Introduction

[Rurumc]

Hi, everyone! I was diagnosed with NSCLC w mets to skeletal system in July 2020. Had 4 sessions of Carbo/Alimta/Keytruda. Have been on Keytruda only since Nov. 2020. I am feeling good, in stable condition according to my oncologist. My biomarker testing revealed I have the Her+2 mutation w a PDL1 protein>80% which makes me a good candidate for immunotherapy. Had a scan Monday two weeks ago that scared me. It showed inflammation of my tumor and lymph node. Oncologist is a lousy communicator and I was stressed and depressed for a solid week until I went in Tuesday for an infusion. He told me my Covid vaccine had caused the inflammation. I told him he could have told me that. I asked him to be more approachable and available to talk to and he said he had a system and wasn't changing it. He knew I was very unhappy when I left his office. He spoke to the practice manager about me and she called on Wednesday. The gist of which I am uncertain. He got huffy when I went to Duke in Dec 2020 for a second opinion. When I couldn't get answers out of him last week I reached out to Duke again and they set me up with an appointment and ordered MRI and Pet scan. The practice manager said he has an issue with the 2 doc scenario. The hospital here in town has been working with me to pay for treatment so I don't know if Duke can do the same unless they are non-profit. I will be 62 in June. I lost my youngest sister, 54, unexpectedly three weeks ago. The stress of all these issues is hard to distance myself from. I'm having a hard time finding simple pleasures and I'm embarrassed to admit it. I am also adding stress to the life of my remaining sister and niece(s) and need to lighten up so they will quit worrying about me. Thanks for letting me rant!

[LexieCat]

Hey, Ruth, glad you found your way over here.

I never want to look at my scan reports till the doc is able to explain them to me--that's to avoid the kind of stress you experienced. Your oncologist sounds like kind of a jerk, though. 

If I were you, I'd call Duke and see what financial arrangements can be made. There is usually a social worker who can help with that stuff. I've had two partners who had serious health problems (cancer, heart attack/bypass, and liver failure), all of which was covered under the hospital's "charity care" (neither one of these guys had health insurance).

One other thing to consider--Stage IV lung cancer patients are automatically eligible for  Social Security Disability. After you've been disabled for 2 years, you are automatically eligible for Medicare, even if you are under 65. 

And feel free to rant away--it's one of the things we are here for!

[Judy M2]

Welcome, Rurumc. I think your rant is well-deserved on a couple of fronts. First, you should never be made to feel bad for seeking a second opinion. It's your right as a patient facing a serious disease. Second, doctors at this point are well aware of the inflammation caused by recent Covid vaccination, and he should have explained that to you when he discussed your scan report. BTW, I agree with LexieCat about not reading scan reports on your own. 

One part of treatment success is the relationship with your oncologist. My oncologist has written a book on compassion in medicine ("Love is the Strongest Medicine") and I'm trying to get him scheduled for a Friday Zoom session. We have several members who have had poor experiences with their oncologists' communication styles, and I think he could inject some positivity and hope where it's really needed. 

Your stress at this time is understandable, especially with the recent loss of your sister. My condolences to you and your family.

[LUNGevityKristin]

You should definitely feel comfortable with your medical team and it is always possible to make a change.  How was your local hospital helping financially?  Duke may offer financial assistance or you can call the Lung Cancer HELP Line for resources: https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline

 

[LexieCat]

Check out the info on this page--it's Duke's financial assistance page: https://www.dukehealth.org/paying-for-care/financial-assistance

 

[TJM]

Welcome. Glad that the inflammation has a cause other than cancer. How long before you got your scan after getting the jab? I have a scan on June 1st and got my second dose in early May. I really don't want to go thru what you just did if it can be avoided.

I feel your angst about not clicking with your oncologist. I also have not bonded with mine. I usually feel like I'm talking to a mechanic about my car when we meet. If I do get a reoccurrence I will probably ask to switch. Considering changing providers next open enrollment.

Wishing you the best

Peace

Tom

[Susan Cornett]

Hello and welcome. I'm going to tell you what you already know - your oncologist is a jerk. You should be able to have frank conversations with him/her. You should also have an oncologist who isn't threatened by you seeking a second opinion. I hope that you are able to resolve this soon. It's added stress that you don't need right now.

Keep us posted.