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Waiting in Limbo


kathe2024

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January 26, 2024

I never thought I would be quoting the late singer/songwriter, Tom Petty, but here it is. “The waiting is the hardest part.”

Every part of my mind and body screamed, “Don’t look at the test results in “My Chart.” Reason dictated that I wait for the doctor’s appointment and let him explain the results of my bronchoscopy /biopsy. My appointment wasn’t for another week, and the suspense was killing me. So I took the plunge.

My biopsy included three lymph nodes. As I opened the results for the first lymph node, I breathed a sigh of relief as I read “no malignant cells”.   So I was feeling pretty confident as I opened the next test result. Unfortunately, the second lymph node was squamous carcinoma cells. The final test result was more tenuous but pointed towards malignancy. I felt myself go into stun mode. I wasn’t feeling anything- just numb.  Shortly after, I attempted to get an earlier appointment with my doctor. Although I eventually did, I still had to wait several days to get any kind of information—and it was excruciating.

So how did I even get here? I have suffered from pesky kidney stones for many years. Having yet another kidney stone episode, my urologist ordered a CT scan back in November 2023. Unfortunately, not only did they find a very large stone, but also some tiny spots on my lungs and some enlarged lymph nodes on my chest. They also found some nodules on my neck, my adrenal glands, and my groin. My primary care provider immediately referred me to a pulmonologist and endocrinologist. My endocronolgist ruled out any issues. However, my pulmonologist sent me for CT chest scan so he could get a better look. After that, he was concerned enough to order a Petscan/CT. From there, he ordered a bronchoscopy/biopsy.

So here’s the timeline. Biopsy on Tuesday. Initial biopsy results a few days later on Friday that I peaked at without medical explanation and support. The doctor warned that getting results quickly was not a good thing in this situation. So Friday I look at results and get the bad news. There’s nothing I can do over the weekend except wait until Monday and try to get an earlier doctor’s appointment. The original follow up appointment was scheduled for Monday of the following week and I wasn’t going to wait 7 more days.

So, I finally got an earlier appointment with my pulmonologist for Wednesday, after several rounds with Nurse Barbara.  He broke the news that he has referred me to an oncologist because I have stage 3c lung cancer- for now. He says that I still need an MRI of my brain to make sure it hasn’t spread. He said that the referral has been made and I will be contacted soon. That was Wednesday. It’s now Friday night and I have not heard from the oncology practice.  This is a lot to absorb by itself, yet feeling like you’re being ignored by care providers.

Somehow, my husband and I survived the weekend. Since trying to make a phone call to my provider is like trying to get into Ft. Knox, I sent off another message through My Chart on Monday morning.  The squeaky wheel eventually does get the grease because I finally got a phone call from the oncology office that afternoon. I now have an appointment with an oncologist for early next week. Yay! Finally, some action. I'll take it.

So, my husband and I have decided to get a change of scenery and will go to the lake for a few days. The waiting is the hardest part.

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You don't have to wait to be contacted. I urge YOU call the oncology center (assuming that's where you were referred-- I was.) Tell them you've been referred by Dr. Pulmonology and ask for an appointment with a lung cancer specialist. Even better, go to the cancer center where Dr. Pulmonology has referred you, read  about the oncologists there, and see who the lung doctor(s) are. If there isn't a lung doctor, it would be best to find one. Lungevity can help with that.

If Dr. Pulmonology has referred you to a specific oncologist, call them directly. If they are a generalist, you can go ahead and meet with them, but lung cancer research is progressing so rapidly you really need someone who follows it.

I'd also urge you to call your pulmonologist, or contact her/him thru MyChart, to be sure s/he has sent the tissue for biomarker testing. Lungevity has info about that at https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/biomarker-testing  

It's so hard to wait. Try to breathe deeply and slowly. And please keep us posted. If you want, you may find you receive more responses if you post in the forums. 

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Waiting truly does just suck.  Not like the hurry up and wait of boot camp. More like waiting in a hospital for word on a loved ones condition. Just it's you.

They are most likely waiting on genomic testing results.  This will guide their treatment. Normally 2 to 4 weeks. Hopefully you've had an MRI by  now and are fully staged. 

Know this.  Lung cancer is not an automatic death sentence.  I was diagnosed stage IV with Mets to my liver, skin ,and brain July 2020.  The next month I developed a whole new stage 3 head and neck cancer. I've been in full remission since March 2021.   

If you read the statistics just use them as a guide to treatment. Don't trust them as a guide to life.  Trust that you can be treated.   

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