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No response to PET scan doctor won’t respond
I have a spiculated module in my right upper lung lobe that was found on a recent CT scan done because of a chronic cough. PCP then ordered Brain to mid thigh PET scan and made urgent referral to Interventional Pulmonologist. Pulmonologist office called immediately and scheduled an appointment with him immediately following the scan because they wanted to do a biopsy ASAP.
Had scan. Did video visit with Pulmonologist who wasn’t sure about reactivity of nodule and decided to wait for Radiology report. He contacted radiology to expedite preparation of report so he could determine treatment and decide on proceeding with a biopsy. All good care and I was pleased with his urgency. He told me that we would connect when report was received.
Report came in four days ago and while nodule didn’t react to a measurable degree, pectoral, chest and groin lymph nodes were enlarged and SUV reactive. Lymph node near hip read 10. Radiologist thought either metastatic activity or lymphoma and recommended lymph node biopsy.
My PCP forwarded report to pulmonologist to bring it to his attention and I sent a message asking for a follow up to discuss the results. Hospital has a policy that messages receive a response within two days. I wait. No response to me or PCP after three days. I know I may not speak with him immediately but was hoping to schedule a time for a conversation. I got no response at all. Not even an acknowledgment of my request.
Now I will call the office to see if I can get a consult but they tend to be condescending and when I checked in last week on status of report I was told to be patient “sweetie.”
I will call Pulmonologist to try to arrange a consultation but am concerned because they told me when original appointment was scheduled that their normal waiting period for appointments was 8 weeks. The reason why I got in sooner was because the nurse worked hard to get me in quickly and because of the situation told me I couldn’t wait. Without that intervention it could be months before I get an appointment to get an interpretation of the scan.
I am very concerned that I cannot get any information or a timely treatment plan. Metastasis shouldn’t be treated lightly or receive a delayed response.
What can I do to get a response or information? Care is given by nationally known research and teaching hospital but there is a bigger institution two hours away. Should I travel to seek a second opinion which will really be a first opinion? I have asked my PCP to make urgent referral to oncology to follow up on lymph nodes while we await a response from the pulmonologist. Any other recommendations? Waiting 8 weeks seems unwise. Thank you. 🙏🏾
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Your hospital should have a patient advocate on staff. Take a complaint to them also contact the CEOs office and complain.
In the past, I went into the office and sat directly across from the receptionist so she couldn't look up without seeing me. It got them moving on a referral.
Another route might be to find the cancer patient nurse navigator and state your case.
In the meantime, do start the second opinion process. If you like the doctor you meet you can fire the current one.
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3 ReactionsHang in there and keep advocating…these delays are medically indefensible…another doc ??
@cakid, I'm so sorry to hear that you're going through this. Some types of lung cancer grow more slowly than others, so you may not be in much danger. But, as an eight year survivor who has been to four different hospitals, I have never had to wait 8 weeks for a response.
In your position I would try two things. First I would your local hospital and make an appointment with an oncologist, a cancer specialist. While pulmonologists obviously need to know about lung cancer, and likely routinely see it, they also have to stay up on on all kinds of other lung diseases. Besides, yours is unresponsive. The second thing I would do is to make an appointment with an oncologist at the hospital two hours away particularly if it is a national cancer center. While it would be a first appointment, your local hospital should be able to transfer your records to the other one so they would not be starting from scratch.
Finally, welcome to the club that no one wants to join! You're not alone. Let us know what you decide and what happens moving forward. Good luck and good health.