7 Survivorship Tips and Tricks
Navigating the adult post-Retinoblastoma world
Monday May 25, 2020
Diagnosis and treatment of eye cancer in early childhood is only the start of a lifelong story for many individuals affected by retinoblastoma. Marissa Gonzalez, Rb survivor and President of World Eye Cancer Hope USA, shares seven tips for being an active participant in your retinoblastoma survivorship journey.
One of the most important lessons I have learned as an adult retinoblastoma survivor, is that it is up to me to be an active participant in my journey as a cancer survivor. While I rely on countless people to help me along the way, I am the only one who is fully in control of my course on this ever-evolving path of survivorship.
I was diagnosed at 17 months old with bilateral retinoblastoma. I received radiation therapy and cryotherapy and had my left eye enucleated. I spent five years in active treatment before complete remission, and another five years undergoing exams under anesthesia until I was declared cured of the eye cancer at age 12. Thankfully, my teenage years were surgery free. However, facial and orbital reconstructions have plagued the past two decades of my adult life.
Navigating the world of cancer survivorship has been challenging to say the least, which is why I would like to share things I have learned along the way that will hopefully resonate and help others who are navigating the adult post-Retinoblastoma world.
Tip #1: Find Your Tribe
Everyone needs a group of friends or family members to support them through life’s trials and tribulations, and support along your survivorship journey is essential. Long-time friends, some of whom you may have known as a cancer patient, have the benefit of knowing you through some difficult times. Newer friends bring a fresh perspective to what you are going through – and the blend of both sets of relationships can create a cocoon of support
Not everyone in your personal support group needs to know a ton about Rb, or even that much about cancer. What is important, is that these people listen to you when you need it, question you when they are not sure about something, and provide comfort when the going gets tough. It is equally important that you are a good support system for your tribe as well – we all navigate life’s struggles at different times, but being a good friend is even bigger than cancer.
Tip #2: Get Your Social Game On
Nowadays there are Facebook support groups for nearly everything, and retinoblastoma has no shortage of groups. There are groups for moms, dads, grandparents, adult survivors, prosthetic eye wearers, reginal and country specific groups, etc. With a little research, you can find yourself a handful of support groups on Facebook that appeal to you.
Once you have joined, introduce yourself to the group. Tell your story and ask questions. I have found the retinoblastoma community on Facebook to be very responsive when new members join and are eager to share their similar experiences.
Consider organizing a coffee meet up for those in the group, who live in the same area. I have found personally that having a range of others who went through similar medical situations to chat with has been cathartic and healing. And I’ve made some really great friends along the way.
Marissa and her mother
Tip #3: Assemble Your Medical A-Team
Going to the doctor is never at the top of my list, but making sure I have the proper medical team in place to address my needs as an Rb survivor is essential. Start with the basics:
- Twice yearly teeth cleaning to ensure healthy teeth and gums.
- Once or twice yearly dermatologist visits to check for any skin cancer risks.
- Yearly physical with your general practitioner.
Now for the fun stuff! Depending on your treatment history, you may see your regular ophthalmologist annually or more frequently. It is important to establish your personal visit schedule with your eye doctor, or retina specialist depending on your needs. Even if you have had both eyes removed, it is essential to see an eye doctor every few years to examine your sockets.
If you have one or two prosthetic eyes, then you know the importance of regular visits to the ocularist. Twice yearly cleanings help keep your prosthetic looking bright and well cared for. The ocularist can also take a look at your socket and let you know if they see anything of concern.
I enrolled in a Life Survivorship Program at my local cancer hospital. They have been able to address second primary cancer risks that being an Rb survivor carries with it. They can also assist with genetic testing and your needs arising from your unique medical history. If you would like to find a survivorship program, ask your GP if they can look into it for you, or contact your local cancer hospital. If you see an oncologist, they can assist as well.
Please note that I am not a medical professional, and these suggestions are simply what I personally have found useful.
The following video is the Survivorship session from the 2017 One Retinoblastoma World meeting, held in Washington D.C. and hosted by WE C Hope USA.
Tip #4: Consider Genetic Testing
Genetic testing allows scientists to isolate the gene mutation in your DNA. Once they have found the mutation, a geneticist can speak to you about your specific mutation. You can find out if you carry a heritable form of retinoblastoma, if you are at risk for second primary cancers and more depending on your results. This information allows you to make informed decisions that are best for you and your family.
Personally, I found genetic testing to be a wonderful resource to inform myself about the second primary cancer risks that my mutation carries. While some of the results were difficult to hear, the added knowledge and understanding empowered me to make informed decisions on my health, wellbeing, and reproductive future.
To find a genetic counselor, start with your general practitioner and ask them for assistance. If you see an oncologist or find a Life Survivorship program, they will also be able to assist.
Tip #5: Stay Healthy!
This tip sounds so simple, yet it can be so tough! A balanced diet and regular exercise will aid in your overall health, which is important for cancer survivors.
If maintaining a healthy diet is difficult, consider seeing a nutritionist or ask your GP to give you guidelines and support for meal planning, tracking your weight, BMI and establishing health goals. Or start a healthy eating challenge with friends or on social media. Often when we embark on a project like this, we are more motivated to stick with it if our friends are involved.
Try new types of exercise that you’ve always wanted to do, like yoga or Pilates. Many fitness studios offer a free trial class and discounted packages for new members. Even just a thirty-minute, daily walk will help get your blood flowing.
Tip #6: Take Care of Yourself
Stress, anxiety and overworking yourself is more common than not. I have a particularly tough time unplugging from work when it is busy. My eye gets fatigued from being on the computer, and the small amount of vision I have gets strained. I experience difficulty sleeping when things are busy at work, which also leads to feeling tired the following day.
Self-care is easier said than done, but it is important for us as cancer survivors to de-stress whenever possible. Our bodies have been through so much medically, that stress reduction is vital.
Walk away from the computer for five to ten minutes per hour if you can. Take a quick walk around your office, or if you work from home, go outside for a few deep breaths. Find activities you enjoy that also carry little-to-no stress, such as jogging, puzzles, listening to audio books, painting, etc.
When safe to do so, treat yourself to a massage, a facial or an afternoon at the nail salon to calm your body. Some nail salons offer fifteen-minute shoulder or foot massages without having to get your nails done. Taking time for yourself, even in 15-minute intervals, can do wonders for your stress level.
For more tips on self-care and ways to reduce your stress, especially in the era of COVID-19, check out these links:
Marissa has explored many countries with her mother and friends, including Egypt.
Tip # 7: Be Your Own Advocate
As an adult, you are the only person who can fully shoulder the responsibility of being a cancer survivor. I rely on many people to get me through life, but at the end of the day, I am the one who manages my health care journey.
One of the best pieces of advice I can give you on this topic is to make your medical team your allies. If you are at a certain doctor’s office often, get to know the staff, spend a few minutes chatting with the nurses or PAs. If you have to be there often, you might as well be friendly with them. Develop a solid relationship with your core physicians. I don’t enjoy going to so many doctors each year, but I don’t have a choice, so I find it easier to accept it and try to have a good attitude.
I also make sure to do my homework before going to the doctor. If there is a new treatment, I research it. If I have a lot of questions, I write them down or make audio notes on my phone. I am an active participant in all of my appointments, and if I don’t understand something they are saying, I ask for clarification. Developing a rapport with my physicians lets them know that I take my health seriously, and that they are my partner in this, not just my doctor.
I often use the example of seeing my ocularist. I used to dread these appointments because they are so physically painful due to radiation damage to my socket and eyelid. But as I grew out of my teen years and had many orbital surgeries that required many visits to my ocularist, I stopped dreading them because I have come to love the people who work there. To this day, it feels more like a visit to see old friends and catch up – with the added bonus of a good polish for my eye.
Lastly, consider seeing a therapist or psychiatrist if you struggle with poor mental health or depression. I find therapy to be vital to my survivorship journey. A therapist is a wonderful and confidential arena to discuss any and all issues you might be facing.
Being a retinoblastoma survivor is a difficult road to travel, and not a journey anyone asks to take. Being a survivor carries many complications with it that follow you for a lifetime. Choosing to stay on top of your survivorship journey medically and emotionally is a decision only you can make, and I hope that you do. I also hope that you are able to find some of these suggestions useful, even if all you take away is that you need a massage (even if, for now, it’s a covid-modified self-massage like these scalp, face and hand massages). And if you have any tips and tricks, please take a moment to share in the comments.
Marissa recently took the trip of a lifetime to Antarctica.