Cancer for an AYA
“Each year, about 70,000 adolescents and young adults (AYAs) between the ages of 15 - 39 are diagnosed with cancer in the U.S., almost six times the number of cases diagnosed in children up to 14 years of age. Over 89,500 AYAs will be diagnosed this year in the U.S. AYAs are THE most underserved population by age.
Young adults living with cancer confront unique challenges related to work, school, health insurance, relationships, sexuality and fertility, as well as emotional distress and depression. These major life milestones that are tricky for all young people can feel impossible when cancer is thrown into the mix.” *
As I sat in the infusion chair for my second round of chemotherapy, I remember someone from Gilda’s Group stopping by the chair to talk about classes and activities with other cancer patients at Gilda’s Chicago. I certainly was not in a place that I was comfortable with saying I was a cancer patient so there was no way I was ready to go to a place for those who had been diagnosed with cancer. After my third round of chemo, I met with a nutritionist but again I was nauseous and nothing tasted good so the thought of talking about food was not something I wanted to do. Other than those two ladies, I never received a visit from a therapist or a social worker. I also didn’t receive additional resources to support surgery, radiation or life after treatment other than what I was first given at my first meeting with the nurse navigator. The resources that were shared with me included where to get a wig, compression sleeve and an over the head bra for after surgery. Unfortunately at this time there was no AYA group to support breast cancer patients and it was only through a friend who worked at an organization and a therapist later on that I found out about a few organizations that supported AYA.
Northwestern had support groups for cancer patients, but they were for all ages and as the facts stated above, young adults confront challenges that those over 45 don’t or at least in a different way. I am fortunate to not have been impacted by all of the unique challenges, however I have encountered most of them.
Relationships
Fertility
Sex
Health Insurance
School
Work
Body
Exercise
Support Groups
Emotional Distress/ Depression
It’s hard to talk about and relive many moments, but I believe it’s important to share the challenges that I came across and am still going through. Those that I have not experienced, I will share some resources that I’m aware of to provide care and support. They are the experts in this area and will do a much better job at supporting you.
Relationships:
“You are way too young to have a cancer diagnosis,” were the words I heard when I went in to have my lumps examined. I maybe was young, but I was BRCA positive and had family history. Relationships are difficult in general, but add the word cancer and it just adds another level to maintaining and growing relationships. After my diagnosis some family members came around and provided support, but many thought I wanted to do this on my own and didn’t provide much care. I was told I didn’t ask for help so they didn’t want to add any burden. I had family that lived blocks away and I didn’t hear from them or see them unless it was a chemo day. No one showed up on a good day to keep me company or to help us with household chores or meals. I didn’t know I had to ask family to support me, but I guess I learned I did. I did have a few friends that came through with visits, gifts, meals and notes. These small gestures definitely went a long way, but many just didn’t understand what I was going through. The support started to end after chemotherapy and I still had surgery and radiation ahead of me. Surgery took place and then radiation and support had pretty much died off. I barely heard from anyone to see how I was doing or feeling or to see what they could do. Many times I felt isolated or alone even with my husband around. He did the best he could to be with me when he wasn’t at work. Without his insurance, his hard work and support I wouldn’t have made it through treatment like I did. As much as he wanted to be around and I wanted him around more it just wasn’t possible. As I said, relationships can be hard to start, grow and maintain and then you add in something that makes people uncomfortable to talk about and they don’t understand and it just makes it that much harder.
Fertility:
Some but not all AYA’s are left infertile after cancer or treatment. Young adults who maybe wouldn’t have thought about starting a family now have to consider reproduction challenges and options one many times wouldn’t think about.
“Chemo is going to destroy your ovaries” was what I was told when I received my treatment plan. “Since you are 29 years old you should think about going through fertility treatments” they added. My husband and I were actually having the conversation to start trying to have kids naturally. Now I’m being told that I have to harvest eggs to create embryos so that one day I have a chance to have kids of my own. My team of doctors were aggressive with wanting me to start my chemotherapy right away, but with their approval I started IVF treatments right away so that I could get moving with treatment.
The next part of my treatment plan after chemotherapy, surgery and radiation was for hormone therapy- tamoxifen. Being advised to join the 10 year plan, the possibility of actually conceiving naturally and carrying was just not in the cards. Especially this would not happen before 5 years. Knowing we truly wanted kids we started down the road of trying to organize our options. Even thought it was one of the worst parts of post - cancer and survivorship, working with a surrogacy agency was one of the best things we could have done. We now have our beautiful daughter. The fertility struggles and challenges are still something we deal with every day as we’d like to one day add a son or another daughter to the family. Cancer treatment may be over, but how cancer affects a survivor every day doesn’t go away. I just recently discovered with a new FSH test that I am most likely in menopause which changes a lot of things - the medication I’m on, the decision to have my left ovary removed and there is no chance of ever harvesting eggs again.
“1 in 8 of your friends is struggling with infertility - your support matters more than you know.”
It seems I’m the 1 in 8 with breast cancer and infertility.
Sex:
I’m pretty much an open book, but this is something I will keep private between me and my husband. What I will share is that treatment - chemotherapy and surgery- truly impacts intimacy for young adults with breast cancer. Talking to your partner is important. Learning that there are more ways to be intimate with your partner is even more important. If you are feeling low libido or struggling with communicating with your partner my advice would be to seek out a support group or therapy. It can’t hurt, it can only make your relationship stronger. Those who are not in a relationship, but looking to start one I honestly don’t have answers for you. I’m sure there are women out there that would be open to speaking with you. If you have any questions I’d be happy to communicate one on one.
Financial:
Cancer treatment is expensive! Many young adults do not have the funds or the health insurance to take care of their looming expenses. Medical debt and bankruptcy are big issues for AYA. I am very grateful that at the time of my diagnosis, my husband’s employer supported their employees with a very well thought out health plan. We had many expenses don’t get me wrong, but I thought the insurance we had we would be up to our ears with the cost of Invitro, treatment, surgery, radiation, reconstruction, hospitalization and more. Please check out the following for financial support:
Chick Mission
AiRs Foundation
Jills Wish
Pink Lotus Foundation
Pink Shoes Inc.
A Silver Lining
The Sam Fund
Missed School or Job:
Many AYAs aren’t able to continue with work or school while they receive treatment, leaving gaps on their resume and lost years of earning. At the time of my diagnosis I was working in Chicago at a nonprofit as operations and event manager. I truly loved what I was doing and I did feel that leaving was necessary. The team allowed me to work from home and come into the office on a need to need basis. This worked out pretty well so I thought. The first few months I receive a lot of support, but as I finished chemotherapy and had my surgery, I was constantly asked when I would be back in the office. I was informed that my role was going to be altered and that I had to choose if I wanted to go in the operations or event direction. Before even really choosing they chose for me and hired someone to take over the operations part of my position. Around this time they also hired a development director. After radiation I slowly transitioned back into the office. Unfortunately there was lack of communication with the director and little was made known to her about my situation. Many times I would be questioned why I was coming in late or leaving early. In addition to communication the support I felt in the office was very minimal. The first day I was in full day I felt that there was a lot of tension and I felt really uncomfortable. This was after an event we had and it was the most I had done in months. Exhaustion took over me, but that didn’t matter. I wasn’t expecting anyone to let me slack off, but the reality of it is looking back on the time I really should have taken time off. I had finally found a job that I enjoyed though and the fear of not having the role when I completed my treatment kept me from leaving.
I don’t know what it’s like to leave a job or take time off from school. What I can suggest is checking out Careers & Cancer as well as try to find others who have taken time off of work or who had to leave school for some time. It’s nice to be able to connect with others who understand what you are about to go through.
Body Image, Exercise and Nutrition:
These are all topics cancer patients deal with - those who are AYA and older.
Body image is a complicated subject. Instilled at a young age, we become aware of our bodies, how we feel in our skin, what makes us who we are, and how we want others to perceive us. Personal body image evolves throughout our lives and can be affected by any number of events or situations—puberty, pregnancy, age, and health.
Body image and acceptance looks a little different in my option as a cancer survivor.
Cancer and its treatments affect each patient differently and may include:
Temporary or permanent hair loss
Weight gain or loss
Scarring
Loss of limbs, organs, or breasts
Changes in physical and sexual abilities
Infertility/Menopause
Swelling
Changes in skin and nails
Relationships, Sex and Self Esteem can all be challenged by the above. Having your breasts removed or losing your hair or having scars all over can really impact one’s image of themselves. I’m still struggling with this, but my hope is every day as I continue with affirmations, my gratitude journal, eating well and exercising that I may not avoid the mirror as much, maybe walk around naked more and feel more confident! This is a hard one and I feel that AYAs are affected by this a lot more especially in today’s world
Emotional Distress/ Depression:
As the above depression and emotions are heightened in all cancer patients, however for AYAs, the support for these can be lacking. At a time when they are first living on their own, cancer sends many AYAs back into a more dependent role. Loss of identity and independence can trigger depression and emotions. Also fear of reoccurrence, scanxiety, survivors guilt - AYAs have a lot on their mind. Mental health is a huge concern for this community.
There are support groups out there, but many are not for just those who are young adults. I chose not to attend support groups during treatment, however those who I have talked to who did many said they were the youngest there. The older patients couldn’t relate to issues regarding relationships or jobs or school or financials because they are in a different place in their lives.
After a while I chose to see a therapist and it was the best thing I could have done. The one on one therapy has worked for me, however I did find some group therapy that worked as well. The group therapy came from going on mindfulness and adventure travels with young adult cancer survivors. These trips were through First Descents and True North Trek. Two organizations I highly recommend looking into!
Being a young adult cancer patient is not easy, but with a positive attitude I got through the chemotherapy, surgery and radiation. Life doesn’t get easier as many may believe so let’s keep supporting those AYAs out there, raise awareness about how difficult it can be for adolescents and young adults under 40 to deal with cancer while trying to manage their hectic daily lives and BE AYAWARE!
*https://www.cancer.northwestern.edu/cancer-care/survivorship/ayao.html
