Introduction

[Aub33]

Hello everyone, I am not the one with lung cancer, my dad is. We just found out 3 days ago, and although we have so much left to find out I find myself an emotional mess every time I start looking things up on the internet because it just kind of seems like survival is very unlikely. So I thought maybe reaching out to a community of others who have or are currently going through this would maybe be the positivity we could desperately use.

 

I'll give you a little back story on my dad.. he has been through a lot in the last 10 or so years, our first big health scare happened 10 years ago when he had a massive heart attack, we were told if he would have went to bed that night he would not have woken up, all of his arteries were 100% blocked except one that was 90% blocked.. he survived the bypass surgery and went on living a healthier happier life. 4 years ago he was in a head on collision with a semi truck and I am still not sure how he survived without more injuries or permanent damage than he had, it was truly a miracle. And it took him a few years to recover enough to start to have his life back again. And everything has been going really well until about a month ago.

He started having left side chest pains, and it went into his back and up his neck, he was also having chest pain with exertion. We all were worried it was his heart and his doctor thought the same thing, so he was scheduled for an angiogram this week to find out what could be going on with his heart. We were all preparing for bad news thinking he may need a stent or another open heart surgery. Tuesday 2 days before his appointment he woke up with shortness of breath, he said he felt like he was suffocating, and by night he hadn't felt any sort of relief no matter what he tried so we had him check his oxygen saturation and it was 82% so he went to the emergency room, and they thought it was maybe his heart as well and did an EKG, blood work up, and a chest xray. The chest xray came back and they said he had pneumonia, but there was also a mass in his left lung, so they ordered a ct scan, after those results came in they took him by ambulance to a larger hospital in a different city, we live in a pretty small town that isn't equipped to handle any sort of major issue. When he got to the other hospital they did an ebus procedure, and that's when we found out it was a malignant mass, we don't know what kind of cancer or if this is the primary tumor we just know that it is malignant and as if that wasn't enough we also learned that he had a pleural effusion and they needed to do a thorocenticas they said it would help with his shortness of breath and that they had to find out if the fluid is malignant, we are told if that fluid is malignant then he is automatically stage 4, and the prognosis will be very poor, right now he is stage 2b because the cancer was in the nearby lymph nodes but it hasn't spread to the other side, his mass is 4.8 cm and the doctor keeps saying because it is centrally located it is inoperable. I can't imagine life with out my dad, it is a terrifying reality that we could be facing. The waiting, wondering, and not fully knowing details has to be one of the hardest things to deal with.

[Susan Cornett]

Hi, Aub. Your dad has certainly had his challenges - he's tough! When do you anticipate results? Do you know if the docs are testing for genetic mutations? Both of these drive treatment options. I am a stage iv survivor - almost 3.5 years. Because of the advances in treatment, lung cancer just isn't the death sentence it once was. Depending on the site, surgery may not be an option. I read a statistic that only 17% of diagnosed lung cancer is treated with surgery so the doctor's statement follows that number. Since my diagnosis, I've had two recurrences and both were inoperable due to location. Fortunately other treatment options were available.

We are here so ask us anything. Someone in this community has walked in your dad's shoes and can help you understand the process. We know the waiting part stinks - it feels like it takes so long to get the process moving. 

[Tom Galli]

Aub,

Welcome here. We are a federation of lung cancer survivors or caregivers who love and tend those with lung cancer. Seems likely you've joined the latter.  Susan's given you very good information. Most important in her journey, and for many others in this forum, she was diagnosed stage 4 from the outset and is thriving. I was diagnosed stage 3B, had a year's worth of thoracic surgery removing my right lung and plugging leaks, and had 3 recurrences after surgery to my remaining left lung. After more than 15-years, I'm still here.

Almost everyone diagnosed or loving someone diagnosed looks up survival statistics on the internet (we irreverently call this consulting Dr. Google) and the conclusion is frightening.  The fright results from two factors: lung cancer is a deadly disease, and lung cancer statistics are not very accurate. This explains the accuracy problem. Fortunately, in the last 5 years, many new treatment methods have been introduced to our community and increases in survival are not reflected in the statistics because they are a 5-year moving average. 

Among these non-surgical methods are targeted therapy and immunotherapy (I've linked further information). The biopsy and follow-on lab test of the effusion fluid will give your dad's doctors information to determine suitability for these new methods. Moreover, advances in radiation oncology (IMRT, IGRT, SBRT and Proton Therapy) are a whole other approach to treatment, either alone or in combination with chemotherapy. So, there are means and methods even with your dad's complicated medical history.

So what is ahead? Unfortunately, waiting in the diagnostic phase of this disease is the most difficult to endure. Once the histological (under microscope) pathology determination is made, you'll know two things: is it cancer and if so, what is the type. Knowing the type of lung cancer is critical to designing a treatment plan. While histology yields a type, a further lab test will determine suitability for targeted therapy and or immunotherapy. This further lab report could take a number of weeks. And for most of us, the waiting is unnerving.

We used our waiting time to learn about my disease. This investment proved essential to my treatment outcome for it armed my wife (my caregiver) with relevant information to ask a "terribly preceptive question" about a potential treatment method that saved my life.  Here is a summary of lessons learned from my diagnosis and treatment that may be helpful to you and your dad.

You'll have many questions and this is a good place to tee-them-up.

Stay the course.

Tom

 

[Curt]

Hi Aub.  I’m sorry to hear about your dad.  Surviving a head on collision AND bypass surgery?  He is definitely a tough person.  That will come in handy with this battle.  Susan and Tom have provided some great insight and information for you regarding prognosis and new treatment options.  I don’t have anything to add to that.  Stay strong.  Check back in with any questions or just to vent.  We’ve all been, or are going, through it.  Hang in there.    

[Steff]

Hi Aub,

Welcome to the club no child ever wants to be in...I'm sorry you have been inducted.  I was too, nearly 4 years ago.  Roles definitely change when a child steps in as a caregiver or advocate.  I've done a bit of both since my mom's diagnosis.  As others have noticed as well, your dad is obviously tough.  So is my mom - that's one reason why she's still here today.  She's also VERY stubborn and refused to give up.  Her attitude and advancements in treatment is what got her here today with about 1 year of NED (no evidence of disease).  

I agree that the waiting, wondering, and thinking about worst case scenarios are one of the worst things to endure on this journey.  Since you've already seen the statistics and the grimness that goes with them, move on from them.  As Tom has stated, these statistics are old and do not represent your dad as an individual.  But you can use this knowledge to assist you in being a great advocate for your dad.  If you haven't already, start checking out Lung Cancer 101 on LUNGevity's main website.  They have great tips, information, and check lists.  This may help get your advocacy/caregiver juices flowing.

As you navigate this scary situation, please know that you are not alone.  We are here for you.  So, please feel free to reach out to us, ask questions, or just vent.  We all know how you feel.

Take Care,

Steff