Wife Just Diagnosed w/ ES SCLC - What Can We Expect?

First of all we want to thank everyone for their positive comments and support!! We plan on using this forum as my/our diary of experiences on our journey in hopes that someday another confused and/or scared individual can see what has happened to someone else and the progression of the disease and treatment. I will try to provide updates as they become available......

Based on reading other's experience, I decided to be my wife's advocate in all matters and did not wait for information to come to me. Rather I contacted everyone we expected to hear from today, as soon as I could reach them. I called Mayo-JAX appt center at 7:01 AM, our local doctor as soon as they opened and followed through getting the contact information for each referral and contacting these offices before they had a chance to contact me. I feel certain that this helped move some things along, as compared to waiting for each office to let us know when they could see us.

We were able to contact the Mayo Appt Center this morning and completed our registration. I was informed that an actual appoint could not be made until my wife had biopsy results - so that the correct and necessary Mayo team could be assembled for the appointment.

We made contact with a local Oncologist and have our first appt this Wednesday. We expect to get a date for her biopsy during our appointment. She will also be seeing her Cardiologist (previously scheduled) on Wednesday. The Cardiologist was been informed of her cancer diagnosis and fluid around the heart sac.

We also got her PET-CT scan scheduled for this Thursday locally.

I think that we are starting to get some direction and can only hope that corrective actions continue to move along at a steady, if not rapid pace in the right direction. We will not really know anything new until late this week.

@rlogan- You deserve a medal for a new patient advocate of 2022! My husband helped me by keeping notes and explaining things to me as he has a science background. What a lucky lady your wife is! 😇

I also want to thank you for being very specific in what you have done so far. One of the reasons that it is so important is that it's hard to figure out what to do and you have listed each thing perfectly.

I look forward to hearing from you soon and hope that your wife is comfortable. How is she doing? How are you doing?

Merry, you really deserve Mentor of the Year and possibly decade. I saw you respond to so many others in this forum. You are always so positive and helpful. You are the main reason I started this thread, hoping that you would be able to provide some of your insight and experience!

She is doing amazing well, considering the news on Friday. She was pretty down over the weekend, not knowing and not being able to do anything really positive. Now that we have some direction she is in much better shape emotionally, eating better and her back is not bothering her as much. Hoping the Oncologist will be able to expedite the biopsy so we can know which direction we need to go with Mayo.

Merry, you really deserve Mentor of the Year and possibly decade. I saw you respond to so many others in this forum. You are always so positive and helpful. You are the main reason I started this thread, hoping that you would be able to provide some of your insight and experience!

She is doing amazing well, considering the news on Friday. She was pretty down over the weekend, not knowing and not being able to do anything really positive. Now that we have some direction she is in much better shape emotionally, eating better and her back is not bothering her as much. Hoping the Oncologist will be able to expedite the biopsy so we can know which direction we need to go with Mayo.

I found being proactive, pushy and sometimes a bit (who me?) bitchy 1. got results and 2. Made me feel I was in charge. Let us know how the PET scan goes.....we are rooting for you both.

AGREED. Very important to be proactive. Do not let things fall between the cracks!

It is extremely important to advocate for yourself, if possible. It's also very important to have someone else with you if you can't.

Logan- Mentor of the Year? What a way to start the day for me! Thank you so kindly, Logan. You have touched my heart.

What is your wife's name? Would she like to talk with me by PM (private message)? Do you think that her back pain is from lung cancer or from something else? Where on her back is her pain?

Merry - Based on the speed in which this has progressed (4 months from nothing to this) and multiple locations of malignancy. Of course all we have is a single CT scan and until they can do further tests we will not know for sure.

Today we were able to talk with a friend who lives close by and is currently undergoing treatment at Mayo - JAX for colon cancer which had metastasized to his lung. He & his wife were able to talk us thorough their first visit experience and continuing returns for his maintenance visits over the past year. They both have high praise for Mayo's staff and also believe that Mayo gives them the best long-term chances for quality of life.

Merry, I spoke with Liz and she is okay with me using her name in this forum. (btw.. I am Bob) She also reads this thread and I will leave the PM stuff up to her..... She has had chronic back problems for many years. The cancer may be weakening her bones and making it worse, we just do not know yet.

We had a disappointing and frustrating day today. I am sure that there will be more in our future, but I hate them all the same.

The disappointment came early during our initial consultation visit with the local Oncologist. We arrived early as is our habit to complete paperwork. Our appt time was 10:15 a.m. and at 10:45 a.m. I asked the front desk when we could expect to see the doctor. A nurse apologized and promptly escorted us into an examining room. After another 20+ minute wait the Dr. showed up and we began. This is a real pet peeve with me and I have walked out without seeing a doctor/dentist/etc. when the wait is this excessive. I believe that our time is as valuable as anyone else's. If I am running late I let the person(s) I am supposed to meet know of my delay. To the Oncologist - Strike One.....

On a more positive note, the Oncologist informed us that he has seen Non-Small Cell Lung Cancer (NSCLC) spread this rapidly and we will not know until after the biopsy. We are hoping for an appt for the biopsy next week, but this may now be delayed due to circumstances I describe next...

The frustration came later in the day when the Diagnostic center informed Liz that her P.E.T. scan for tomorrow afternoon was being canceled because they had not received approval from our insurance company yet. I called our insurance company and they informed me that they had not received the approval request until 10:00 am this morning. It seems that when our local doctor made the referral last Friday afternoon and then I made the actual appointment Monday morning, the Diagnostic center did not seek approval from the insurance until this morning. They sent the request at 10:00 am and stated that they expected an answer by 1:00 pm from the insurance company. My insurance company (BCBS) told them that the request was under consideration and that the normal processing time was 72 hours (3 days!!) The real tragedy in this is I knew last Friday that pre-approval would be required for the P.E.T. scan and I could have told our doctor to file the request last Friday, if I had known approval was not going to be sought until the day before the test and it was going to take 72 hours to approve.

Through a fluke of circumstances during my calling everyone I could contact, I spoke to the P.E.T. scan technician at the Diagnostics center and he told me Liz was still in the "queue" and that once approval was received, Liz would fill the next available slot. Unfortunately, this will not be before next Tuesday. I will be calling every day to see if approval had been received and if so, to ensure that Liz gets the first open slot. AAAARRRRGGGGG!!!!!

So, over a week will pass without any concrete corrective measures taken. I may be taking this too seriously when considered over the long haul by more experienced individuals, but since nothing else corrective will happen until results of the P.E.T. scan are available, this seems like a really big blow at this stage.

The lesson I learned from this is to make sure that ANY potential delay I am aware of is voiced ASAP to anyone who will listen.