Read on to see how we've been a boon to young adults fighting cancer!

Young Adult Cancer Issues

Blair Grass is a Registered Nurse, wife and mother. She has been working in the medical field in Charleston since 2006 and has both a Bachelors and Masters in Nursing. The majority of her nursing career has been in Oncology, with experience as a Breast Cancer Navigator, infusion nurse and most recently working in Oncology data analysis and research. For Blair, working with the Boon Project is a great way to connect with young adult cancer patients and help facilitate education about the cancer journey.

Second Opinions, Second Guessing?

Contributed by: Blair Grass, RN, MSN - Boon Project Clinical Guide

Opinion

noun  opin·ion  \ ə-ˈpin-yən \

1a : a view, judgment, or appraisal formed in the mind about a particular matter

3a:  a formal expression of judgment or advice by an expert

From: https://www.merriam-webster.com/dictionary/opinion?pronunciation&lang=en_us&dir=o&file=opinio01

We live in a fast paced world. We shop online, constantly multitask, and we are often presented with multiple options at once.  We don’t buy the first car we look at and we negotiate nearly everything. But when it comes to healthcare it often seems like there is very little wiggle room for negotiating. Medical opinions are often perceived as physician/provider directives with no room for patient input. This simply just isn’t the case. You have a voice, never forget that!

Without much experience with medical care and the system, young adult cancer patients may find themselves lost in foreign territory. Hearing “You Have Cancer” are three of the most terrifying words you may ever hear and they set into motion a battery of tests, surgeries and additional treatments that can seem never ending and emotionally paralyzing.

I’d like to break down second opinions and make them seem less daunting. A second opinion does not mean you are second guessing your provider OR yourself! A second opinion is a wonderful opportunity to ensure that you are fully informed about your diagnosis, treatment options and possible outcomes, and your prognosis. This is crucial, knowledge is power and being informed is part of your armor. There often isn’t just one way to treat cancer and the number of options offered can be overwhelming. A second opinion could just help you understand it better coming from another point of view. Please do not worry about offending your physician - second opinions in oncology are very common.

How to know where to go for a second opinion:

• Ask your current oncology doctor (Medical Oncologist, Surgeon, Radiation Oncologist) - Yes this is acceptable!
• Contact your Primary Care provider and ask for recommendations.
• Your Insurance provider can provide you with a list of providers.
• Consider a provider associated with an Academic or Research facility: boonproject.org/research-hospitals
• Online Resources: boonproject.org/programs-organizations

The bottom line is, this is YOUR life, and YOUR decision. The first step in overcoming the fear about second opinions is realizing that doctors are offering you suggestions for the plan of care. Just like you have a unique point of view and life experience - your doctor will have a unique aspect that they bring to your care. A second opinion could bring up a new perspective to your care or a different clinical trial. It is NEVER too late for a second (or third.. Or whatever number it takes to provide you with knowledge and confidence you need) opinion - in fact you may find them helpful not only at the beginning of your cancer journey but throughout as well.

Upcoming Events & Opportunities

In the spring of 2016, Andy was a full-time student nearing graduation and stay at home dad to our two-year-old daughter Lochleigh (LC). I was four months pregnant with our son Audie, and working full time. Andy had a questionable mole removed the last week of April (He’s a veteran and noticed the mole after his deployment). The results were in - melanoma stage 2A. A quick Google search revealed phrases you never want to read ‘one of the deadliest cancers’, ‘highly aggressive’, the list continues, and our minds swirled.  I couldn’t wrap my mind around all of this. Hearing your husband has cancer isn’t something you expect when you are 28 and pregnant. Katherine and Susan reached out as soon as they saw what we were going through, providing advice and a listening ear from the perspectives of patient and caregiver.  We didn’t think Andy’s cancer would come back. But within 6 months of his diagnosis and first surgery, we received a call New Year’s Eve - the cancer had returned.

Cue the Boon Project! We were inundated with support, resources, and guidance on everything from nutrition and caregiving (the Cancer Fighting Kitchen cookbook found in Boon Bags!), to insurance approvals, doctors’ appointments, and setting up meetings with an expert team at Memorial Sloan Kettering in New York. During scans, they check in on us and let us know they are praying. They give us reassurance on the news we hear at each appointment. Andy has had 4 surgeries, neo-adjuvant therapies, and his latest treatment is immunotherapy. Before Andy’s first infusion, Katherine talked to me for an hour to answer questions and share about her experiences, caregiver to caregiver.  She was a calming reassurance that we were on the right track.

Young adult cancer poses many challenges. Andy has been unable to work for over a year now. We can’t plan anything further than a week’s time as our dynamic is everchanging (I’m a planner and this has been very hard to manage). When Andy has a good day, we may be able to get out like normal for a few hours with friends. When he has a difficult day, he may not be able to get out of bed at all. These dramatic highs and lows add to the stress of uncertainty as I must work, and we still have two little humans that depend on us for everything. It’s hard enough having a baby and a toddler, add cancer on top of that with depression, anxiety, and some days can be unbearable. The psychological struggles in dealing with this diagnosis is another area where Boon has helped us. Katherine provided me information about the Ulman Cancer Fund (a nonprofit local to our area in Maryland) and encouraged me to consider their programs for counseling and support groups. Additionally, knowing I can reach out to Katherine, who completely understands what we are going through, makes this storm easier to endure.

I am so proud of the Boon Project and their mission to Fight and Take Flight!