NSCLC - New lymph node following treatment

[LarryFB56]

I was diagnosed 13 months ago with stage 3B NSCLC - single lesion in right lower lower lobe and mediastinal lymph nodes. After a course of radiation and chemo (4 cisplatin  and alimpta) and going tthrough a bout of pneumonia and pneumonitis as well as esophagitis I started to feel human again. A month ago I felt a lump in my neck , had a pet scan  and the node was hot but everything else was clear . The older lesions were NED.  Biopsy of the node came back positive for NSCLC and now waiting for molecular testing to come back.  Went from a Stage 3B to a 4 overnight. Devastated. The waiting is a killer. Would love to hear from other to figure how to manage this.emotionally and medically.

[LexieCat]

I'm so sorry, Larry.  I can only imagine how you're feeling.  I don't have any good suggestions/advice but wanted to send you a word of support.  Those who have been through this drill will be along shortly.  

Teri

[LarryFB56]

Thank you Teri

[Tom Galli]

Larry,

How does one manage a recurrence emotionally and medically?  The emotional part is a tough question.

I had 4 recurrences after treatments that yielded NED (no evidence of disease).  Emotionally and retrospectively, they each were among the most difficult periods of my life.  My wife's courage and conviction helped.  My general practitioner's nurse and my GP intervened during my third year of treatment diagnosing and arranging for depression treatment. So my experience looking back is to ensure you've got a strong shoulder to lean on, and ask the folks who know you best to watch for signs of depression.  When the signs show, and it will be very unusual if they don't, seek treatment.  Lung cancer is too much to handle alone.

Medical management is fortunately a bit easier.  I'm assuming from your post that your flavor of NSCLC is adenocarcinoma, and that assumption is based on your mentioning molecular testing.  Regardless, medically you'll likely have second line treatment.  There may be 5 alternatives depending on the testing results.  These are: conventional chemotherapy, targeted therapy alone, targeted therapy combined with conventional chemotherapy,  perhaps radiation therapy in the form of IMRT or SBRT, or surgical resection of the lump.  If you don't have adenocarcinoma, then immunotherapy  is a treatment possibility for squamous cell and large cell NSCLC. I would read the information I've linked and ask your oncologist about the viability of each alternative at the results revealed molecular testing consultation. 

Indeed waiting is a killer.  So much so, that I wrote a book about it.  You are in stage 1 "Scanziety".  I've found no cure for this malady having just emerged from a bout myself after a recent scan.  I'm a thirteen and a half year survivor and still get scanned every year.  But the fact that I've survived after so many failed treatments suggests that if I can live, so can you.

Questions?  This is the place and you are most welcome.  We are not doctors but many of us have been in your shoes.  One lesson learned.  Read as much as you can about your type and stage of lung cancer from reputable sources because knowledge about the disease and treatment alternatives arms one to ask terribly preceptive questions (TPQs) at oncology consultations.   I didn't read in but my wife did.  Her TPQ saved my life.

Stay the course.

Tom

[BridgetO]

Hi Larry,

I'm so sorry to hear about your lymph node. My lung cancer was an early one and so I don't have a similar experience. You will find others here who have. If you haven't already, I suggest you look at the thread  entitiled "Take that, stupid lymph node " on this Forum under Member Updates.

I think you'll find hope as well as helpful suggestions on this site.

Bridget O

 

[LarryFB56]

Thank you Briidget. I wil definitely look at that thread.

Larry

[LarryFB56]

Tom thank you for your informative post. I moved down to Florida 4 years ago from Toronto. Needless to say I have my whole family and support system up north. It has been difficult challenge doing the treatment s. Florida. I will have to make some decisions.  I was initially diagnosed Augusts 2016 with Adenocarcinoma Large Cell. The lymph node the came back positive for lung primary was the right upper neck. My radiology oncologist recommends 30 shots of radiation however my heme oncologist wants to complete all the molecular tests first. He says that the lymph node would be a good indicator if I'm responding the chemo/systemic (i guess is the immunotherapy). At this point emotionally I just want to coccoon in my apartment and anxious to get this treatment going.

BTW I picked up your book from Amazon and just started. It seems the first diagnosis is a huge surprise and every time I go to sleep I hope I wake up and all this was just a bad dream.

Cheers

Larry

[Susan Cornett]

Hi, Larry. I'm also stage IV NSCLC. I was diagnosed during surgery as IIIa but a subsequent scan found a metastatic tumor on my thyroid. When my doctor changed my staging, I lost it. Cried for days and considered giving up. But, like others here, I sought treatment for depression. It was the best decision for me.  

I found many here who have walked the same path, or worse, and are now long term survivors. They give me hope. I've said we're all members of a club that no one wants to join, but this group has been so wonderful. 

We're here for you.

 

[LarryFB56]

Thank you Susan. I've been floowing your story and we have many similarities   I was diagnosed 3B Adeno in July 2016 and underwent the combo of 39 rounds of radiation and 4 rounds of chemo. Subsequently ended up with pneumonia from post rad and esophageal stricture. Last scan in May showed NED but then beginning of July cervical lymph node popped up and a a PET/CT was done and it came back hot. No other hypermetobolic activity in my body. Well biopsy was positive and now just waiting for tissue testing before they recommend a treatment. My radiology oncologist wants another 30 blasts at the node but my heme oncologist wants to wait until the testig comes back and use the node as a barometer wether target therapy of immunoltherapy is working.

Wondering for your second line did you consider immune therapy like Opdivo or Keytruda? Regardsless you are NED now.   BTW I understand the ordeal with your parents. I lost my dad in January and was lucky to see him for my mothers 80 th birthday.  Subsequently learned that my mother has stage 4 breast cancer and to this day she know nothing about what's going on with me. I live in Florida and have no support system and thinking about moving back to Toronto to be with my family.

You are an inspiration and prayers of healing and full recovery I'm sending your way.

Best

Larry