If I could talk to my newly diagnosed self, this is what I would say.
After being diagnosed with breast cancer via a phone conversation with the doctor, a new journey began.Fortunately, I was quickly booked for a tumor board review appointment, but until that point in time, I didn’t have many specifics about the cancer type nor the plan which would be followed.
What I would tell myself as a newly diagnosed patient:
- Practice patience. You may not have all of the specifics about your cancer type until more testing is done, including surgeries to be scheduled at a later time. A treatment plan may include some adjuvant treatment prior to surgery, so that prolongs some of the information gathering. It can be a time-consuming process to do a thorough diagnosis and come up witha personalized treatment plan. This can be a trying time.
- Ask for help. Take someone to appointments you trust to understand the doctor’s information and take notes for later review. This can remind you of information forgotten or heard differently.When I met with my surgeon, he recommended further MRI testing. He warned that there are often false positives to be addressed in another biopsy, so not to be thrown off by that. I was. When I heard further biopsies were needed, I wanted to revert to a more drastic surgery. My “note taker” reminded me that I said I would remain calm and hope for false positives.
- Know your team and who does what. Medical oncology, radiation oncology, radiologists, surgery, genetics and hereditary counseling, plastic surgery, etc. may all be new specialties to you. You may meet many of these prior to a tumor board review meeting.
- Keep a notebook with appointments, information, phone numbers and questions.Don’t be shy about questions.
- Prepare for the next step and/or procedure. Remember internet/books can be overwhelming but ask your care team for what to expect.If you are comfortable researching on your own be selective e.g. Dr. Susan Love’s Breast book.I read up on MRI testing for breast cancer and knew what to expect which helped prepare me for the imaging.
- Share information as you learn it, and with those you are comfortable informing.Try not to overwhelm those well-wishers with too much detail.Be patient with their questions. Your treatment plan will be tailored to you and your situation, so try not to use other people’s story/outcomes as meaningful to your case.
- There are many types of cancer groups. Ask about genetic testing. This may be suggested in defining a tailored plan for your treatment. It may also prove useful for other family members. If done, plan on doing some follow-up appointments as time goes by. Information regarding genetic mutations and significance continues to evolve and sometimes alters future testing and treatments.
- Ask the care team about what testing will be done to devise your treatment plan and decisions. One example is testing to see if chemotherapy is recommended (adds value). This will be part of your team’s therapy plan for you.
- Seek out additional resources your hospital/community provides to help you manage stress and discomfort. Things like gentle yoga, meditation classes, group support, writing, etc. are available.You will meet incredible people.
- Clinical trials are often discussed even if they do not address a medication or surgery option (non-interventional). Some studies are designed to gather data about general cancer types and treatments and others study quality of life and the effects of going through cancer treatment. While not necessarily benefiting one patient they can be used as guidance going forward to address care for many.
- Newly diagnosed patients may be asked to provide blood or tissue samples for further research. This can be a discussion with your care team if you are interested.
This post was written and submitted by a CURE reader. The article reflects the views the author and not of CURE®. This is also not supposed to be intended as medical advice.
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