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

This is a tough situation and seems to only be getting more difficult to maneuver. I would start working on the approval for Biopsy as soon as you know who the doctor is, because the truth is that corrective measures won’t start until the biopsy results are back. The delays in getting treatment can be very frustrating.
Try to be patient with the doctors, and nurses, they are all having staffing issues now. Also it makes it easier, when you ask them to help you get things pre-approved in time. You know, the grumpy people are less likely to get favors. I have always felt this was a problem, but I know over the last year things it has gotten harder and harder for clinics to stay on schedule.
I am praying that you will be able to navigate this and get the best treatments going as soon as is possible, for whatever type of cancer your wife has.
Did your oncologist tell you what type of doctor would be doing the biopsy? Did you get the referral for that yet, or do you have to wait for the PET ?

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.

Good morning Bob- I can certainly understand your angst concerning being in a queue for testing and for all the delays that are taking place all over the medical field. They have suffered by losing a lot of people to COVID 19 and are very short-staffed everywhere. All of us have to bite our tongues and sometimes wait. I have found that most people are trying their best and that applying more pressure can work against you and create a more tense situation with them.

When this happens to me it's my husband who has to calm me down and says that everyone wants to be first in line. It's a hard lesson for me to accept. The health care department is a foreign country all within itself!! You will find that cancer is a "hurry up and wait game" exacerbated by COVID 19. You are literally at the mercy of so many different departments that it's dizzying.

This is also such a delicate time for you and Liz and your family. It's a time to make sure that you take care and stay healthy. If Liz is well enough, get out and do something that she loves to do. Hopefully, you have all had vaccinations and at least Liz should wear a mask when out and about.

I wish that I could tell you that the delay isn't a blow but a crimp in the cancer process but I don't think that you will believe me. I was my mother's caretaker and in order to handle everything I had to take some time for myself by taking a bit of a walk all by myself. Not knowing what your home situation is like I hope that this is possible for you. I know that it might sound selfish to do but you will be better off with a bit of a break. What do you think?

Merry, all is good at home. Liz & I have already gotten past the bumps of the last few days and we are looking forward to having our daughters visit this weekend. I am able to work from home when needed and will be back in the office Friday & Monday while the girls are here.

Our visit with the Cardiologist today began with an EKG and showed that her heart is in good shape. There was very minor fluid built up around the heart showing on the ultrasound. As a reference, the normal amount of fluid is <20, hers is at 22 and actionable levels requiring draining the fluid is >30. She will get a follow up ultrasound in about 10 days to ensure that the fluid is not increasing. So her shortness of breath is probably due to reduced lung function from COPD &/or cancer.

We are still waiting on approval for her P.E.T. scan from the insurance company. If we actually get it tomorrow, there is a good chance that she will get the P.E.T. scan next Tuesday or Wednesday. She has a brain MRI scheduled for next Tuesday to ensure that the cancer has not spread there also.

That's about it for this week.... Have a good weekend everyone!!

Bob- This is so good to hear. Right now it's sleeting and hailing on top of the snow. Please extend my best to Liz.

So far the week has gone as expected. Liz received a brain MRI yesterday and P.E.T. scan today. We have our next appointment with the Oncologist Friday morning and should get MRI/PET results then. Meeting with Dr. who will performing biopsy next Tuesday and he will determine what will be biopsied based on PET results. We are hoping biopsy will be complete by end of next week so that we can get a treatment plan determined....

Is 3-4 weeks from diagnosis to start of treatment about average?

On a brighter note, all of our daughters spent the last few days with us and Liz was ecstatic with their being here.

So far the week has gone as expected. Liz received a brain MRI yesterday and P.E.T. scan today. We have our next appointment with the Oncologist Friday morning and should get MRI/PET results then. Meeting with Dr. who will performing biopsy next Tuesday and he will determine what will be biopsied based on PET results. We are hoping biopsy will be complete by end of next week so that we can get a treatment plan determined....

Is 3-4 weeks from diagnosis to start of treatment about average?

On a brighter note, all of our daughters spent the last few days with us and Liz was ecstatic with their being here.

Good morning- I am happy to hear that your daughters were with you for the weekend. It sounds as if things are moving right along with all of the tests that she has had. Your time frame is going along nicely. I hope that Liz isn't too tired from them, they can be exhausting.

Good luck with your appointment Tuesday! Fingers are crossed! Do you live near the hospital for these appointments?