/r/YoungAdultCancer
for those of us under 40 who have been diagnosed with cancer, or love or know someone who has
Hi! Welcome to r/youngadultcancer. A few helpful links for the uninitiated:
http://stupidcancer.org/ is your source for networking and resources
http://firstdescents.org/ is your entrance into the world of cancer and the outdoors.
http://athletes4cancer.org/ is your go-to place for rediscovering life after cancer.
http://www.caringbridge.org/ is a great place to update your family and friends at once.
http://truenorthtreks.org/ is an organization all about helping young adult survivors find their new true north.
http://lacunaloft.org/ offers support and resources for young adult cancer survivors and caregivers. Young adult cancer resources, no matter where you are.
http://www.imermanangels.org/ is a community that provides one-on-one cancer support through mentor/mentee programs.
/r/YoungAdultCancer
If you're a young person, aged 16-24, who has survived their cancer, please watch this video: https://youtu.be/cV5X4NMTB8g
The video is a chat about between myself and a young person who has survived their cancer discussing this research in a bit more detail and why hopefully this research can help inform future care for young people in remission.
Once you have watched the video, simply follow this link:
https://bathpsychology.eu.qualtrics.com/jfe/form/SV_eboKGs8H2SXT7eJ
Thank you for taking the time to consider the study and for any participation. If you have any questions, please contact the main researcher (Mike) at FCRresearch@bath.ac.uk
Survivors guilt is real for survivors of cancer and it can really take a toll on our mental health.
Cancer treatments have progressed, but little is known about their long-term effects on functioning. Cancer-related cognitive impairment (CRCI) is an obstacle for many survivors as they are transitioning from life with cancer to life in remission. While the physical body has “healed”, there is little attention placed on healing the mind. This is an important topic because many people have undergone cancer treatment and have been affected by this. The purpose of this study is to examine the effects of cancer treatments on long-term psychological health and mental functioning. By gaining a better understanding of cognitive impairment following cancer treatment, doctors will be better able to treat and educate current cancer patients.
Are you eligible?
The survey takes around 30-40 minutes to complete and is available 24/7 for your convenience. Don't worry if you cannot complete the survey all at one time. You are able to pick up where you left off at any point. If you have any questions about the study, please contact the principal researcher. If you are eligible and interested in participating, please type this link into your internet browser:
https://alliant.qualtrics.com/jfe/form/SV_5haN5XGoC6sYnkx
Thank you in advance for your willingness to participate.
Alexia Davelaar
Principal Researcher
Many people who have survived cancer can experience a fear that it will return, which we call ‘fear of cancer recurrence’. Previous studies have found that in both adults and children, fear of cancer recurrence can get in the way of their general lives and is related to their mental health. However, we don’t yet know very much about fear of cancer recurrence in teenage and young adult cancer survivors.
We want to understand more about fear of cancer recurrence in young people who have survived cancer. We think that fear of cancer recurrence might be connected to illness perceptions (i.e. how we think about our illness) and to mood. To investigate this, we are asking young people, age 16-24, who have survived cancer to fill in questionnaires.
Can you help?
Are you a young person, aged 16-24 with a history of cancer diagnosis?
If you are currently in remission and have completed active treatment, the University of Bath is running a study to help inform future care.
The study is online and involves completing several questionnaires. It should take between 20-30 minutes and only needs completing once!
On completion, participants can choose to be entered into a prize draw with the chance to win 1 of 5 £20 amazon vouchers.
Please follow this link to the research:
https://bathpsychology.eu.qualtrics.com/jfe/form/SV_eboKGs8H2SXT7eJ
If you want to find out more about taking part in the research, you can contact the researcher at FCRresearch@bath.ac.uk.
Hey everyone!
I wrote a little something about some of the comments you often hear from others and how sometimes you feel like you need to live up to others expectations.
Let me know what you think!
https://www.cancertalkfoundation.org/post/living-up-to-expectations
We are a research team at Oregon State University committed to improving reproductive and sexual health for cancer survivors. We are currently recruiting for a study funded by American Cancer Society to develop a program to help young couples cope with and communicate about reproductive and sexual health after cancer. We are recruiting survivors of breast or gynecological cancer and their partners to share your opinions during an interview on how we can best develop this program. Participants receive a $20 gift card. Please see our website for more information: health.oregonstate.edu/oc
Hi there! If you’re between 15-39 years of age and are receiving cancer treatment or it has been less than a year since treatment, we at the University of North Dakota would appreciate if you took this anonymous survey! It should take about 7-15 minutes and will ask questions about your interactions with your cancer care team and some other general questions about your life. At the end there will be a personality test (separate from the research) that will tell you a little about your personality style and some coping skills that match it! We are particularly interested in the experiences and opinions of three broad groups of people. Those who identify as U.S. racial minorities (black, Hispanic, Latinx, Asian American, Native American/American Indian, biracial and multiracial), those identify within the LGBTQI community and people from rural communities. These people may have unique experiences in the health care system that are frequently missed in research and it is our hope that our research can be more representative of the many different individuals who have cancer. If you want more information before starting just follow the link
I was diagnosed at 15 with Ewing Sarcoma, and underwent treatment soon after. It was terrible and life altering and was one of the hardest things I’ve had to go through in my life. No question there. But after being in remission for about four years now, learning how to come to terms with the after effects of that treatment is what I find to be the unknown pain of a cancer survivor, especially those who fall under the pediatric and young adult category. I’m 20 years old and in college, and I’m supposed to be in my physical prime. All my friends seem to be able to run on no sleep, a terrible diet, intense pressure, while still getting good grades and party all the time. I, however, cannot do that. I have so many orthopedic complications as a result of surgeries, and I have another another one coming up on a few weeks. I get tired so easily, and my mind is constantly riddled with fear and anxiety. I just don’t have that invisibility complex that people my age seem to thrive on, and I cannot help but feel cheated and left behind. I know that I am so lucky in many ways to have made it through as well as I did, trust me, the survivor guilt is there. I just don’t like the fact that as a cancer survivor, I am supposed to compare everything in my life to almost dying. I have chronic pain, but at least i don’t have cancer. I have flashbacks that make me dissociate for hours on end, but at least I don’t have cancer. I may never be able to have children because of treatment, but at least I don’t have cancer. I feel like a burden to the people around me as the result of the long term effects of my disease but at least I don’t have cancer. I feel so lonely and lost sometimes and have no idea what to do with the future that I didn’t even think I would be allowed to have. But at least I don’t have cancer. Yes having cancer has given me a profound appreciation for how precious and ephemeral life is. But it has also shown me the ranges and depth of pain my body can feel, how weak and frail is is at the end of the day, and how at any moment, it can malfunction in the most fundamental of ways. I suppose what I want is to be able to say yes, I am grateful to have survived but that doesn’t mean that it isn’t still hard and that life after cancer presents it’s own challenges that I don’t think I was ever adequately warned or prepared for. Does anyone else relate to these feelings?
I'm a graduate student working with my advisor to adapt a mindfulness program to improve sexual health, body image, and well-being after breast/gynecological cancer. One way we're hoping to adapt the program is by adding tips from real women who have experienced cancer. These tips can be related to intimacy/sex, body image, communicating about these issues, or any other topics that are related. Does anyone have any tips they would like to share? Feel free to message me directly if you'd like to share but don't feel comfortable doing so publicly!
Here is the link to our study if you're interested in learning more about it: health.oregonstate.edu/mindful
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Hi! I work on a team that is currently recruiting for a research opportunity to support adolescent and young adult cancer survivors who were diagnosed between the ages of 15-27 and have completed treatment for cancer (any type) in the past 5 years. The program will be held for virtually (over videoconferencing) for 8 weeks and participants will be compensated up to $90 for their time. Please don’t hesitate to reach out if you are interested in learning more or have any questions. Thank you! @MGHBounceBack
Hi! I work on a team that is currently recruiting for a research opportunity to support adolescent and young adult cancer survivors who were diagnosed between the ages of 15-27 and have completed treatment for cancer (any type) in the past 5 years. The program will be held for virtually (over videoconferencing) for 8 weeks and participants will be compensated up to $90 for their time. Please don’t hesitate to reach out if you are interested in learning more or have any questions. Thank you! @MGHBounceBack
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Hello,
We are currently looking for people to take part in our research study at the University of Chester, UK, on daily functioning and psychological wellbeing in cancer patients
Receiving a cancer diagnosis and all that comes after this can often be a distressing, worrying and confusing time. Our aim is to investigate how cancer has affected your daily functioning and emotional wellbeing. We are particularly interested in how this then affects decisions you make about your treatment. Our goal is to help others that might find themselves in your position in the future. To do this, we need your help.
Anyone who is over 16 years of age and been diagnosed with any type of cancer can take part. If you decide to take part, you will be asked to complete an online questionnaire that will take around 30 minutes to complete. You will be also asked whether you would like to participate in a phone or Skype interview at a later date, but you don’t have to agree to this to take part in the questionnaire study. While we hope that taking part will be a positive experience for you, we also understand that answering questions about your illness may be upsetting. You can always stop the questionnaire at any time. All your answers and data will be anonymous.
If you would like to take part, please click the following link. This will take you to the survey and study information sheet.
Link: https://chester.onlinesurveys.ac.uk/reddit
Thank you,
David Budzynski, BSc (Hons)
MRes student conducting the research
8 days ago I was diagnosed with stage IV rectal cancer, which metastasized in liver. The oncologist has recommended FOLFOX. I am 32 years old, just recently married. Been a vegetarian for 7 years now, exercise regularly... And then this? I don't know how to even feel about it. Any clues?
Where’s all the activity around here?? Newly diagnosed looking for some fun connections...
A very interesting look into an overlooked and underserved population in the medical world of Teens and Young Adults with Cancer. Trailer
I just had my 3rd surgery in a year. The last being a parotidectomy and removal of all lymph nodes in the region and tumor. Pathology report came back negative for lymph nodes but found melanoma in the tumor and the parotid gland. There was evidence that cancer cells were present in the scar tissue but negative. Great news. But... my Oncologist just put me back on Tafinlar and Mekinest for 3 months. I know it is for the best but I just was starting to enjoy being off of chemotherapy. I should be thankful for the fight, but bummed.
Hello! This subreddit is for you...the young adult cancer fighter/survivor. Definitely don't hesitate to shout out about anything you want from your frustrations, celebrations, fears, doubts, smiles, etc!