Dad has recently been disgnosed with metastatic cancer to lymph nodes.....NSCLC...carcinoma

[DaniD]

At this point it has not spread to organs or bone.

Any others have a similar diagnosis and would like to share any advice or experiences?

Trying to stay in positive fight mode but would love to be more knowledgeable. I zoned out for most of appt with oncologist. Now my dad is not feeling well and i don't want to drag him to doc to have my questions answered.

#concerneddaughter

[Steff]

Dani,

I am a concerned daughter as well - my mom has NSCLC adenocarcinoma.  She is on her 1st recurrence.  Originally diagnosed in 2015, she had a lobectomy with follow up radiation and chemo because the surgeon was unable to remove a lymphnode that was involved.  She had her "1 year all clear scan" in April 2017.  A few months later, my mom had shortness of breath that she did not have before.  She had to transfer to a new pulmonologist and he identified her cancer recurrence from her "1 year all clear" scan.  It was on the back of her trachea, inoperable, not recommended for radiation because part of it was in a spot that was radiated with the original cancer.  This diagnosis was a punch in the gut, worse than the first time around.  I did not know the high rate of recurrence with lung cancer at the time and figured my mom would be fine.  As with many others, this was not the case for my mom.  It was really hard for me to stay positive.  I understand how you are feeling.  I don't have any experience with metastatic cancer in the lymphnodes, so I am of no help there.  One thought though, if you have questions you want answered, is it possible to email some of them to your dad's doc?  My mom's clinic uses an online medical chart that has the ability to email her docs.  We can usually get a response back quicker via email than by telephone.  

[DaniD]

Thank u steff for your reply. So sorry for what you guys are going through. It seems to be harder for my dad as well this time around. I am def going to try and use the email route on some of my questions, thank u for suggestion. 

As a concerned daugter to another, stay positive and in battle mode. Feel free to reach out at anytime. It seems to bring a little calm to talk to others in same situation.

If u don't mind sharing/me asking what's the next treatment/management plan for your mom? 

[Steff]

Us concerned daughters gotta stick together! lol

My mom is currently on a treatment break.  She was hospitalized over Thanksgiving from inflammation in her stomach, intestines, and colon.  The inflammation is being blamed on Keytruda (immunotherapy) that she has been on for more than a year.  Her cancer has been stable for quite some time - we will never know if it's truly gone because it's impossible to get a good picture of it, but we are hopeful it is gone.  She will have her usual 3 month scan in January and see her oncologist.  They will decide where to go from there.  I will imagine as long as the cancer has not returned, they will keep her off of immunotherapy for a bit longer as she is still recovering from the inflammation and is still tapering off steroids.  It's been quite this journey this year and the unforeseen future is scary to me.  But my mom is strong and still has fight in her, which I am very thankful for.

Take Care,

Steff

[LaurenH]

Hi, DaniD,

Welcome to LCSC. This community is a great place to connect with others impacted by lung cancer, ask questions, get support, and share your experience. LUNGevity's Lung Cancer 101 website is a good place to find information about types of lung cancer and treatment options. The Patients & Caregivers section of LUNGevity's website also has lists of important questions to ask at each stage of the lung cancer journey and information about LUNGevity's support programs for people affected by lung cancer. Please continue to post updates and join the conversations. We are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation