Another orphan

lionessdoe

I found this article yesterday. Its a touchy subject but according to research a very real one. One that our oncologists are not trained to recognize or treat. The statistics are staggering. I'm hoping to open a discussion, because talking about it, rather than keeping it a secret hidden beneath "I'm fine" is dangerous. Sorry about the font size! I certainly didn't have anything to do with it and have no way of changing it!

  

Decades After Cancer, Suicide Risk Remains High Renee TwomblyAfter seemingly successful treatment, the price of surviving cancer for some people is so high that the risk of attempting suicide, succeeding at it, or having suicidal thoughts remains elevated for decades, according to two new studies. This research demonstrates that mental health counseling, along with physical care, is a must for some, if not all, long-term survivors, say the authors. And this finding is true for both childhood and adult survivors. "We are only just beginning to acknowledge that we have this huge population of people who are long-term survivors and whose treatment and illness may have had consequences on their current functioning," said Julia H. Rowland, Ph.D., director of the office of cancer survivorship at the National Cancer Institute. View larger version: In this pageIn a new windowDownload as PowerPoint SlideJulia H. RowlandOne study, published August 20 in the Journal of Clinical Oncology, indicated that 12% of 266 adult survivors of childhood cancer reported thoughts of suicide or suicide attempts some 20-plus years after treatment. The other, reported in this issue of the Journal (see p. 1416), found a 50% increased rate of suicide among 375,000-plus American women treated for breast cancer compared with the general population. This study, believed to be the largest population-based investigation to date of long-term suicide risk after cancer treatment, also looked at 345,000 women in four Scandinavian countries and found that their risk was also elevated, an increase that varied from 25% to 53%. Several studies have tracked suicide or suicidal thoughts in cancer patients shortly after treatment, but these provide a new glimpse into how some cancer patients continue to have difficulty coping many years after treatment, Rowland says. She calls the findings "very provocative" and says that more follow-up will be "very important" to explain this emerging picture of persistent risk of suicide in cancer survivors. At this point, the studies raise as many questions as they answer, she says. For example, the study of breast cancer survivors accesses a huge database but does not include interviews that would shed light on a motivation for suicide. By contrast, the findings in the childhood cancer survivor study were based on personal accounts but were limited to one center that treated referred survivors who may have come to the clinic precisely because they were having issues, she said. Still, Rowland admits that the essence of these early findings surprised her. "I just don't know how to frame the issue yet." Next Section The Problems Are "Never Over"The childhood cancer study is only now possible given increasing success in treating these cancers, the authors say. "Most people are doing fine, but there is a serious concern about the minority of survivors who have thoughts of ending their lives," said lead author Christopher Recklitis, Ph.D., a psychologist and director of research in the Perini Family Survivors' Center at the Dana-Farber Cancer Institute in New York. Recklitis and his colleagues evaluated a group of 226 adult survivors of childhood cancer who came to their center for scheduled visits. The participants had a mean age of 28 years and were interviewed an average of 18 years after their initial diagnosis for a range of cancers, including leukemia, lymphoma, sarcoma, and Wilm's tumor. The researchers asked the survivors about their physical health, quality of life, suicidal thoughts, signs of depression, and pain; they found that 29 survivors reported suicidal symptoms. Even though only 11 of these patients were considered substantially depressed, many of the participants conveyed feelings of hopelessness, Recklitis said. Many reported problems with pain control and physical function, as well as concern about their appearance. The researchers found that factors associated with suicidal symptoms included younger age at diagnosis, a longer time since diagnosis, and radiation treatments to the head-an older treatment for leukemia that sometimes produced growth retardation and physical disfigurement, impairment in memory and cognitive functions, and increased risk of second cancers. These issues can be especially tricky for young adults to handle, Recklitis said. "Life presents us with different tasks at different points in life, and these developmental transitions are when different issues of the past catch them up. "These survivors often tell me their problems are never over," he said. "Patients in their early 20s complain of chronic pain, as well as possible infertility, heart problems, cognitive disabilities, and a whole host of troubles even their grandparents haven't yet faced. They are our success stories, but when you are talking about long-term survival from childhood cancer, you are talking about the burden of late medical effects." Recklitis said that the study points to the need to closely integrate long-term oncology care with mental health care. "Everyone has this on his to-do list, but many can't figure out how to overcome traditional barriers, such as a fragmented mental health care and insurance system," he said. "In this study we show why it is so important that they move forward." Previous SectionNext Section Few Suicides, Yet Twice the RiskAs for most children currently treated for cancer, most women treated for breast cancer can expect to live for many years-the current 10-year relative survival for breast cancer in America is 78%. Most research suggests that suicide risk declines several years after diagnosis for most cancers, but several small studies in Canada and Scandinavia have turned up an increased risk of suicide in breast cancer survivors despite equally rosy long-term outcomes for breast cancer treatment in those countries. To determine if that same level of risk exists in the United States, a team led by NCI researchers pulled together statistics on 723,810 breast cancer survivors treated in the United States, Sweden, Denmark, Finland, and Norway between 1953 and 2001. For the U.S. study, the researchers looked at cancer incidence from the large Surveillance, Epidemiology, and End Results (SEER) database, which had been linked to data on suicides routinely reported to the National Center for Health Statistics. Their Scandinavian colleagues provided data culled from detailed computerized medical records. The researchers found that, in all countries combined, the number of suicides observed among the breast cancer patients was 37% higher than expected, on the basis of general population rates. That figure translates into four extra suicides per 100,000 person-years, according to the study's lead author, Catherine Schairer, Ph.D., of NCI's division of cancer epidemiology and genetics. In the United States, 245 breast cancer survivors committed suicide, making the risk 50% greater than would be normally expected, she said. "The risk of suicide in breast cancer survivors is higher than you would expect if general population rates applied; however, the probability of a breast cancer survivor committing suicide 30 years after diagnosis is less than 1%, so it is very small proportion," said Schairer. Even so, the population potentially at risk is substantial, the authors say-women with breast cancer account for one in five of all cancer survivors in the United States, numbering about 2 million women in 2001. Schairer added that although the U.S. data did not reveal whether women who committed suicide had a recurrence of their cancer, the risk was elevated with increasing stage of breast cancer and it remained elevated throughout the follow-up, sometimes 25 or more years after diagnosis. One of the study's co-authors, Patricia Ganz, M.D., said she was initially skeptical of the notion that suicide risk persisted so long in breast cancer survivors. Ganz, a researcher at UCLA's Jonsson Comprehensive Cancer Center and a pioneer in the study of breast cancer survivorship, said she had not seen suicidal tendencies in the patients that she treats, and that "it was surprising to me that the risk of suicide was along the whole continuum of breast cancer survivors, which reinforced the notion that breast cancer is a chronic disease." Although the "strength of this study is that it is very large and population based, and I believe the data," Ganz added, "I would not now say that if you survived breast cancer disease free that you are at a high suicide risk. Like any other observational study, this one is hypothesis generating but still supports the need to attend to the mental health needs of survivors." Previous Section   Physical and/or Emotional Roots?The JNCI study authors stick to facts indicated by the data and refrain from speculating why breast cancer patients might be prone to suicide risk. But Rowland suspects that long-term fear of recurrence does not play a big role, even though breast cancer is unusual in that it can come back many years after treatment. "Is this really a reflection of people's lingering terror of this disease, and are they giving up prematurely?" she asked. "My clinical sense about most people is that they are amazingly resilient and that there are usually other mitigating factors that predispose someone to be suicidal or hopeless, helpless," Rowland said. "Some of those are disease related, more advanced disease, poor prognosis, and aggressive treatment that leaves you functionally impaired." William Breitbart, M.D., chief of the psychiatry service at Memorial Sloan-Kettering Cancer Center, says that although those factors are indeed important, treatment of both childhood and breast cancer can leave the survivor with several psychosocial problems, not least of which is damage to a person's sense of who they are or want to be. "Losing a breast may disrupt your sexual identity and affect relationships. Childhood cancers often leave young adults with a new set of problems that makes coping with life difficult at the very time they are forming their identities," said Breitbart, who has studied the reasons why terminally ill patients can want to hasten death. These studies do not show, however, that depression could cause both a patient's cancer and subsequent suicidal tendencies, he said. "There are those who will want to beg the question, suggesting that preexisting depression reduced immune system functioning to the point that it was the cancer's causative agent and that this depression also accounts for suicide. "As far as I am concerned, that notion has been disproved through several large studies," he said. "I see these studies as evidence that dealing with cancer is stressful in a myriad of physical and emotional ways." However, treating survivors is a whole other issue. Besides problems with insurance and the mental health system in general, Ganz says these problems can be intimidating for oncologists, who are not trained to deal with psychological trauma. "We all know that we need to attend to the mental health of survivors, because there are problems that are hidden from the average medical practitioner. But a lot of patients don't want to go see a psychiatrist or a psychologist and want this provided as part of their routine care," she said. "Still, unless you are lucky enough to have a social worker or psychologist by your side, you don't want to ask questions that you don't know how to answer." © Oxford University Press 2006.

vlnrph

Very interesting - there is now a mandate that the Commission on Cancer has established regarding Psychosocial Distress Screening in order for a facility to maintain their accreditation. It seems to focus on the newly diagnosed, understandably, but may be helpful in getting some folks into treatment or at least making them aware that help is available.

The long term situation might be better handled more informally for many, through support groups (even internet ones like bco!) and the person's family, church, etc. An excellent area for further reasearch! 

lionessdoe

I've tried in so many ways to get help for the depression I feel since my diagnosis. The popular spoken and unspoken message is that I should be grateful I am alive, focus on the positive, just shut up and stop talking about it. I have also had a lot of personal tragedy since my diagnosis and I found it easy to assign my depression to those losses. But when I read this article while researching the topic for my job, I suddenly felt this incredible burden lift off my shoulders because what I feel, the sadness over what treatment has done to my body, my life, my relationships, ............. everything ......... It literally changed who I was; well, all of it is normal. I also had an epiphany! I have been waiting to get better in spite of all evidence to the contrary; even expecting it. Hope springs eternal! But I haven't. It just continues to get more difficult, more painful, more debilitating. Professional help has not worked. Medications have not worked. This article helped me realize this will continue and I will just have to learn to incorporate each new increment of loss into my new normal as a realistic expectation and stop setting myself up for dissapointment. I feel so strongly about doing something about this orphan. Even as I write this, I know there are so many others who feel the way I feel and don't dare discuss it, because they know they will be shut down. And I'm just talking about the depression, not suicidal ideation. Do we all recognize how brittle life after cancer can be? Will it ever be acceptable to talk about this huge statistic face to face with someone who never experienced what we have experienced? How do we circle the wagons for this type of suicide prevention when the professionals we turn to don't even recognize this vast truth and can't therefore acknowledge the normalcy of it?

I have been running in circles, bouncing around like a ball in a pinball machine trying to heal my soul with one professional after another. Instead of help I am shamed and sent in a different direction that leads to nothing but another meaningless direction for almost 5 years. And then this one little article tells me its OK. I can stop now. It's all normal! I am sharing this with my psychologist. I have been educating the educated since my second born son was diagnosed with dyslexia in 1987. I'm tired of it. But the truth is we are all on our own when it comes to acquiring something that the average professional does not even know about. We have to educate them. The hardest part is finding someone who is willing to let the patient be the teacher! This part of the journey delivers its own level of depression and exhaustion. But somehow, some way, I'm gonna find someone who will listen, ackowledge, validate so I can move on.

vlnrph

You have great insight and understanding which could be used to aid others struggling with similar issues. Have you thought about posting this on the Relationships, Emotional Crises, Anxiety and Depression forum? 

I usually tell people that I could almost forget I am a cancer patient, except for the lymphedema! Here, you will find some long term sisters whose perspective has perhaps evolved over time. My clinic has a psych-onc nurse but I felt guilty taking up her time once I was through active treatment. We can all help each other, maybe in small ways that don't even seem significant. Thanks for sharing. 

lionessdoe

Thanks, but I aid other 5 days a week 8-4:30. I'm pretty burnt out on that. I am rarely here anymore. Maybe when I retire?