Mental Health for Cancer Patients, specifically patients of Mayo

Posted by cohm02 @cohm02, Aug 15 9:14pm

My sister was an oncology patient at Mayo for the last four years until last Saturday, Aug 6th, when she took her own life at the age of 49. While her cancer was incurable, it was “manageable” according to her surgeon and oncologist at Mayo.

My sister never talked about any offer of mental health services provided as part of her comprehensive care until about a month ago, when she reported having been given the suggestion only to find out that she couldn’t been seen by the recommended provider until several months from now.

Im hoping to understand the resources provided, referred and recommended to a patient in her position, specifically by the Mayo Clinic. My quest for better understanding comes from a desire to either drive more awareness for the mental health support of cancer patients or raise funds for future resources to be provided, should I find the current resources to be lacking.

I’m not sure if the resources are already available and maybe my sister just opted out of the support. I would really appreciate any support from the Mayo facilitator. Perhaps someone could help me identify the resources or direct me to someone who can help.

Thanks in advance and be sure to tell your loved ones how much you love them, no matter what!

Interested in more discussions like this? Go to the Thyroid Cancer group.

I am sorry and sad about your sister’s experience. Also for your tragic loss. My 45 year old only daughter has anaplastic cancer and has been working with Mayo. Was she ever offered palliative care? We have found that to be extremely helpful. Again my heartfelt sympathy.

REPLY

@cohm02, I believe the Office of Patient Experience can help you in your quest to find answers and better understand the services offered to your sister specifically. I recommend you start there:

Mayo Clinic Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

Thank you for turning this tragedy into action in the pursuit of improving mental health support for cancer patients. Speaking generally, there are a wide range of services available to cancer patients that deal with emotional, spiritual and mental impact of cancer.

I will list a few here and also ask my colleague @muradangie Angie to add or provide further clarification. You can also contact Angie or her team members at the Cancer Education Center (https://connect.mayoclinic.org/blog/cancer-education-center/tab/resource-5277/) who routinely help connect patients and family members with resources and services.

I'm confident that other Mayo cancer patients will also chime in with their experiences like @swenson did with her suggestion of palliative care services.

*****
Mental Health Support for Cancer Patients at Mayo Clinic

– Patient portal questionnaire
Cancer patients often receive a questionnaire via the patient portal asking about the side effects they are experiencing including mental side effects like depression and anxiety. Patients requiring medical attention are referred to a symptom management nurse who coordinates mental health care. Patients with mild or moderate symptoms are informed about a range of services like support groups, classes, e-courses, and more.

– Classes, webinars, e-courses and one-on-one information consults
The Cancer Education department offers personalized support for individuals or in group settings or self-learning. See more about their webinars and classes here: https://connect.mayoclinic.org/blog/cancer-education-center/tab/newsfeed/#ch-tab-navigation

– Oncology Social Work
Oncology social workers play a key role in helping patients get services and referrals. Read more here:
* How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

– Nurse Navigators
Nurse navigators do so much to support patients. Read more here:
* Patient Navigators: Meeting the Needs of Patients Along the Cancer Journey https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/patient-navigators-meeting-the-needs-of-patients-along-the-cancer-journey/

– Palliative Care
See more here:
* The Role of Palliative Care for Patients with Cancer: Supportive Oncology https://connect.mayoclinic.org/event/supportive-oncology-the-role-of-palliative-care-for-patients-with-cancer/

– Department of Psychiatry and Psychology
The department of Psychiatry and Psychology make up part of the inter-disciplinary team at the Mayo Cancer Center

– Facilitated Support Groups
See the listing of in person and online monthly support groups for cancer patients and caregivers here: https://connect.mayoclinic.org/events/

– Mayo Clinic Connect
And finally, I'd like to suggest that the community here helps support cancer patients and caregivers, including talking about mental health and the tough stuff that comes with serious illness.

*****

Cohm, it is really hard to lose a loved one by suicide. I want you to know that there are services available for you too. I'll list some of those in a separate post, but want to leave you with this related discussion in the Loss & Grief support group:
– Suicide: Finding it hard to lose someone by suicide https://connect.mayoclinic.org/discussion/suicide-1/

REPLY
@swenson

I am sorry and sad about your sister’s experience. Also for your tragic loss. My 45 year old only daughter has anaplastic cancer and has been working with Mayo. Was she ever offered palliative care? We have found that to be extremely helpful. Again my heartfelt sympathy.

Jump to this post

Thanks for your comments and concern. She was physically pretty healthy, albeit some side effects from having thyroid removed. I believe it was the incurable nature of her cancer that caused her to start having depression symptoms right away. I’m trying to learn more about how much attention is paid to a cancer patient’s state of mind. Appreciate any reference you can provide.

REPLY
@cohm02

Thanks for your comments and concern. She was physically pretty healthy, albeit some side effects from having thyroid removed. I believe it was the incurable nature of her cancer that caused her to start having depression symptoms right away. I’m trying to learn more about how much attention is paid to a cancer patient’s state of mind. Appreciate any reference you can provide.

Jump to this post

And prayers for you and your daughter!

REPLY
@colleenyoung

@cohm02, I believe the Office of Patient Experience can help you in your quest to find answers and better understand the services offered to your sister specifically. I recommend you start there:

Mayo Clinic Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

Thank you for turning this tragedy into action in the pursuit of improving mental health support for cancer patients. Speaking generally, there are a wide range of services available to cancer patients that deal with emotional, spiritual and mental impact of cancer.

I will list a few here and also ask my colleague @muradangie Angie to add or provide further clarification. You can also contact Angie or her team members at the Cancer Education Center (https://connect.mayoclinic.org/blog/cancer-education-center/tab/resource-5277/) who routinely help connect patients and family members with resources and services.

I'm confident that other Mayo cancer patients will also chime in with their experiences like @swenson did with her suggestion of palliative care services.

*****
Mental Health Support for Cancer Patients at Mayo Clinic

– Patient portal questionnaire
Cancer patients often receive a questionnaire via the patient portal asking about the side effects they are experiencing including mental side effects like depression and anxiety. Patients requiring medical attention are referred to a symptom management nurse who coordinates mental health care. Patients with mild or moderate symptoms are informed about a range of services like support groups, classes, e-courses, and more.

– Classes, webinars, e-courses and one-on-one information consults
The Cancer Education department offers personalized support for individuals or in group settings or self-learning. See more about their webinars and classes here: https://connect.mayoclinic.org/blog/cancer-education-center/tab/newsfeed/#ch-tab-navigation

– Oncology Social Work
Oncology social workers play a key role in helping patients get services and referrals. Read more here:
* How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

– Nurse Navigators
Nurse navigators do so much to support patients. Read more here:
* Patient Navigators: Meeting the Needs of Patients Along the Cancer Journey https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/patient-navigators-meeting-the-needs-of-patients-along-the-cancer-journey/

– Palliative Care
See more here:
* The Role of Palliative Care for Patients with Cancer: Supportive Oncology https://connect.mayoclinic.org/event/supportive-oncology-the-role-of-palliative-care-for-patients-with-cancer/

– Department of Psychiatry and Psychology
The department of Psychiatry and Psychology make up part of the inter-disciplinary team at the Mayo Cancer Center

– Facilitated Support Groups
See the listing of in person and online monthly support groups for cancer patients and caregivers here: https://connect.mayoclinic.org/events/

– Mayo Clinic Connect
And finally, I'd like to suggest that the community here helps support cancer patients and caregivers, including talking about mental health and the tough stuff that comes with serious illness.

*****

Cohm, it is really hard to lose a loved one by suicide. I want you to know that there are services available for you too. I'll list some of those in a separate post, but want to leave you with this related discussion in the Loss & Grief support group:
– Suicide: Finding it hard to lose someone by suicide https://connect.mayoclinic.org/discussion/suicide-1/

Jump to this post

Thank you so much. This gives me a lot to work with and I really appreciate the support for grief. It’s a struggle for sure.

REPLY
@colleenyoung

@cohm02, I believe the Office of Patient Experience can help you in your quest to find answers and better understand the services offered to your sister specifically. I recommend you start there:

Mayo Clinic Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

Thank you for turning this tragedy into action in the pursuit of improving mental health support for cancer patients. Speaking generally, there are a wide range of services available to cancer patients that deal with emotional, spiritual and mental impact of cancer.

I will list a few here and also ask my colleague @muradangie Angie to add or provide further clarification. You can also contact Angie or her team members at the Cancer Education Center (https://connect.mayoclinic.org/blog/cancer-education-center/tab/resource-5277/) who routinely help connect patients and family members with resources and services.

I'm confident that other Mayo cancer patients will also chime in with their experiences like @swenson did with her suggestion of palliative care services.

*****
Mental Health Support for Cancer Patients at Mayo Clinic

– Patient portal questionnaire
Cancer patients often receive a questionnaire via the patient portal asking about the side effects they are experiencing including mental side effects like depression and anxiety. Patients requiring medical attention are referred to a symptom management nurse who coordinates mental health care. Patients with mild or moderate symptoms are informed about a range of services like support groups, classes, e-courses, and more.

– Classes, webinars, e-courses and one-on-one information consults
The Cancer Education department offers personalized support for individuals or in group settings or self-learning. See more about their webinars and classes here: https://connect.mayoclinic.org/blog/cancer-education-center/tab/newsfeed/#ch-tab-navigation

– Oncology Social Work
Oncology social workers play a key role in helping patients get services and referrals. Read more here:
* How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

– Nurse Navigators
Nurse navigators do so much to support patients. Read more here:
* Patient Navigators: Meeting the Needs of Patients Along the Cancer Journey https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/patient-navigators-meeting-the-needs-of-patients-along-the-cancer-journey/

– Palliative Care
See more here:
* The Role of Palliative Care for Patients with Cancer: Supportive Oncology https://connect.mayoclinic.org/event/supportive-oncology-the-role-of-palliative-care-for-patients-with-cancer/

– Department of Psychiatry and Psychology
The department of Psychiatry and Psychology make up part of the inter-disciplinary team at the Mayo Cancer Center

– Facilitated Support Groups
See the listing of in person and online monthly support groups for cancer patients and caregivers here: https://connect.mayoclinic.org/events/

– Mayo Clinic Connect
And finally, I'd like to suggest that the community here helps support cancer patients and caregivers, including talking about mental health and the tough stuff that comes with serious illness.

*****

Cohm, it is really hard to lose a loved one by suicide. I want you to know that there are services available for you too. I'll list some of those in a separate post, but want to leave you with this related discussion in the Loss & Grief support group:
– Suicide: Finding it hard to lose someone by suicide https://connect.mayoclinic.org/discussion/suicide-1/

Jump to this post

Thank you for including me Colleen into this conversation.
@cohm02, First of all I would like to start by saying I am so sorry for your loss.

I would agree with @colleenyoung that the Office of Patient Experience would be the first place to begin to find answers and better understand the services offered specifically to your sister.

REPLY
@cohm02

Thanks for your comments and concern. She was physically pretty healthy, albeit some side effects from having thyroid removed. I believe it was the incurable nature of her cancer that caused her to start having depression symptoms right away. I’m trying to learn more about how much attention is paid to a cancer patient’s state of mind. Appreciate any reference you can provide.

Jump to this post

Cohm02, I also promised to followup with some resources specific for caregivers and for you.

– Online support
Here on Mayo Clinic Connect caregivers are always welcome to take part in any group to learn more from people living with cancer. There are also specific caregiver groups, a loss group and mental health groups:
Caregivers (including cancer) https://connect.mayoclinic.org/group/caregivers/
Caregivers: Dementia https://connect.mayoclinic.org/group/caregivers-dementia/
Loss & Grief https://connect.mayoclinic.org/group/loss-grief/
Depression & Anxiety https://connect.mayoclinic.org/group/depression-anxiety/
Mental Health https://connect.mayoclinic.org/group/mental-health/

– Facilitated online Zoom meetings
We also have weekly and monthly Zoom support groups run by Mayo Clinic social workers and webinars specifically for caregivers https://connect.mayoclinic.org/events/

– Hospice bereavement support
Hospice services include bereavement support even if your loved one was not in hospice. This is a little known fact. Hospices provide a lot of family specific resources and support.

REPLY

I am so sorry about the loss of your sister and her inability to get the help she needed.

During one of my oncology appointments, I could not stop crying. The provider referred me to Mayo's Mood clinic at Rochester. The Mood Clinic is run my Mayo's psychiatry / physiology dept. I was in right place at right time and when called to schedule, someone had just cancelled so was seen same day.

In addition, I attended a Mayo facilitated cancer support group that emphasized Quality of Life / anxiety / stress during cancer. This was also from the psychiatry / physiology dept. It was an in-person group. Attendees were patients with variety of cancer and at different stages. I attended in 2018 or 2019, so pre-COVID, so not sure if Mayo still doing something similar.

There is large gap in mental help services available. Often there is nothing between waiting to long for an appointment vs someone in crisis needing to call 911 or visit ER. Most people's situation will get worse while waiting for appointments.

I hope your reach out for help dealing with your grief.

Laurie

REPLY
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