Forming a Team

[RH1970]

Hi all,

I keep reading about the importance of the 'team' that forms around cancer patients at the beginning of the process.  I've read that these teams might Include Surgeons, Oncologist, Radiologists, Counselors, Coordinators, Dietitians, etc...

How and when do these teams form?  Although I haven't yet officially been diagnosed or staged, so far my only contact has been directly with the surgeon, who will be performing a biopsy this Friday.

Is this team something I need to be requesting and/or forming myself, or will the CCC (Comprehensive Cancer Center) take on this charge automatically after diagnosis.

I realize I may be getting ahead of myself, but understanding how this works would give me a bit more confidence, and I don't want to be missing a crucial step.

Thanks for any information.

-Rick

 

[Lin wilki]

In my situation at a NCI hospital I first got my oncologist. You only see them every few weeks. In the interim a PA does your appointment. A nurse coordinates appointments. When side effects of treatment become a problem oncologist sets up consult with a Palliative care nurse. Because I’m at the main teaching hospital all these services are available to me. I could also request a consult with psychiatrist, nutritionist and if needed a pulmonologist 

Once you start treatment these things fall in place  Good Luck

 

[GaryG]

Hi Rick:  Most cancer centers/clinics have a "Tumor board". That's a collection of many specialists in their own field. Tumor board meet usually once a week and examine cases and decide on a course of action. Where are you being seen and how did you meet your surgeon? A biopsy is always needed at the beginning regardless and tumor boards need the result of the biopsy to make decisions.

On the other hand, patients have the option to get second opinions from any source outside the clinic/hospital they belong.

 

[Tom Galli]

Rick,

My general practitioner picked my lung cancer team. He is a long tenured physician, well known in our community and had a good sense of who I would relate too. These included pulmonologist, thoracic surgeon, and medical oncologist. My medical oncologist referred me to a radiation oncologist shortly after my first consultation. So these were my treatment disciplines and treatment is a team sport. OBTW, if you don't like one or several, this might apply. Many here say a second opinion is always a good idea. 

I also learned that it is a good idea to have all my diagnostic scanning done at the same place. Although you'll never meet a radiologist, having the same one or the same small team involved in interpreting various diagnostic scans is very beneficial.

Stay the course.

Tom

[Judy M2]

Rick, my GP also picked my pulmonologist and radiation and medical oncologists and ENT (due to vocal cord paralysis). She also gave me a referral to a thoracic surgeon but surgery wasn't an option for me. 

[Rower Michelle]

Hi Rick, 

I learned along the way there's more to the team than meets the surface, it takes a village to fight lung cancer and there are some key players along the way you might want to think about: 

1. The pharmacist, initially I met with my pharmacist on a weekly basis, now we touch base about every two to three months.  They are great in helping to understand side effects and how to manage them. 

2. The scheduler- not every cancer center has them, but at mine we get assigned a scheduler.  These people informally run the cancer center because they have the authority to calendar appointments for labs, scans and appointments.   Get to know these folks and you will not have to wait for procedures or more importantly, results. 

3. The social worker- they have access to all the community support and financial resources.  Social workers seem to be in short supply at our cancer center where they are utilized only when there's a crisis.  You don't want to wait for this to happen.  I check in with the social worker now at least once a month.  I'm on her radar, she knows who I am.  When and if the time comes, she'll be able to respond quickly.  

4. An Integrative Medical Team:  You might want to find a board certified Integrative Medicine physician to manage the wellness aspect of your treatment.  Oncologists are really trained in the medicine and science, they aren't necessarily training in the nutrition or mind-body therapies, You can look for one trained by Andrew Weill MD at   https://integrativemedicine.arizona.edu/alumni.html

5. Depending on your financial status you may want to build out the integrative team to include an acupuncturist (sometimes covered by insurance) , message therapist and private nutritionist.  Ask the nursing staff about this.  Nurses know the community really well, often times better than the oncologist.  

Once I figured out the oncologist wasn't the be all and end off of my treatment, I got much more comfortable with his quirky personality.   

Good luck with the biopsy, keep us posted, 

Michelle