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

I'm sorry your wife is ill. Securing an appointment at Mayo is absolutely the best thing you can do for your wife. Last year I was diagnosed with stage four NSCLC and have been under the care of Mayo, Rochester. The depth of diagnostic tests, medical staff and course of action has been outstanding. I believe I would not be alive today if I had not received care at the Mayo Clinic. The best to you and your wife.

I was diagnosed NSCLC stage IV nearly two years ago, and I’m doing quite well. The diagnosis is always shocking. It sounds like you are taking the right steps to get the help that you both need. There will be scans; the PET and likely a brain MRI if they haven’t done one yet. From there everyone’s story and options are a bit different. They may want to do a biopsy to confirm the type of cancer. Mine came from the liver (easier to get to than the lung) and wasn’t a difficult procedure for me at all. I also had a biomarker blood test that looked at the gene make up of the cells that are shed from the tumors. The results of those tests will likely drive treatment options.
Wishing you good options in the coming days, it’s not easy, take care.

@rlogan - Welcome to Mayo Clinic Connect. This just has to have been devastating news to hear especially after an X-ray not picking anything up. I am very sorry to hear that your wife has this hard journey ahead of her.

What you can expect in the next few weeks, is that there are a lot of tests! Even if you do not get an immediate appointment with Mayo Clinic be sure to follow up and get the PET-CT done-

Here is what a PET-CT guided scan is about:

Positron emission tomography (PET) uses small amounts of radioactive materials called radiotracers or radiopharmaceuticals, a special camera, and a computer to evaluate organ and tissue functions. By identifying changes at the cellular level, PET may detect the early onset of disease before other imaging tests can. (https://www.radiologyinfo.org/en/info/pet)

The PET radioactive material will light up areas that are hot (inflamed). However, it will not tell what is causing the inflammation. Usually, a biopsy or other test is done to not only show that there is cancer but stage it and name it.

This time is extremely important for you to take one step at a time when things seem to be rushing by you at warp speed.
Concentrate on one appointment at a time. Write down all of your questions and make sure that they are answered. You have the right to know what is going on and to have your questions answered. My first lung cancer was in 1997 and one of the questions that I asked was, "what other questions should I be asking at this point, or what am I missing?"

One other thing that is important: Keep all test results and make sure that you have copies of them. Your wife might want to start a journal to help her express and vent some of her feelings.

Please feel free to ask any questions that you might have.

Why are you surmising that this is likely Extensive Stage Small Cell Lung Cancer?

Merry

I agree with @merpreb , my brother was diagnosed with extensive stage SCLC almost two years ago. He had PET CT, and then, the actual type of lung cancer was decided with a biopsy. He is on his third type of treatment and has had a decent quality of life for all of them. Not always easy, but very do able. Be sure to get all testing as fast as you can. All of that information can go with you to Mayo.
Is she scheduled for a PET yet? Biopsy?

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.

Chris, we only learned of the diagnosis Friday afternoon. A PET scan was ordered by our family doctor, but not scheduled and biopsy not even addressed yet. I will be calling the Mayo-JAX Appt center Monday am to double-check on the online appt request I filled out Friday afternoon and I will also be asking our family doctor to refer this to Mayo-JAX for treatment.

Before I joined Connect I had never talked to or met anyone with my unusual lung cancer. I still haven't met anyone with it so you are lucky to have this special chance. I am not a patient at Mayo because there are none in New England. I go to Mass General. Going to a large teaching hospital affords the best quality team care. I am in my 25th year of lung cancer and am being treated with palliative care by the best people for me.

I can certainly attest that quality of life is the star for many many people who have cancer. It takes the horror and misunderstandings of cancer away. At 75 years old I think of my cancer as chronic. So my mindset is more positive and I can look forward, no matter the time frame.

I hope that you will continue to keep us informed. I will check in in a few days to see how you are. Ok?

Merry

I don't know where you live but get even a local oncologist to schedule your wife for a PET scan if troubles getting into Mayo or another cancer facility a problem. Very important to have genetic testing for possible qualifying for a targeted therapy. I myself am a patient at Moffitt and been on a targeted drug for 5 years and so far kept the beast at bay.
I think there may be a blood test for biomarkers but if not have biopsy tissue sent to a genetic specific laboratory.

Early on, it really helped me to try to focus on ‘What do I know TODAY, and what can I act on today?’. This helped to keep some of the what-ifs at bay. Many lung cancer patients see fast progression in the beginning, but that doesn’t always mean the worst case scenario.

Mid February of 2020, I was blissfully biking around south Florida on vacation with very minor symptoms, by mid March I had a cancer diagnosis, and by mid April I could hardly walk around the block. I’m doing great now.
Wishing you and your wife well, hoping that Mayo can see you soon! Keep us posted.

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.