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Any Pancoast survivors/stories?


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Hi All,

After a CT Scan, the doctors found a mass that is about 5cm in the upper lobe of my mom's left lung. They mentioned that the cancer may have also spread to the shoulder joint (my mom has been experiencing some shoulder pain over the last few weeks so I guess this explains it). Doing some research, it seems this is what is known as a pancoast tumor in the lungs. It seems to be pretty rare, but was wondering if anyone has dealt with this before? There's a lot of outdated statistics online and I don't really see too many stories of how people handled treatment options (or perhaps it's similar to other non-small cell lung cancers). Would appreciate it if anyone has any information or tips to share.

Also - if the tumor has spread to the shoulder, does that mean it's metastatic cancer? Or that the tumor has just gotten so large that it's putting pressure on the nerves/bones in that area? Mom is doing a biopsy along with other imaging work this week (stupid holidays really delayed us by a few days!).

This totally caught us off-guard! My mom is 64, exercises regularly, eats very well, never smoked...really blown away by this.

I also just want to say thank you to everybody who is willing to share their stories. I've learned so much about treatments offered and love the hope and optimism that everyone carries. Thank you all!

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Hi huj123: Thank you for joining us and sorry for your Mom's diagnoses.  Unfortunately many of us were young,  healthy and active prior to being diagnosed. Lung cancer does not discriminate.  While you were told she has Pancoast tumor, I suggest that you wait for the biopsy results. Make sure they also do the biomarker tests to see if a mutation may be present.

The answer to your second question is yes when cancer spreads out of the lung (in this case) it is called metastatic cancer and usually labeled as stage 4. However you still need to wait for the results of the biopsy to make sure. I wish you the best.

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Hello huj123.    Yes I am one of those Pancoast tumor survivors !   

I had shoulder pain that went down my arm and chest pain .  I had just moved back to 

Minnesota so I thought it was due to lifting and unpacking everything. I called the Dr for an  

appointment and they said " You are 50 , it could be a heart attack come to ER now !

Normal EKG and blood work but luckily an x  ray done showed a tumor in my upper lobe pressing on

nerves going down my arm and on my chest wall.  If you want my whole story go below to my story. It is posted.

Please keep us posted on how she is doing and the treatment plan . 

Donna G 

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Hi and welcome. I'm glad to see that you've heard from Donna.

Here's what I know (or think I know!) about Pancoast tumors. They are by definition tumors occurring in the very top part of the lung. Because of the location, they can press on nerves and other structures and cause pain and other symptoms. They can be either small cell or nnn-small cell cancers and if non small cell(which they usually are) can be any of the kinds that NSCLC can be. That's why it's important to have biomarker testing--to see if the cancer has mutations for which a targeted therapy or immunotherapy is effective;

Here is  information about biomarker testing: https://lungevity.org/for-patients-caregivers/lung-cancer-101/diagnosing-lung-cancer

Best wishes to you and your mom. Please keep posting and let us know what other questions you may have.

Bridget O

 

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@GaryG @Donna G @BridgetO

Thank you all for the extremely helpful responses, details, and stories! I am holding onto hope and will update everyone once I learn more. I will absolutely make sure doctors test for biomarkers - this seems very critical!

One last question: is there any concern with the radiation of receiving the CT-guided needle biopsy? I would rather the pulmonologist perform a bronchoscopy or an ultrasound guided needle biopsy, but obviously, I think the most important thing here is choosing a procedure that removes enough tissue for accurate bio-marker testing. Curious what you all think about this?

Thank you all and God bless!

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Hello huj123:  I had a bronchoscopy  first to extract tissue and liquid on the inside. However my oncologist ordered a biopsy  as well. I would not worry about CT-guided needle biopsy because they can zero in on a very small area.

Make sure they take  enough tissue to perform more than one bio-marker test. Some members here had false readings on the first one and the second test found mutation. Best of luck!

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Over the course of diagnosing/treating lung cancer, most of us have literally dozens and dozens of CT scans. The risk of radiation from these is far less than the risk from the cancer if it's not properly assessed and treated. I wouldn't worry at all about that. The type of biopsy most often depends on the size/location of the tumor and any lymph nodes or other sites they want to sample. When I was first diagnosed back in 2017 with my Stage Ib cancer, the nodule was too small to even biopsy. My upper lobe was removed based on its suspicious appearance and sure enough, it turned out to be adenocarcinoma. 

This time, I had a bronchoscopy to sample a much larger tumor and lymph nodes. It all depends on individual characteristics.

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@huj123

I was 61 when diagnosed with Stage IV nsclc this past June. I had started going to physical therapy for shoulder pain. I had had an xray and MRI of my shoulder and neck and was told it was my neck causing the pain. In the middle of ame back inconclusive. The second was EBUS, which is a broncoscopy guided by ultrasound. We knew it was adenocarcinoma after that. I had a PET scan and that is when it was determined to be in my shoulder blade as well.

While we waited for the biomarker results, I had 10 radiation treatments to the main lung tumor and my shoulder. It helped immensely with my shoulder pain. And my lung as well. But I did end up with difficulty swallowing and radiation pneumonitis (kind of like pneumonia but caused by the radiation). Those side effects depend on the location of the tumor in your lung. And minecwas in the right lower lobe. 

It totally caught us off guard too. 

Will be thinking of you and your mom.

Jenny

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@GaryGThat's really good to know! The doctors mentioned they will be testing for biomarkers, and their goal is to extract a very large sample of the tissue. Hoping we don't have to do this a second time

@LexieCat: that makes sense! That context really helps out. Agree with both you and @GaryG - at this point diagnosis is most important - shouldn't be concerned about the type of biopsy. I have relayed this to my mom.

@JennedyThank you for sharing your story. I honestly wish there were some kind of diagnostic blood test that would be a part of an annual physical that would show whether the lungs are doing ok. How are you doing now? Have your post radiation symptoms improved?

Just as an update for everyone: because of COVID, the doctors are requiring that patients take a COVID test 4 days prior to the scheduled biopsy appointment (really frustrated this wasn't communicated until today!). Unfortunately, due to availability of the doctors, this means the biopsy can't be performed until next Wednesday, with a PET scan to follow if biopsy returns positive for cancer...I guess I just have to try to be patient over the next 2 weeks....



 

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@huj123 The side effects from the radiation are gone now. It took several weeks on steroids. I also wish there was some way other than a scan to see whether or not the therapy is working.

Patience has never been my strong suit. I am trying to work on that. 

Keep us posted!

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  • 2 weeks later...

Hi All,

Hope everyone is doing well. Just wanted to provide an update: mom completed the biopsy earlier this week, and doctor called back today saying that it is non-small cell adenocarcinoma. MRI and PET Scan are upcoming in the next two weeks to determine staging, so I will share more results then. Doctors mentioned that the results from the biomarker testing will be available later this week, so will share some more detail soon. 

Thank you all for the support!

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Thanks for the update and sorry your Mom has cancer. Once the staging and Biomarker tests are complete it will be clear what type of drugs/regimen she will be on. We will be here to help you navigate through the ups and down should you need help. Stay strong.

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