Whitepaper

A lack of an adequate nation-wide support system is an issue many cancer patients/survivors face.

Read more about this problem and how CanSER is the solution!

The Problem

In the last 5 years (as of 1/1/2020), 5,718,924 people were diagnosed with cancer. Zooming out to a 19-year span (between 2001-19), an alarming 12,951,044 were diagnosed with cancer. The scale of these numbers is nothing short of drastic, underscoring the profound impact of cancer on society. My mom was one of these statistics when she was diagnosed with Breast Cancer in 2019. 

Treatment (TL) and Post-Treatment Life (PTL)

If you think the high number of cases is bad, brace yourself for the harrowing journey survivors face during their treatment (we call Treatment Life (TL)) and during post-treatment (we call Post-Treatment Life (PTL)). Beating cancer isn’t a straightforward victory; it’s an ever-evolving process with the looming threat of a comeback. TL can span from months to years, and PTL easily extends to at least 2/3 years. The toll, both physical and emotional, is immense and doesn’t fade away post-treatment; it lingers on in the emotional landscape of survivors.

The physical toll on patients during TL is tremendous, and can even lead to lasting side effects and conditions. Chemotherapy and radiation treatments damage cells lining the throat, stomach, and bowels. This damage results in side effects, like nausea, vomiting, diarrhea, or constipation. Hair follicles damaged by cancer treatment may result in baldness. Cancer treatment can also lead to anemia, being easily bruised, and easily catching infections. 

These physical side effects of treatment can also lead to serious emotional/mental effects during TL. Each person’s experience is as unique as a fingerprint. It’s normal to be engulfed by emotions like anger, tension, sadness, or even loneliness—feeling isolated from those who might not comprehend the depth of your struggle. Another common mental effect is known as “chemo brain”, which describes the thinking and memory problems that can occur during and after cancer treatment. 

Similarly, the PTL stage of a cancer survivor’s journey encompasses many physical challenges. Besides being on the look-out for the signs of recurrence, you may be living through lingering side effects from your original treatments. For example, a lack of energy, weight issues or numbness. Survivors may also have to learn to live with permanent changes in the look/function of their bodies, like scars, radiation tattoos, the loss of a breast or limb, or a change in body function. 

Emotional Toll

Furthermore, being a cancer survivor entails a great emotional impact. During PTL, there is an intermediate or transitional time called ‘remission’, when survivors may not feel quite like a “patient” anymore because they are no longer being treated for cancer. But, you may not feel confident enough that you are cured. Some survivors who have a high risk for disease recurrence may continue to take some form of treatment, called maintenance therapy, during remission. Many survivors have a variety of feelings during remission, such as: feeling untethered, being in limbo, living in a constant state of “watchful waiting”, or feeling anxious and fearful about recurrence. 

There may be times when the joy you feel about survival far outweighs any anxieties you may have. Then, there will be times when your fears and uncertainties seem to take over your life, and you wonder if you will ever feel normal again. Given this, it is not very hard to imagine how this affects one’s job/career, relationships, finances, and in turn, mental health… a vicious loop! Survivors need a lot of help with emotional support, including anxiety, depression, grief, and distress to adapt to life after cancer. 

Evidently, being diagnosed with cancer is one of the most unimaginable challenges you and your family must overcome. Based on our personal experience and speaking with other survivors, we found that one-on-one emotional support is the best solution to overcome this emotional toll!

The problem is, this type of help is very hard to get!

Many families are able to build their own support systems. However, unfortunately, many also go through this journey by themselves as they cannot afford to build a support system themselves or don’t know what kind of support is available. 

Mental Health Effects of Cancer Treatment

I have been researching to quantify the impact this cancer related emotional toll has on people/communities and our country as a whole. Given the stigma associated with mental health, the quantification studies are hard to come by. But, I would like to try to make an attempt to do that by sharing a few numbers to really give you a sense of the enormity of the scope of this impact. Although there are no studies directly highlighting the connection between cancer patients and economic impact, we can infer this connection based on readily available statistics (2,5,6). 

  • Rates of major depressive disorder within cancer patients are thought to be up to three times higher than in the general population.
  • It is estimated that up to one-third of cancer survivors have a common mental health condition. Therefore, roughly in the last 5 years, 1.7 million cancer survivors suffered from a mental health condition. 
  • In the US, serious mental illness causes $193.2 billion/year, in lost earnings alone! Remember this doesn’t count all the direct and indirect health/productivity/quality-of-life costs

You can start to see the huge impact the emotional toll of cancer survivors can play a role on our national economy! This is why it is important to provide accessible and trustworthy emotional support to cancer patients, as it will directly address these staggering effects. 

My Personal Experience

As an example, I would like to share and briefly explain my mom’s cancer journey, to show how we dealt with TL/PTL by ourselves. Hearing about the diagnosis was incredibly daunting and we felt entirely alone. We realized that the strength of a supportive community is vital to making it through this journey. Our oncologist recommended checking out Imerman Angels as they offer one-on-one personal/emotional support to survivors. Although we did look at what they have to offer, we had never heard of them until that moment and didn’t quite feel we can trust them! My mom was also a little uncomfortable simply meeting/speaking with a stranger (on the phone) about something so personal such as cancer.  

As my mom told more people about her diagnosis, she was introduced to local survivors who she built a relationship with. They provided helpful tips and tricks; but most importantly, they could each be a friend who understood what she was going through. The coolest part about these friends was that they formed organically, and started to build a meaningful relationship outside of talking about cancer! It is almost impossible to describe in words the emotional support my mom received from these survivors and how it helped her overall wellbeing! After her treatment was over, she soon started to receive calls through word of mouth from newly diagnosed patients looking for the same /support she once got. She took the opportunity gladly to give back. 

As my mom finished her treatment and entered remission during PTL, I started to wonder if there is a local organization (where we live) that provides more personal one-on-one emotional support. As I researched I couldn’t find a local one (for us) but did find a few different small-scale organizations serving different metro areas. So you must be wondering, personal emotional support is an existing idea and there seem to be several orgs providing it, problem solved? NOT QUITE! 

Let us dig deeper to get a good sense of why so? And what is the current state of all these orgs, services and other associated challenges!? 

Current Solutions

Existing Solutions

Many cancer organizations like ACS, Cancer Hope Network, Imerman’s Angels are dedicated to providing personalized emotional support. Despite their committed efforts, the statistics paint a disappointing picture (based on publicly available information) –  

  1. ACS’s Reach To Recovery program, aiding breast cancer patients has had less than 2000 downloads for its mobile app, although the program has been running for over 50 years. 
  2. In 17 years, Imerman’s Angels, a wonderful organization matching patients with survivors, has made just over 36,000 matches—a fraction of the potential impact.
  3. The Cancer Hope Network, for more than 40 years, provided connections and resources to only 50,000 or so individuals facing cancer.
  4. Many other orgs catering to different cancers also show similar lower numbers of patients served. For example, in 2023 alone there were 288,000 cases of prostate cancer and Prostate Cancer Foundation’s facebook support group has just above 3000 members!

Main Fallbacks of Existing Support Systems

While these organizations are making good efforts in providing personalized emotional support, compared to the estimated 1.9 million new cancer patients diagnosed in 2023 alone, their low-patient engagement demands a significant shift in the approach. I believe that the reason why these organizations haven’t met the demands of patients fall into two main factors – 1) they are reinventing the wheel (and suffer from the inefficiencies that come with it) and 2) they lack familiarity & trust. 

As you would imagine, any organization serving emotional support, needs to build up team(s) to do: 

  • Procedures, practices and processes to recruit and train volunteer cancer survivors
  • Customer care and support needed for all the volunteers and patients 
  • Develop and keep updated all the tech infrastructure like website and mobile apps
  • Raising funding and development of the organization 
  • A strong marketing effort to reach the patients and survivors and instill trust in their services 
  • Must remain abreast of the latest research and breakthroughs in emotional support to incorporate new ideas/innovations into their services and consistently offer the best

These organizations work separately on addressing the same problem, reinventing the wheel and delivering inadequate results. Achieving seamless functionality is important  to provide the best quality support for patients (who already have a lot on their mind). Quality emotional support mandates a commitment to safety, efficacy, timeliness, and a very human-centered approach. It becomes evident that the prevailing method (how various organizations mushroom to cater different geographies/demographics) leads to  reinventing the wheel within each organization, further hindering collaborative progress and leading to inefficiencies. This must be changed! 

Establishing trust and confidence in the brand is crucial in the success of a program/initiative. It requires widespread recognition to effectively connect with communities and cater to the distinct emotional needs of individuals. Without this, patients will simply avoid seeking help from organizations entirely, as was in my Mom’s case. Familiarity & trust not only affects patient participation, but also recruitment & retaining of volunteers.  

Now, if you put together both the above factors you will start to see that despite the good intended efforts, the effort is divided which is resulting in the disappointing result of a lower percentage of patients being served!

We need to build a national front that has a reach to all the regions and demographics of survivors across our country! I will explain next how to go about doing that!

My Proposal

As I found in my research, some local orgs are able to establish trust/comfort but only serve a small population. Some national orgs have a larger reach, but have not been able to establish the trust needed to scale! 

Our proposal enables us to achieve greater scale, efficiency, innovation, along with developing familiarity & trust, ultimately enhancing our capacity to provide meaningful and impactful emotional support to every patient and survivor navigating the challenges of cancer. Remember, no one should go through it alone given the impact they have on our country we cannot afford to leave them behind! 

A national presence plays a pivotal role in cultivating trust and familiarity with the organization. This widespread recognition fosters a sense of confidence in the mission among people throughout the country. By streamlining processes and resources, we ensure that the emotional support services delivered maintain a consistently high standard. The centralized structure and tech infrastructure facilitates the swift integration of best practices and the latest research in emotional support, ensuring that our services continually lead in innovation.

In summary, the establishment of a national cancer organization for emotional support is not merely a strategic move but a necessary one. Now, the next question is, how do I, a junior in highschool plan to achieve this insurmountable goal!? 

Although this is a huge goal & mission, I believe I am up to the task. I have named this national org  CanSER (https://can-ser.org), where SER stands for Support, Education and Research!

I plan to relentlessly pursue these leads to make my case and win them over! I also plan to appeal to President Biden and his Cancer Moonshot initiative! Building up CanSER, a national org, will fall very much into his vision of Moonshot. This gets me very excited and I am working hard to reach his team and him. 

I am very confident, all of these steps will get the ball rolling on the movement and securing the initial funding needed. I also look forward to publishing additional detailed POSTS on these two major action items. Check back a year from now to see where I am at, meanwhile, join me and support my mission to build this org and spread the word!!!

I want CanSER familiar and trustable, similar to 911 in that whenever someone experiences a crisis, they call 911. Similarly, I hope that when someone is diagnosed with cancer, they immediately think to look to CanSER for the best trustworthy and personalized emotional support. 

No one should go through the cancer journey alone and this is a national problem that requires a national scale solution! It is time, let’s go build it!!! 

References

References

  1. “About.” Cancer Hope Network, cancerhopenetwork.org/about/.
  2. “Cancer and Mental Health.” Mental Health America, www.mhanational.org/cancer-and-mental-health. Accessed 9 Jan. 2024.
  3. “Cancer Statistics Center.” American Cancer Society, 2023, cancerstatisticscenter.cancer.org/. Accessed 9 Jan. 2024.
  4. “How does the Reach To Recovery® program support people facing breast cancer?” American Cancer Society, www.cancer.org/support-programs-and-services/reach-to-recovery.html. Accessed 9 Jan. 2024.
  5. The Lancet Global Health. “Mental Health Matters.” The Lancet Global Health, vol. 8, no. 11, Nov. 2020, p. e1352, https://doi.org/10.1016/s2214-109x(20)30432-0.
  6. “Mental Health By the Numbers.” National Alliance on Mental Health, Apr. 2023, www.nami.org/mhstats. Accessed 9 Jan. 2024.
  7. “Our Story.” Imerman Angels, imermanangels.org/our-story/.
  8. “USCS Data Visualizations – CDC.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 2020, gis.cdc.gov/Cancer/USCS/#/AtAGlance/.
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