Mom admitted to ER with pleural effusion now diagnosed with cancer

[MzShanon]

My mom was admitted to the ER recently and hospitalized for 6 days. She had a pleural effusion in her left lung so they had two thoracentesis procedures done and a biopsy. The doctors are pretty much telling us it’s cancer and likely late stages. She is currently at home waiting for an oncology appointment. I am extremely anxious and completely terrified. The wait is killing me and I’m overwhelmed with grief. Any advice or help is appreciated. I am the eldest in the family and it’s just my mom and my younger brother. I’m trying to hold it together for us. 

[LouT]

What terrible news to receive.  I'm sorry for you and your mom.  I won't speak to any part of your mom's disease as only a doctor, after considerable testing, can say what stage she is at and what the prognosis would be with treatment.  But as a caregiver (and the oldest sibling) I want to share some information for you as I understand how hard it can be living the life of a caregiver.  We have a Forum titled "Caregiver Resource Center" and it can be found here.  

Once you have more definitive information on your mother's disease please post it here along with any questions you may have.  Our family here has many survivors with varied diagnosis, treatments and knowledge that they are happy to share.

Your mom and family are in my prayers.

Lou

[Tom Galli]

MzShanon,

Welcome here.

Here is information about the thoracentesis procedure as a diagnostic method for lung cancer (click the right arrow ahead of Thoracentesis).

The biopsy of the fluid will disclose the type of lung cancer and here is information about lung cancer types. Deducing a type is important because each type of lung cancer had a different treatment method. You might also received information on biomarker testing of the thoracentesis fluid. This is also important because biomarkers will tell if systemic treatment methods called targeted therapy or immunotherapy are available. These relatively new treatment methods have dramatically moved the survival curve in our disease.

As Lou states, when you received more information about your mom's diagnosis and if you have questions, this is the place for answers.

Stay the course.

Tom

 

[LilyMir]

So sorry you are having this scare. Try to take deep breaths when you feel overwhelmed and tell yourself that whatever the diagnosis will eventually be, you will handle it. I recall when I was told I have lung cancer, I was so distraught and in disbelief for a while, I was off balance. The good news is that though grief and worry never totally disappear, their impact reduces and you start focusing on treatment and management of the disease. Until you know more about your mom's condition, try to focus on being together and easing her and your grief. Lung cancer is no longer a death sentence and there are many treatments even for late stage. Hopefully your mom will have options given to her by doctors soon. The people on this forum are amazing and will help with any questions you may have. Take care. 

[Judy M2]

Hopefully your mom's doctor will be able to do biomarker testing on the fluid. This unfortunately takes time but is worth the wait. Even late stage lung cancer can be treated with good results these days. Hang on there, try not to worry too much and stay away from Dr. Google. Please let us know how the testing turns out. 

[MzShanon]

We have been struggling with my mom’s insurance plan. She has Medicare HMO and the treatment center she wants to go to doesn’t accept her insurance, we have to wait until January a new healthcare plan to take into effect. Meanwhile, we will be seeing an oncologist on November 15th and a new primary physician hopefully in the coming week. What can we possibly do during this time as we wait? She was discharged from the hospital, but her pleural effusion hasn’t gone away. She still has a cough but so far remains stable. We still don’t have a diagnosis yet, but since the fluids came back malignant we are assuming we are looking at late stage cancer. What should we be discussing with her new primary? 

[Tom Galli]

MzShanon,

Oh my! Insurance problems are not the complication we'd like right now.

Pleural effusions occur because the lining between the outer lung wall and the inside chest wall is irritated. Cancer can be the irritation but there are other causes. Your mom may have cancer, but cancer might not be the irritation causing the effusion. If the effusion is affecting your mom's ability to breathe or if it is causing pain during breathing, a stent can be positioned to drain the effusion into the abdominal cavity. You might want to engage her new GP in a discussion of alternatives to address the effects of the effusion. 

Perhaps the GP and oncologist are in an affiliated practice. If so, then the GP might check if biopsy results are posted to your mom's medical record and if they are, the GP would be able to discuss, in a general sense, the type and stage of lung cancer. You didn't mention a CT scan of the chest in your first post, and perhaps the hospital did not perform one. Moreover, it is general protocol to screen for brain metastasis before starting treatment using an MRI. Accordingly, the GP might order a chest CT and brain MRI so these results would be available to the oncologist on November 15.

I strongly recommend a COVID booster and a senior flu shot. Getting either while in cancer treatment is a nightmare best avoided.

Stay the course.

Tom

[Judy M2]

I agree with Tom in general and also about getting her shots, and I would add the Prevnar (Pneumonia) shots to that list. My primary doctor gave me the first Pneumonia shot at the appointment when I was diagnosed (and I followed up with her for the second one). 

Your mother may also need to see a pulmonologist, so ask the new doctor for a referral. 

[MzShanon]

Thank you Tom and Judy for your responses! My mom definitely needs to get her COVID booster, flu and pneumonia shots done. Hopefully she can get those during her primary care visit. At the hospital she had the two thoracentesis procedures, enhanced Ct scans (chest and stomach), and a biopsy done. All of those are still pending. Is it normal to be waiting awhile to receive that information? 

[Tom Galli]

MzShannon,

Lung cancer biopsies are 2 types these days: a histology examination performed by a pathologist, and a follow up laboratory test to check for targeted therapy and immunotherapy suitability. The former (histology) ought to be almost immediately available because it consists of looking at cells under a microscope. The histology biopsy ought to disclose the type of lung cancer, and this information should be in your mom's medical record now.

Lung cancer comes in 2 types, small cell and non small cell. Non small cell lung cancer has two sub-types: adenocarcinoma and squamous cell. Some forms of adenocarcinoma are treatable with new therapies, termed targeted therapy. Here is information on targeted therapy treatment.

The laboratory biopsy also tests for suitability for a new type of treatment called immunotherapy. This part of the test identifies a cellular expression called PD-L1. If the biopsy exhibits certain ranges of PD-L1, then immunotherapy may be a suitable treatment. Here is information about immunotherapy. Immunotherapy can be used to treat both small cell and non small cell (both adenocarcinoma and squamous cell) types. 

Laboratory biopsy results often take about 14 days to generate. Targeted treatment and immunotherapy are game changes in treating lung cancer and often these therapies are used in first line (first treatment) treatment plans. So treatment is normally delayed until the laboratory biopsy results are in hand.

Stay the course.

Tom

[Judy M2]

MzShannon, it's really vital to wait until all test results are in so that your mom's doctor can create the appropriate treatment plan. You wouldn't want to start a treatment only to find it was the wrong one or unnecessary. There are so many treatment options these days. One thing cancer teaches us is how to wait. It's a hard lesson, to be sure. 

[MzShanon]

Hi everyone so my mom’s biomarker testing came back and she has NSCLC with a Exon 20 insertion mutation. We are trying to get her into a clinical trial for targeted therapy, but I know this mutation is harder to treat and there aren’t as many drugs for this. Where can I get support and resources about this mutation? 

[Tom Galli]

MzShannon,

NSCLC adenocarcinoma EGFR Exon 20 insertion can be a tough nut to treat. Here is a good synopsis of the condition as well as information about the newly FDA approved drug Rybrevant (amivantamab-vmjw) that may be effective.

Our Lungevity Foundation offers two kinds of support resources that might be of help to your mother. Here is the link to Peer-to-Peer mentoring that includes LifeLine Support and Clinical Trial Ambassadors. The former are patients with the same or similar type of disease as your mother that can share treatment experiences on a one-on-one basis and the latter is help in identifying clinical trials that are starting for Exon 20 insertions.

I do hope your mom has a good outcome.

Stay the course.

Tom

[Karen_L]

There's a Facebook group run by Marcia Horn that is for Exon 20 folks. Marcia is amazing. I urge you to seek out the group. 

[MzShanon]

@Karen_Lthank you and I have reached out to Marcia and joined these Exon 20 Facebook groups. They have definitely been extremely helpful! 

[Judy M2]

I just shared this with the EGFR Resisters Group on Facebook (I'm not in the Exon 20 group). A local oncologist recently presented the findings. One of the EGFR members is in this trial. In California it's available in San Diego, Irvine and Whittier. 

https://www.targetedonc.com/view/sunvozertinib-shows-activity-and-tolerability-in-egfr-exon-20-nsclc

[MzShanon]

@Judy M2I recently read about Sunvozertinib as well. This looks very promising! Thank you for sharing!