Cancer survivor

‘I’m still here’: cancer survivor sets new record in two-day fell run.

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Nicky Spinks completes 132-mile double Bob Graham Round across Lake District’s highest peaks in less than 46 hours

Nicky Spinks on Lake District fells
Nicky Spinks: ‘Being told I had cancer was hard to deal with but it keeps me going through the races when I’m struggling.’ 

There are probably easier ways to celebrate surviving breast cancer than running 66 miles with more than 27,000 feet of ascent. There are definitely easier ways than doing it twice, back to back, and setting a new record in the process.

But for Nicky Spinks, 49, who was diagnosed with breast cancer in 2005 and underwent a hysterectomy in 2012, completing one of Britain’s more demanding athletic trials was her way of commemorating her achievement.

“I want to celebrate the fact that I am still here, living and running, 10 years after being diagnosed and treated,” she said after completing a double Bob Graham Round, a non-stop fell run that takes in the Lake District’s highest peaks.

She said her experience with cancer was the driving force: “It has changed my perspective on things and made me do challenges as soon as I can, and to appreciate it that much more. Being told I had cancer was hard to deal with – there are not many things worse – and that keeps me going through the races when I’m struggling.”

The Bob Graham Round is no mean feat, completed by fewer than 2,000 athletes since its inception in 1932.

Over time the Bob Graham Round became a challenge in its own right. But only one other runner, Roger Baumeister in 1979, has completed two back-to-back in under 48 hours.

Spinks, a beef farmer from Huddersfield, completed the run last weekend in a record time of 45 hours 30 minutes, beating Baumeister’s time by over an hour.

She had set out at midnight on Friday, and Dan Bailey from UKHillwalking said she “was soon a couple of hours ahead of her own schedule, a position she maintained throughout the two days, despite the hot weather”.

Baumeister was there to offer his congratulations at the finish, along with fell running legend Joss Naylor. Now 80, Naylor ran the section from Wasdale to Honister on the Sunday by way of encouragement. Spinks’s dog, Wisp, had completed four legs of the run with her, along with 22 supporters who carried her rations and clothes. During the run she took 10 breaks of no more than a few minutes and one 10-minute power nap on the Sunday morning.

Once done, there was only one way to celebrate her remarkable sporting feat: curry and chips – although her plan to wash it down with the beers she had stashed in the boot of her car was met with complications.

Nicky Spinks
Nicky Spinks took 10 breaks of no more than a few minutes and just one 10-minute power nap during the run. Photograph: Amanda Lui

“It would have been good to have a beer last night but I locked my keys in the car,” Spinks said. “The sinking feeling was fleeting, as I was spark out in my tent within minutes. Friends got the breakdown people out and sorted it all out for me as I was in no fit state.

“My brain is a bit fuzzy and muddled at the moment. I feel incredibly satisfied and happy. It’s been an incredible weekend, even with the slightly anticlimatic ending.”

Spinks started training for the round in October and it was the longest she had run without sleeping, having completed the 36-hour L’Echappée Belle challenge in France last August.

“I felt fairly relaxed all the way round as I wasn’t really trying to set a speed record like I have in the past. It was more about completing it. I was able to look after myself, go a little slower – a steady pace – and enjoy it really.”

She discovered her aptitude for endurance running fairly late in life – in 2001 she ran a competitive four-mile fell race for the first time and since then has broken record after record.

In an interview with Runner’s World she said the secret to her success was being steady: “I’m not the fastest runner; I think when you’re older you take more care of yourself. There are lots of runners that come into the sport later. Runners who start in there teens are impatient, they get away with a lot, but the benefit of age is patience. When you set goals you give yourself a year, not two weeks!”

It is an outlook she maintains today. “It’s not about being the fastest, it is about going at a steady pace and being well organised, and of course having a good team around you to keep you company during the low moments,” she said.

For her most recent challenge she had only one wish: “I just wanted the weather to last. It was a bit hot but apart from that it was pretty perfect – I was incredibly lucky.”

Lee Procter, from the running brand Inov-8, for whom Spinks is an ambassador, said: “To complete one Bob Graham Round is tough enough but to do two back-to-back is truly incredible. I ran with Nicky at various times during the challenge and I don’t think she ever stopped smiling. What she achieved will go down in fell running history.”

Follow-Up Care Crucial for Pediatric Cancer Survivors.

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Today 80 percent of children with cancer survive for five years or longer after their diagnosis, and most young survivors grow up to lead long lives. But many deal with after-effects of cancer for their entire lifetimes. Nearly three-quarters of these childhood cancer survivors will later develop a chronic health problem as a delayed effect of treatment, making long-term health monitoring critical to their well-being.

Pictured: Charles Sklar

Pediatric endocrinologist Charles Sklar directs Memorial Sloan-Kettering’s Long-Term Follow-Up Program, which has screened and managed the health of about 2,000 pediatric cancer survivors since its launch in 1990. Dr. Sklar is an active participant in a national research group known as the Childhood Cancer Survivor Study, which monitors the health of pediatric cancer survivors into adulthood to analyze the late effects of cancer treatment and determine how to better detect and treat them.

In a recent interview, Dr. Sklar discussed the Long-Term Follow-Up Program’s role in raising awareness of these lingering effects and why lifelong vigilance is essential.

Are parents of pediatric survivors typically prepared for dealing with late effects of treatment that can impact their child long-term or for the rest of their lives?

Most families that come to us now have heard of these effects, which is somewhat different than when our program started. Oncologists typically discuss most of these potential late effects at the time of diagnosis.

That being said, when you’re the parent of a child with a life-threatening illness, there’s only a limited amount of information you can take in. And often the survivors themselves are not aware because they may have been very young at the time of diagnosis, so these aren’t things that were necessarily discussed with them directly. That’s something we often need to do when we see them in our clinic.

What are the most common delayed effects of cancer treatment such as chemotherapy or radiation on children?

It’s difficult to generalize because treatments are very different for different diseases, and younger children have different vulnerabilities compared to older children. Endocrine, growth, and reproductive problems are very common. Heart and lung problems certainly do occur, but only in select groups of people, and there are very few people who actually suffer from clinically important heart or lung impairments.

How do you diagnose and treat late effects?

Every patient gets a tailored treatment summary that looks at all the therapies they received – including the types and doses of chemotherapy or radiation – as well as the patient’s gender and age at the time of treatment.

We develop a care plan based both on our own experience as well as published guidelines we were instrumental in developing, and we begin a screening program. Some screenings require a yearly blood test; specialized testing like echocardiograms or pulmonary function testing; or sending patients to experts for tests such as neurocognitive testing.

If the tests continue to be normal, there’s obviously nothing to do but continue the screening. Along the way we educate families and survivors about the need to do many of these tests for the rest of their lives.

If we see abnormalities in our screening tests, we treat them or send the patients to specialists who can treat them or perhaps follow them with more sophisticated testing.

How has research on late effects of cancer treatment changed the way that pediatric cancer patients are now treated after their initial cancer diagnosis?

Many changes in treatment have been informed by these types of studies. It’s important to understand that the full scope of late effects and a complete understanding of their prevalence can take 20 to 30 years to come about, so there’s a lot we don’t know yet.

But now we do know, for example, that radiation to the brain – which used to be a standard treatment for almost all children with leukemia – put these children at risk for learning, growth, and endocrine problems. Today, radiation to the brain is only given to a very tiny fraction of children with leukemia, the most common cancer that we see in children.

Radiation to the chest, particularly for young women with Hodgkin’s disease, has now been associated with a very high risk of breast cancer as well as heart problems for both men and women. So the volume, dose, and even the use of radiation has been reduced among these patients over the last 20-plus years.

Are there any new findings from the Childhood Cancer Survivor Study that you find especially compelling?

One study just coming out looked at the interaction between traditional cardiovascular risk factors like high blood pressure, diabetes, and high cholesterol in patients who had cancer treatments that put them at risk for heart problems, such as radiation to the heart area.

While we knew that these children are at risk for certain kinds of heart problems as they age, now we also know that adding in traditional cardiovascular risk factors increases their cardiovascular risks several fold. Their lifetime risk for heart problems and death from heart disease can be significantly reduced if appropriately managed.

What challenges remain in helping childhood cancer survivors?

We need to educate and train physicians and other health care providers to be experts in survivorship. We now have a fellowship here in pediatric survivorship offering specialized, in-depth training to people who want to have a career in taking care of survivors. It’s just now becoming available as a formal area of medical specialization.

Cancer Survivors Celebrate Their Cancerversary.

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Cancer Survivors Celebrate Their Cancerversary

ANGIE WANG
December 6, 2013

The attendant walked into the hospital waiting room and called my name. I took a deep breath and hurried through the door. “I’m always surprised when my name is pronounced properly at a doctor’s office,” I said.

He chuckled. “You’ve been here before.”

“Yes,” I said. “Today are my five-year scans.”

“You’re a frequent flier!” he said. “Good luck.”

I lay on the bench and slowly slid into the doughnut-shaped machine. As I did, I noticed the ceiling. It was painted with a scene of sunlight peeking through some leafy branches.

For all the cruel randomness and vagaries of cancer, the disease, as a brand, is extremely consistent. There are the recognizable symbols: the bald head, the yellow wristband, the pink ribbon. There are the well-known treatments: chemotherapy, radiation. There are the familiar expressions: Stage IV, metastases, remission, cure. But of all these elements, perhaps none is more enduring than the metric of the five-year survival rate.

When I first learned that I had aggressive bone cancer in my left leg in 2008, I did what many patients do: I immediately searched out the five-year survival figures. I then did the grim calculation of how old my children would be at that time and whether I would outlive my parents. Over a brutal year of chemo, surgery and rehabilitation, I kept an indelible ticking clock in my head. Sometimes I wondered, “Why won’t the clock speed up?” Other times, “Why won’t it slow down?”

And as I slogged through subsequent years of scans — first every three months, then every four, then every six — and experienced what survivors call “scanxiety,” I imagined what the five-year benchmark would feel like. Like an actor practicing my Oscar acceptance speech, I even rehearsed exactly what I would do: break down in tears, give a party, buy plane tickets to Hawaii.

And yet, as I approached the milestone in recent weeks, I began to feel more ambivalence. What happened? Or, had I been wrong all along?

The concept of the five-year survival rate for cancer was introduced in the 1930s. Initially, the designation was used for blood cancers, which grow fast and were extremely lethal at the time, said Dr. Siddhartha Mukherjee, a cancer specialist at Columbia University Medical Center and the author of “The Emperor of All Maladies,” which won a Pulitzer Prize. For those patients, reaching five years was considered something of a miracle. “The idea was you could define a time point where it would make sense to think about that cancer as being cured,” Dr. Mukherjee said. “From there it crept backward into all cancers.”

By the 1950s, five-year survival figures were becoming standard, and by the early 1970s the National Cancer Institute began releasing regular statistics for most forms of the disease. In the face of such authoritative endorsement, the public accepted these figures as meaningful.

But from the very beginning, many scientists were uneasy with grouping all forms of cancer under one metric of survival. “Five years is quite an arbitrary number,” said Julia Rowland, the director of the National Cancer Institute Office of Cancer Survivorship. “For some cancers, if you haven’t had a recurrence in two years, your rate of recurrence drops considerably. For others, like breast cancer, you can have a recurrence at any time.”

For these reasons (and more), Dr. Mukherjee called the five-year figures a “vestige of the past” and predicted that in the near future they would be replaced with more individualized benchmarks. “Just as it makes sense to personalize cancer therapy, it also makes sense to personalize what survival means to an individual patient,” he said. Until then, he considers the five-year survival figure an “instrument of convenience.” In his book he tells the moving story of delivering flowers to a patient when she reached the date. “I was responding to the iconography,” he said. “We mark birthdays, and if you’re a cancer physician you mark survival days.”

Patients, too, mark survival days. Almost everyone I know who’s been told they have the disease can tell you the date. But how to recognize that “cancerversary,” especially the five-year one, is a source of surprising unease. In conversations with nearly two dozen survivors, I found patients divided almost evenly between those who view their five-year “cancerversary” as a joyous occasion and celebrate with gusto, and those who view it as a more solemn day and acknowledge it with quiet gratitude and continued vigilance.

On the joyful side, one breast cancer survivor told me she held a “queen party” at which she decorated a cake in the shape of Queen Elizabeth’s coronation crown and wore a purple ball gown and crown of jewels. Another told me that on her “five-year celebration day,” her husband treated her to lobster tail and crab legs at Red Lobster.

A veteran of testicular cancer told me that when he hit five years, he felt invincible and started running across streets and dropping his surfboard into disproportionately huge waves. “Then I settled down a bit,” he said. “But I still cannot be killed.”

On the more subdued side, one breast cancer survivor who learned she had the disease in her early 30s told me that every year on her “cancerversary” she sends out “a sappy email to all the wonderful people in my life, thanking them for all they’ve done, and continue to do, to make my life so special.” When she hit five years, she asked her doctor what to think.

“Well, five is better than four,” he said, “but six will be even better.” She’s now at eight.

The parents of a boy who was found to have Stage IV neuroblastoma at age 4 told me that when they approached the five-year mark, they planned a party. “But when the time came, we just felt too superstitious about it,” the mother said. “Why tempt fate?” The boy reached the mark of eight and a half years this week, she said, and is healthy and happy.

As for me, when my oncologist announced that my scans were clean (I had reached five years with no sign of cancer), I did a small fist pump but was otherwise more stone-faced and sober than I had anticipated. I spent a few minutes grilling him about ongoing challenges, and he asked me to come back in a year for my next appointment. When I stepped outside, instead of sobbing uncontrollably as I had after previous scans (and instead of buying those tickets to Hawaii), I stood in silent awe at my good fortune. Unlike winning an Oscar, I had done little to earn this moment. I am among the lucky ones, at least for now: My biology had taken the chemistry. Like anyone in this situation, I have met many who never made it this far.

Four years ago, on the first anniversary of the diagnosis of my cancer, I saw my surgeon, John Healy, and asked what message he would give my daughters if I died. He said he would tell them what he has learned treating this disease for decades. “Everybody dies,” he said. “But not everybody lives. I want you to live.”

That has been my motto ever since: to live. If my cancer comes back, I want to have learned that lesson. If it doesn’t I want to have learned it, too. It’s the message I took from one year; I take it today from five years; and I hope to take every year that I slide back into the doughnut hole and look up at the sun peeking out through the leaves.

 

Menopausal symptoms more troublesome for cancer survivors.

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Recent data suggest that the severity of menopausal symptoms tends to be worse in women who survive cancer compared with other women. However, psychological and social quality of life measures were better among cancer survivors, researchers wrote.

“The reason for this difference in emotional well-being is not known but may be attributable to the better social and psychological support associated with a cancer diagnosis compared with that ofmenopause,” Jennifer L. Marino, MPH, PhD, of the department of obstetrics and gynecology at the University of Melbourne in Australia, and colleagues wrote.

The researchers measured differences in symptoms, severity, impact on quality of life and sexual function between cancer survivors and non-cancer patients at The Menopause Symptoms After Cancer Clinic.

The researchers recorded cancer survivors’ (n=934) and non-cancer patients’ (n=155) menopausal symptoms using the Greene Climacteric Scale; past-week symptoms using the Functional Assessment of Cancer Therapy breast cancer subscale and endocrine symptom

Subscale; and sexual symptoms using Fallowfield’s Sexual Activity Questionnaire.

The majority of patients were previously diagnosed with breast cancer (82%), while a smaller proportion was diagnosed with gynecological cancer (10.5%), or hematologic and colorectal malignancies (7.5%).

According to data, cancer survivors were more likely to be severely affected by vasomotor symptoms such as hot flushes and night sweats (OR=1.71; 95% CI, 1.06-2.74) and reported more frequent (6 vs. 3.1 in 24 hours;P<.001) and more severe (P=.008) hot flushes, compared with non-cancer patients.

 “Seventy-nine percent of cancer survivors and 61% of non-cancer participants reported current severe vasomotor symptoms. Thirty-six percent of cancer survivors and 23% of non-cancer participants scored in excess of the upper bound of the published reference range for vasomotor symptoms,” researchers wrote.

Conversely, cancer survivors demonstrated less psychological and somatic symptoms compared with non-cancer patients (P<.001). Further, they reported better quality of life. However, there were no statistically significant variations in physical or functional well-being, gynecologic symptom severity or sexual function, researchers wrote.

“Both expected and surprising, these results highlight that all menopausal women, including cancer survivors, need effective treatment options for their hot flashes and sexual symptoms,” Margery Gass, MD, executive director of the North American Menopause Society, said in a press release.

PERSPECTIVE

 

JoAnn E. Manson

  • A burgeoning number of women worldwide are both cancer survivors and entering menopause. It is clearly a clinical challenge to treat menopausal symptoms in women with a history of cancer because many are not candidates for estrogen therapy. The study by Marino and colleagues indicates that cancer survivors may have a higher prevalence and severity of vasomotor symptoms than women without a history of cancer. The findings highlight the importance of evaluating cancer survivors for the presence of menopausal symptoms, assessing their needs for treatment and discussing available treatment options. Additional research in this field and an expanded arsenal of nonhormonal treatment options for menopausal symptoms will be essential to improve the clinical care of this growing patient population. In this regard, the recent approval by the FDA of a nonhormonal treatment for vasomotor symptoms is a step in the right direction.
  • JoAnn E. Manson, MD, DrPH, NCMP
  • Past-president of the North American Menopause Society
    Endocrinologist and professor of medicine, Harvard Medical School and Brigham and Women’s Hospital
    Chief of Preventive Medicine, Brigham and Women’s Hospital

 

Source: Endocrine Today

Subsequent neoplasms of the CNS among survivors of childhood cancer: a systematic review.

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Childhood cancer survivors are at risk for development of subsequent neoplasms of the CNS. Better understanding of the rates, risk factors, and outcomes of subsequent neoplasms of the CNS among survivors of childhood cancer could lead to more informed screening guidelines. Two investigators independently did a systematic search of Medline and Embase (from January, 1966, through March, 2012) for studies examining subsequent neoplasms of the CNS among survivors of childhood cancer. Articles were selected to answer three questions: what is the risk of CNS tumours after radiation to the cranium for a paediatric cancer, compared with the risk in the general population; what are the outcomes in children with subsequent neoplasms of the CNS who received CNS-directed radiation for a paediatric cancer; and, are outcomes of subsequent neoplasms different from primary neoplasms of the same histology? Our search identified 72 reports, of which 18 were included in this Review. These studies reported that childhood cancer survivors have an 8·1—52·3-times higher incidence of subsequent CNS neoplasms compared with the general population. Nearly all cancer survivors who developed a CNS neoplasm had been exposed to cranial radiation, and some studies showed a correlation between radiation dose and risk of subsequent CNS tumours. 5-year survival ranged from 0—19·5% for subsequent high-grade gliomas and 57·3—100% for meningiomas, which are similar rates to those observed in patients with primary gliomas or meningiomas. The quality of evidence was limited by variation in study design, heterogeneity of details regarding treatment and outcomes, limited follow-up, and small sample sizes. We conclude that survivors of childhood cancer who received cranial radiation therapy have an increased risk for subsequent CNS neoplasms. The current literature is insufficient to comment about the potential harms and benefits of routine screening for subsequent CNS neoplasms.

Source: Lancet

 

Depression and anxiety in long-term cancer survivors compared with spouses and healthy controls: a systematic review and meta-analysis..

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Background

Cancer survival has improved in the past 20 years, affecting the long-term risk of mood disorders. We assessed whether depression and anxiety are more common in long-term survivors of cancer compared with their spouses and with healthy controls.

Methods

We systematically searched Medline, PsycINFO, Embase, Science Direct, Ingenta Select, Ovid, and Wiley Interscience for reports about the prevalence of mood disorders in patients diagnosed with cancer at least 2 years previously. We also searched the records of the International Psycho-oncology Society and for reports that cited relevant references. Three investigators independently extracted primary data. We did a random-effects meta-analysis of the prevalences of depression and anxiety in cancer patients compared with spouses and healthy controls.

Findings

Our search returned 144 results, 43 were included in the main analysis: for comparisons with healthy controls, 16 assessed depression and ten assessed anxiety; of the comparisons with spouses, 12 assessed depression and five assessed anxiety. The prevalence of depression was 11·6% (95% CI 7·7—16·2) in the pooled sample of 51 381 cancer survivors and 10·2% (8·0—12·6) in 217 630 healthy controls (pooled relative risk [RR] 1·11, 95% CI 0·96—1·27; p=0·17). The prevalence of anxiety was 17·9% (95% CI 12·8—23·6) in 48 964 cancer survivors and 13·9% (9·8—18·5) in 226 467 healthy controls (RR 1·27, 95% CI 1·08—1·50; p=0·0039). Neither the prevalence of depression (26·7% vs 26·3%; RR 1·01, 95% CI 0·86—1·20; p=0·88) nor the prevalence of anxiety (28·0% vs 40·1%; RR 0·71, 95% CI 0·44—1·14; p=0·16) differed significantly between cancer patients and their spouses.

Interpretation

Our findings suggest that anxiety, rather than depression, is most likely to be a problem in long-term cancer survivors and spouses compared with healthy controls. Efforts should be made to improve recognition and treatment of anxiety in long-term cancer survivors and their spouses.

Source: Lancet

Lack of Specificity of Plasma Concentrations of Inhibin B and Follicle-Stimulating Hormone for Identification of Azoospermic Survivors of Childhood Cancer: A Report From the St Jude Lifetime Cohort Study.

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Many male survivors of childhood cancer are at risk for azoospermia. Although both the levels of follicle-stimulating hormone (FSH) and inhibin B are correlated with sperm concentration, their ability to predict azoospermia in survivors of childhood cancer remains uncertain.Patients And methodsSemen analysis was performed and serum levels of FSH and inhibin B were measured in 275 adult male survivors of childhood cancer who had received gonadotoxic therapy. Receiver operating characteristic (ROC) analysis was performed to determine the optimal inhibin B and FSH values for identifying patients with azoospermia. The patient sample was divided into a learning set and a validation set. Sensitivity, specificity, and positive and negative predictive value were calculated.ResultsInhibin B was dichotomized as <!–= 31 ng/L or more than 31 ng/L and FSH was dichotomized as </= 11.5 mIU/mL or more than 11.5 mIU/mL based on results of the ROC analysis. Using these values, the specificity of the serum level of inhibin B for identifying azoospermic survivors was 45.0%, and the positive predictive value was 52.1%. The specificity for FSH was 74.1%, and the positive predictive value was 65.1%. CONCLUSIONNeither serum inhibin B nor FSH is a suitable surrogate for determination of sperm concentration in a semen sample. Young men and their physicians should be aware of the limitations of these measures for assessment of fertility potential.

Source: JCO

To Life (again) as a Two-Time Cancer Survivor.

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I’m walking a fine line between jubilation and anxiety. As a two-time ovarian cancer survivor, I’m nearing the anniversary of my recurrence. Although I feel fine, this type of cancer isn’t the most accommodating.

My nerves always manage to creep up on my dates with the ‘gists – in my case, the oncologist and gynecologist, which alternate every three to six months.  Following the tests, as I wait for the results, my mind never fails to think of family and friends… several who are also battling cancer now and a few who lost their fight.

My most recent visit this month was no different. I feel good physically but my mind was racing. My aunt who is battling a recurrence from lymphoma; my college friend Julie contending with pancreatic cancer; and Mary, a mom of three who is fighting to win the battle with breast cancer her sister lost. I also thought of a dear friend, Kelly, who passed away from ovarian cancer in 2010.

I wiped the tears from my eyes as I listened to the doctor review the results and then dictate a note into my chart. He said: “She presents back to the office today for routine cancer surveillance. It should be noted… years since her recurrence and remains clinically NED.” (NED is the acronym for “no evidence of disease.” It’s the clinical term for saying I’m fine.)

I left the office realizing how lucky I am. I can’t change the past but I do have a team of amazing physicians who are a part of the Mayo Clinic Cancer Center working daily to change the future of medicine. They are doing research and advancing treatments every day. And I – as a survivor – am a great example of their work.

Five years is a major milestone in the cancer world. It’s a date most cancer patients wonder if they’ll make. It’s a precious gift. Of time. Of comfort. Of hope.  Although the doctors are looking at my official five year marker as next year (commemorating the end of my active treatment ), I’m going to celebrate now. A massage, a pedicure and a glass of champagne. L’chaim!

Source: Mayo Clinic.