As a patient advocate obsessed with long term survivorship issues I really appreciate all the info in this! And yes, survivorship issues should be considered a second level of standard care once the initial critical treatment phase ends. And I think every person diagnosed should receive at least 6-10 therapy sessions. No matter how anyone acts, we are all broken in some way by cancer.
I am a stage 3 rectal cancer survivor and I am so happy to see you discussing this. I was a healthy, fit 42 year old mother of 3, and cancer transformed my life completely. My newsletter, New Found Life,
Is all about the period of time after cancer. The changes I had to accept and navigate after cancer, including early onset menopause, a permanent colostomy and severe anxiety/PTSD symptoms left me questioning why everyone else seemed to think I was “finished” with my cancer experience!! The aftermath is real, and survivors need so much more support than they are given in most cases.
Thanks for telling your story, it means a lot. I only recently heard of the field of "psycho-oncology," but have not been able to access any practitioners. There is talk about psychological and emotional needs during treatment, but mine hit well after tmt was over and I was able to catch my breath. (When everyone has moved on, that is!)
Thank you so much for being here, Susan. You are not alone and the burden of surviving falls particularly hard on people with lung cancer who "weren't supposed to survive." I have heard this from many groups of lung cancer survivors over the years and it is completely unfair. You don't have to justify your being alive. Let me know if you are interested in resources for small cell survivors. You are part of a growing group looking for connection.
Thank you for even giving lip service to this issue. As someone treated for small-cell lung cancer over 2 years ago (and for a single metastasis a year ago), it has been extremely perplexing psychologically to be told I was going to die (twice!) and then that I am not. I am not complaining! But it's wreaked havoc on my relationships because those around me want to get back to normal and they feel a bit foolish for having grieved me; they think I made a mountain out of a molehill, and tend not to give me credit for having survived this thing so far -- and don't seem willing to acknowledge that the cancer can come back at any time. I have never felt so alone as I do now.
This is so important. Thank you. I’m one year post treatment for stage three ovarian cancer. I’m thrilled that yesterday’s scans and tests show that I’m currently NED. I’m scared because my great and thoughtful oncologist also told me that there is no timeline for OC when you are safe to say there won’t be a reoccurrence…..you’re cancer free. So I came home happy and nervous. Anxiety is with me always. Sometimes quietly whispering, sometimes shouting.
All these comments resonate with me - as does the original column. Thank you, everybody!
I'm a survivor of a rare GI cancer treatable principally by surgery - so much surgery that I spent 5 years post-diagnosis dealing with complications of all the surgeries. It's an "invisible" cancer and with no chemotherapy to deal with (because chemo doesn't work for this cancer) I felt as though I passed through the entire experience with nobody around me seeing or understanding what was going on. It really had a radical effect on my body and my mind but even my nearest and dearest don't have the slightest idea. The one person in my life who has been the most understanding is my adult child who has been living with his own life-changing chronic illness since he was a young teenager. The idea of cancer as a chronic illness seems to be beyond our healthcare system to incorporate.
This is a beautiful summation of the experience of having an "invisible" cancer. Love how you put that. We must expand the binary perception of "cancer." Thanks for being here.
Stacy-Thank you for this! I would just add that there are many survivors who do NOT realize that the "race continues" or that there are new hills to climb once treatment ends. I know plenty of survivors who don't have a clue about things like "late effects". They are often unaware that their treatments may have toxic, life-threatening, long-term consequences. They aren't told.
The chances are greater that if you are a more recent survivor you may get a bit of information about late effects, and possibly a survivorship plan, but if you have managed to live years or even decades post-treatment, it is highly unlikely that you have any idea of the risks that you face. It's also unlikely that efforts are being made to find you and make sure that you know.
We've known about late effects for years, and we are learning more every day. But the results of that research are NOT getting to those who need it the most- the survivors. Research on late effects has helped to make today's treatment less toxic, but survivors who were treated years ago will not benefit from that information unless someone tells them.
I wholeheartedly agree that we desperately need better survivorship care. We also need to make sure that survivors understand why they need it before it's too late.
Thanks for bringing this up. I have on my list for next oncologist appointment to ask about the late-term effects of treatment. What can I expect to affect me now that the cancer hasn't killed me?
Hi Susan! Late effects may be different for everyone, but there are some general risks to be aware of. Your oncologist will know which ones are most concerning for you based on the kind of treatment you got, where (ie, radiation if it applies), and how much. For example, radiation to the chest area (common in lymphoma, Hodgkin lymphoma, breast cancer, etc) may cause cardiac complications down the road. There are some chemotherapy agents (like anthracyclines) that can also affect heart function. Other late effects include subsequent cancers, pulmonary issues, radiation fibrosis, infertility, anxiety, depression, and more. Not everyone will struggle with these problems, and some will struggle more than others, but it is really important to understand your risks and be proactive about your care going forward.
Running, especially distance running, is such a good analogy for enduring and powering through life challenges and adversity. It is one of my core developmental experiences from high school. When I’ve dealt with grief, loss, failure, and defeat it was the running template in my brain that kept me going. Supreme respect for the distance runners of cancer treatment and survivorship. In the end both are individual struggles, but the more people running with us through exhaustion and pain the more endurable the journey, win or not. Great post.
Thank you, Ryan, for taking care of the survivors that land back in your office. I would be interested in your thoughts on survivorship from a primary care perspective. Maybe a future guest post?
You are absolutely on the right track from my experience. That experience is as a person with cancer and a year earlier as a person seriously injured in an accident that landed me in a trauma unit. Once the serious things were dealt with, on the 3rd or 4th day hospitalized, I unknowingly stumped doctors and nurses alike when I requested psychological services for the emotional part of the trauma (I was cycling when a car hit me). Seriously, it was like I had requested something really far fetched. They told me no one else had ever asked for help. I bet many would have gladly accepted help if offered. And I feel similarly with my cancer treatment. The “now what” not addressed in any manner. We have to do it in our own.
I am rarely shocked, but that is shocking. I guess I assume that other parts of medicine have it all figured out. I hope your request caused the care team to reexamine their services.
PTSD after cancer is real and unaddressed. I am becoming more convinced that we need a "mandatory" (that sounds stronger than I mean it to) debrief plan for patients. It's unacceptable that this happens to the majority of cancer survivors and yet you are expected to find the way out on your own.
Yes, I believe my request could have had that effect and I did see someone before being discharged to a rehab facility (interestingly enough, I made the same request there and again was told others hadn't but I was able to meet with a psychologist several times and not surprisingly it was helpful). It should be apparent to policymakers I would think that modern medicine needs a mind/body approach, but unless you go the integrative or functional medicine route you will likely not be treated that way in my experience. Shouldn't it be obvious the whole person needs attention, not just the sick or injured parts. I know I'm preaching to the choir... Thank you for writing about these topics, your writing always resonates with me.
I'm so glad to read about the topic of survivorship. I've lived with bladder cancer for 20 years with multiple progressions and remissions, surgeries, chemo, radiation, a clinical trial, immunotherapy and most recently, a metastases to my brain and spine called leptomeningeal disease. They consider it a late stage of advanced cancer with a dire prognosis. I was given 2-4 months to live. That was 24 months ago! My healthcare has been excellent and part of why I'm still here, but any discussion about survivorship has been absent. I agree with Rudy, there should be a standard-of-care that addresses the challenges of survivorship.
Thank you so much for being here, Lars. I'm so interested in how you process the uncertainty of wildly incorrect prognostication. I understand the importance but you are an example of when we get it so, so wrong. Thank you so much for sharing.
Hi Stacy, ask the caregivers the unpaid carers here in the UK, as well as the cancer sufferers themselves. 'There is no finish line' could read 'swept along onto a rollercoaster where there may be some calm plateaus but also many unpredictable free falls' - especially when co-morbidities other illnesses are involved.
I worked in pharma for 2 decades, resigned to help my mother look after my Dad (CHF with A-fib, RA, bladder cancer, then 2xTURBTs, BCG vaccine which destabilised his heart & RA meds so he had various oedema and falls) a couple of months before he passed, Mum was diagnosed with 2 separate primaries..our new norm rollercoaster continues.
I support and advocate for other caregivers via my website but also via online forums in the UK. The hidden crisis of caregiving in communities is where you'll see the full, diverse amplitude, range and impact of cancer across lives & lifetimes. Caring across generations in the US Exec Dir Ai-jen Poo, and Carers UK do their best to demonstrate how the needs of care in our communities has outpaced the changes in policies, infrastructure and funding.
Survivorship. Walking in to my oncologist’s office , receptionist behind glass , tv tuned to a cooking show . No literature about data , help for caregivers, tips, hacks for making this easier … no mention of support groups. No nutrition information . I thought a more holistic approach was definitely needed.
As a patient advocate obsessed with long term survivorship issues I really appreciate all the info in this! And yes, survivorship issues should be considered a second level of standard care once the initial critical treatment phase ends. And I think every person diagnosed should receive at least 6-10 therapy sessions. No matter how anyone acts, we are all broken in some way by cancer.
Should survivorship care be an "opt out" rather than an "opt in" part of care? I've been mulling over that model and wondering if it would help.
In general, don't we reach more people with support if it is an "opt out" model?
I am a stage 3 rectal cancer survivor and I am so happy to see you discussing this. I was a healthy, fit 42 year old mother of 3, and cancer transformed my life completely. My newsletter, New Found Life,
Is all about the period of time after cancer. The changes I had to accept and navigate after cancer, including early onset menopause, a permanent colostomy and severe anxiety/PTSD symptoms left me questioning why everyone else seemed to think I was “finished” with my cancer experience!! The aftermath is real, and survivors need so much more support than they are given in most cases.
Thanks for telling your story, it means a lot. I only recently heard of the field of "psycho-oncology," but have not been able to access any practitioners. There is talk about psychological and emotional needs during treatment, but mine hit well after tmt was over and I was able to catch my breath. (When everyone has moved on, that is!)
Thank you so much for being here, Susan. You are not alone and the burden of surviving falls particularly hard on people with lung cancer who "weren't supposed to survive." I have heard this from many groups of lung cancer survivors over the years and it is completely unfair. You don't have to justify your being alive. Let me know if you are interested in resources for small cell survivors. You are part of a growing group looking for connection.
Thank you for even giving lip service to this issue. As someone treated for small-cell lung cancer over 2 years ago (and for a single metastasis a year ago), it has been extremely perplexing psychologically to be told I was going to die (twice!) and then that I am not. I am not complaining! But it's wreaked havoc on my relationships because those around me want to get back to normal and they feel a bit foolish for having grieved me; they think I made a mountain out of a molehill, and tend not to give me credit for having survived this thing so far -- and don't seem willing to acknowledge that the cancer can come back at any time. I have never felt so alone as I do now.
Hi Susan, I totally understand how you feel. Cancer Island. It can be so very lonely. The psychological impacts are real.
I love this! I am a cancer survivor and a runner. Running, alone, feet on the pavement, is my therapy. It is the never-ending commitment!
This is so important. Thank you. I’m one year post treatment for stage three ovarian cancer. I’m thrilled that yesterday’s scans and tests show that I’m currently NED. I’m scared because my great and thoughtful oncologist also told me that there is no timeline for OC when you are safe to say there won’t be a reoccurrence…..you’re cancer free. So I came home happy and nervous. Anxiety is with me always. Sometimes quietly whispering, sometimes shouting.
"sometimes quietly whispering, sometimes shouting." Beautifully captured.
All these comments resonate with me - as does the original column. Thank you, everybody!
I'm a survivor of a rare GI cancer treatable principally by surgery - so much surgery that I spent 5 years post-diagnosis dealing with complications of all the surgeries. It's an "invisible" cancer and with no chemotherapy to deal with (because chemo doesn't work for this cancer) I felt as though I passed through the entire experience with nobody around me seeing or understanding what was going on. It really had a radical effect on my body and my mind but even my nearest and dearest don't have the slightest idea. The one person in my life who has been the most understanding is my adult child who has been living with his own life-changing chronic illness since he was a young teenager. The idea of cancer as a chronic illness seems to be beyond our healthcare system to incorporate.
This is a beautiful summation of the experience of having an "invisible" cancer. Love how you put that. We must expand the binary perception of "cancer." Thanks for being here.
Stacy-Thank you for this! I would just add that there are many survivors who do NOT realize that the "race continues" or that there are new hills to climb once treatment ends. I know plenty of survivors who don't have a clue about things like "late effects". They are often unaware that their treatments may have toxic, life-threatening, long-term consequences. They aren't told.
The chances are greater that if you are a more recent survivor you may get a bit of information about late effects, and possibly a survivorship plan, but if you have managed to live years or even decades post-treatment, it is highly unlikely that you have any idea of the risks that you face. It's also unlikely that efforts are being made to find you and make sure that you know.
We've known about late effects for years, and we are learning more every day. But the results of that research are NOT getting to those who need it the most- the survivors. Research on late effects has helped to make today's treatment less toxic, but survivors who were treated years ago will not benefit from that information unless someone tells them.
I wholeheartedly agree that we desperately need better survivorship care. We also need to make sure that survivors understand why they need it before it's too late.
Thank you for bringing awareness to this issue, Erin. You are a great resource. I can't wait to hear how your meeting in Boston went!
Thanks for bringing this up. I have on my list for next oncologist appointment to ask about the late-term effects of treatment. What can I expect to affect me now that the cancer hasn't killed me?
Hi Susan! Late effects may be different for everyone, but there are some general risks to be aware of. Your oncologist will know which ones are most concerning for you based on the kind of treatment you got, where (ie, radiation if it applies), and how much. For example, radiation to the chest area (common in lymphoma, Hodgkin lymphoma, breast cancer, etc) may cause cardiac complications down the road. There are some chemotherapy agents (like anthracyclines) that can also affect heart function. Other late effects include subsequent cancers, pulmonary issues, radiation fibrosis, infertility, anxiety, depression, and more. Not everyone will struggle with these problems, and some will struggle more than others, but it is really important to understand your risks and be proactive about your care going forward.
Running, especially distance running, is such a good analogy for enduring and powering through life challenges and adversity. It is one of my core developmental experiences from high school. When I’ve dealt with grief, loss, failure, and defeat it was the running template in my brain that kept me going. Supreme respect for the distance runners of cancer treatment and survivorship. In the end both are individual struggles, but the more people running with us through exhaustion and pain the more endurable the journey, win or not. Great post.
Thank you, Ryan, for taking care of the survivors that land back in your office. I would be interested in your thoughts on survivorship from a primary care perspective. Maybe a future guest post?
You are absolutely on the right track from my experience. That experience is as a person with cancer and a year earlier as a person seriously injured in an accident that landed me in a trauma unit. Once the serious things were dealt with, on the 3rd or 4th day hospitalized, I unknowingly stumped doctors and nurses alike when I requested psychological services for the emotional part of the trauma (I was cycling when a car hit me). Seriously, it was like I had requested something really far fetched. They told me no one else had ever asked for help. I bet many would have gladly accepted help if offered. And I feel similarly with my cancer treatment. The “now what” not addressed in any manner. We have to do it in our own.
Thank you for writing about this!
I am rarely shocked, but that is shocking. I guess I assume that other parts of medicine have it all figured out. I hope your request caused the care team to reexamine their services.
PTSD after cancer is real and unaddressed. I am becoming more convinced that we need a "mandatory" (that sounds stronger than I mean it to) debrief plan for patients. It's unacceptable that this happens to the majority of cancer survivors and yet you are expected to find the way out on your own.
Thank you so much for being here and for sharing.
Yes, I believe my request could have had that effect and I did see someone before being discharged to a rehab facility (interestingly enough, I made the same request there and again was told others hadn't but I was able to meet with a psychologist several times and not surprisingly it was helpful). It should be apparent to policymakers I would think that modern medicine needs a mind/body approach, but unless you go the integrative or functional medicine route you will likely not be treated that way in my experience. Shouldn't it be obvious the whole person needs attention, not just the sick or injured parts. I know I'm preaching to the choir... Thank you for writing about these topics, your writing always resonates with me.
I'm so glad to read about the topic of survivorship. I've lived with bladder cancer for 20 years with multiple progressions and remissions, surgeries, chemo, radiation, a clinical trial, immunotherapy and most recently, a metastases to my brain and spine called leptomeningeal disease. They consider it a late stage of advanced cancer with a dire prognosis. I was given 2-4 months to live. That was 24 months ago! My healthcare has been excellent and part of why I'm still here, but any discussion about survivorship has been absent. I agree with Rudy, there should be a standard-of-care that addresses the challenges of survivorship.
Thank you so much for being here, Lars. I'm so interested in how you process the uncertainty of wildly incorrect prognostication. I understand the importance but you are an example of when we get it so, so wrong. Thank you so much for sharing.
Hi Stacy, ask the caregivers the unpaid carers here in the UK, as well as the cancer sufferers themselves. 'There is no finish line' could read 'swept along onto a rollercoaster where there may be some calm plateaus but also many unpredictable free falls' - especially when co-morbidities other illnesses are involved.
I worked in pharma for 2 decades, resigned to help my mother look after my Dad (CHF with A-fib, RA, bladder cancer, then 2xTURBTs, BCG vaccine which destabilised his heart & RA meds so he had various oedema and falls) a couple of months before he passed, Mum was diagnosed with 2 separate primaries..our new norm rollercoaster continues.
I support and advocate for other caregivers via my website but also via online forums in the UK. The hidden crisis of caregiving in communities is where you'll see the full, diverse amplitude, range and impact of cancer across lives & lifetimes. Caring across generations in the US Exec Dir Ai-jen Poo, and Carers UK do their best to demonstrate how the needs of care in our communities has outpaced the changes in policies, infrastructure and funding.
Survivorship. Walking in to my oncologist’s office , receptionist behind glass , tv tuned to a cooking show . No literature about data , help for caregivers, tips, hacks for making this easier … no mention of support groups. No nutrition information . I thought a more holistic approach was definitely needed.
Wow, that sounds unusually BAD for a cancer center, or even oncologist practice. Do you have an alternative?