Image above: Megan Smith, Obama White House Chief Technology Officer; Steven Keating, holding replicas of his brain tumor; and John P. Holdren, Director of the Obama White House Office of Science and Technology Policy; on the day the Precision Medicine Initiative was announced.
I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes.
This post requires a bit more explanation than others since I asked for specific advice about preparing for brain surgery. Steve answered the call, that’s for sure!
Steven Keating, in response to Case study: Brain surgery:
As you asked folks to share, I’ll just add a few questions/points that helped me through my own brain cancer experience in case they are useful for any patients. They are divided into two areas – personal and technical.
– Ask family members or friends to accompany you to all appointments as the more ears/eyes/questions, the better. Try to find people who can be your advocate, can take notes, and help with logistics/insurance issues.
– Often your family/friends want to help, they just don’t know how and don’t know how to bring it up. If you want help, just ask them or find one person you trust and ask them to help organize your supporters and tell them what works best for you (i.e. do you want flowers/books/food, them to be with you in appointments, do you want them to help with updating other supporters, making a blog website, etc).
– Don’t fear statistics – everyone is different and you will get through this!
– Post-surgery the brain can take a while to recover, though it is incredibly flexible and full recovery often occurs. Almost all brain surgery patients I’ve talked to have had issues right after surgery (things like trouble talking, writing/spelling, using their limbs properly, headaches, sleep issues, etc). Though over time (sometimes as quickly as after a few weeks or months), these issues get better over time and often disappear.
– Enjoy the rare perspective you’ll have on what is important in life. You will make it through this, and that perspective will stick with you. Plus, think of all the cool things you might get to experience that almost no one else on the planets gets to do – things like:
– Feel someone touch and stimulate your brain if in awake-surgery (doesn’t hurt, quite an amazing sensation!).
– Explore your own skull and tumor through your MRI data. Check out 3D Slicer (https://www.slicer.org) if curious to dive into the data, you can make your own textbook images, and perhaps even 3D print your skull or tumor using http://www.Shapeways.com or another 3D printing site. Put your tumor to a better use by making it into a bottle opener or a Christmas tree ornament to give to friends!
– Be able to participate in research studies that can help save other people’s lives. Share your data/comments/thoughts online to help your supporters understand what you are going through and let other patients learn about your treatment experience.
– If you do proton radiation, you get to sit inside a particle accelerator and hit by the fastest bullets in the world – protons at over 1/3 the speed of light (over 200,000,000 MPH)! This makes you slightly radioactive after (don’t worry, not a dangerous amount for others) and it’s pretty interesting to measure yourself with a Gieger counter. And if the treatment area is near your optical nerve, they can trigger it, which results in a faint blue lightning show that you can see with your eyes closed (amazingly beautiful to see!).
– Enjoy learning from data produced from clinical scans and research studies. For instance, watching your skull heal over time, see how your mental capacity is changing over time (perhaps even getting better than before!). Try out sites like Open Humans if curious about sharing data and using applications to explore your data.
– Have the best excuse for forgetting people’s names.
– For brain tumors, surgery is likely the most important variable. Get multiple opinions before making decisions on a surgeon/treatment route, and ideally at different hospitals/institutions. Even if you like the surgeon, always get multiple opinions.
– Find patient communities to talk with about their experiences/treatment paths/contacts and ask for introductions to experts/doctors they recommend. Often hospitals have patient groups that meet every month or more, and lots of online sources like PatientsLikeMe and Facebook groups (I noticed you covered this topic in your previous post, which was also great to read!)
– Ask about clinical trails before surgery to see if any are interesting treatment routes or if any need data pre-surgery. Check https://clinicaltrials.gov
– Before surgery, ask about potential routes for removed tumor tissue in terms of trying to grow the tumor (either in a culture dish or in mice). This can be used for testing treatments on your tumor tissue if it grows.
– Ask the doctor what they would do if in your situation. Ask for reasons why – the downsides and the benefits.
– If you have time, look at completing various research studies. It can help science, and often you can collect the data and participate again post-surgery to compare (which can potentially help you as well, though don’t participate with that expectation). Things like MRI spectroscopy scans, psychological assessment/testing, FMRI scans, etc. Ask your doctor about research studies.
– Ask for your clinical data, even if you don’t use it or even look at it. Best to have it on CDs or other formats in case you switch hospitals or want to explore it yourself.
– When participating in either research studies or clinical trials, have an advocate with you to help read through the paperwork carefully in order to understand risks. Often you can also look to online patient communities and see if others are participating or any early results. Check to see if you can access the data produced in a research study if you participate, and if you aren’t allowed, ask if it could be made available to you.
– Check out some of the recent research papers related to your tumor type. Use Google Scholar to search or find a website that summarizes research/findings for specific conditions. Often doctors/nurses or patient groups can recommend some. For me, http://www.astrocytomaoptions.com was amazing helpful. Ask your supporters if they can help look into this for you.