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Jonny Imerman is a two-time testicular cancer survivor and founder of the cancer advocacy group, Imerman Angels, which connects cancer patients and their caregivers with the one-on-one support of cancer survivors. Last Friday, Jonny visited the Oncofertility Consortium and discussed his motivation behind Imerman Angels.

Imerman understands that people undergoing cancer treatment benefit from developing relationships with cancer survivors who understand what they are experiencing. In fact, he calls people currently undergoing treatment, cancer fighters, not patients. According to Imerman, it indicates, “You can do something about your cancer. You are not passive in your treatment.”

Imerman founded Imerman Angels after he completed treatment for his own cancer and returned to the hospital to help young patients who were undergoing treatment. “I would end up talking to these cancer fighters for hours and could see the effect that talking had on them,” says Imerman. With a passion for the cause, Jonny established Imerman Angels in 2003. In just a few years, “We developed the largest group of cancer survivors dedicated to one-on-one support of cancer fighters,” says Imerman.

Cancer survivors, called Mentor Angels, interested in getting involved with the organization fill out a questionnaire online or over the phone discussing a wide variety of topics about themselves and their cancer. This allows cancer fighters who call Imerman Angels to be matched up with an Angel within 24 hours. Once the group brings people together, they also follow up within one week to make sure the cancer fighter gets the support needed.

Imerman Angels also assists the caregivers of cancer patients, including parents, children, and friends. Imerman developed the organization so, “Parents with a child in treatment can talk to families that were in the same place 5 years ago.” As with cancer patients, this provides emotional support to caregivers.

In 2009, alone, Immerman Angels made connections for more than 1,400 cancer fighters.  Further growth of the organization, such as increasing the number of survivors in the program, will allow Imerman Angels to support more cancer patients and their caregivers.

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Jonny Imerman also spoke about his experiences with fertility preservation on the myoncofertility.org website.

More than two years ago, Kara DeFrias began a blog about her journey to conceive a child. Over two years, this journey was unsuccessful. In the attempt to determine the cause of her infertility, doctors discovered that Kara had uterine cancer in February of 2010, at age 34. The cancer was still relatively early so while Kara had to undergo a surgery to remove her uterus and ovaries, Kara did not need chemotherapy or radiation. Prior to the surgery, Kara began working with Oncofertility Consortium members at the University of California, San Diego to undergo embryo banking. When Kara’s uterus and ovaries were removed, Kara donated some of her ovarian tissue to support the research at the Oncofertility consortium. Since her uterus was removed, Kara and her husband have begun to look into getting a surrogate for their child and it is looking promising. Kara’s chronicles are an inspiration to other fertility preservation patients. Read them here.

Radiation therapy is a tried-and-true method for treating cancers. However, this treatment also causes tissue damage and DNA mutations to the patient. Damage to the sexual organs or DNA mutations within male sperm or female eggs may cause pregnancies to result in miscarriages, stillbirths, or neonatal death just after birth. The effects of radiation on the offspring of cancer survivors are not well studied. A recent study of patients from the Childhood Cancer Survivor Study shows that radiation to most parts of the body do not cause an increase in stillbirths or neonatal death. However, radiation to the ovaries and uterus does increase this risk.

In the paper titled “Stillbirth and neonatal death in relation to radiation exposure before conception: a retrospective cohort study,” stillbirth or neonatal deaths occurred in 2% of pregnancies from cancer patients not treated with radiation therapy. Those with low doses of radiation to the uterus and ovaries also reported few cases of these fetal deaths (1-4% of pregnancies). However, 18% of cancer patients who received high levels of total radiation exposure reported pregnancies that resulted in stillbirth or neonatal death.

The cancer survivors in the paper that were at high risk for fetal loss were exposed to radiation levels equal or greater to 10 Gy (call gray), the unit of measurement for absorbed radiation. To give you an idea of that level of radiation, if a person was exposed to 10 Gy at one time, they would die within one month. But spread over the weeks and months of cancer treatment, this technique actually saves lives.

Interestingly, of the women treated with uterine or ovarian radiation prior to their first menstrual period, lower levels have greater effects on future pregnancies. In younger women, radiation treatment as low as 2.5 Gy can cause a 13% risk of later stillbirth or neonatal death.

In contrast to radiation, chemotherapy with the alkylating agents that most frequently cause ovarian failure did not increase the likelihood that pregnancies would result in stillbirth or neonatal death.

The study made me wonder if women treated with ovarian radiation therapy could use ovarian tissue cryopreservation. This could provide fertility preservation for women with a variety of pelvic cancers. However, the authors in the article suspect that the increase in stillbirth and neonatal death in these cancer survivors may be due to tissue damage of the uterus. Because the uterus and ovaries are so close, they could not determine if one organ or both are causing fetal death. Further research will be needed to determine the cause of increased stillbirths and neonatal death in these cancer survivors and to determine if ovarian tissue cryopreservation can preserve their fertility.

In 2007, the first book about Oncofertility discussed many of the scientific and medical advances available to cancer patients wishing to preserve their fertility. Collaborators at the Oncofertility Consortium now examine the humanities and social science aspects of the field in the book Oncofertility: Ethical, Legal, Social, and Medical Perspectives. These experts also emphasize other important issues in fertility treatments for cancer patients including communication, economics, history, and religion. The book is now available for pre-order on Amazon.com.