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How the shame of cancer corrodes your soul - (1/1/2021)

By Dr. Ron Gasbarro

You have cancer and you feel bad. For whatever reason: Like, you smoked three packs a day for 30 years. You wasted all that money that could have gone for a better house for your family, or for a better school for your kid. You should have eaten less red meat and more salads. Your uncle died of the same thing; earlier testing may have helped. The shame and guilt are not going to make the tumor evaporate. Indeed, even the latest treatment may be unable to crack its hungry crust. But it is just not the disease itself. Research has recently uncovered that the more you beat yourself up over having cancer, the more your body makes sure that cancer wins. 

Is inflammation your friend or enemy? 
You have heard of inflammation. Well, inflammation may not appear to be your friend. You would think it would be because it is part of the body’s defense mechanism and spearheads the healing process. So, you stub your toe on your kid’s toy fire engine. Now your toe hurts, swells, turns crimson, and is a bugger to walk on. Why is all this a good thing? 

When the brain registers damage to a part of the body, the immune system triggers several vital reactions within milliseconds [Lentsch, Ward; 2000]:
The capillaries in the affected area enlarge to prepare for the onslaught of healing factors.  
Then, plasma protein fluid rushes to the injured tissues, resulting in swelling.
Next, neutrophils, a type of white blood cell (leukocyte), take wing in the direction of the affected area. These white blood cells contain molecules that can help fight pathogens if the area is infected.
In a day or so, your toe heals and you learn to watch out for scattered toys. 
This process is called acute inflammation because it lasts a relatively short time. Thus, you can thank your protective inflammatory response in the end. 

How is cancer like stubbing your toe 100 times?
Chronic inflammation is less forgiving. Imagine yourself stubbing the same toe every day for 100 days. The healing process, including the inflammatory, never gets a chance to finish its job. In fact, the body gets so confused that it begins to turn on itself. According to the National Cancer Institute, an infection that does not resolve itself can cause chronic inflammation to persist. Also, abnormal immune reactions to normal tissues, such as rheumatoid arthritis or lupus, or even conditions such as obesity, can place the body into a prolonged inflammatory state [Pahwa, 2020]. Eventually, chronic inflammation can cause DNA damage that is, mutations in tumor suppressor genes (oncogenes) that usually control the transformation of normal genes into malignant cells. Next stop, a malignancy. Example: People with chronic inflammatory bowel diseases, such as ulcerative colitis and Crohn’s disease, have an increased risk of colon cancer [NCI, 2015].

Is the shame of cancer like shooting yourself in the foot?
Many cancer patients naturally evaluate how their lifestyles could have contributed to their diagnosis. They may believe their cancer was because of their willful behavior – such as smoking even though they knew it could be deadly – and feel a deep sense of shame. This self-disgrace has both psychological and physiological ramifications. Social withdrawal, physical inactivity, and an increased intake of fats and sugars are the hallmarks of the shaming process. Hence, feelings of shame vis-à-vis a cancer diagnosis could cripple a patient’s ability to adhere to positive lifestyle changes as a factor in their treatment. 
Research has revealed that shame is a major trigger of the HPA (hypothalamic–pituitary–adrenal) axis –the body’s central stress response system [Kumari, 2016]. Once this system is activated, a physiological stress response is set in motion resulting in a cascade of biochemical changes. Researchers link these biochemical changes to increased inflammation that stifles the immune system. More specifically, investigators have tied shame and negative emotions to higher levels of a proinflammatory cytokine found in the immune apparatus called interleukin-6 (IL-6). Since IL-6 is highly interrelated to cancer progression, feelings of shame can physiologically contribute to advancement of the disease [Miyamoto, 2013, Kumari, 2016].

The cortisol roller coaster – For good or for bad? 
Perched high atop your kidneys are the adrenal glands. As mentioned, the adrenals are part of the HPA axis, the network that regulates how you respond to stress. The adrenals make the hormone cortisol, a type of steroid. Cortisol controls inflammation, manages blood pressure and blood glucose control, and strengthens the immune system. According to information supplied by the Columbia University Health System, this stress-fighting substance converts protein into fuel (glucose) when one is under physical stress or by psychological stress induced by traumatic events – terrific when you are being chased by a bear. Not good when you are caught in a traffic jam. But that’s normal and temporary.   

Normal cortisol rhythms follow a circadian, 24-hour cycle. They peak from 6 to 8 AM, and then drop to the lowest levels from midnight to 2 AM. However, many researchers say that it is not the normal wide swing of cortisol levels, as much as the suppression of cortisol rhythms that affect us most radically. Researchers noted a variety of links between cancer and cortisol rhythms. In a 2000 study [Sephton, 2000] and a 2013 study [Sephton, 2013], flattened cortisol levels were related to lower immune functioning and a higher mortality rate in people with breast and lung cancer, respectively. The researchers noted: “Cortisol slope predicted subsequent survival up to 7 years later. Earlier mortality occurred among patients with relatively flat rhythms, indicating a lack of normal diurnal variation [Sephton, 2000].”

A 2014 Stanford University study also found that in women diagnosed with metastatic breast cancer, the subjects with the healthiest cortisol rhythms were most likely to experience Posttraumatic Growth (PTG) [Inan, 2014]. PTG is a positive psychological state following a traumatic experience. The subjects with healthier rhythms experienced a more positive life perspective, improvements in relationships, and other optimistic changes following the diagnosis of metastatic cancer. Hence, the diurnal cortisol rhythm positively affects psychological as well as physical aspects of people dealing with cancer.

The guilt of cancer
Many people who have been diagnosed with cancer often see it as a black or white condition. Either you die from it or you get better and move on. That is true. However, some cancer patients are surprised that even though their cancer has been “resolved,” they are still cancer patients in one way or another. They may never get their strength back. Or they realize they have aged. They may value each day more than they ever did in the pre-cancerous days. Part of that feeling is the awareness that their life is finite. None of these feelings is abnormal. 

Guilt is a feeling of self-blame and regret that is typically difficult to accept and express. Guilt often leads people to replay "what if" and "if only" scenarios in their minds to figure out what they could have done in a different way. Guilt can set in for the cancer patient who did not succumb to his or her disease. Yet, they can never seem to get their personal jets off the ground. They feel guilty for not being themselves. Only this is who they are now: A cancer survivor for better or for worse. 

The many facets of remorse
People with cancer may feel blameworthy at various times for different reasons. For example, you may feel guilty because :
The cancer comes with financial costs or causes you to spend time away from work for treatment.
The treatment you received did not work the way you had hoped.
You blame yourself, feel ashamed of choices and habits that may have increased your cancer risk.
You could have noticed symptoms earlier or gone to the doctor sooner.
You survived cancer while others did not. This feeling is called “survivor’s guilt.”
You worry that you are a burden to your family or caregivers.

Help is here: People chime in on social media
The American Cancer Society published a blog called Cancer Survivors Network [ACS, 2020]. One category is entitled “The guilt of getting cancer” in which cancer survivors express their dismay over their changing lives, especially within the confines of the family unit. Here are some entries: 
“I feel so bad for my family that I got cancer and our lives have been changed forever. I try to do what I can around the house with laundry, light housecleaning, and doing what I can. But we lost a giant piece of our income and it affected how we live and where we live. It just kills me inside that I can no longer do what I used to do. Yes, I’m happy to be alive but it’s so hard on me at time to soak all of this in. I thought cancer would kill me or I’ll be okay and everything will go back to normal. I don’t remember signing up to be a cripple!” [Just4Brooks]
“Don't feel guilty because you survived cancer. You are not alone facing problems with your health. I have numbness in my left leg, pain in my hips when I have to walk any distance, pain in my shoulder so bad sometimes I can't sleep. Just do what you can, and take your time to try to get back to normal. I poop all the time, but I have a permanent colostomy bag, so it's no big deal for me. Just hang in there.” [Karguy]
“This total picture you paint is one of the 'shadow' side effects which are not publicized. The general population sees cancer in black and while...you either have it or you don't...you either get cured or you don't...you either live or you don't. But all of us know there is much more to the story. You say you feel guilty for getting cancer and for letting your family down financially. You didn't ask for cancer. It just happened. The financial implications of cancer are devastating for most. Again, that is not your fault. While you may not be able to hold down a 'regular' job, don't count yourself out of the game all together. Your disabilities may cause you to take longer to do something but count everything you can do as an accomplishment. You may not be able to give your family the material things you once dreamed of, but your survival and love are more precious.” [Lovekitties]
“Some good advice I received was 1.) Bad things happen to good people. You are a good person who did not ask for cancer. 2.) Cancer redefines your life. Yet, some good will come from that change. 3.) You do the best you can! Every day is a new day to try your best. Give yourself a break because each day is another chance to do what we can. [Relaxoutdoors08]

Snap out of it! 
If your emotions regarding your cancer diagnosis have crippled you to the point where you cannot perform routine daily activities, you may need to enlist the help of a professional, such as a social worker or psychologist. Whether or not you seek professional guidance, your goals in combating your guilt and shame include: 
Accepting your diagnosis. You cannot go backward, only forward. To wrack your brains attempting to figure out “why you?” are not productive. Getting the most out of your treatment should be your focus. 
Educating yourself about your type of cancer and the treatment used are essential in getting better. Know which drugs are used and why. Know the side effects and how long they might last. Ask questions!
Getting exercise and sleep. Remember the cortisol fluctuations that can determine the success of your recovery? Staying active and getting a healthy amount of solid sleep can help your cortisol levels and ultimately your prognosis.
Eating well. Yes, you can have that chocolate cake. But you also need nutritious foods such as fruits and vegetables. 

For more coping strategies and suggestions, go to these websites. 
Mayo Clinic. Cancer diagnosis. 11 tips for coping. https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-diagnosis/art-20044544  
American Cancer Society. Coping with cancer. https://www.cancer.org/treatment/survivorship-during-and-after-treatment/coping.html  
National Cancer Institute. Coping with cancer. https://www.cancer.gov/about-cancer/coping  

Ron Gasbarro, PharmD, is a recovering pharmacist, medical writer, and principal at Rx-Press.com.


American Cancer Society. Cancer Survivors Network. Available at: https://csn.cancer.org/node/228820 

Else-Quest NM, LoConte NK, Schiller JH, Hyde JS. Perceived stigma, self-blame, and adjustment among lung, breast and prostate cancer patients. Psychol Health. 2009;24:949-64. 

Inan FS, Üstün B. Breast cancer and posttraumatic growth. J Breast Health. 2014;10:75-8.

Kumari N, Dwarakanath BS, Das A, Bhatt AN. Role of interleukin-6 in cancer progression and therapeutic resistance. Tumour Biol. 2016;37:11553-72. 

Lentsch AB, Ward PA. Regulation of inflammatory vascular damage. J Pathol. 2000;190:343-8.

LoConte NK, Else-Quest NM, Eickhoff J, Hyde J, Schiller JH. Assessment of guilt and shame in patients with non-small-cell lung cancer compared with patients with breast and prostate cancer. Clin Lung Cancer. 2008;9:171-8. 

Marlow LA, Waller J, Wardle J. Does lung cancer attract greater stigma than other cancer types? Lung Cancer. 2015;88:104-7

Miyamoto Y, Boylan JM, Coe CL, et al. Negative emotions predict elevated interleukin-6 in the United States but not in Japan. Brain Behav Immun. 2013 Nov;34:79-85. 

National Cancer Institute. Chronic inflammation. Available at: https://www.cancer.gov/about-cancer/causes-prevention/risk/chronic-inflammation ; 2015. 

Pahwa R, Goyal A, Bansal P, et al. Chronic Inflammation. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2020.

Sephton SE, Lush E, Dedert EA, et al. Diurnal cortisol rhythm as a predictor of lung cancer survival. Brain Behav Immun. 2013;30 Suppl:S163-70.

Sephton SE, Sapolsky RM, Kraemer HC, Spiegel D. Diurnal cortisol rhythm as a predictor of breast cancer survival. J Natl Cancer Inst. 2000;92:994-1000. 


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