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KP1992

Poorly Differentiated Cancer-Feeling Lost

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Hi all, glad to have found community that I can lean on. 

My father was diagnosed with cancer last week. He started having difficulty breathing about a month ago so my mom took him to the ER and the scans showed nothing. About 3-4 weeks later he was having trouble breathing again so she took him in again and this time the Xray and CT scan showed a mass in his left lung constricting the air way plus some spread to the right lung. 

The oncology team said his biopsy results have deemed the cancer "poorly differentiated" and they can't tell whether it is SCLC or NSCLC but they will treat it as if it were SCLC because of how aggressively it appeared. They are pretty confident in calling it Stage 1 because his recent CT and MRIs don't show any sign of spread. With all things considered I guess we got lucky that it started constricting his airway which led to discovering the cancer early. 

I still feel like I haven't processed all of the information or have figured out what else I should know. I'm confused as to how they can't figure out which one it is. To my understanding, the treatments and outlook for both are completely different from each other. It's seems like we're only left with shooting in the dark. 

Any words of advice from those who have had to unfortunately gone through this would be great. My mind is all over the place from info overload, caring for my dad, making sure my mom is looking out for her health, taking care of things around the house for my dad's return, fires threatening my home in CA, figuring out Family Medical Leave. I just feel so lost. 

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KP,

Something is not right. First line treatments for SCLC and NSCLC are substantially different. I’ve never heard of treatment starting before the type of lung cancer is determined with certainty. 

Moreover, staging these days is done with a PET scan. 

Lung cancer vocabulary is a challenge for everyone involved. I’d get clarification about his treatment plan and ask about a PET scan for staging. Press for a biopsy to bring certainty to the type. 

Stay the course. 

Tom

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2 hours ago, Tom Galli said:

KP,

Something is not right. First line treatments for SCLC and NSCLC are substantially different. I’ve never heard of treatment starting before the type of lung cancer is determined with certainty. 

Moreover, staging these days is done with a PET scan. 

Lung cancer vocabulary is a challenge for everyone involved. I’d get clarification about his treatment plan and ask about a PET scan for staging. Press for a biopsy to bring certainty to the type. 

Stay the course. 

Tom

The Oncology team said they are pushing for a PET scan for this week. To date, he has had an Xray, CT scan, MRI, and bronchoscopy. 

We have an appointment today with the Chemotherapy doctor. They also already have his treatment appointments schedule for this week Wed, Thu, and Fri. 

Last week when discussing the final biopsy report, they said it was "poorly differentiated" and I asked if any further tests could be done to determine and they said not really. They also mentioned he would most likely be on chemo with a combination of cisplatin and etoposide but that'll be fully determined at our meeting today. 

The last thing I want to do is delay treatment but at the same time, what is the risk of carrying on? I'm not a doctor so I'm not sure what the right thing is and I can only understand so much of what I'm told and research.

Thank you for the advice. I'm going to drill down to the bottom of this with the oncology team. 

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My dad's lung cancer was also too "poorly differentiated" to give the exact type.  However, they were able to tell it was NSCLC and not SC.  They just weren't able to tell the subtype(Adenocarcinoma, Squamous cell, etc).  They did a biopsy via a bronchoscopy as well.  So all that being said I asked if there was some way to end up identifying the cancer subtype and they said no.  It's the cancer that look "raggity" under microscope.  They were able to still test the cancer's genetics for markers and his was 60% positive for PD-L1 and they started him on radiation and keytruda.  Unfortuntely, his cancer was very aggressive and he ended up getting pneumonitis as a side effect of something we don't know.  That in combo with the cancer turning to an aggressive "lymphatic spread" ultimately took him from us.  So if i were in your shoes...someone needs to head up the patient advocate role.  Someone who can ask smart questions and can digest medical info quickly and can be at every appt.  I would ask about at least figuring out how to type the cancer nsclc or sclc.  Definitely make sure they are sending it off for genetic testing.  And demand the pet scan now.  If there is anything surgical they can do jump on it(doesn't sound like it if it has jumped lungs and that sounds stage IV to me because of the spread) and hopefully the genetic testing will show some markers for targeted therapy or immunotherapy. 

 

Oh and talking about aggressiveness.  My dad had a low dose CT scan in March of 2018 that showed no tumor or cancer at all.  On June 20th he went to the ER because he couldn't breath and the CT scan showed a 9CM mass blocking his left airway.  His cancer was NSCLC.  It went from 0 to 9cm in 3 to 4 months.  Words from our doctor "ALL LUNG CANCERS ARE AGGRESSIVE".  

 

So patient advocate.  Genetic marker testing(very important).  pet scan. try and figure out nsclc or sclc(very important in my opinion).

 

Your story sounds eerily similar to mine.  My dad was 70 and i am 39.  i'll keep checking back here.  Now is the time to focus and research everything to the highest degree.  

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Like Tom said, treatment options for small cell vs non-small cell are very different.  If you and your family are fearful of delaying treatment (which is understandable), you can always seek a second opinion while perusing the current treatment option.  This idea was given to my mom when she was originally diagnosed.  We did not seek a second opinion, but would have if her diagnosis and treatment option was not the best available at the time.  Although it's really important to jump on a treatment plan asap, it's also equally important to have a clear diagnosis and staging.  Unfortunately, we are often at the mercy of how quick test results are available and how quickly we can get in for testing, within reason.  Things tend to move quickly, at times, and then seem to drag at other times during initial diagnosis.  All of this can be very confusing and the information overwhelming.  LUNGevity's website has a lot of great information and questionnaires available to take to appointments to help ask the important questions.  Do know that your family is not the only one who has had to wait and has been confused throughout the initial diagnosis stage.  We've all been there as patients and caregivers, and many, many of us are still here to talk about it!

Take Care,

Steff 

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