Tag Archive | advice

My learnings from the pre-treatment phase

It has been nearly one month since I was diagnosed with breast cancer.  Though my journey has only begun, I’ve collected a number of learnings from this pre-treatment phase (pre-diagnosis, testing, and diagnosis) that I share with you below.  I truly hope you and/or your loved ones find benefit from them.

  1. Do self exams:  If you’re a female, do them.  If you’re male, tell all your female loved ones to do them. It doesn’t matter if you or they are 30 or 60 – it can save their life.  Yes, I understand not everyone’s insurance covers MRIs and mammograms, but that is no reason to let a lump go undiscovered.  Many articles say to conduct self exams in the shower, but I recommend trying to (also) do them when lying down with your arm lifted creating a right angle at your shoulder.  My lump was best felt in that position and easily overlooked when standing up.
  2. Healthy paranoia can be your friend:  If you even think there’s a possibility you’ve felt something, act on it.  I knew my lump could easily be pregnancy-related -probabilistically it should have been.  Healthy paranoia, however, drove us to the OB-GYN’s office and eventually to a biopsy.  It was not only a great friend, it may have saved my life.
  3. Be forward-looking:  It’s perfectly fine to be shocked and to cry and to wonder how life can be so unfair.  Soon though, you realize it is more empowering to focus energies towards action.  Figure out what needs to be done and work towards doing it.  As Ash likes to recite – “Hope is not a course of action.”
  4. Emotions come in waves:  You never know when and where what emotion will hit you.  It can vary when sharing the news of your cancer with family and friends – sometimes I cried, sometimes I was very composed and just spoke matter of factly, and sometimes I kept laughing as a socially awkward defense mechanism.  Similarly, emotions will come in waves at the most unexpected time.  Despite only ever planning to have two children, I couldn’t help but cry when the doctor asked me if I’m done having children.  Though I know fertility treatment options are now available for those that want to improve their chances of preserving that ability, the thought that I might lose my fertility and not even have the choice to have more children, triggered an unexpected sense of mourning.
  5. You never know how someone might be able to help you if you don’t open up to them:  We got access to the leading team at Stanford because Ash shared the news with his assistant at work and it just so happened that her godparents are big donors to the breast cancer center and were able to call in a favor.
  6. Compile and retain a copy of all medical reports and imagery:  Collect all relevant medical records from past exams and request copies of the imagery on CD from each hospital’s release of medical information department.  When going to each new test/procedure, request a copy of the report and imagery at that time itself.  It may be given to you in that appointment or mailed to you later, but standard to be provided for you to retain in your personal records.  Carry these records to all doctors/institutions you are seeking opinions from, but never leave behind one of your original copies.  The doctor will be equipped to make a copy and return the original to you.
  7. Take time to find the right locus of care:  Though psychologically, you and your loved ones will want to move to action and get the tumor out as soon as possible, there is longer term value in taking the time to reasonably slow down and do your research to assess the right treatment plan and medical team.  As many doctors reminded us, when it comes to breast cancer, days don’t matter, months do.  Ultimately though, weeks are a grey area so take the necessary time, but be efficient when doing so.
  8. Take control of your own medical fate:  Do your own research, find the doctor with the narrowest and deepest expertise for your specific case / tumor, get a 2nd (maybe 3rd!) opinion, and don’t be shy about asking questions.  One family friend shared the story of her mid-30s friend who was diagnosed with and treated for Stage 1 breast cancer, only to be diagnosed with Stage 4 cancer just 4 months after she finished her treatment.  Perhaps her stage was misdiagnosed from the beginning or perhaps her treatment plan was insufficiently aggressive.  Regardless, multiple opinions and/or increased testing could have given her story a different ending.
  9. Ultimately, however, you have to put your trust somewhere and in someone:  The problem with being over educated and comfortable with data is that it’s easy to get caught up in a never-ending cycle of research and second-guessing.  We reached a point where we were reading and comparing the details of clinical trials to essentially identify our own treatment plan, only to further confuse ourselves since no perfect data exists for what we need to know.  Eventually, the science becomes an art and you have to trust that your medical team is competent and acting in your best interests.
  10. Stay positive and be thankful:  Step back and identify the silver linings in your story.  Recognize what you have to be thankful for, what you have to fight for, and ultimately, what you have to live for.