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Cancer's forgotten generation

HAYLEY MICK

From Monday's Globe and Mail

Latest comment posted at 12:27 AM EST 09/07/08

They're underrepresented in clinical trials and sometimes misdiagnosed. Their rates are rising. But as young adult patients mobilize, Hayley Mick finds, they're becoming 'the buzz in onco-town' ...Read the full article

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  1. Chazz Michaels from United States Outlying writes: with all the cancer phobia out there, and the reduction in smoking rates, among others, you would think cancer rates would be dropping?
  2. Paula Mccoy from St. Laurent, Canada writes: HI There, I think its a great article. As part of Cancer's younger adult group, I feel that its about time that our voices are heard and I think its about time that there are more servies to us available. I think we have been forgotten for way too long.
  3. Kim Philby from Ottawa, Canada writes: Renee Bennett begged not to be sent back to the oncology ward because it was full of old people?? Wow, that's some complaint. I didn't know cancer wards were supposed to ensure that patients were surrounded by their peer group when being treated for cancer.

    While it may be true that cancers sometimes go undiagnosed in young adults because doctors don't expect to find it, I think it's a bit of a stretch to claim that young adults with cancer are 'forgotten.' What does that mean exactly? Are young cancer patients not receiving treatment? What is it that they expect out of the system that they're not getting? Are their expectations realistic?
  4. Kate Burton from Wilmington, NC, United States writes: As a survivor myself I understand how Ms. Bennett felt. It is hard to explain to others how isolating it can be to be spending hour after hour with people that you have nothing in common with except for the fact that you are fighting cancer. I have had people get angry with me when I explain that breast cancer is different for younger women than older women. Not only in terms of the disease itself but what it may mean to the rest of your life.

    I was lucky, I already had small children when I was diagnosed but I have spoken to women who were in their 20's when diagnosed. Disfigurement, mastectomy, reconstruction, ovarian suppression, menopause, fertility or lack thereof, trying to figure out how far into a relationship you should be before you mention that you have/had cancer. Significant stalling or end of career dreams, long term side effects. It is different for younger people who can't take early retirement, are less likely to have health insurance and financial nest eggs and whose survival rates have not changed in over 30 years. It is more difficult than you can understand to listen to someone worry about not making it to their grandchild's graduation when you're hoping to make it through your own child's kindergarten. To listen to people talk about how their treatment has really interfered with their weekly schedule of social activities when you are dragging yourself to work.

    Those who post snide or sarcastic responses are clearly using a defense mechanism because they still think it can't happen to them. I am incredibly grateful that I have received treatment and am not 16 months in remission but I have long term side effects most people can't imagine. Yes, these are forgotten patients but thanks to the internet they are finding each other and supporting each other. And I'm awfully glad they are there.

    http://www.aftercancernowwhat.wordpress.com
  5. Kim Philby from Ottawa, Canada writes: Kate Burton: Okay, so you felt isolated, irritated by some of the priorities of older patients, and you raised the point that cancer for young people is different in many ways. I'm not saying your points aren't valid, but, I repeat my question: what do you want out of the system that you didn't get?

    Oh, and if your comments about sarcastic remarks being a defense mechanism of someone who thinks it can't happen to him were directed at me, I suggest you leave off the two-bit amateur psychoanalysis; a month ago I attended the funeral of a family member only four months older than I who died of metastatic colon cancer, and right now I'm feeling very mortal, thank you very much.
  6. J S from Canada writes: Kim Philby - Kate Burton did not say she was irritated by the priorities of the older patients, just that she found it difficult (I think there is quite a difference). I also think it is obvious from her post what she would have wanted from the 'system'. It is also a different experience to have a family member with cancer, than to be the person with cancer. Both situations are extremely difficult, but quite different. I think you could tone down the sarcasm and open up your understanding a little bit.
  7. Kim Philby from Ottawa, Canada writes: JS: I'm trying to understand what it is these younger patients want, but noone is being specific. Maybe, since it's obvious to you, you can spell it out for me. And I don't think it takes a lot of reading between the lines to discern how Ms. Bennett feels about older patients' views.

    Frankly, the sense I'm getting from this article and some of the comments is that there is an element of elitism and 'ageism' going on here, that these younger patients have unreasonable expectations of entitlement from 'the system'. I can understand that younger persons with life-threatening illnesses may feel cheated out of their fair share of life; I would, too. It's a sad thing, but what is the medical establishment supposed to do about it? I presume doctors are targetting research and clinical trials where they feel they will do the most good.
  8. Woman of Reason from London, Canada writes: Kate, thank you for your post and for braving the insensitivity and pettiness of posters like Kim Philby. I wish you all the best. I really appreciated this article. My mother was diagnosed with oral cancer in her early 20s. The operation altered her face but did not disfigure it in a particularly brutal fashion. She had me at 27, then a bout of liver cancer, two bouts of lung cancer before finally dying in her early 40s. For that reason, I never thought of cancer as a young persons disease. Having grown up with a parent who was dying slowly and looking after two grandparents, I am very much aware of my own mortality and very grateful to have been, so far, spared the incredible ordeal that my mother faced.
  9. Kim Philby from Ottawa, Canada writes: Woman of Reason: care to live up to your name and explain exactly how I'm being petty and insensitive? It sounds to me like the insensitivity is coming from the other side - i.e., old people with cancer have frivolous priorities. (By the way, I don't consider myself old, but somewhere between young and old.)

    Maybe old patients can be just as scared of cancer. Maybe they can feel cheated, too.

    If you really are a woman of 'reason', don't toss around accusations without backing them up.
  10. Never Out of the Woods from Ottawa, Canada writes: Listen, as a survivor of cervical cancer at 23, I can tell you - the impacts of losing your uterus at that age are quite different that they would be at 40, 50 or 60. I don't think I'm being ageist or selfish to point that out, nor do I think that those advocating for those of us facing such challenges are in any way attempting to negate the rights of older or younger cancer survivors. Would anyone argue that programs targeting child cancer survivors are ageist??

    I can't tell you how comforting it is, even as I approach my mark of five years cancer-free, to have a group out there who seems to understand what this was like and want to make a change. Hopefully the days of having zero percent of the research targeting my age group, and of feeling compelled to support huge organizations that did incredibly little to understand my one little case, are coming to an end.
  11. Stuart Croall from Canada writes: Chaz Michaels - I think it is interesting that cancer rates are rising, and it's interesting that we aren't more curious as to why.

    The Kim Philby conversation - I don't think the question is that younger patients feel that they deserve any special treatment, it's a question that younger patients face different issues than patients of other age groups and, often, there are not supports available to address these issues.

    From my perspective, I was diagnosed with Leukemia shortly after graduating from university. I had only had termemployment at that point and was looking for work at the time of my diagnosis. As a result I did not have any kind of short term or long term disability benefits, which would be enjoyed by many later-career people, and we had to go on social assistance as a result. I realize older people could find themselves in this position as well but, on balance, a much greater percentage have established themselves in a career or have accumulated saving or have established insurance plans.

    Additionally, I don't think health concerns of young adults are taken as seriously as other age groups. A young person can present with symptoms, but because most conditions are very rare in young adults, symptoms that would warrant follow-up in a child or older adult are often dismissed as nothing serious in younger adults. I believe the article provides at least two good examples of this happening.

    The article also points out that young adults are underrepresented in clinical trials. Given that effectiveness of treatments for leukemia (and other cancers, no doubt) can vary by age, the fact that effective treatments are not being studied to as great a degree is, it seems to me a concern.

    I hope this is enough 'reason' to bring this conversation back to earth.
  12. D T from Canada writes: I'm a researcher in a major Canadian cancer centre. I'm not sure exactly what these 'young' people are asking for, though to call those in their mid-thirties 'young adults' is really stretching it.

    We can't change the age makeup of our patients. Are you asking for an oncology centre devoted to the young(er)? In every city?

    Do you think that present research into cervical, breast .... cancer is not applicable to the young?
  13. Stuart Croall from Winnipeg, Canada writes: I guess this conversation will stand as a demonstration to me of the futility of having 'conversations' in the comments section of the Globe and Mail. D T - 'Researcher' - the treatment protocol for Leukemia changes at, what, 18? Why? Why can we cure 80% of 'kids' with ALL and only 40% or something of adults? Obviously that isn't an absolute line...what is the line? And how do we know there isn't a line at 75? 80? 55? We don't know, do we? But the one thing we do know is that it IS NOT THE SAME. And some of these people in their mid thirties were in their 20s when they were diagnosed. And, really, I guess it depends what criteria you're using to call a person young. Please, let's get it all on the table. I realize you think that we will all bow down and accept your wisdom as a 'researcher' but you have said nothing of substance other than informing us that your arbitrary idea of what a 'young' adult is is different than other peoples' idea of what a 'young' adult is. Good on ya! And nobody ever asked for an oncology 'centre' for the young anywhere. Specific research here and there, maybe. Shared information about the unique needs of younger patients, perhaps. No need for a 'centre,' so it isn't nearly as outrageous as you would like to suggest. But thanks for coming out. I'm glad we have sympathetic people like you researching cancer for us. I'll be able to sleep much better now.
  14. bob london from Canada writes: Unhealthy Boomers clogging the system? I have a clamp left in from a surgery and have to wait for them to take it out. I could only imagine how bad non boomers have to wait for cancer. We shipped my brother in law to Texas for his testicular cancer since Vancouver was too slow. He was recovering in BC before he would have had an MRI at VGH.
  15. D T from Canada writes: Stuart Croall: I can't help but notice that anytime someone with credentials dares to voice an opinion they are attacked for the arrogance of actually having some knowledge of the topic at hand.

    You act as if your observations on the treatment of leukemia have been ignored by the research community. Let me dare to suggest the opposite. Age-specific cancers are, and have been for a long time, of great interest.

    The young people in the article were complaining more about the social aspects of their treatment. Again, I ask the person who didn't want to be in an oncology group with 'old' people; want do you expect us to do?
  16. Luke R from Toronto, Canada writes: Wow. A lot of petty a-holes on here. Is it cancer patient season? Do you people have nothing better to do then to gang up on cancer patients. And yes, having cancer as an old person is different than as a young person because when you are 70 you are closed to the end of your life anyway (there I said it!). So that's the difference.
  17. Karen Joblin from Halifax, Canada writes: I’ve been researching the interpersonal relationships of young adults with cancer for my Masters thesis now for two years. In fact, I am working with Young Adult Cancer Canada (the organization mentioned in the article). Throughout my work, I have discovered that there is a lack of research and knowledge regarding both medical and non-medical issues of young adult cancer survivors and as a result, a lack of services that are tailored to their unique needs. Kim Philby: to try to answer your question the term “forgotten generation” refers to this issue and, I think, was well demonstrated in the article by using statistics (i.e., less than 1% of $ 76 million being spent on this population), the under-representation of young adults in clinical trials and the discrepancies in survival rates of young adults when compared to children and older adults. Certain cancers are on the rise in this population and we’re not sure why. Couldn’t more of than 1% of $76 million be allotted to try and answer young adult cancer issues such as these? What about the number & nature of support services? Turning to their expectations, I’ve spoken with many young adults diagnosed with cancer and one of the most difficult issues they faced when dealing with the health care system was not being taken seriously and often facing what they felt was age discrimination. My perspective is that, bottom line, they do not have unrealistic sense of entitlement; they are simply asking for what every Canadian receiving health care deserves; respect. They may be a small population but they are unique and deserve to have the best medical and non-medical care possible. Are we doing our best? Why shouldn’t we strive to offer them what they need? Presuming that doctors are targeting research and clinical trials where they feel it will do most good is just that, a presumption. Kim, I feel as though if you looked into the facts a bit more, you may want to retract some of the comments you’ve made today.
  18. m m from toronto, Canada writes: Stuart Croall: I agree with what you are saying. When I was 18 I was diagnosed with Hodgin's Lymphoma and underwent treatment for the next year or so. I am happy to say I am healthy and doing well now. From personal experience, I can tell you that finding out you have cancer and going through treatment is scary - at any age it would be the same. I had nothing but wonderful treatment from 'the system'... all the doctors and technicians, everyone involved. I could not have asked for better care in that sense. However, what this article does point out is that there is a lack of social support for young adults aged 18-34 - relative to other groups. There are a few wonderful organizations out there now, Alli's Journey and RealTimeCancer, that are helping young adults going through these difficulties connect and share their experiences. I don't think that the point is that young people expect preferential treatment, rather it should be recognized that there are many different concerns which are perhaps not addressed by traditional support groups, catering to a specific disease or different age group. Thankfully there are many developments and this issue is becoming more visible. I have nothing to complain about regarding the medical treatment I received. I had wonderful family and friends to support me through that time. Many people however are not as lucky, and I am thrilled that there are more groups now to help these young people, just as I think there should be groups to provide support to everyone in such a time. And it really does make a difference to be able to speak to other people going through the exact same things. We all know that cancer strikes indiscriminately, but we don't generally associate it with the image of young adults. Thanks to this article for shedding some light on a group that is often overlooked.
  19. K S from Halifax, Canada writes: Wow...I cannot believe some of the comments that have been written here. It is shocking how insensitive/ignorant some people can be. I don't think young adults are being unrealistic. Imagine that your 18 year old son or daughter is sick with cancer. They cannot go to a pediatric hospital for treatment because they are 'too old', and yet when they are treated at a regular hopsital, everyone around them is in thier 60's, 70's, or 80's (sometimes older!). The thing is we feel isolated and alone. We have to deal with issues that no one else can truly understand unless they are in our shoes. What we want is more understanding, more research, more support groups and more awareness (and probably other reasonable things that I am not thinking of) The fact is, of all age groups, the rates of young adults surviving cancer (18-35 or 40), is not improving, and perhaps is decreasing in some cases. Do the research and you'll find it (or ask Geoff Eaton - he has done the research). Young adults are misdiagnosed many times, therefore treatment is delayed and prognosis is more grim. I do agree, having someone with cancer in your family and having it yourself is two diffucult, yet very different situations. It is the difference between empathy and sympathy. I survived cancer and I was alone, battling depression, anxiety, fear, death, fertility issues - amoung many other issues myself, because there wasn't a support system. I too, was misdiagnosed, because not neough knowledge is out there about young adults and cancer. I must say it is improving dramatically, but there is a long way to go. Keep fighting young adult cancer survivors/patients/supporters. Maybe one day we'll be understood and supported.
  20. K S from Halifax, Canada writes: I must clarify too, that I received excellent medical attention once I was diagnosed and people started to take me seriously. I am a health care worker, and even with my indepth knowledge I had to fight for my life and for my health, because of the misunderstanding or a lack of knowledge. There needs to be more awareness I guess is the big issue - which can lead to improved survival rates and better support. We are not being 'petty' as cancer patients - people assume we are because we are young. Just try walking in our shoes, and maybe you'll understand slightly. It is one thing to have a 70 year old relative to die from cancer, it is another thing to have a 20 year old relative die from cancer. In my case I've lost over 9 friends from cancer - all were under the age of 28. Try dealing with that emotional reality. I've had to face my own death, as well as have some of the only people who understood me, die from this horrible disease. We do not seek 'special treatment' - you get the same chemo for Hodgkin's Lymphoma whether you are 20 or 90. The thing is, as pointed out here many times, younger adults deal with a lot of things that older adults do not - like fertility. Soem of us are not even offered to preserve our fertility and our right to have children. Some of us, yes, feel 'robbed' of our youth. Post-traumatic stress disorder (PTSD), as also a huge factor, no matter what age you are with cancer, but it is more pronounced in younger populations who cannot connect with other thier age. Your mental health affects your physical health, because depression and stress weaken the immune system. There is so much more to this debate than people are willing to realise. I hope this can help DT and Kim Phibly, for example, to have an inkling of an understanding. It is more than just wanting to have someone our age to chat with - there is a whole social-emotional-physical relationship between it all.
  21. Stuart Croall from Winnipeg, Canada writes: D.T. - I apologize for being so dismissive. I will confess I am presently having my fair share of frustrations with the health care system, and I'm afraid I may have unleashed my frustrations on you. I agree with you that it is not realistic to have wards dedicated to young patients. Indeed, this was never a problem I had, as I met a number of 'younger' people while undergoing treatment. This may have been a function of my type of cancer and its treatment. I do think younger people have different cancer experiences but, as far as the actual health care system is concerned, there are far more issues in terms of how diagnosis and care are handled generally that need to be solved that will improve the experiences of everyone in the system before we expend too much energy customizing the system to age groups. O
  22. T M from Canada writes: I agree, what a bunch of a-holes. It's like if any one group is singled out and identified as unique, even if it is in the service of better support and treatment, the people on this board have to cry out against it. Disgusting.
  23. S. P. from Cape Breton, Canada writes: Unless some of these posters, like Kim Philby, have walked a mile in these young adult cancer patients' shoes, they really have no right to their narrow-minded opinions. I am a somewhat older cancer survivor (was in my 40s the first of three occurrences), and I can only try to imagine how traumatic it must be to have cancer at a much younger age.
  24. D T from Canada writes: Stuart Croall: Thank you for your gracious apology.
    As for my part I'm sorry if I come across as insensitive. Typed opinions are woefully inadequate for expressing the range and depth of feelings. I think we can all agree that cancer is a horror at all ages and that we need to do all that we can. It's just that magnitude of the problem and the limits on our resources.......
  25. John S from Canada writes: Acutally to address one point raised here, the differences seen between adults and children in response to chemotherapy in some cancers (specificaly acute lymphoblastic leukemia) might in fact be directly due to the fact that pediatric protocols are better suited to treating this disease than adult protocols EVEN in adults up to age 30, 35 and even beyond. A series of retrospective articles published from various countries has demonstrated this consistently and is summarized in an excellent editorial by Charles Schiffer in the Journal of Clinical Oncology (Mar 1, 2003).
  26. Jorly fuster from Canada writes: Cancer rates will continue to skyrocket as long as we live in this toxic environment and feed our cells an overabundance of animal products. Couple that will lack of exercise and smoking (yes, some people still do it) and you've got rising cancer rates.

    Last year the Internation Cancer Fund published a report in which they give ideas or assurances for people that want to make an effort to avoid cancer, no guarantees of course but just some guildelines to make it harder for cancer cells to turn on. Read the report, which in my mind must have been pretty sobering for most people as it listed things like: Avoid alchohol, only eat 500grms or less of meat per week, be as lean as possible without going underweight etc....

    This for many people in our society is probably seen as impossible as it requires a lifestyle change. And with so many 'cultural attachemnts' we've given to health eating (e.g. vegetarian? what are you a hippie?')('no alcohol? what are you Muslim?') it's no wonder people haven't been able to dissasociate healthy living from some kind of spiritual, religious, social movement and just get on with living well.
  27. E T from Canada writes: To those wondering why cancer in young adulthood is different, here is an example: my mother was undergoing post-mastectomy chemo, at age 60, with 2 grown children, a husband of 30 years, a job and a house in the suburbs. She found herself in the bed next to a 20 year old woman in roughly the same shape. Her observation was: 'as awful as this is, complete with baldness and a missing breast, I cannot imagine being young and single and dealing with it. At least when I get home and go back to my normal life, it is a life with my husband, and my supportive friends and coworkers. The thought of trying to hang out with friends or meet new friends in bars/dance clubs etc, go out on dates, interview for jobs etc - the things 20 yr olds do - in this state is much worse'.

    Now if a bald, disfigured, vomiting, mouth-sore, joint pain, constipation, and a whole lot of other side-effects-suffering woman can understand this, surely some of you can?
  28. Friendly Anglo from Ottawa, Canada writes: Yayyyy Kim. Stick up for the older folks, of which I'm one...almost. I'm not saying that one generation deserves better/more/quicker treatment than the other. All the same. I nursed my mother thru radiation and surgery. She was older, but very scared too.
  29. K H from Toronto, Canada writes: How did this article come off as a competition between older and younger cancer patients/survivors? Cancer is a horrible disease, no matter who it attacks at what age, race, sex or part of the world. We all need to work together here, not attack each other with cynical posts. To be honest, I'm quite surprised by the responses evoked by this article, as I thought it did a great job at highlighting the experiences of the young adult cancer patient. In my second year of uni, at age 20, I found a lump on my collarbone which was dismissed by 4 doctors as a cyst/nothing to worry about... until I persisted and found one who removed it, conducted a byopsy and found I had Lymphoma. Now I am not sure if it was my age which lead the health care providers to not take me seriously but throughout my journey I certainly felt like I "didn't belong" in the cancer world. Once diagnosed, I had great care, went through chemo and radiation and have now passed the 5 year remission landmark. Cancer is a horribly isolating disease, especially at a young age when no one expects you to have it. Going through life, let alone your 20's with a bald head, no energy and no one you feels really gets it is life changing. I think the reason it is especially tough as a young adult is that you don't know who you are at this point. This is the time of your life where you've gone away from the support of your parents, are striving to discover yourself and be independent...which makes it so much harder to deal with your own mortality. It cerainly made me grow up faster. But it also made me aware that there were not support networks geared towards this age group, at least when I needed it. I am thankful to all those who have been working at focusing support to ALL cancer patients, and especially thankful to those who are adressing the shortfalls that exist in the young adult age group. I can only hope that there is and will continue to be support out there to all who need it.
  30. M M from Toronto, Canada writes: The 'lived experience' should really be the Gold Standard regarding the legitimacy of email responses to this article. I was diagnosed with neck cancer when I was 30, and yes there are definite differences depending on the life stage you are at upon diagnosis. I remember feeling very isolated on the cancer ward, in the hospital treatment areas and waiting rooms, among my work peers, and friends and family. I worried about visible disfigurement, profound mental and physical energy depletion, uncertainty regarding my future potential relationships/dating, childbearing, job interviews, even getting insurance... Things one might not look at in the same light at other stages in life.... At seven months post diagnosis I knew I had to reach out to others my own age experiencing similar feelings etc, so I joined Wellspring - a centre for patients and family experiencing cancer, and it was a life-changing experience. I became a peer volunteered there for 5 years helping other cancer survivors whatever their age 'get their lives back - albeit changed forever'. This article is wonderful in identifying a pertinent health issue, there was little written material on young patients with cancer when I was diagnosed almost 15 years ago. "Stuff Happens" no matter what age, it is all in how you choose to navigate through it and e.g. the supports you can garner around you. If you can link with others experiencing similar challenges - all the more power to you. Wellspring helped me change as a person and as a health care professional - one shoe fits all is not the case for many situations in life....
  31. Karalee Grant from Winnipeg, Canada writes: Kim Philby your negative comments about this article has really made you seem ignorant. You have never been through anything that us cancer patients have been through nor could you even begin to imagine what we have been subjected to. You asked what we are missing or what do we want I'll spell it our real simple for you we want to have treatment plans made for us I was subjected to 6 months of "old people" chemo because there was nothing set up for a cancer patient my age after the 6 months of useless "old people" chemo they put me on the "childrens" chemo. Where is the Young adult chemo? Why isnt there a treatment plan out there for young adults? How come I had to waste 6 months of my life going though treatment that wasn't even helping me?? I know personaly I do not appreciate having a Dr play russian roulette with my future as I am sure you would not apreciate it if our places were reversed.
  32. Darren Neuberger from Canada writes: I'm responding to the first post by D T - I believe you were referring to me when you said this ; though to call those in their mid-thirties 'young adults' is really stretching it. The last time I checked... As a researcher - your job is to find protocols/treatments/ and ultimatley cures for cancer. With over 200 different types of cancer - you are faced with an incredible task and we cancer survivors can't thank you enough for all you do :-) I think many of you are only seeing a small portion of what this article is intended to do. Yes, there is a great deal of isoltaion for US young adults. Yes we are grouped with older people. I have nothing negative to say about this.While I was an inpatient for 5 months - I became friends with more than my share of older patients. Having conversations with these amazing people, they were all great listeners and a lot of fun, however, they have done things with their lives that I had yet to experience - even at the OLD AGE of 34!! I was only married for over 2 years - if I died my wife would have been a widow at 29! A huge component that is missing for younger cancer survivors is post cancer. The what now - dealing with going back to school/work/having a family fertlity/. I was turned down for 3 jobs when I was trying to get back to the " normal life" because the businesses knew I had cancer - jobs I was over qualified for. Young adults lose friends because of cancer. Side effects post cancer - give your doctor a list of issues you're dealing with - I did and she said she doesn't know much about long term stuff - her job is to get you well - I love my hematologist - but this is frustrating. D T - what is your role as a researcher? Can you shed some light on long term side effects post cancer? I could go on forever - I have a passion for ALL cancer survivors - young and old - we want to let you all know that we have different issues & your finally starting to hear about them from young adults. Darren Neuberger

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