kathy LaTour blog image

Every other year, the leading cancer survivorship researchers gather to share information on the needs of those who have gone through cancer and are working to live the remainder of their lives with health and joy. Supported by the ACS, NCI, LIVESTRONG, and the CDC, the 2014 meeting has brought attendees from some 30 foreign countries in addition to leading researchers in the United States.

Since its beginning in 2002, in addition to almost doubling the attendees, the meeting has added a patient advocate component that shows active survivors how to advance their causes.

The subtitle of the meeting is Advancing Survivorship through Multilevel Collaborations and includes researchers who provide the critical evidence to drive change, the health care providers who care for the patients, and the patients themselves. Changing how patients are treated, particularly when there is no component involved that will make someone money, is like trying to turn the Titanic in the middle of the iceberg field. Or as one presenter said, "We don't have a health care system, we have a payer system."

But the ongoing research gives validity and power to those who fight for us, whether we are living past treatment, have chronic cancer or live with metastatic cancer. The discussions ranged from the challenge of smoking, financial burden, employment issues, older Americans, underserved populations, and caregiver issues, among others. I am particularly interested in the caregiver issues. In the past decades, as cancer has become an outpatient disease, it is possible to be diagnosed, treated, live or die without ever being in the hospital. But who said the caregiver wants to be in the role of nurse and who said they are competent? And what if the caregiver does not understand or cannot comprehend the role of caring for someone?

A study I read recently talked about caregivers having severe depression and today a speaker from the Institute for the Study of Cancer Caregivers at Memorial Sloan Kettering Cancer Center touched on the subject. Studies from the Institute have shown a number of outcomes. For example, we now know that during survivorship, caregivers are more prone to distress than patients. There will be lots more on this meeting in the upcoming issues of CURE.

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Misdiagnosed, but not misunderstood

BY GUEST BLOGGER | FEBRUARY 24, 2014

Becky Busch

One of the many unfortunate things about having a rare tumor was that for some time no one was certain what it was. In fact, I was misdiagnosed a couple of times.

The first surgeon that I came in contact with believed it to be esthesioneuroblastoma, which is quite rare. It has affected maybe 800 people in the world. However, it is a slower moving tumor, and he had me convinced that this thing could have been slowly growing for up to five years without me being the wiser.

His plan was to do surgery. I had my first CT scan on a Friday and he wanted to do surgery the following Tuesday. He said he couldn't do a biopsy beforehand because the tumor was in my brain. Being in 'fix it' mode I agreed to it. To sum up: This man, who was very nice by the way, and who happens to be a surgeon, said he could remove the tumor. It sounded good to me. My family flew in the next day and put the kibosh on that plan.

At first I argued with them. I wanted this tumor out of my head, and there is a man (who went to medical school) who says he can do the task, so why not let him.

While I was lying in the ICU that weekend, my family worked tirelessly to come up with a plan to make me listen. Finally, after the relentless efforts of my parents and siblings they made contact with the Anschutz Cancer Center at the University of Colorado hospital and MD Anderson. They believed a biopsy could be done through my nose.

I'll admit that after the biopsy, things became fuzzy for me. While the doctors convened on my case and treatment, my condition got worse. I was hardly able to get out of bed, and the prescription painkillers had me pretty much out of it. So much so that I don't remember the majority of things that happened in this time. I was finally hospitalized at the university hospital, and I began my first chemotherapy treatment. It was a 96-hour infusion of taxol, cisplatin and 5-FU. Nurses practically wore haz-mat suits while administering these toxins into my veins.

After my treatment, a couple weeks later, I started to feel better. A nurse was disconnecting my IV, and she started asking me about my condition. My sister was sitting in the room with me as I answered. I told the nurse it was esthesioneuroblastoma. My sister sat up and interrupted me, "Umm, Becks, you know that's not what you have, right?"

"It's not?"

"No. Don't you remember the doctor giving you the results of the biopsy in the hospital?"

"He did?" Like I said before, things got fuzzy. I didn't even retain important information. "What do I have?" I asked.

"Sinonasal undifferentiated carcinoma," she told me.

"Huh." I paused. "Is that better?" I asked with a ray of hope.

She shrunk in her chair. "No."

It turns out it was a more aggressive tumor. Instead of growing in five years, it grew in five months. It was also more rare, affecting 400 instead of 800, and it was classified as inoperable. They knew that it started in my sinuses and that is was some sort of carcinoma, but the word 'undifferentiated' pretty much meant they didn't really know what it was.

After six chemotherapy treatments and more than six weeks of radiation therapy, the tumor shrunk enough to be removed surgically. After the tumor was completely removed and available for further testing I was officially diagnosed with sinonasal teratocarcinosarcoma. When my surgeon told me the new diagnosis, I again asked, "Is that better?"

"No." Instead of being 1 in 400, I am now 1 in maybe 50-80 people in the world that have ever had it. It is highly aggressive and rare, and now we know that it is a polymorphic cancer, meaning it can affect and travel through blood, tissue and bone. In fact, part of the tumor had actually calcified and turned into bone--and you thought it couldn't get weirder.

Hindsight is always 20/20. If I had undergone that first surgery I most likely wouldn't have survived. Thank you to my family and friends who saved my life. You gave me the tools to live. You gave me a missile to take into a gun fight.

Being diagnosed with a rare cancer can be frustrating because there is not as much information out there on rare diseases. The study groups are small, so the statistics often sound very bleak. When I was looking into sinonasal teratocarcinosarcoma I was reading statistics like 'in a study group of 11 people, 8 died within 1 year. Of those who survived, 70% died within 5 years.' This was not encouraging information.

The support is not the same for those with rare cancers. The lack of support can be as small as not having our own color for a wrist band, and as large as minimal funding for research. There are no official parades, marathons or fundraisers for sinonasal teratocarcinosarcoma or the many other rare cancers out there. If you want those things for rare cancers you have to do it yourself. Sometimes that can make a person feel alone.

Everyone deals with trauma differently. For me I found that the best medicine was laughter. I found something to laugh about every day, and the amazing thing about laughter is that it is contagious. Others around us would open up more freely, and I have even made some lasting friendships from the waiting rooms in the cancer center. When you have a good attitude, you inspire other to do the same. Before you know it you won't feel so alone any more.

Becky Busch was diagnosed with a rare and aggressive cancer several years ago. Since surviving it, she has rediscovered her passion for writing. Among other things, she writes a blog about herself and her own battle with cancer at whoistherealbb.com.

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How to cope when Mama Bear has cancer

BY GUEST BLOGGER | JANUARY 31, 2014

Debbie Woodbury

At the beginning of my cancer journey, I understood what Maya Angelou meant when she said, "There is no greater agony than bearing an untold story inside you."

Once I opened up and started telling my cancer story, I started telling it a lot. After five years, the emotional part of my story has become easier to share - except in one area: My husband and my children. When I talk about them, the same tidal wave of emotion that hit me then hits me again. All I can do is accept and dive into the wave.

It's hard to explain, but anyone who loves doesn't need an explanation. My 20-year old daughter was a newborn when I held her in my arms and first felt it. An overwhelming surge of protectiveness washed over me. In an instant I claimed my primal mama bear fierceness and it imprinted on my psyche forever.

Fifteen years later, the phone rang. Because I was alone when I found out my mammogram was suspicious, I decided to sneak back to the breast center without telling my husband. Of course, I didn't want to go alone, but I put sheltering him over my own best interests. When I came home and told him the truth (and that I now needed a stereotactic biopsy,) I felt horrible about bringing him bad news (and about lying to him by omission.)

Four and a half months later, I had a surgical biopsy and returned, alone, to the breast surgeon's office to hear my diagnosis. When I think back on it now, I realize with some shock that my husband wasn't there because I kept him away (he had gone to every appointment and test since I leveled with him.) Again, I prioritized protecting him above letting him be there for me at a critical moment.

Through the entire diagnostic phase, we kept our 15-year old daughter and 12-year old in the dark until I had a treatment plan. When we finally sat them down, I was glad to tell them I wasn't going to die and would be back to normal after my mastectomy (shows what I didn't know back then.) I remember being shocked at their response, which wasn't good. When I look back now, I realize I had focused so intently on protecting them from bad news that I had deluded myself into thinking I had been successful.

After my mastectomy, I felt extremely isolated. As hard as it was to share bad news about my health, it was even harder to share the emotional fallout of living with cancer. My mama bear wanted to be better, happier and move on with my family, but I simply wasn't able to put cancer behind me so easily.

Now, when I speak with the Pathways Women's Cancer Teaching Project I talk about my children and husband knowing I will tear up because their pain still makes me very emotional. I push on because doctors and nurses need to know how significantly a patient's role as a wife and mother affects her cancer experience.

This is the unspoken burden of women with cancer. We are inseparable from our roles as caregiver, nurturer, confidant and emotional touchstone. We take care of others before we take care of ourselves. Our mama bear instinct is primal and viciously strong and it will over-protect what we care about most in the world - our partners, our children, our parents, our families and our friends.

We can't help it because our overwhelming drive to protect our loved ones, even to the detriment of ourselves, is a force of nature. We're never going to stop feeling and acting on it, but we must come to grips with reality. Even a mama bear needs to take care of herself so she can continue taking care of others.

This is what I learned the hard way and what I now share with you. In addition to your family and friends, build a support network that is there just for you. No one should do cancer alone - and by that I mean without other people who "get it" and are there to support you without needing you to care for them. Putting yourself first once in a while is necessary to healing. And then, when you're a bit stronger, you can get back to being Mama Bear.

Debbie Woodbury is the founder of WhereWeGoNow, a gathering place for survivors creating inspired healing, wellness and live out loud joy beyond cancer. Debbie is the author of You Can Thrive After Treatment and How to Build an Amazing Life After Treatment, a Huffington Post blogger, an inspirational speaker, a support volunteer with The Cancer Hope Network, a member of the Carol G. Simon Cancer Center Oncology Community Advisory Board, a patient educator with the Pathway Women's Cancer Teaching Center, a wife and mother, and a former very stressed out lawyer. Debbie was honored to be quoted in CURE Magazine in Survivor Defined and Seeing Red: Coping with Anger During Cancer. You can also find Debbie on Twitter and Facebook.

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CATEGORIES [ DIAGNOSIS, SURVIVORSHIP, COLORECTAL CANCER ]

24 Lessons to help savor the joy and heartbreak of life with cancer

BY SUZANNE LINDLEY | NOVEMBER 27, 2013

suzanne lindley blog image

"Life is a series of disastrous moments, painful moments, unexpected moments, and things that will break your heart. In between those moments: that is when you savor, savor, savor." ~Sandra Bullock

As Thanksgiving approaches, I am pulling from the thoughts of Sandra Bullock because life this year has been a series of all these challenges and more. Yet, it has given way to much celebration. There has been disaster in ways that are hard to describe, the pain of my mom's cancer diagnosis and the fear that ensued, the unexpected blessing of stable scans for myself, and heartbreaking loss of friends that were dear.

Life can, and has, thrown some difficult hurdles in my direction. However, there has been a cadence to the way life works and it has been in the breathtaking moments when the world should stand still, with little or no control, that I have felt unknown strength and abundant blessings.

Most of these blessings that I so gratefully enjoy include the muchness of family, special milestones and everyday magic. These days are relished because of the treatments and medical team that have worked so hard to keep me here...and this year to even give me a new smile. I cherish my friendships, too, for it has often been the simple touch, cyber hug or powerful thought that has given me the courage and hope to move forward. So, as I savor the "cancer calm" in the storm of stable tumors, these are some of the lessons for which I am forever grateful.

1. "Love is the answer." Jane and AJ Ali

2. "You are where you want to be." Loretta Baker

3. "Life is a treasure chest. What is your treasure today?" Leon Davis

4. "The bumble bee isn't supposed to be able to fly, and you aren't supposed to survive. But the bumble bee flies and you WILL survive." Jean DiCarlo Wagner

5. "Take a deep breath." Jean DiCarlo Wagner

6. "Hope is dope!" Snoop Dog

7. "Instead of thinking "it could be worse," remember "it can get better!" Desiree Gray

8. "Everyone is terminal; no one more and no one less." Gordon Gwosdow

9. "The footprints of friends will carry you and you have one very special angel watching over you." Russ Howard

10. "Oh Happy Day!" Bonita Jones

11. "Cherish the golden gossamer threads of life." Shirley Laverne

12. "We can make it to the top. We are angels!" Kevin Lebret-White

13. "We are here for each other through good and bad." Vicki Lehman

14. "No one can take away your ability to have hope." Keith Lyons

15. "Life doesn't happen around you, it happens between your own two ears." Keith Lyons

16. "Life is the most precious thing we have." Dalia MacPhee

17. "Hold fast and shine brightly." Brian McLeod

18. "Life is fabulous!" Erica Paul

19. "Talk doesn't cook rice." An old Chinese proverb I first heard from Nancy Roach

20. "If you go outside the box and open up yourself to new experiences, joy is there for the taking." Pam Schmid

21. "We have been blessed to know things others don't yet understand, and our challenge is a great one: We understand our mortality, and we revel in the blessing of every breath we draw and every day we see. Our job is to bring a little heaven to earth, in the form of faith and love." Tony Snow

22. "It's all about hope." Tami Thennis

23. "Find some hope." Shelly Weiler

24. Last but not least, Ronnie Lindley: "It will be OK!"

I am humbled by the rhythm of life; how it ebbs and flows. I am thankful for ALL of you that walk with me through the tragedies and triumphs of each day. You are treasured souls who have shown me that beauty often lies in the midst of struggle. You have helped me to strengthen my resolve. So as you enjoy the days and weeks to come with family and friends, however and wherever that may be; know that I am grateful for you. Happy Thanksgiving from our home to yours.

And with the words of Sandra Bullock, "Savor, savor, savor!"

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Redefining the word "cancer"

BY DEBU TRIPATHY | AUGUST 2, 2013

Debu Tripathy blog image

Can a simple act of a few individuals change how we think about cancer?

Well, not a few, anymore, but a growing choir of voices are now redefining the term "cancer." We have known for a long time that there is a continuum from benign to cancerous growth. We even have names for some of these, such as borderline malignancy of the ovary. In the case of ductal carcinoma in situ of the breast (DCIS), the survival of patients is equal to the general population, but it is often treated with surgery, radiation and tamoxifen.

The Institute of Medicine has called for not just a redefinition of names, but a realignment of the cancer culture of "detect and eradicate." A recent article (Overdiagnosis and Overtreatment in Cancer: An Opportunity for Improvement) in the Journal of the American Medical Association highlights this problem in cancer screening, where the knee-jerk reaction for any cancer is to treat low- and high-risk cancer with many of the same treatment, therefore exposing everyone to side effects and complications while many derive no benefit--because their chance of dying or having their life affect by their "cancer" was minimal.

Solutions proposed in this article include getting rid of the word "cancer" and using terms like "indolent lesions of epithelial origin"--this may alter behavior both on side of the medical team and the patient. Of course, one cannot just declare a new system into existence.

The medical system must provide safeguards that truly dangerous cancers will be diagnosed and treated appropriately. Even some cases of DCIS can recur as invasive cancer, which can then potentially spread and lead to death. This means more research on prognostic tests – a huge ongoing needed in oncology that involves molecular/biological assays and large follow-up studies to validate these tests. We have a long way to go on redefining cancer, but perhaps starting with labeling changes is at least a symbolic start – but hopefully will be followed by both a scientific and cultural shift.

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Being a “bad” patient

BY ELIZABETH WHITTINGTON | MARCH 7, 2013

Elizabeth whittington blog image
I used to be a model patient; I would be very pleasant, nod my head at everything the doctor told me, whether I agreed or even understood what he or she was telling me. I knew their time was important, so I tried not to ask too many questions and kept my appointments to a minimum.

I went to a specialist today for a minor medical issue, and I noticed that I had become a "bad" patient. Not only did I drink coffee in the waiting room when there was a "no food or drink" sign, I also answered emails on my phone (no cell phones – no exceptions!).

I remembered that I told my dentist that I would only get dental X-rays every other year unless there was an issue. And I told my gynecologist that I would not be getting a baseline mammogram at 35 because I had no risk factors or symptoms. "That's just what we do here," she said.

I also use my phone (no exceptions!) to tape record conversations with my doctor. I guess it's OK since I ask him first. I also ask a lot of questions: could A be related to B? Do I need that CT scan or is there an alternative? Can I get generic? What about X, could my symptoms be related to ____fill in the blank___? And if I think he or she is missing something, I always point it out again.

When I mentioned that I was a "bad" patient, several people told me, "Good!"

One person commented: "Bad" patients live longer! and another reminded me that doctors work for us, so I shouldn't be concerned with being a "bad" patient.

I've heard many a story by cancer patients and survivors who were diagnosed only by being a "bad" patient. And there are those who lived longer because of a treatment or clinical trial they asked about, or received follow up from a late effect that no one believed they had, until they met the right doctor--finally.

Although lighthearted, a friend compared me to Elaine in "Seinfeld." At least I won't have to worry about stealing my medical record to take off the fact that I was "difficult."

You remember the one...

Elaine's medical chart on Seinfeld

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Boldly and courageously

BY SUZANNE LINDLEY | AUGUST 20, 2012

The past few weeks have been laced with emotion. This morning the sadness and fear caught up with me. I stood in the shower and let my feelings unfold as the hot water soothed my body and a rush of tears began to heal my soul. During these summer months two of my loved ones have heard those three terrifying, life-changing words. My mom has been diagnosed with breast cancer and just last week we learned that my aunt has very advanced lung cancer.

The distortion of time and space that accompanies "cancer" has surrounded me yet again, with moments in time hanging like hours on end. Life has been unfolding in a blur. The initial paralysis of shock has subsided into a determined flurry of decision. There have been biopsies, surgeries, consults, results and difficult conversations. With all of them comes the knowledge that life will never again be the same.

A new normal has already started to surface. Office visits and follow ups, waiting rooms and procedures, treatments and side effects, tests and results are quickly becoming routine. How I wish I could shelter those that I love from this strange world of cancer; for the treasure of good health to surround them still.

Since that isn't the case, I am thankful I can help ease some of the unknowns and shine a light as they take the first steps of their new journey. Already, there has been an outpouring of support. How lucky we are to have resources and answers, expertise and friendship at our fingertips. To know that others have been where my family now stands is truly a gift. Together, we will step boldly and courageously toward a cure!

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LIVESTRONG offers parenting with cancer class

BY ELIZABETH WHITTINGTON | JUNE 21, 2012

I received an email this morning from LIVESTRONG about an education session for parents who have cancer. It's available online and in person. Details below:

The June 2012 LIVESTRONG Community Education Class will address the topic of parenting with a cancer diagnosis. Join us on June 28 from 6:30-8pm CST.

Dr. Vaughn Mankey will describe a framework for considering the unique parenting needs of each child during a parent's illness. He will also discuss key principles that parents can use to encourage coping and resilience in children. Class participants will also be able determine when children may need additional support and professional services. Classes are open to anyone affected by cancer (survivors, caregivers, family members, etc.) and are available to participate in person or online! RSVP here.

CURE also recently featured the topic in the Spring 2012 issue: "Honest Discussions Can Help Ease Kids' Anxiety About Cancer."

What has helped you in talking with children about cancer?

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Need to make a cancer decision: call this number

BY KATHY LATOUR | MAY 23, 2012

Hearing the words "you have cancer" should be followed by, "and now we will begin speaking a language you don't understand."

It's more than the medical jargon that makes it hard for us to absorb all the information; it's also feeling like our ability to understand the language we have spoken all our lives now comes at us from the end of a funnel, condensed into a stream of information that is unintelligible in its magnitude and complexity.

But we need to understand, more now than ever. We have decisions to make and everyone is asking us questions about what we want to do, and they want answers now.

Of course, the question is, how can we ask questions about something we know nothing about? It's a problem for every cancer patient. Lots of information and decisions to be made in a language we don't speak.

The Cancer Support Community, a new organization that until last year was Gilda's Club and the Wellness Community, has launched a new program called Open to Options that is designed to help cancer patients go to their appointments with a list of questions that will help them make the informed decisions they need to make.

Because I like to try out any new program that comes along, I called the toll free number for Open to Options at 1-888-793-9355. I was a little disappointed to have to leave a number, but Jim called me back within the hour.

I liked Jim immediately. He had one of those wonderful slow, deep voices that calmed me before we even started talking about the tough stuff. Jim explained that their job on the help line was to empower patients to communicate with their physicians no matter the issue. Jim is a licensed social worker and said many of his coworkers were oncology social workers and that everyone was well trained to work with cancer patients.

He also pointed out that the program was available at the Cancer Support Communities across the country. If you go to their website, you will see where they are located and their phone numbers to make an appointment.

Jim was clearly someone who knew his stuff. He had lots of resources he recommended for different issues. But his goal, he said, was to send patients back to their doctors with a list of questions that were typed up and ready to be answered. He even followed up with them after the visit to see how it went.

Those of us who have had cancer know it can be hard to talk to a doctor. We feel that if we ask a question, it can somehow be taken as a challenge and we don't want them to feel that way. Depending on the physician, some have little time for questions and need to be reminded that the person in front of them is a person with a cancer and not a cancer with a person attached.

Having someone like Jim in your corner can help.

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