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Hello I am so scared.....


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We just found out my Dad has stage 4 lung cancer. He had a mass on his chest x-ray and then a CT showed mass on lung, liver and adrenal gland. What is odd is they showed the CT to my parents and told him he is stage 4, but have not done biopsy, bronchoscopy, etc. Has anybody else been told they are stage 4 with only CT? I guess I am hoping this is a nightmare and maybe a bronchoscopy will say otherwise. My identical twin sister died almost 7 years ago at 31 years old, from leukemia leaving behind a beautiful little girl with no mother, and then my brother died at 42 years old, in June 11 after minor hernia surgery. He was overdosed in his IV on Dilaudid. My poor parents and I have not even buried him yet next to my sister and we just got the news this week that my Dad has cancer??? I don't know how one family can endure so much pain but I cannot lose my Dad too. They are survivors of Nazi occupation and escaped many years later during the Russian Revolution from Czechoslovakia. They are strong and have endured so much. He is 77 years old and has chronic kidney disease from Type 2 diabetes but has always managed it well. He has not needed any meds or insulin for the diabetes because he was so healthy. Can he get treatment being type 2 diabetic? He was a smoker and had quit when he was about 40 years old. He had quit cigarettes when I was very young, and then had smoked cigars and pipes but went cold turkey when he was 40 with all of it. I was so hoping his risk would have gone down but I guess with all of he heartbreak it left him susceptible? I do not know where to go for answers. He is at my brother's house in FL right now helping to take care of his business with my mom. I had to come back to take care of my daughter and my twin's daughter and take FMLA from work. We live in Chicago though and they would go down there just be with my brother for a few months here and there. Do they go to Moffitt in Tampa? Or Mayo Clinic in MN, Northwestern, U of Chicago? Can somebody guide us on where to get started? This doctor who diagnosed him was so rude because when they found out that my parents were suing for medical malpractice over my brother within the same hospital system (not sure how the doctor found out) so they refused to treat him but I want him at a better place anyway. I am so broken and would be grateful for any advice or any words of wisdom. Is there anybody out there stage 4 that has beat it??? Hopeless in Chicago, Linda

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Hi LInda.  Glad you found us.  Sounds like your Dad has led a very challenging life.  He must be a tough guy.  Is it not even 2 months since you lost

your brother?  Sorry you lost your twin sister 7 yrs. ago, that also had to be so difficult.  He really needs to have a team and a plan to fight this battle.

He can get treatment with type 2 Diabetes .  He will have to watch his sugars etc. carefully.

 

Mayo in my state Minnesota is very good.  Is there any place closer to home? 

 

I was not Stage 4 but close, Stage 3 B  .  I survived,  Please keep us posted on how you and he are doing and what plans will be.

 

Donna G

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Linda,

 

Welcome here.  First take a breath.  

 

Second, find a doctor you are comfortable with.  Ask your dad's general practitioner for a recommended oncologist.  Ask your general practitioner for a recommendation.  I found doctors through doctors.

 

Take some time to read into the disease.  There is a wealth of information on this blog.  I like the American Cancer Society (ACS) because explanations are simple.  You might find information on lung cancer staging at one of two places on the ACS website - here www.cancer.org/cancer/lungcancer-smallcell/overviewguide/lung-cancer-small-cell-overview-staging or here www.cancer.org/cancer/lungcancer-non-smallcell/detailedguide/non-small-cell-lung-cancer-staging

 

I don't know that I'd say I beat cancer but I've lived 11 and 1/2 years after diagnosis but it took more than 3 years of active treatment.

 

You'll have more questions and feel free to ask.

 

Stay the course,

 

Tom

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Thank you so much for responding. We need to just start with getting more tests at this point. I was so surprised they just blurted to him it was stage 4 just from a CT scan? Can anybody tell me where they were treated? We are in the Chicago but yes, we will start with his doc! Thank you so much for helping because we are so lost.

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Linda,

 

I was treated by an oncologist who, at the time, belonged to a small amalgamation of medical and radio-oncologists in Texas. They diagnosed and treated most forms of cancer through clinics distributed throughout the state.  

 

More than a decade ago, my clinic was a small operation.  Now it is larger but at the time of my diagnosis, one still choose a doctor not a company.  I'm not sure that is the case today.

 

I prefer the treatment setting of a small and independent clinic rather than a large hospital.  The full service clinic where I was treated had all the diagnostics and equipment to administer conventional radiation and chemotherapy but instead of treating more than 50 patients at a time, they had but 10 infusion stations.  A smaller treatment setting was preferable for me.

 

You'll likely hear the words "standard of care" in your discussions with your father's doctor.  Once the doctor is confident about the type and stage of your dad's disease, the first series of treatments (assume chemotherapy) will confirm to a "standard recipe" or standard of care.  So if you get treatment at a large medical center, a cancer clinic, or a specialized cancer hospital, the type of treatment administered will likely be the same (it will conform to the standard of care).  This first series of treatments is often called "first line" treatment.  If successful, then celebrate.  But mine and most other advance stage lung cancer patients require additional treatment, called second line or third line to arrest the disease.  The recipe for these treatments is suggested by a standard of care but is driven more by the physicians knowledge and skill.  So second line and additional treatment is where the physician's judgement, experience and intuition are critical. 

 

Stay the course.

 

Tom

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Linda,

 

I am so sorry you are having to deal with so much.  I don't have any advice on a good place for treatment but I'm sure there are members here who can help.

 

Please keep us updated on how you're doing ((hugs))

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I first heard the words that I had lung cancer based in an X-ray. The size of the mass was what they based it on. In following days I had the ct, pet, mri and bone scans and two biopsies to confirm primary on lower left with mets to right, lymph nodes and pleura.

My dr did not give me much hope, 10-15 months with treatment. That was in 10/10. My mom always said I would be late for my own funeral and she was right. (Tumor humor).

Because he quit smoking so long ago, the possibility of his biopsy may show an actionable mutation is increased. By actionable mutation, I mean that he may test positive for an EGFR or ALK mutation and be offered Tarceva or Xalkori instead if a standard chemo. Please let us know what the outcome of the biopsy is.

If he is comfy in Florida then, by all means have him seen at Moffet.

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Hello Linda, welcome to the group. I am sad to hear that your ad has already gone through so much. It sounds like you would benefit from our LifeLine program. Maybe we could find you a mentor in the Chicago area? Here is the link if you would like to go ahead and fill out some primary information: www.LUNGevity.org/LifeLine Please keep posting and letting us knwo how you both are doing. 

 

Sending you positive and healing energy,

Cindy

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Linda,  

I've been thinking about you and your dad.  Give us an update when you can. We also have resources in the Chicago area that we can help with as well. 

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We go for mediastonoscopy and bronchoscopy tomorrow morning here in Chicago. I'm so scared for my Dad right now because everything that could go wrong when my twin sister had leukemia, did go wrong:( my brother died of a drug overdose due to doctor's negligence, after minor surgery and we were told they do thousands a week so we don't have a bit of good luck in this family:( I also was so hoping to hear from people in Chicago so I can find recommendations on a place for treatment. we chose to stick to the first place for biopsy that we consulted with because he is getting so weak and we just need some answers asap. He is so worried about burying my brother by my twin, he cannot focus on any doctors or decisions and since it is all on my shoulders, I feel responsible for picking the best place for him. My mom just cries all day on him so that is not helping him and she makes him take all the calls and visitors for people learning about my brother and he should not be dealing with that at all but I work full time and cannot be there just yet until they approve my FMLA at work but I also have kids to take care of. I feel so selfish fur even ranting on because my dad is the priority. Does anybody on these boards have referral to the best place in Chicago??? Thank you again to everyone.

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So the doctor who just did the mediastonoscopy said they already tested a couple of lymph nodes right after they got them out and it is indeed positive for cancer. We have not had a PET scan yet. I'm waiting in the lounge while he is in recovery for two hours. With lymph node involvement in the mediastinum is there any hope?? Is it automatically stage 4 because it's in the lymph nodes?? We have to wait a week to find out what type of cancer. Is there any hope at all for stage 4??? Thank you all so much .

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I paint a toenail red for each year I survive late stage non small cell, squamous cell, lung cancer.  This year, my wife needed to join me in celebrating 11 years.  Diagnosed on February 4, 2004, at times in my treatment, there was only hope.  There is always hope.  If I can survive, so can your Dad.

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Congrats Tom!!! That is so hopeful! We got a blood test back today and oh my goodness not one thing was normal???! !! His WBC was sky high, platelets sky high, ......does that mean it's everywhere? It will be so hard to wait a week for results. And his kidney function #s were horrible.??? Is this normal for a solid neoplasm cancer???

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We finally found out yesterday my dad has "metastatic poorly differentiated adenocarcinoma" in his left upper lobe of his lungs. Left side lymph nodes were positive for cancer and right side and middle were not. Not sure if that matters anyway since they think it is in other organs so I think that still puts him at stage IV? 

 

They think it is in his adrenals and liver but PET scan is Monday. MRI is Thursday next week which seems so far away again.

 

I just lost my twin and my brother but I will not lose my father - we have to do something to try and save him. We are all falling like dominoes:( My mom could not even come to the appointment yesterday she was so distraught - she has been hospitalized with very high blood pressure since my brother died over two months ago:(

 

Now I am just torn on whether we stay here in Chicago for treatment or go to Mayo or maybe MD Anderson? Will they do something different in Mayo or MD perhaps that they would not do here? Any thoughts on that? Has anybody had it in their adrenals and liver and there was still hope? 

 

Any thoughts would be gratefully appreciated!

 

Linda

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