Making Tough Medical Decisions

Along the way there have been several tough decisions I’ve been faced with. These aren’t your usual decisions; they take thought, energy, and careful consideration.

The first bigger decision I had to make back in January was how much I wanted to pursue my concerns. My primary doctor was not concerned after meeting with me and suggested it may be symptoms of my anxiety. I decided to continue pursuing it for my own peace of mind and was referred to a neurologist. After much testing, the decision became: Do I undergo brain surgery so they can biopsy my brain tissue, or do I wait this out and monitor it every couple of months for changes? Again, I kept pursuing answers instead of just waiting for things to get worse.

Another bigger decision I had to make was when to start my treatments. Ideally I would begin treatments ASAP, however I had a couple big trips planned in July/August that I would have had to miss. After discussing with my treatment team and hearing that it was relatively low risk to delay treatments, I decided to delay treatments and go on my summer trips.

As someone who is very indecisive I think it’s important to share how I have come to make these decisions, because I’m honestly proud I’ve been able to grow in that area. For the sake of this post, I’ll use the radiation decision I was facing to walk through what that process was for me.

Understanding the Concern

First and foremost I wanted to make sure I understood the decision at hand. Before consulting with radiologists, I had a detailed conversation with my neuro-oncologist to make sure I understood the different factors to this decision. I came to understand that my decision was this: Will I stay with my team at Abbott for conventional radiation treatments or will I transfer care to the Mayo and undergo proton beam radiation? At that time my neuro-oncologist had thought proton beam radiation may be more ideal in my case since I’m young and proton beam radiation may not come with the long term effects after treatment.

Going with the Mayo would obviously be far more disruptive to my life – I would only be able to come home on the weekends since treatments were M-F every week. I wouldn’t be able to see my cats much or be in the comfort of my own bed each night. I also assumed the Mayo would be far more expensive since it’s a newer form of radiation treatment. But I knew I could do it if I had to – if proton radiation was truly more beneficial for me I could make it work.

Research

I typically try to avoid the internet for anything medical related. This is because we often end up scaring ourselves into thinking the problem is much larger than it may actually be. When it comes to making a medical decision for yourself though, I do cautiously hit the internet. I primarily look for case studies. If not an actual case study, then I make sure my sources are ‘.org’ instead of ‘.com’.

Having reliable resources is important and will cut down on misinformation or inconsistent information. Doing thorough research helps you to be prepared for consultation with the doctors and leads you to the proper question to ask. For example, after reading a case study I learned that I should ask each doctor about the risk of secondary cancers for each type of radiation.

I prepared a list of questions and concerns, and scheduled consultations with 2 different radiologists.

Consultations

My neuro-oncologist referred me for 2 consultations with radiologists so I could learn more about each type of radiation treatment. I was prepared with lists of questions. The research helped me to know what questions to ask.

First I learned about photon-beam radiation, or conventional radiation, at Abbott. The photon beams are able to target the lesions but are not able to completely protect the healthy tissue along it’s path. These are still very precise treatments and they make sure the lesions receive the highest amount of radiation. They have determined that the amount of radiation received by the healthy tissue is not enough to be dangerous. The healthy tissue will be able to repair itself within 24 hours.

Proton-beam radiation is a relatively newer treatment offered at the Mayo. The primary difference is that this type of treatment utilizes proton beams vs photon beams. This treatment is more targeted to the treatment areas. It is able to deliver 100% of the radiation dosage to the exact location of the lesions and little-to-no radiation to the surrounding tissue.

Because my lesions are multi-focal, both radiologists concluded that in my particular case proton beam radiation yielded no significant benefit for me as compared to conventional radiation. I actually was not too worried about the idea that more healthy tissue may receive small dosages of radiation. We know that there are microscopic cancer cells floating around among the healthy tissue in my brain that we cannot see. My thought process was that more overspray of radiation to healthy tissue may increase the amount of microscopic cancer cells we were damaging. I also learned that the risk of long term cognitive effects from conventional radiation was low.

Follow your Intuition

It’s great to seek information and be informed. Once you have all the puzzle pieces though, for me it really comes down to listening to my gut. I understood the pros and cons of each type of radiation treatment. I understood what my daily life would look like undergoing each type of treatment. By this time I knew what direction I wanted to go. I decided to choose the less disruptive route and stick with Abbott. Setting aside the research and information and consultations and tuning into myself, it became clear that my intuition was guiding me. Weighing the pros and cons can be helpful and important, but ultimately just listen to your instincts. They will always be pushing for one direction over the other, you just have to listen carefully!

Some other things I’ve found helpful:

❥ Making a pro/con list – it sounds basic, but certain things may become evident as you write everything out and see it in front of you.

❥ Talking with loved ones – talking it out with those you trust can not only be a relief, but it can also make things more clear. It also gives your loved ones a chance to share their perspective and advice.

❥ Sleep on it – there are times where it’s best to just put all the information down and take a beat. Relax, sleep, practice self care, do an activity – then come back to it after you get some clarity.

Understand the concern, research, consult, and follow your intuition. Learn how to tune into yourself and follow your instincts. Once I landed on this process I felt equipped to manage these decisions.

♡ Hailey

A woman in touch with her intuition is a formidable force.

-Yvonne J Douglas

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