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What have your experiences been like dealing with the medical community?

Patty Day

From doctors and nurses to hospital administrators, insurance companies, and even pharmacies... many of our community members have shared stories of frustration and the need to advocate for themselves with the "medical establishment."

What has your experience been? What advice would you give to others who are navigating this difficult system?

CommunityMemberfa1e28 Member
No, fortunately I have Medicare and ChampVA. They pay $90,000 a month for my treatment and the cancer center pays my co-pay of $2,700. I usually don't have a co-pay but chemo pills are $50,000 alone.
1. Steph Millett Moderator & Contributor
  the cost of medication is a steep one, indeed. I’m happy to hear you have some support with your healthcare.
  -Steph (team member)
CommunityMemberfa1e28 Member
The Stevenson Cancer in OK is wonderful. So is the pharmacy. I take 400 mg. of Kisqali with no side effects. I am 79, 3 time breast cancer survivor. Remission 1 year.
1. Steph Millett Moderator & Contributor
  yay to remission!!!
  
  Happy to hear you have support as well, friend.
  -Steph (team member)
JMil Member
My Oncologist & oncology PA have both refused to go over my scans in detail with me. They said, “I wouldn’t understand them.” The discussion went on, me trying to stay controlled, until I gave up.
My son, caregiver, was with me and agreed that they had both gaslighted me.
(BTW….at this point, he generally does not speak up unless I ask him to.)

My PCP said that if I could obtain copies, she would go over everything with me.
Such a difference in arrogance and great bedside manner!
1. Steph Millett Moderator & Contributor
  YIKES friend. Big yikes. If you have the brain space, and the capacity to do so, change oncologists. That doctor is not there to support nor help you. It should be a teamwork situation, not like that. I’m so sorry you had to deal with that. Thank goodness for your angel PCP to help out!
  -Steph (team member)
2. Patty Day Community Admin
  I am sure this is a terrible situation to find yourself in, and I am glad you have your son and what sounds like a terrific PCP. I'm sharing an article about medical gaslighting and how to advocate for yourself should it be helpful to you or anyone else reading these comments (https://advancedbreastcancer.net/clinical/medical-gaslighting-self-advocacy). Warmly, Patty, Team Member