Overwhelmed newlywed newbee needs a coach!

[pkeeton.2013]

Hello... I am new on this site, I am Patricia Wells. On April 15th I got married to my (now) husband Jason who I have dated for almost 10 years.

On March 15,2017 following a snow ski trip to Utah Jason and I returned home and about 4 hours later went to the E.R. because of a cough that Jason had that had been bothering him for quite sometime. It was the worst weekend of our lives. During the 3 day hospital stay Jason age 42 was diagnosed with stage 4 adenocarcinoma lung cancer they also found 8 tumors on his brain. He has just completed 2 weeks of Full brain radiation. His Pet scan has been done and they also found another possible tumor on his thyroid. We will be getting a biopsy of that next week. Once we have the biopsy results of the thyroid we will find out if jason is a candidate for immunotherapy or begin chemo.

As Jasons wife, I am so overwhelmed. It feels like treatment is taking too long to get here and I worry his cancer could be spreading while we wait. Jason was in the process of getting a new job at the time of his diagnosis and now doesn't know if he can or will ever be able to work again. Our bills are piling up and I honestly don't know where to begin or what I should be doing. Because of how advanced Jasons cancer is I feel like I have so much to do and in so little time and my emotions are overwhelming me. I could really some guidance as to where to begin because this has changed our lives so much and I don't know what to expect. My first mistake was reading the internet which devastates me. As long as Jason is breathing I believe there is hope regardless of what the internet says. I just don't know where to begin this battle or how and although I am hunting I feel like I am getting nowhere. Please help.

 

 

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[Susan Cornett]

Hi, Patricia. I'm sorry about Jason's diagnosis but glad you found this site. This diagnosis is scary and overwhelming and it just stinks.  I tell people to be sad and scared but move on to anger and use that anger to fuel the fight.  We have a lot of long term late stage survivors here. They give me hope every day.

What next? Take a deep breath. When family and friends ask what they can do to help, tell them what you need- a meal cooked, laundry folded, whatever it is you need. You and Jason have a new normal and that will mean leaning on others. I had a hard time with that but I'm over it now! Get a journal. Take it to every appointment to take notes. Jot down questions between appointments. 

You mentioned the possibility of immunotherapy so I presume his team is testing for mutations? There are quite a few members of this forum with genetic mutations who are finding great success with immunotherapy.

I am a stage IV adenocarcinoma patient. I was diagnosed in early 2016 with mets to my thyroid (which by the way is very rare). My primary and Mets tumors were surgically removed and I underwent chemo. I am currently going through chemo and radiation for a recurrence in my chest.

Please keep us posted and ask anything.

[BridgetO]

Wow, Patricia, you have a lot on your plate! I agree with the previous post about asking for help. This site is a good place to find support as well as information. Good luck to you and Jason. Hang in there! Get as much info as you can, but don't get too bogged in statistics.Each person is a case of one. 

[pkeeton.2013]

Are saying that your lung cancer spread to your thyroid? The doctor told us if it was cancer it would not be lung cancer it would be a cancer unique to itself..he called us later and asked us to get a biopsy before coming back in.. could he have been wrong? I think he is a fairly new doctor.


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[pkeeton.2013]

Hi, Patricia. I'm sorry about Jason's diagnosis but glad you found this site. This diagnosis is scary and overwhelming and it just stinks.  I tell people to be sad and scared but move on to anger and use that anger to fuel the fight.  We have a lot of long term late stage survivors here. They give me hope every day.

What next? Take a deep breath. When family and friends ask what they can do to help, tell them what you need- a meal cooked, laundry folded, whatever it is you need. You and Jason have a new normal and that will mean leaning on others. I had a hard time with that but I'm over it now! Get a journal. Take it to every appointment to take notes. Jot down questions between appointments. 

You mentioned the possibility of immunotherapy so I presume his team is testing for mutations? There are quite a few members of this forum with genetic mutations who are finding great success with immunotherapy.

I am a stage IV adenocarcinoma patient. I was diagnosed in early 2016 with mets to my thyroid (which by the way is very rare). My primary and Mets tumors were surgically removed and I underwent chemo. I am currently going through chemo and radiation for a recurrence in my chest.

Please keep us posted and ask anything.

I responded but did not hit the arrow. Thanks for sharing. I did post another question if you could respond it would be greatly appreciated.


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[Tom Galli]

Patricia,

Welcome here.

You asked what can you do.  Here are my thoughts.  First, realize that many of us on this forum are late stage (IIIB or IV) lung cancer survivors and we are still alive.  The point of interest to you and Jason is: if we can live, so can Jason!

Second, if income is a problem, consider filing for Social Security Disability.  Here is the information. Gathering all of the information necessary to file will keep you busy and give you something productive to do while waiting for the results of a thyroid biopsy.

Next, the likely reason your doctor is asking for a thyroid biopsy, as Susan relates, is adenocarcinoma rarely spreads to the thyroid.  Jason's oncologist is trying to eliminate the possibility of two different types of cancer.

Jason will almost certainly receive chemotherapy as a minimum.  The recipe will depend on the outcome of the thyroid biopsy.  Here is information you may find useful in getting ready for treatment.  Step one does not apply, and my wife performed step 4 for me. She read everything she could find about my disease and here is a good place to start.

And, to balance information you found on the internet, consider reading this on survival statistics, and listen to the Gould essay linked in the post.  I believe attitudes toward treatment and outcomes matter and I learned this from Stephen J. Gould.  

You both have time.  There is nothing good about a lung cancer diagnosis but adenocarcinoma is the most treatable form of non small cell lung cancer.  I know many who have undergone conventional chemotherapy as first line treatment, then moved on to targeted therapy as second line. In fact, some targeted therapies have become so effective, they substitute for conventional chemotherapy.  I knew one lady well who lived for 10 years taking a pill form of targeted therapy -- a drug called Tarceva.  She was elderly when she was diagnosed and passed away from a heart attack in her late 70s.  

You may have substantial time.  I celebrated 13 years of life after diagnosis in February.  Treatment wasn't easy but it was effective.  I am convinced I am alive because my wife became a subject matter expert on lung cancer and I worked hard to achieve a sanguine personality.

Stay the course.

Tom

[Susan Cornett]

Patricia,

It is very rare for lung cancer to spread to the thyroid. My oncologist and the ENT had only seen it a combined total of 5 times! I was also told that less than 5% of thyroid nodules are cancerous. I had two nodules and both were cancer. One was metastatic lung cancer and the other was thyroid cancer. My thyroid was removed last summer.