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Father newly diagnosed with suspected SCLC


Aimeemiller21

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Hello all! My father had a CT scan recently with many enlarged lymph nodes. On 6/11 (2 days after his birthday) he went to have a bronch done for lymph node biopsy. They are thinking SCLC. Waiting for a PET Scan to be scheduled and the results of the biopsy to return. It's nerve wracking. He's surprisingly upbeat that's more than I can say for us but I know what good a positive attitude can do for your health.

Is anyone here from Pittsburgh, PA? we're looking for an oncologist, he didn't even see one after his bronch yesterday, which was upsetting. we want to see what his options are as fast a possible for obvious reasons. does anyone recommend any good Docs from the Pittsburgh area, and where you would go AGH or Hillman?? we need help!!! 

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Hi there, and sorry to hear about your dad’s diagnosis. I have no idea how anyone can suspect SCLC without biopsy results (unless maybe they looked at them in the lab immediately after the bronchoscopy). 

I’m not familiar with either of the hospitals you mentioned, and we really can’t give recommendations here, but if it were I, I’d try to find one that is an accredited Comprehensive Cancer Center. You can start searching here: https://www.cancer.gov

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Thank you. I will look into that website you mentioned. From what you're saying I hope they are wrong about the suspected diagnosis but he smoked for a long time. There's always a chance it's not I guess.

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Aimeemiller,

Welcome here.

The testing and waiting for results that encompasses the diagnosis phase of lung cancer is indeed maddening. Here is useful information about the tests your dad is having and what the results might mean.

The objective of diagnosis testing is to determine a type and stage of lung cancer. Once known, treatment possibilities emerge and these initial treatments collectively are called "a national standard of care." This means that almost everyone with the same type and stage of lung cancer gets the same recipe of treatment. If your dad's plan for initial treatment conforms to a national standard of care, you have options on where it is administered. If the comprehensive cancer center is convenient, then by all means use it. But, if travel is involved, or if travel is inconvenient, then the same treatment may be available at a local cancer treatment center or a local hospital.

I normally share this with newly diagnosed and your dad is not quite diagnosed yet. But there might be some good suggestions for the future. The value of this site is our ability to answer questions and explain terms. If your dad is diagnosed with lung cancer, there is a new vocabulary to learn, quickly, and we can help.

Stay the course.

Tom

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  • 1 month later...

My brother was recently diagnosed with NSSLC. He’s overwhelmed with options. Best as I understand his oncologist recommended chemo first and then maybe surgery if tumor not gone. Not sure what stage but early. He seems to think if he has surgery first he’ll only need a “little chemo”. I told him I thought chemo course likely the same (weekly for several months). His concern is the time spent in chemo. Anyone have info on this?

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Pam,

Welcome here and sorry to learn of your brother’s diagnosis. To your question, surgery first or chemo first. To answer effectively, we’d need to know your brother’s diagnosis Stage. Almost all Stage I A & B proceed directly with surgery and forego any chemo. Stage II A also generally has surgery first, and then a course of adjuvant chemo after. Things get complicated for Stages II B and III A. Tumor location is generally the determining factor. But it is not unusual to have pre surgical chemotherapy and sometimes radiation to shrink a tumor in a tricky location. Moreover at this stage, adjuvant chemo almost always happens. Stage III B diagnosis, if surgery is possible, almost always involves pretreatment and adjuvant treatment. Stage IV diagnosis doesn’t normally involve surgery as a treatment method. 

I was diagnosed with a single very large tumor in the main stem of my right lung’s bronchus. The tumor size resolved to a diagnosed Stage III B. I had presurgical radiation and chemotherapy to shrink the tumor and allow removal of my right lung. I was also scheduled for adjuvant chemotherapy after, but surgical complications caused me to miss that treatment. 

My presurgical treatment involved 30 fractional radiation sessions (M-F) and weekly chemotherapy in the form of Taxol and Carboplatin (totaling 6 infusions). My treatment worked surprisingly well. 

My post surgical adjuvant chemo was scheduled for 3 to 6 infusions once per week. 

You should encourage your brother to joins us. 

Stay the course. 

Tom

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Hi, Pam, and welcome. Ditto what Tom said.

Just one thing--you posted this in the SCLC forum, not one of the NSCLC or general forums. SCLC (small cell lung cancer) is much more aggressive and harder to treat than the NSCLC cancer you said your brother has.

Not saying this to scold, but rather to get you pointed in the direction of the most helpful information--and also to help you avoid some of the scarier stuff about SCLC.

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Pam,

Welcome and we look forward to supporting you and your brother.  Tom was correct in asking the questions he did and Lexie is also correct that by posting to the proper forum you'll get better coverage and results.  The "Introduce Yourself" forum is a good place to start.  In the meantime we do have a Caregiver's Resource Forum and here is a link to one of it's entries on "Tips and Support for Family Caregivers"  you can find it here.

Lou

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Pam, your brother should also get biomarker testing to determine if there is a gene mutation causing his NSCLC. My pulmonologist performed a bronchoscopy for biopsy and biomarker testing. These days, some mutations are treated with a targeted drug, even for early stage cancer. 

A chemo schedule depends on the diagnosis. For my Stage IIIB NSCLC, I had 6 infusions of carboplatin and taxol over the course of 6 weeks (one infusion per week), coinciding with 30x radiation over the same period. Unlike Tom, I was not a candidate for surgery. After that, I started a daily targeted therapy pill for my EGFR mutation in March 2020 and will stay on that drug indefinitely. One year later, I was NED (No Evidence of Disease), and my next PET scan is at the end of this month. I believe that all of the treatments have contributed to my survival. 

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Welcome Pam. Your in the right place...sort of. Agree with Lexie. Maybe start in the new members forum.

Other than that I've got not much to add to the others.

Stay calm. Easier said than done.

Peace

Tom

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Hello all...sorry it's been some time. A lot going on. So we found out he has extensive small cell lung cancer. It's in multiple regions now. He was given the option of chemo or hospice, he chose chemo. He wants to have more time with his grandchildren, 4 & 1. We don't know how long this might give him but he wanted to give it a try. He just started chemo this past week and he was trying to see if he is eligible for a clinical trial at our hospital. Right now he is in the hospital for breathing trouble related to COPD and hopefully he is able to go home by tomorrow. I really don't know what else to say but it is nice to talk to others who have gone through this struggle too. Still trying to take it all in. It's hard to wrap my head around the fact that my father is dying at an accelerated rate than the rest of us. 

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Aimee,

I’m so very sorry to learn of your dad’s diagnosis! Extensive stage SCLC just sucks—squared. 

I admire your dad’s grit. Every moment of life is precious. Hopefully the older grandchild will have actual recollections of your father because of his decision. 

Chemo even for extensive stage disease can work. Most experience a dramatic reduction in size and number of tumors. The challenge with SCLC is mutation that avoids chemotherapy. I do hope your dad experiences the knock-down without the mutation. 

Stay the course. 

Tom

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