Another day, another study confirms that the story isn’t over when cancer treatment ends
Researchers in the University of Missouri School of Health Professions have studied the lives of breast cancer patients following chemotherapy and found that their environments and available support systems help determine the quality of their lives.
“A lot of times people get mentally and emotionally ready to deal with chemotherapy and they receive a lot of support during that time,” said Stephanie Reid-Arndt, an assistant professor of health psychology in the School of Health Professions. “Then they go home and everyone feels like it’s over, but the patients still have worries and fears about the changes they’ve been through and what it means for the future.”
The study found that people reluctant to seek out social support, including therapy and informal support networks, following chemotherapy reported a lower quality of life and higher incidences of depression. A lot of people have trouble reaching out to a support network, don’t know how, don’t want to bother people or simply don’t want to share their problems, Reid-Arndt said.
The patients’ homes also were found to be a factor as the study reported a lower quality of life and functional well-being for women returning to rural areas after chemotherapy. Women in rural areas also reported increased breast cancer related symptoms such as body-image issues and fatigue.
It isn’t all bad news for patients from rural communities though. People in rural communities value close relationships with family, the community and religious organizations and find solace in these support systems after chemotherapy, according to research on this topic.
“There tends to be strong community support for patients in rural areas that will accommodate varying levels of function,” Reid-Arndt said. “Unfortunately, while this informal support system provides great comfort to patients, it lacks formal mental health and health issues knowledge available from health care professionals.”
Reid-Arndt hypothesizes that due to proximity to more mental health services, those returning home to urban areas after breast cancer treatment may suffer less symptoms of depression and a higher quality of life, provided they seek professional support.
None of this research comes as any surprise. Again, confirmation that once treatment ends, the patient can feel cut adrift, existing in a limbo like state. Don’t you agree that we need more formal recognition of this post-treatment phase and a firm plan in place to help the patient when treatment finishes? I am interested in what the study reveals about the difference between urban and rural environments for patients. I would love to hear your views on this.
Source: University of Missouri-Columbia
My view is “Right on girl friend!”
Lately, whenever I come across anyone who has journeyed through cancer, the posttreatment conversation comes up. There is a great need for increasing survivorship awareness and education. After hearing Lance Armstrong speak this past Friday evening, it is on my heart to explore the opportunities and possibilites of an organization that can support and encourage cancer patients through the journey and beyond…
As always, thanks for bringing awareness!
Thanks so much for your comment Kim..I am excited to hear of what you might be planning…keep us posted!
I totally agree there needs to be more follow up when treatment ends because the cancer journey is not ever really over. As one just finishing up chemo, I feel as if I will need a support group now more than I did during treatment. I plan to try to find one. JBBC is a good resource for the post treatment phase of the journey!
Well Nancy – we are all here for you when you need us. This is precisely why I started this blog as I was taken by surprise at the conflicting emotions I felt when I finished treatment and I wasn’t expecting to feel the way I did. I want to help others navigate their way through this phase and not flounder in the dark as I had to do.
Marie–you do a great job helping all of us to not flounder in the dark–thanks!!
Thank you Kim and I can say the same right back to you x
Marie, You know I completely agree with the need for post-treatment plans and information for cancer survivors. I have sort of found my way through the help of people like you and Jody and a few others out there. I have great doctors but it has really been on me to ask for what I need. And at times we don’t know what we need. Some information on the possible situations that might arise post-treatment and ideas for dealing with them would be a great start.
Thanks Debbie. I think you have brought up a really great point when you say:” it has really been on me to ask for what I need. And at times we don’t know what we need.” This is so true!
My view precisely! I have been exploring the possibilities of a “community” for cancer survivors here in my town. There’s too much of a “limbo” feel (as described) once a survivor. I’m currently working along with my physical/lymphedema therapist, and a personal trainer-(who also is a physical therapist and directly involved with a regional cancer center) on establishing a group locally to help with the transition-from cancer patient to thriving on to surviving~
This sounds wonderful Suzzann – do keep us informed of how this goes.
Small rural town – small rural state. I am acutely aware from my pre-retirement work life for a national organization of the unending discrepancies in small rural areas. We often lack resources larger areas take for granted AND lack the resources to compete for more. Fewer resources also often means travel and transportation issues are huge. My current work as a LiveStrong Leader in many ways mirrors this struggle. One lovely positive is that folks in rural areas are very grateful for whatever comes their way.
Thank you so much Marcia for the comment and I commend you on all the terrific work you are doing with LiveSTRONG!
Interesting contrasts between rural and urban. I wonder where that has those of us in the suburbs? Our town is a rural town even though the population is well over 80,000. I also feel further away from services, because of my health plan most services are over an hour away. Yet I do have strong community support, and my husband has been fantastic.
I totally agree that there needs to be more support following treatment. It has been almost two years for me and I struggle every day. I have severe residual pain, PTSD, scars, and numerous other issues. Yes, they saved my life, but what I have now is not really life. It’s just living with pain in many forms.
What we really need now it to find an effective way for us to deal with what’s left of our lives. I’ll keep looking.
Thanks for your blog, it has really been helpful.
Dianne, I so appreciate your comment and I agree very much with what you have said. Hope to see you again here on the JBBC blog. Blessings, Marie x
Marie right on! In fact I think that post treatment is more important than pre because there is so much information about before and during chemo and radiation. I share your same feeling of surprise when things do not come together as I anticipated they would. I also agree that you have been very transparent in your journey which has made mine much easier! Thank you sister!
And thank you – I have learned a lot from you too and gained so much from your support – the journey goes on..perhaps for a lifetime x
Marie, great post. This exact thing has been on my mind a lot lately. Who can you talk to? I just wrote something similar on my blog, but what I want you and your readers to know is there is a fantastic organization based out of Yorktown Heights, in New York whose sole mission is helping the person with cancer. Whether it’s on day of diagnosis, nearing surgery, going through treatment, whatever. If you have questions or just need an ear to unload on, these women are there for you or your caregiver. The organization is completely staffed by breast cancer survivors, so they totally relate. They are non-profit and their services are totally free.
It always annoys me that pink October funds so many research and awareness programs, yet so little find its way to supporting women dealing with cancer every day. Even after treatment ends. Support Connection does that. Here’s their website.
They also have a toll-free number, at least for use in the states. I hope you don’t mind. I’m not affiliated with them in any way, though I partake in their services and can often be found in one the support groups. They have been invaluable.
Thank you so much for letting us know about this organization. I really appreciate you helping out others in this way. This is what it’s all about! Blessings, Marie x
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