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Posted

Hi all,

I'm reaching out in the hope to get some hope. My family and I are in the doom and gloom stage of a recurrent cancer diagnosis.  My mom just received her 1 year "all clear" in April, but continued to have trouble breathing and had a terrible cough within the year after her treatment.  She had her upper, right lobe removed and went through chemo and radiation for 12 weeks because the surgeon was unable to remove an all of the cancerous cells in her lymph node (which he wasn't expecting).  She just had a biopsy Friday of a tumor on her right bronchial tube.  Her pulmonary doctor was 90% sure it is cancer and the same type she had before, but we are still awaiting final word that it is cancer and  what kind.  

We are so deflated. This is worse than the first diagnosis.  It all seems so final now, that there is no hope. I am a planner, so I am obsessively searching the internet to see if it's possible to have the tumor surgically removed (her pulmonary doctor says no) and if you can have radiation in a similar area as before. We are old school thinking so we think we always need to cut the cancer out of us and are so afraid to hear that surgery isn't an option and possibly not even radiation.  So them I'm left with the question of whether or not to trust immunotherapy (something that goes against my old school thinking).

I am so desperate to hear that it's all going to be okay, but am scared that it isn't going to be.  I hear a lot about 1st time cancer survivors, but not a lot about 2nd time survivors, something that scares me even more.  I know that at the end of the day I will pull myself together and help my mom get through this, but my biggest fear of losing her too soon seems to be coming true. Anyway, that's my current situation and my very sad introduction.  I am looking forward to reading hopeful and helpful posts to help me get my mom through this trying time.

Steff

Posted

Steff,

I am a fourth time cancer survivor. I had 4 recurrences after reaching a state of no evidence of disease (NED). So here is the hope I offer, if I can live so can your mother. 

Lung cancer is persistent. At some level, recurrences should be expected. Take some time to get acquainted with this site. Most of us were not "one and done" survivors. But we are here. 

Let us know the type of lung cancer your mom has (for example non small cell Squamous cell lung cancer). Those with a similar type can chime in and tell you of their experience. 

Stay the course. 

Tom

Posted

Thank you Tom, I really appreciate your response.  Today is better than yesterday, we at least know that her surgery to have a stint placed in her bronchial tube will be no later than early next week to help her breathing. We are supposed to have the results of her biopsy this week, so I will definitely post once we know for sure the type of cancer. Thanks again for taking the time to respond. Have a good day.

Posted

Hi, Steff,

I am sorry that you and your family are going through this again. Tom is a great example of a long term survivor who has lived through recurrences. Please keep us posted on your mom's surgery and biopsy. Once we have more information, we can connect you to others with a similar diagnosis. We have many resources for patients/survivors and caregivers, so please let me know if you'd like to learn more about our support program. We are here for you.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

Posted

Thank you, Lauren. My mom had surgery to insert a stent into her trachea last night. It was successful and she is breathing better than she has been in months! She feels so much better today and is ready for her fight. We have no treatment plan yet, but will likely have one soon. All I know now is the "mass" is on her trachea, where it branches off to the bronchus. Her pulmonologist says the location makes it inoperable. It is the same type of cancer she had 1.5 years ago - non-small cell adenocarcinoma (if I recall correctly). I am thankful for these forums and for folks like you to share your knowledge. We were confident with our first treatment plan for the first go 'round, but with this recurrence and it being inoperable, I know we will be second guessing ourselves as to what the right thing to do is. So I will definitely be reaching out to all of you for information.

Posted

Steff,

Was your mother's current cancer biopsied? if so, ensure the biopsy sample is tested for biomarkers.  There have been many advances in treating certain forms of non small cell adenocarcinoma and these are the emergence of targeted therapy treatments.  Read about targeted therapy here

It might be time for your mom to see a medical oncologist for development of a treatment plan.

Stay the course.

Tom

Posted

Thanks Tom, 

Yes, her cancer was biopsied and they are currently "studying" it.  When we meet with her oncologist (probably next week) I will definitely ask about the biomarkers - thank you for that information as I hadn't heard of it before and will research it more before her appointment.  

Posted

Steff,

Here is more information on biomarkers to read.  You will note that biomarkers are indicators that may suggest your mother can benefit from Targeted Therapy.  These therapies are very potent and results are remarkable.

Post if you have more questions.

Stay the course.

Tom

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