Wednesday, April 20, 2011

Building Your GREAT Cancer Team - by Heidi

When I was first diagnosed with metastases from my breast cancer, we went to visit some neighbors. They had both been diagnosed with cancers over the few years before and we asked them some questions about how to deal with cancer. I will never forget the wife's vehement response. "Remember that YOU are in charge. If you dont feel comfortable with a healthcare team member, fire them... get another. Build your team based on what YOU think you need." I was shocked. While I had done some elements of this six years ago at my initial diagnosis, I still had a very compliant "just tell me what to do" people pleasing attitude. Now three years of being immersed in the metastatic cancer experience, I heartily agree with everything she said.

Livestrong ( as well, has some wonderful resources and I love what they say. "If you can talk openly to your health care provider and get your questions answered, you will feel confident about the health care you are receiving." Feeling confident and secure means I have a better chance of beating this.

I have built a team that I feel really comfortable with - but it took a little while. My status now: my oncologist worries about my "state of living" as well as the state of my cancer. I have an oncologic naturopath that I consult with occasionally about new non-prescription aids to fight cancer. My oncologist does not "believe" in these, but she is supportive of my wanting to look at all possible treatments of this horrible disease, and gives rational explanations if there is a supplement she does not want me to take. My cancer center provides social work, chaplain and nutrition support for me as needed. My infusion nurse has become a valued friend and resource.

But when I was first diagnosed, I changed cancer centers because at the first one: the technician seemed really fumbly, the radiologist spoke to me like I was a child, (even after I said that I felt like she was talking down to me) they had problems finding my reports and responding to my questions; it just left me feeling nervous and like I needed to micro-manage my care. I liked the second center a lot (went back to them when my cancer metastesized) but still changed oncologists and gave feedback when things seemed more focused on their needs and less on my needs.

I am not saying to be a petulent child wanting their own way all the time. But it is MY cancer that is being treated, MY life that is being hugely affected, My finances that are going in the toilet. At the end of the day, they go home from their job. Joe and I never get a break from this, it is a 24/7 experience.

The non-medical part of my team consists of family, friends, the Body of Christ believers... all those who bless me, pray for me, support me in so many ways. Their love, care and acceptance keep me positive and hopeful.

Be bold and speak up for yourself. Trust your gut. Build YOUR team. You will be so glad you did.

And as always, thank you so much for your support!

- Heidi


  1. I couldn't agree more. It's easy for a patient to get "controlled" by the wrong healthcare person. "they're out there", is what my mom always says.

    This is really great advice. I also feel very fortunate to now have the best team for my surveilance.

    Blessings to you and Joe.

  2. THis really does have me thinking Heidi about the importance of a team in any medical fight, especially cancer. I think I have at times resisted building a team because I don't want to accept the seriousness of a situation.