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Resources for young women diagnosed with breast cancer

Young women diagnosed with breast cancer account for 11% of all cancer diagnosis in Canada (Statistics Canada, 2007). The majority of breast cancer resources that are available are geared toward older women. Because younger patients make up a minority of the breast cancer patient population their needs and concerns are often unmet (Good et al., 2006). Younger women often report that they are not provided with adequate educational information or support resources (Gould et al., 2006). The aim of this psychosocial support guide is to address some of the main concerns faced by young patients and equip them with quality websites for patient education. The topics that this guide will discuss include fertility, sexuality and intimacy, body image concerns.

Body Image

Younger women report higher levels of anxiety to physical changes that come with cancer. These changes can significantly impact the quality of life enjoyed by these women. Therefore it is essential to address these concerns early on. The resources listed below provide information regarding hair loss and breast surgery. These topics are further expanded on below.

BreastCancer.Org - Hair loss

Many women consider their hair as a physical extension of their sexuality and appearance. Losing one's hair may be difficult for many women. This website explores in depth the feeling that women may face under these circumstances. The site explains why hair loss occurs with certain cancer treatments for those seeking a scientific explanation. Also included are ways that women may choose to cope with hair loss whether it be wearing a turban, wig or choosing to go hairless and encourages women to make the choice that is best for them as individuals. This is a comprehensive resource with vast amounts of information on the topics of hair loss.

Note: The link will take you to the main page. Please click on the tabs on the left hand side for expanded resources.

Link: http://www.breastcancer.org/tips/hair_skin_nails

Breast Reconstruction .Org

Some women may consider breast reconstruction following a mastectomy and tis website is specifically aimed at women with breast cancer. Their motto is to "help empower women to make informed choices about breast reconstruction." The website thoroughly explains the breast reconstruction procedure and encourages patients to discuss their concerns and questions with their physicians. For those women who are considering reconstruction, the website provides detailed information regarding the different types of mastectomies including prophylactic mastectomy. It gives detailed information on the entire processes involved in breast reconstruction and the different types of reconstruction procedures that may be available to the patient. Breast Reconstruction .Org also includes personal stories complete with pictures of women who have undergone mastectomies following a diagnosis or prophylactically. This may be useful for patients who are seeking to read about others' experiences before making a decision of their own to proceed or not proceed with breast reconstruction. Also included in the website are frequently asked questions that may prove to be useful.

Link: http://www.breastreconstruction.org/index.htm

Cancer.Net by ASCO (American Society for Clinical Oncology)

Cancer.Net discusses the various changes in body image that can occur during cancer care. They also explore some of the physical impact that physical changes can have on a woman's overall wellbeing. The site also has suggestions and techniques for coping with body image changes. The strength of this particular resource is that this website is a reliable source of information as it is approved by the American Society of Clinical Oncology.

Link: http://www.cancer.net/coping/emotional-and-physical-matters/self-image-and-cancer

Look Good Feel Better .Org

This website was the most comprehensive and useful regarding aesthetic management of changes related to cancer. It has abundant and detailed information on everything from choosing the right wig, turban or scarf to styling one's wardrobe to accommodate cancer related weight gain/loss. This website stresses the fact that changes such as hair loss are temporary and that patients can look their best every day. Younger women may find this website particularly useful as they often place greater importance on body image.

Link for Hair care/wigs/turbans/scarves: http://lookgoodfeelbetter.org/beauty-guide/new-hair-looks

Link for wardrobe styling: http://lookgoodfeelbetter.org/beauty-guide/styling

Link for Makeup: http://lookgoodfeelbetter.org/beauty-guide/makeup-step-by-step

Livestrong Foundation - Body Image

This site offers suggestions for coping with changes in body image. It encourages open communication with others in the same situation and sharing experiences. It also offers insight into how to find support groups in the young woman's local community. It encourages patients to seek out therapy or counselling if necessary. This site is very similar to the information presented by Cancer Net.

Link: http://www.livestrong.org/Get-Help/Learn-About-Cancer/Cancer-Support-Topics?emotional-Effects-of-Cancer/Body-Image

Sexuality and Intimacy

Young breast cancer patients may experience low libido due to physical and emotional changes associated with their disease. Physical changes which involve loss of hair, change in complexion, body modification due to mastectomy and surgical scars can all lead to body image anxiety. Many young women may also experience vaginal dryness, painful intercourse, and loss of sensation due to early menopause or the therapeutic regime. Listed below are a few websites that provide resources for young women on the topics of sexuality and intimacy. A brief summary of what each website offers is listed below.

Breast Cancer .Org

Breast Cancer .Org explores the topics of intimacy and sexuality in depth. There is a vast amount of information on this site and it is well organized. It explores feelings and emotions that the cancer patient/survivor and partner may have regarding new changes that couple may have to face. This site shares stories, from other survivors and may help patients/survivors identify with the experiences of other women. Breast Cancer .Org encourages communication between partners and provides tips on how to approach and start an open dialogue between partners. The website also stresses the importance of open discourse about sexuality between the patient/survivor and his or her health-care provider and encourages seeking help from trained sex therapists or psychologists.

The website also provides resources for women who may be going into a new relationship following a mastectomy or other body alteration due to cancer treatment. These women may face particular anxiety regarding the perceived acceptance of one's body by the new partner. Included in the site are stories and examples of how women have approached the situation and have accepted their new bodies and how they approached the subject with potential partners.

Also included in the website are frequently asked questions, which may prove to be useful for patients in similar circumstances. This website is very user friendly and has practical advice for women that may be seeking information on the topics of sexuality and intimacy.

Note: The link will take you to the main page. Please click on the tabs on the left hand side for expanded resources,

Link: http://www.breastcancer.org/tips/intimacy

Living Beyond Breast Cancer

This website has a comprehensive PDF resource available to download that discusses sexuality and intimacy in depth. It gives detailed information on how breast cancer can affect a woman's sexual life. It describes various treatments (surgery, radiation, hormonal therapy, targeted therapy, etc.) and the impact that each of these may have on sexual functioning. It provides information on birth control and effective use of contraception. Discussion regarding contraception may be especially useful for women in their reproductive years. It also provides information on managing common causes of sexual dysfunction such as vaginal dryness and painful sexual intercourse. The strength of this resource is that is the most comprehensive resource that I have found on the topic of sexuality and intimacy.

Note: One must click on the link to download the PDF on the website address given below.

Link: http://www.lbbc.org/Understanding-Breast-Cancer/Guides-to-Understanding-Breast-Cancer/Guide-to-Understanding-Intimacy-and-Sexuality

Fertility

Many young women diagnosed with breast cancer are concerned about the effects the disease and the treatment may have on their fertility. Some cancer treatments may induce early menopause thus reducing the viable number of childbearing years. Another concern that has been voiced by young survivors is pregnancy and if the various hormonal changes associated with pregnancy may cause the return of cancer. This section of the manual consists of a list of educational resources on fertility found on the web.

Cancer.Net by ASCO (American Society for Clinical Oncology)

This website acknowledges that fertility is one if the leading concerns for young women diagnosed with cancer. Cancer.Net promotes an open discourse between the patient and her physicians regarding fertility and pregnancy. It encourages women, who may be considering pregnancy to discuss the various treatment options available to them and the effect that each may have on fertility. The site contains information regarding fertility preservation and also includes video resources. The strength of this particular resource is that this website is a reliable source of information as it is approved by the American Society of Clinical Oncology.

Link: http://www.cancer.net/coping/emotional-and-physical-matters/sexual-and-reproductive-health/ways-preserve-fertility-cancer-treatment

Link for video: Moving Forward, A patient Education Video Series for Young Adults with Cancer (fertility concerns) http://www.cancer.net/multimedia/videos/young-adults-cancer/fertility

Pregnant with Cancer

Pregnant with Cancer is an online resource for those women who may already be pregnant while diagnosed with cancer. This is a comprehensive website whose mission is to provide "women diagnosed with cancer while pregnant with information, support and hope." One of the key features of this organization is to match pregnant women diagnosed with cancer to a support network of other women who may have had a similar diagnosis or experience. Pregnant with cancer fosters a sense of community among young women with cancer. This website also offers access to a Maternal Fetal Medicine specialist, who may be able to answer medical questions that a patient may have. Also available is the opportunity for survivors to volunteer and give back to the online community.

Pregnant with cancer encourages young women who have being diagnosed with cancer while pregnant to register in an international registry that tracks pregnancy outcomes. The registry initiative may prove to be a valuable research tool, which has the potential to provide more choices to women in similar situations in the future. The organization is a not-for profit entity and does not charge for access to the online community.

Link: http://www.pregnantwithcancer.org

My Oncofertility .Org

My Oncofertility .Org has a very well done animation series that explains how cancer treatment affects female fertility. There are also similar animations explaining the basics of ovarian tissue cryopreservation and egg and embryo banking. These animations break down complex topics and make it easy to understand.

Link: http://myoncofertility.org/animation_listing 

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