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St Michael

Possible recurrence

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So it’s been almost three years since mom was first diagnosed with stage 3a adenosquamous NSCLC. One tumor, two nodes positive at the time. All surgically removed. She had chemo prior to surgery and radiation after. 

Recently she’s had a terrible cough and the family and I all believed it was just a cold since it’s winter and we have all been sick. She recently mentioned having an enlarged and somewhat painful lymph node near her collar bone. Her oncologist was contacted and said he believed it to be suspicious. She goes for a CT scan tomorrow. She’s very nervous and so am I. Her chest CT scan last month was clear. So very frustrating...

She was positive for EGFR last time her tumor was profiled. If this is confirmed to be a recurrence, is it likely that she still has that mutation? 

Really hoping it’s not, but trying to prepare for the worst. Any feedback would be appreciated.

cheers 

 

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Hello, I’m so sorry you’re family is dealing with this possible issue.  I hope the CT scan is uneventful. 

If there is a recurrence detected, there should be another biopsy to determine what could be driving the cancer’s growth.  This is important to assess for new gene mutations. The most common type of mutation in EGFR is the T790M, a sub-type of EGFR.  It’s also possible for EGFR is mutate to ALK Positive.  
 

Sometimes a blood biopsy can be done instead of a tissue biopsy so you might want to ask about that.  
 

The type of testing for this process is called Next Generation Sequencing, it’s a comprehensive test that takes 2-3 weeks to provide a very specific treatment plan.  If your Mom is not treated at a major academic center it might be worthwhile to seek a consultation as there a quite a number of clinical trials underway.

Keep is posted and ask whatever questions you want.  We’re here for you every step of the way  

Michelle


 

 

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Good evening. Thank you for your reply.

Her chest CT scan came back today with no concerns as well as her blood work. However, her oncologist did detect an enlarged lymph node in her under arm on her CT scan. He believed that was more suspicious than what we originally thought to be an enlarged lymph node in her collar bone?? So confused.

They are going to do a PET Scan and Biopsy next Thursday. I just don't know what to think. I'm exhausted.

Be well everyone.

 

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So her oncologist just called her and said that he spoke with his colleagues and now wants to wait on the biopsy until the PET scan was conducted.

Not sure if this is a good thing or not. Anyone's thoughts?

  

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That makes sense to me. The PET can show if the area of concern is potentially cancer (this time of year lymph nodes can swell in cold/flu season).  So the PET can serve as an initial evaluation. The oncologist is probably trying to determine if the lymph node is inflamed due to an infection with the hopes a biopsy proves unnecessary.  
One day at a time, one test at a time.  Hang in there.  

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Good afternoon all.

My mother met with her oncologist today after receiving her PET scan results. The PET scan revealed 2-3 "suspicious" lymph nodes under her arm, near her heart and near her liver. They are going to do surgery in the next few days to biopsy the lymph nodes to confirm whether or not they are cancerous. The oncologist/radiologist didn't mention locating any tumors, just suspicious lymph node involvement at this point. Any advice on what I should be preparing myself for in the upcoming days would be greatly appreciated. Anyone have a similar scenario occur like this?

Thank you.

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St Michael,

Normally, PET scan results are reported in the form of SUV uptake.  Do you have the uptakes for the suspicious nodes and other mets?

Is you mom having surgery or a needle biopsy?

Stay the course.

Tom

 

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Hi Tom. 

Thanks for your reply.

She is having a few of the lymph nodes, not all, completely removed via surgery next week for biopsy. Her oncologist mentioned she could have an infection, a cancer recurrence or potentially lymphoma? She had some neuropathy to her left foot as a result of the radiation she had three years ago and the treatment she was being given to counter act the neuropathy was recently increased. I’m not sure if this would cause the lymph nodes to illuminate on a PET though.

I do not have her SUV uptake from the PET scan result, but am being told it did not show any new tumors. I will share once I see the paperwork. I’m Trying to be positive, but practical.

 

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Hi everyone. Just an update (and an inquiry):

My mother had her biopsy surgery three days ago and had the lymph node under her armpit area, one of 5-6 nodes that illuminated on her PET, removed for testing/analysis ect. The oncologist called today and wants her to come in for an appointment this Monday and send her for a brain MRI. He says the brain MRI is standard? and would not give any details on the telephone as to the results of the lymph node biopsy. The PET/CT scans did not show any tumors, just several lymph nodes to be involved. They are under her arm, near hear heart and neck areas from what I'm told. I don't have the SUV uptake...

I'm hoping not, but I want to brace myself that it's a possible recurrence. Has anyone had or known of a similar situation like this? Would targeted therapy be next? Her tumor tested EFGR positive when she had her lobectomy three years ago. Just getting a little nervous. Lymphoma was originally discussed as a potential cause of the lymph node involvement, though I haven't read much to show how common that would be after lung cancer stage 3a curative treatment. I guess waiting is the hardest part. Thanks everyone.

 

 

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I don’t have any insight into your Specific questions.   I do know how hard the waiting is.  I hope it all turns out ok for her.  Hang in there.  

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This sounds like it’s standard operating procedure to me. The Brian MRI is part of the traditional diagnostic process. It’s not uncommon for doctors to request a face to face visit to review results. My doctor doesn’t do phone results, we have always had scheduled appointments.  Unfortunately, EGFR lung cancers are at high risk for recurrence and it’s not understood why that’s the case however it’s possible to have a recurrence that remains stage III or EGFR can mutate to another NSCLC. 
We all know that waiting is the worst part of the process.  Let us know how it goes on Monday.  

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St. Michael,

Could your mom have a recurrence after a lobectomy? Yes, unfortunately. My doctors are reluctant to give me test results telephonically. Now after nearly 16 years, the after scan email from my doc is “relax—more details at our consultation.” I’ve been fortunate but had 4 recurrences in my history. 

I think you should steel yourself for a recurrence. Considering the PET, the biopsy, and the forthcoming MRI,  bad news seems likely. 

Decisions lie ahead, but one thing is certain. Cancer or not, we have a life to lead. Encourage your mom in this regard. 

Stay the course. 

Tom

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Hey everyone...

Unfortunately, the biopsy results confirmed the lymph nodes that illuminated on her PET scan are lung cancer again.... I'm feeling very overwhelmed and somewhat lost for words, but I am trying to be as grateful as possible the MRI results came back negative and that my mom has the EGFR mutation.

The oncologist wants her to start on Tagrisso as soon as possible. Some bullsh** with insurance but we are trying to figure it out now..

 

 

 

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St. Michael,

Very sorry to learn of your mom’s recurrence. Hopefully Tagresso will take hold and eliminate the troublesome nodes. Good news about the clear brain MRI. 

Stay the course. 

Tom

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Hi,

That’s a kick in the gut! I’m so sorry to learn about the recurrence, definitely not the news you were hoping for.  If there’s any good news here it’s that Tagrisso is a very effective targeted therapy.   There are many people with EGFR Lung Cancer taking targeted therapy for a decade or more.  Since EGFR is one of the more “common” gene mutations, there are many clinical trials to advance the science to continue to improve on both quality of life, progression free survival and overall survival rates.  Tagrisso is pretty well tolerated so hopefully your Mom will be back to near full functional status very soon.   
Let us know if you’re not able to address the insurance issue quickly, we’ve got tips posted in the blog section on how to deal with the most common issues. 
I hope that you are taking time to take care of yourself, that’s important too. Let us know how it goes and thanks for the update.  Better days are on the horizon. A big hug to you!

Michelle

  

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Thank you both for the kind responses. Hearing she is now stage 4 has proven to be exhausting, both physically and emotionally.

Her oncologist at dana farber mentioned that she should get at least three years PFS on tagrisso (average), but I’m hoping for more like you mentioned Michelle. I’m trying to be positive. I’m not sure if this is the right forum section, but can anyone offer feedback on what the treatment options would be when she ultimately develop a resistance to Tagrisso? Would opdivo then become an option? The doc says he is reserving chemo and radiation.

thank you.

 

 

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Of course you feel wiped out- that’s perfectly “normal”.   One of the ways I look at this is that in the new world of treatment options, stage is just a number that drives the treatment plan since diagnosis is not prognosis.  

I really don’t understand why doctors give average PFS to us anymore when the reality is they don’t know. Most of the clinical trials were done with people who had previous treatment with older generation targeted therapies. In other words living with the disease longer than someone taking Tagrisso for the first time.  
 

While at some point the inhibitor will develop resistance, it really depends on the circumstances.  In many cases, there is another biopsy and diagnostic process again.  Today the most likely scenario is targeted radiation while continuing on a targeted therapy to provide the longest duration of Tagrisso.   One of our group members had shoulder pain which unfortunately was due to disease progression.  After an expert consultation at one of the big gun hospitals, targeted radiation was administered and this member continues to take the targeted therapy.  
There are some clinical trials using immunotherapy with EGFR too.  

At the current pace there will be additional options even though it’s hard, try not to worry about what’s next.  Dana Farber is one of the leaders in EGFR, providing your Mom the best available treatment.  
Michelle

 
 


 

 

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Thank you for the encouraging words Michelle. I really appreciate the "diagnosis is not prognosis" line. I'm hoping that her cancer can be managed like a chronic disease as that's all I tend to hear and read about lately regarding lung cancer.

I hope everything is well on your end.

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St Michael,

I've been keeping track of your mom's lung cancer recurrence journey here.  I finally feel like I might have something helpful to share.  My message is one of HOPE.  I received a punch in the gut when my mom was diagnosed with her lung cancer recurrence 3 years ago, 1 year after finishing treatment for NSCLC adenocarcinoma, stage 3a.  Her lung cancer recurred on the back of her trachea, closing it to about 30% airflow and requiring a stent.  At original diagnosis, testing for mutations was too new, but with her recurrence, she found that she had a high PD-L1 level and was a good candidate for immunotherapy.  So, not only was my mom diagnosed with lung cancer AGAIN, their treatment recommendation was not the traditional one (chemo and radiation), they were suggesting this new, fancy immunotherapy drug.  I was doubly scared and feared the worst.  It took me nearly a year to calm down and accept that my mom had lung cancer again. That is where I began to understand that these days, lung cancer is often being treated as a chronic disease (as you mentioned).  My mom already has a couple of chronic conditions - rheumatoid arthritis and diabetes, what's another one! lol   My mom's road to NED was not a walk in the park, but she made it.  

We have just surpassed 4 years since initial diagnosis.  My mom has decided to call herself a lung cancer survivor rather than saying "I have lung cancer".  According to the statistics, my mom isn't supposed to be here.  Nor are many others on this forum.  Statistics/progression free survival/etc is not who your mom is, nor does it define my mom.  Originally, my mom asked her doc if she was just buying time.  Her doc said "yes".  Well, the time that my mom "bought" has been great.  She lives her life to the fullest and has recently tried new things like painting and going to hockey games.  Honestly, we both feel that our lives are fuller because my mom is a lung cancer survivor.  The journey here was hell and I definitely would not have said this 2 years ago. This is probably not the last time my  mom has to deal with lung cancer.  We've both accepted that, but when it does recur, we know that treatment advances with again help her to buy time.  

I know that your mom has a long road ahead, but please know there is HOPE.

Take Care, 

Steff

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