Mom Just Diagnosed

[Kiera626]

My mom was just diagnosed with Stage IV Metastatic Adenocarcinoma by her pulmonologist.  She had a thoracentesis and the fluid they drained tested positive for metastatic cells.  We meet with her oncologist for the first time next Wednesday.  I am terrified.  It feels like just two months ago she was healthy and we were having our Saturday shopping and dinner dates.  We lost my dad very suddenly 14 years ago from a stroke, so she and I are all we have left.  I will be the sole caregiver and she is currently staying with me.  I am determined to face this head on with her and attack this with as much vigor as I can.  I've been doing research, keeping a notebook full of questions so I can make sure that I am asking the right questions, and reading up on supplements and meal planning.  I've bought a few books that have recipes and ideas for battling side effects of treatment, as well as foods that supposedly starve cancer cells.  My mom looks so frail and it scares me.  I guess I just wanted to see if anyone had any advice or hopeful information to help me help her through this.  I breakdown often when I am in bed at night, where she can't see me.  I feel like I need to be the strong one for her, but the thought of possibly losing my mom, who is my absolute best friend, is the worst feeling I have ever experienced.  It's also difficult because our friends and family are firmly divided in their views regarding treatment.  We have those who are anti-doctor/chemotherapy and  want us to focus on holistic care and those who are in the medical field and encourage treatment.  I know the risks associated with treatment, but if they explain that chemo is the only option and my mother wants to move forward with that, I will support her.  I'm just looking for any advice and support anyone may have.  It feels wrong to be hopeful right now, considering such a serious situation, but I want to find hope and encouragement for mom to fight this with all of her.

[Steff]

Kiera,

It's not wrong to feel hopeful, although I understand the feeling.  I too have been the main caregiver/advocate for my mom with advanced stage NSCLC adenocarcinoma.  I was feeling very hopeless when my mom was originally diagnosed but was even more hopeless when she was diagnosed with her recurrence.  My mom's mom, brother, and best friend all died from lung cancer.  We had not seen any positive outcomes after treatment, so I was very scared.  But, here we are nearly 4 years later.  

I originally reached out to these forums in the search for hope and found it.  My goal now is to (hopefully) provide hope to others.  See, just 5 years ago, your mom's Stage IV diagnosis was a likely death sentence.  Now it is not.  With advancements in lung cancer treatment, for many, lung cancer is being treated as a chronic disease.  Radiation and chemo are no longer the only option and in fact, sometimes it's not even the first line of treatment.  You may find that your mom will have a couple of treatment options, depending on her biomarker testing.  

It's great that you are keeping a notebook full of questions.  Continue to do that. Keep everything in one place and take it to every doctor's appointment. As your mom progresses in treatment this notebook will be able to demonstrate if there has been any health changes that are cause for alarm.  With no regular documentation, small health changes are hard to identify.  LUNGevity has some great questionnaires for folks in different phases of their journey, I used them to help me frame my thoughts.  You can find the questionnaires  here.

I could go on and on, but I will leave you with this...I wish I had a magic wand for you, but I don't.  But know that you are not alone - we are here for you.  Please reach out to us whenever you need.  You will gain a lot of helpful information from the warriors here and you will also see that there is hope.

Take care,

Steff

 

[Curt]

Hi Kiera.  Welcome.  I’m sorry to hear of your moms diagnosis.  Steff has provided some great advice and encouragement.  She’s right regarding current treatments and prognosis.  I can tell from your post you are ready to confront whatever is required for your mom.  Your mom is lucky to have support like that.  

I can relate regarding differing opinions on treatments.   It can be confusing and upsetting for all involved.  The only advice I can give is to focus on what your mom wants.  Her feelings and wishes are the most important.  

Hang in there.  The initial part after diagnosis, before a treatment plan is in place, holds a lot of uncertainty and stress.  That all consuming feeling will start to pass as a treatment plan is settled on.  I’m the meantime plan some things with your mom that don’t have anything to do with her diagnosis.  Don’t push life aside because of it.  Enjoy the moments in between doctor visits and treatments.  Whether your mom survives five years or fifty you won’t regret those times. 

[Laurel]

Your mom is blessed to have you at her side. Often, the patient can have trouble focusing on what is being said....I know I did.  Focus on getting quality and timely treatment.  Take times for walks...for joy. Hugs.

[Blossomsmom]

Hi Kiera, 

I’m so sorry you are going through this. Your story is so similar to mine that I know pretty much how you feel. It’s a terrifying journey we’ve e set out on. Like you, I am upbeat and strong when I’m with my Mom and try to encourage her but she is indeed the strong one. I find I mostly cry when I’m in the car which makes driving a challenge. Even though my mom just turned 90 & I’m 63, I like you, am not ready to lose her. The very thought is devastating. And I find I’m consumed with thoughts of her care, her treatment, her quality of life. I want to know every detail but have no control over any of it. It’s such a helpless feeling. I have made it clear to my Mom that the choice to continue treatment or not is entirely up to her and that I will go along and support her in her decision. She had a pet scan today and we will see the doctor tomorrow. We will know then if treatment is working for her. I’m hoping for the best and trying to prepare myself for the worst. The positive is that there are a lot of people here who have such encouraging experiences that you can’t help but feel uplifted and hopeful after reading what they have gone through. It has helped me tremendously knowing that with the treatment options  they have today, it’s not an automatic death sentence for a lot of people. I lost my dad in 1991 to the beast, lung cancer, and he died within 5 months because his options were so limited. I have found through this sight that things have progressed a lot since then. I hope you will post how you and your Mom are doing. I will hold a good thought for you both.