When you are first diagnosed with breast cancer, there are a lot of terms that are thrown around. There is a lot of information that you receive. You are on a pretty steep learning curve at a time when you are struggling with focus and with emotionally dealing with being told you have cancer.
If you are newly diagnosed and want someone you can chat with via email, feel free to send me a message (firstname.lastname@example.org). I’m happy to chat via email, share my story, and help you process what is happening, so that you can make the important decisions you need to make. The breast cancer journey is unique for each person, so sometimes, it just helps to ‘talk’ to someone that understands what you are going through.
This page has some tips that I learned through my experience. It is in no way meant to be medical advice. If you have some tips you’d like to see added to this page, please leave a comment.
- Ask for a copy of your pathology report. Depending on where you are, it is likely that doctors are not able to send you electronic versions of pathology reports. However, when you are in their office, they usually can print you a copy. Having a copy makes it much easier for you to go back and refer to later. It helps you better understand your diseases at a time when you are ready.
- Find a support group. If you are lucky enough to live in the San Francisco Bay Area, then take a look at the services offered by BCC (recently changed their name to Bay Area Cancer Connections). In addition to a weekly in-treatment support group (Saturdays 3pm-4:30pm), they provide support groups for various types of breast cancer, as well as a couple of young persons with breast cancer groups. Of use may also be the services they provide on understanding the medical research and navigating and filling in insurance claim forms. If you don’t have access to a face-to-face support group, consider Facebook. There are a lot of great support groups on Facebook. I particularly like Flat & Fabulous for anyone who is considering not having reconstruction. Now that I’ve decided on reconstruction, I’m not part of that group; however, it allowed me to live with the idea of not having reconstruction for several months – such that I’m more confident that I’m making the right decision. Beyond the Pink Moon is a good supportive community that allows you to ask questions and get a sense of how others with similar diagnosis are being treated.
- Decide who you will trust. When choosing your care team (specifically your surgeon, oncologist, plastic surgeon), decide who you can trust, and then trust them. There will be times when you hear about other treatments that don’t align with the care you are being given, or various medications you can take to reduce side effects. If you have decided who you can trust, it makes it easier for you to be OK with the treatment you are receiving. I trust my oncologist and my breast surgeon. So, when they make recommendations, I know that I’m in good hands. When I have wavered in this trust, I have regretted it. Trusting means that I don’t need to make every decision myself – I can put faith in the advice I receive from them.
- Find a friend to research for you. If you are not a researcher, find someone to help you. Find someone who can filter through the fluff and snake oil on the Internet and direct you to information that is actually useful for you. There is a lot of good information available on the Internet (I cringe when I hear people advise against using the internet) – but there is also a lot of snake oil. In the beginning it may be very difficult for your to filter. Have a friend or family member who can research for you is very helpful. In the beginning, this was my husband. He did all the research until I was ready to take on the role myself.
- Don’t read cancer stuff before bed. Give yourself a buffer of time before you go to sleep where you don’t think about cancer. You don’t want to be pondering your life and diagnosis all the time – and especially when you are trying to sleep. Find some light reading that you will enjoy. I took the opportunity to read books I wanted to read, like “An Astronaut’s Guide to Life on Earth” and “I am Malala” – two great books that I highly recommend.
- Find a reason to celebrate. Throughout your treatment, define your own milestones and celebrate them. For me, I had minor celebrations at different phases (e.g. finishing AC chemo), and major celebrations (e.g. finishing chemo). Celebrations give you something to look forward to, and something to focus on when things are tough. An why not celebrate, you earned it!
- Use your phone/tablet to record all your doctors appointments. This is especially important if you are going to your appointments alone. I rarely end up using the recordings, but knowing that they are there frees me to concentrate on being in the moment at the doctor’s office. I arrive with a check list of questions, and record the entire visit ensuring that each of my questions are answered.
- Be aware that treatment has changed a lot in the last 5 years. As a result, people who had breast cancer five years ago may have very different experiences than you are having. You have so many more options for treatment! If you need chemo, see my chemo tips. It may be the same chemo regime (e.g. AC-T) but the meds for side effects have changed (improved dramatically).