No response to PET scan doctor won’t respond

Posted by cakid @cakid, May 29 8:57am

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. 🙏🏾

Interested in more discussions like this? Go to the Lung Cancer Support Group.

denzie | @denzie | May 29 11:08am

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.

nycmusic | @nycmusic | May 30 7:10am

Hang in there and keep advocating…these delays are medically indefensible…another doc ??

Matthew K | @flusshund | May 30 10:50am

@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.

rcerwin3 | @rcerwin3 | May 30 1:29pm

I DEFINITELY would go for a second opinion.
Whereas the original hospital where I was sent from chest x-ray to CT to pulmonologist to PET then back to pulmonologist for surgical biopsy to surgeon for RLL and 29 lymph nodes removed was nationally known also. But I was told by more than one person that I should go for a second opinion. I am by nature the "questioning type"....knowledge is power to me so I knew it would benefit me to see what another set of eyes determined. The hospital I chose for second opinion was also 2.5 hours away but the moment I talked to the oncologist I made the second opinion appt with, I knew I had found my new doctor and my new facility. My frequent CT scans are SO different. Last one.....scan at 1:20; report to me at 1:44; appt with oncologist 2:30. BOOM....that is priceless. To have to wait for the "privilege" of a physician to explain to you what is going on with YOUR body.....no thanks.

mamajite | @mamajite | May 30 7:00pm

@cakid welcome to Mayo Connect. just wanted to chime in and say that your sense of urgency is well founded and your health is a time sensitive issue. I wouldn't be surprised if the pulmonologist in question is on vacation. don't wait - push to be seen asap where you can. my experience is that cancer centers can often get you in very quickly, so it might be best to start there, and also call your current hospital's oncology department directly.

Lisa, Volunteer Mentor | @lls8000 | May 30 8:30pm

Welcome @cakid, This process of diagnosis is often difficult to work through. It's stressful and rarely goes as quickly as we think it should.
The scans are only one piece of the puzzle. Another important piece is a biopsy. It sounds like the lung nodule didn't light up much in the PET scan. That's good news! I'm not a clinician, but I have had biopsies of my lymph fluid taken, once it was cancer and another time it showed a fungal infection.
Yours still could be an infection that's creating the lymph node activity. Until you have a pathology report that shows cancer, we don't know for sure, even with the radiologist's notes that mention malignancy.
You mentioned that the normal waiting period for appointments was 8 weeks. That likely includes all sorts of pulmonology appointments. Give the center a chance to make this right. Keep calling until you get what you need. In the mean time you can certainly start setting the ground work for a second opinion, especially if you are continuing to lose confidence in the pulmonology office.
Have you received a response yet? Has a follow up appointment been scheduled?

pb50 | @pb50 | May 31 11:50am

@cakid
Lisa is one of the best voices you can have in your ear on this subject. I might just add that since time matters greatly in this scenario, I might reach out to my primary care to ask for his help getting a response.. or guidance regarding any additional actionable steps available to you.

Best wishes…