Cancer Previvors Treatments and Support

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If you have a family history of cancer, you may have heard of the term "previvor," which was coined by the organization FORCE (Facing Our Risk of Cancer Empowered) and refers to surviving a predisposition to cancer. If you have a genetic predisposition to cancer, you may find it helps describe what's hard to define and find support.

Learning You're a Previvor

With some cancers, there are preventive measures that can be taken to lower risk, but unlike for those who have been diagnosed with cancer, there is less information on how to begin if you're predisposed but not yet diagnosed.

Certain screening tests may aid in early detection. There also may be surgeries or medications which can reduce the risk that you will develop cancer in the first place.

For example, if someone has a BRCA1 gene mutation with an elevated risk of developing breast or ovarian cancer, you may begin early screening with mammograms or breast MRIs. Those at risk of hereditary colon cancer may begin colonoscopy screenings at a young age. Preventive approaches may exist as well, as was the choice Angelina Jolie made with her prophylactic mastectomies.

Reasons Someone May Be a Previvor

There are several reasons why someone may be considered a previvor. They include:

  • Those with a known genetic mutation that raises cancer risk, such as BRCA1 and BRCA2 mutations.
  • Those who have a strong family history of cancer. Several family members with one type of cancer or people with certain combinations of cancer (such as breast cancer in some members and pancreatic in another) are of more concern than others.
  • Having a risk factor for cancer that raises your risk, such as having a history of inflammatory bowel disease, which may raise your colon cancer risk.

Understanding Your Genetic Risk

Most people who are previvors are likely unaware that the term fits. Genetic testing for cancer is only a recent phenomenon, and our awareness of cancer risk is improving every day. It's important for everyone to have an understanding of their family history and genetic blueprint and to learn about hereditary cancer and genetic testing if applicable.

Since the understanding of hereditary cancer is in its infancy, there is a lot of inaccurate information out there as well. There isn't a simple blood test that can tell you what cancers you are likely to develop, nor are there solid guidelines for the majority of possible scenarios.

A basic understanding of statistics is also important when you read about genetic risks to avoid unnecessary fears. For example, you may hear that having a particular gene doubles your risk of a type of cancer. Statistics like this can be misleading. If it is referring to cancer such as breast cancer, which occurs in 1 in 8 women, this is an important finding. Having double the risk would give you a 1 in 4 risk of developing the disease. In contrast, if rare cancer occurs in only 1 in 100,000 people, hearing that you have double the risk could be frightening. Yet, this would only mean that your risk is now 1 in 50,000.

You may have hesitated to ask your family members what conditions run in your family—it can be an awkward discussion to initiate. You may want to check out some ideas on how to have a cancer family history chat.

Challenges 

Those who are cancer survivors may not recognize the challenges of being a previvor. You might think that previvors should get helpful support from those who have already been diagnosed, but this is not always the case. There is much less support for previvors than survivors. As a previvor, you may feel isolated and alone.

Being a previvor is anxiety provoking, and in some ways, this anxiety can be worse than even that of survivors. Why? If you're diagnosed with cancer you can come up with a treatment plan. You can do something. Instead, as a previvor, people face the fear of the unknown and the uncertainty of the future.

Another difference is in treatment planning. Guidelines are present for most cancers, and most oncologists are familiar with these. What should you do as a previvor to reduce your risk or aid in early detection of cancer? It's not always clear. The technology used to detect a predisposition (especially genetic testing) is still lagging.

In one study looking at reproductive counseling in previvors, it was found that less than half of health professionals questioned were familiar with management. And, of those who were familiar, most stated that their knowledge was either low or moderate.

Hereditary Cancer vs. Specific Gene Mutations

There are over 72 genetic mutations linked to breast cancer, some of which are high risk and some of which are low risk. On top of this, there are likely several we have not yet discovered. You've probably heard about BRCA gene mutations, but these account for a maximum of 29% of hereditary breast cancers. BRCA mutations are thought to be a factor in just 5 to 10% of all breast cancers.

Testing is available for BRCA mutations, as well as several non-BRCA gene mutations that raise breast cancer risk, but most of the time women who develop hereditary breast cancer are unaware of their risk. This is why it is important to consider family history and not look at gene testing alone. In fact, some physicians believe that anyone who has gene testing should also see a genetic counselor. A genetic counselor may sense that a risk exists by looking at your family history even if your tests are normal.

Managing Your Risks 

Managing your predisposition to cancer will depend on several factors, including the type of cancer, the relative risk that you could develop cancer, your age, and much more. Each person is different, and the approach can vary for individual people depending on where in life they are. If you wish to have a family, having your ovaries removed would not be a good option, but if you have completed your family and have a BRCA mutation it may.

Let's look at some examples of screening (to aid in early detection) and treatments (to reduce risk) that might be considered.

Examples of treatment options include:

  • Mastectomies for gene mutations with a high incidence of breast cancer (BRCA1 or BRCA2).
  • Removal of the ovaries and fallopian tubes for women with BRCA gene mutations.

Treatment options are the only option for some cancers. In some cases, early or more frequent screening may be considered. Examples include:

  • Earlier screening and/or MRIs for breast cancer.
  • GYN exams and ovarian ultrasounds to detect ovarian cancer.
  • Colonoscopy to screen for colon cancer (with some hereditary syndromes such as Lynch syndrome that may start in late childhood).
  • PSA and other tests for men with a BRCA mutation. (With a BRCA mutation, men may not only be more likely to develop prostate cancer but also may develop a more aggressive prostate cancer. The 5-year survival rate for men with prostate cancer is now 99%; whereas, the 5-year survival rate for men with a BRCA mutation is 50%).
  • Regular dermatology exams with a family history of melanoma.

Coping With the Emotions 

If you've learned that you are a previvor, you are probably feeling both anxious and frustrated. Anxious because of the uncertainty and frustrated because guidelines, if they exist at all, are unclear.

At the same time, you may not feel the compassion you deserve. What we've learned with cancer survivors is that the depth of emotions felt are similar whether a person was diagnosed with an early stage of a very curable cancer, or has been diagnosed with an advanced or end-stage cancer.

If you've been told you are a previvor, it's frightening, and you need the kind of support you'd receive if you had cancer. Having a definitive diagnosis, even if bad, is sometimes easier than coping with the unknown.

Finding Support

Finding support is essential if you are a previvor. We hear a lot about how important support is for those who have been diagnosed with cancer. Support has even been linked with survival in a few studies! Those involved in cancer support groups often remark on how priceless these connections are even if they have supportive family and friends. It is validating to talk to someone who "gets it" and truly understands what you are going through.

The same is true for previvors, who may feel set apart from both those who do not have a predisposition and those who have cancer. Organizations such as FORCE (Facing Our Risk of Cancer Empowered) are out there. Facebook groups are popping up, and there are people active on other social platforms. If you wish to look on social media for support, the hashtag is #previvor.

Tips 

A few tips for previvors are in order, though everyone is different.

  • Learn about your predisposition. This is one situation in which knowledge is truly power.
  • Accept that not everyone understands the fear and uncertainty that goes with having a predisposition to cancer.
  • Find a physician who understands cancer genetics and has an interest and experience in risk reduction and early detection.
  • Have an advocate among your family and friends who can stand up for you if you are criticized for any approach you take.
  • Practice ways to redirect conversations in which people tell you what you should do. If you openly talk about being a previvor, you may have well-meaning friends recommend everything from a diet of only carrot juice to the latest food found in the Amazon. Keep in mind that people often have a lot of advice and opinions on how to manage cancer or a predisposition, only to change their minds if diagnosed themselves.
  • Find support.

A Word From Verywell

If you've learned that you have a predisposition to cancer, you may feel anxious. It's only been in recent years that we've had genetic testing available or even known about some predispositions. This may leave you frustrated.

Learning as much as you can about your predisposition and putting risks into perspective is very helpful. Finding health professionals who are interested and motivated to help you is a must, but finding the support of others similarly coping with being a previvor is priceless.

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Article Sources
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  1. U.S. Breast Cancer Statistics. Breastcancer.org. Updated June 25, 2020.

  2. Gietel-Habets J, de Die-Smulders C, Tjan-Heiginen V, et al. Professionals’ knowledge, attitude and referral behaviour of preimplantation genetic diagnosis for hereditary breast and ovarian cancer. Reprod Biomed Online. 2018;36(2):137-144. doi:10.1016/j.rbmo.2017.11.005

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