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Questions about Diagnosis Procedure

Kathy G.'s picture
Kathy G.
Posts: 202
Joined: Dec 2012

Hello!

I am from the uterine cancer board, but my husband and I were advised last week his son has lung cancer. He had gone to ER unable to breathe and was admitted with a sac of fluid around his heart. They did several tests which included blood work, CT scan,and a scope down his throat. They discharged him after 2 days with a diagnosis of pnuemonia.

He already has COPD and asthma.

He was scheduled for a follow up with a pulmonary doctor on 3/31, but he was called in last week and told him he had lung cancer, and he'd be 'lucky to live til 40!' He also mentioned something about a trach. We thought he was then referred to an oncologist, but have found out it is his family doctor he is seeing this week.

It was my experience that my regular gynocologist referred me to a gynelogical oncologist for surgery, staging, grade and treatment.

Does a pulmonary doctor or lung cancer specialist treat lung cancer? Or are they one in the same?

We are confused why the pulmonary doctor would have made the diagnosis and been talking about survival and a trach given we are unaware if a biopsy was done in the hospital. Could a biopsy been done by collecting the fluids around the heart or when they did the scope? He did say they told him they removed some kind of blockage in the intestine.

Or were they unable to take a sample of his lung due to his COPD and asthma and therefore were able to diagnose by another method? Shouldn't he be talking treatment options with a specialist rather than seeing his family doctor?

He lives 1500 miles away so we are hearing of all this long distance. We are not sure if he is hearing what he needs to do or is in shock. We want to help, but not knowing the protocol makes it difficult and he is still fairly young and not used to dealing with something so serious.

Any input or feedback would be appreciated!

Kathy

 

Ladylacy
Posts: 769
Joined: Apr 2012

Sorry to hear about your husband's son.  Yes he needs to see a specialist.  His primary can't do anything but refer him and that is something the other doctor should have done.  While my husband's cancer was first laryngeal cancer and then a secondary at the cervical of his espohagus (rare) then spread to his lungs, he decided by then that enough was enough and declined all further treatment.   I know that if he had continued treatment, he would have been referred to a lung specialist along with a new oncologist.  The second oncologist we were using, in my opinion, wasn't any good.  In fact, when we saw him, his opinion was that since he wasn't having any problems, no treatment.  No problems, yea right, cancer spread to his lung and the tumor was back and larger at the cervical of his esophagus.  If my husband had decided to  continue treatment, we would have change oncologist.

As far as how much time he or anyone has, no one knows.  My husband's doctors never said you have only so much time.  He has been fighting cancer for five years and 2 years without treatment.  Yes he is now declining and has been on in-home hospice since September 2013.  So to me no one knows but the man upstairs how long we have.

Wishing you and your family peace and comfort.

jim and i's picture
jim and i
Posts: 1788
Joined: May 2011

Kathy, by all means he should have been refered to a oncologist. But, if he is on an HMO he has to get an approval from his Primary Care doctor first and the insurance company. That is what we are going through now with my mother. It has been a month since diagnosed and she finally goes to the oncologist on Monday. Also, if the pulmenary doctor saw him in ER he/she would have to refer to primary care for initial referal to oncologist.  Concerning a biopsy. They may have tested the fluid for cancer cells and/0r done a bronchial scope for a byopsy. Also could be they saw a mass on exray and are sending him for a referal from PC for biopsy to conferm.

Debbie

Kathy G.'s picture
Kathy G.
Posts: 202
Joined: Dec 2012

Dear LadyLacy & Debbie,

Thank you for getting back to me Smile

I really despise how insurance carriers dictate a patient's treatment! It is just SO wrong in my opinion especially when a life threatening illness is at stake.

Obviously we know nothing about his insurance, but it makes sense the primary care doctor would have to be in the loop. It sounds like he should get copies of any tests they ran while he was hospitalized so he had the written information regarding what they did or found.

I thank you both for sharing your information and pray our loved ones have an easier time rather than harder in their treatment journeys.

God bless you!

Kathy

dennycee
Posts: 836
Joined: Mar 2011

At the end of this note I am going to provide a link to a blog by a young woman who was diagnosed at age 37.  Her first treatment didnt work.  She researched mutations- (she didnt have the egfr or alk mutations)and requested she be tested for the ROS1 mutation.  She was right on.  Today she blogs for Cure Magazine and she is quite inspirational.  Also, you may want to get in touch with the Bonnie J Addario Lung Cancer Foundation.  They are spearheading an investigational study into patients who develop LC before age 40.  They will have additional resources for him.  

NCCN affiliates:  http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center

Addario Foundation: http://www.lungcancerfoundation.org/

 http://www.curetoday.com/community/tori-tomalia/2015/03/finding-your-lung-cancer-community

Also another important resource is Lungevity.org.  They can set him up with a phone buddy.  

Kathy G.'s picture
Kathy G.
Posts: 202
Joined: Dec 2012

Thank you deenycee for this info. I have been surfing the sites and reading the survivor stories for the past few days.

Unfortunatley, our son just moved and it will take up to 30 days to get his Medicaid reinstated in the new state he now resides in. So he cannot afford to see an oncologist at this time.

We hope he gets in to see one by the end of this month so we can then discuss some of the resources found above.

Bless you for taking the time to post this very valuable information. It is greatly appreciated!

Kathy

 

 

 

dennycee
Posts: 836
Joined: Mar 2011

While he is waiting for the new Medicaid to begin perhaps this organization can help with some of his needs: http://www.cancercare.org/

It can take some time to get a first appointment in the drs office so he should consider calling an oncologist office at the hospital he wants to go to and get that appointment going.  Also, most hospitals have a charitable program and they may help defray some or all of the early office visits or tests.  It's worth contacting the hospitals oncology social worker to find out and a visit with the social worker costs nothing.  

 Also the phone buddy programs at Lungevity.org and lungcanceralliance.org are free.  

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