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bacchus

Dad diagnosed Stage 4 lung cancer

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Dad(age 69) was diagnosed  on 6/20/18 in the ER when he went for shortness of breath.  His heart-rate was 165 and he was in a-fib.  They were able to get him down to about 85 and a normal sinus rhythm.  They did a chest xray and then CT then came back into the room and said he had a 8CM tumor in his mid left lung with heart/arties involvement.  This was somewhat surprising since he had been seeing the Pulmonologist since January of the same year.  Pulmonologists did multiple chest xrays and a low dose CT scan.  They all came back negative for cancer and they just said he had some COPD.  I am thinking they missed this.  Anyway they did a bronchoscope with biospy and his left airway is totally obstructed by the tumor and the left lung is totally collapsed.  They identified it as NSCLC but could not identify the type because the cells looked "raggity" under the microscope.  The oncologist said it doesn't matter sense most NSCLC are treated the same.  They are awaiting genetic testing to come back i'm guessing for immunotherapies/targeted therapies.  In the meantime he is being treated with 12 radiation sessions to try and open his airway.  He is also being treated for high calcium levels.  He has been in the hospital since 6/20/18.  They have stated they think the spot on his adrenals is cancer but he needs a pet scan to confirm.  He can't get a pet scan until he is release from the hospital.

So right now we are praying that the radiation knocks back the tumor and his calcium gets under control(they think the tumor is producing the calcium).  We are at our local hospital with a decent cancer dept in a medium sized state capital town.  Does this treatment plan sound correct at this point?  Should we go elsewhere?  How would we while he is still on o2 and iv's for calcium.  He can get up and walk around and is coherent.  Houston is about a 4 hour drive.

They are saying the avg prognosis for stage 4 is +/- 10 months with treatments.  I must admit i'm wondering if we are on the much lower end of that.  As a son i just want to know we went out fighting the best we could and i did/asked/got him the best care possible.  Any opinions or ideas or experiences to share?  Thanks in advance.

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Hi, bacchus, and welcome.   I'm sorry to hear about your dad--it's always a shock to hear about cancer, but I would think especially so since he's been seeing a pulmonologist.

I can't really comment on the treatment he's getting right now--it sounds like they are doing what they can to get him stabilized, which is the first challenge.  

Since you are close to Houston, I'd consider going to the MD Anderson Cancer Center--it's pretty consistently rated the number one cancer center in the country.  My very early cancer was found and treated at my local cancer center that is affiliated with MD Anderson, and I was very impressed with their multidisciplinary approach.  

The ten-month stat is scary, and not necessarily reflective at all of your dad's chances.  We have Stage 4 survivors here with over 10 years and counting.  

Glad you found us--others will be along shortly who have more experience with treatments other than the relatively simple surgery I had.

 

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Bacchus,

Welcome here.

I was diagnosed with an about 8 cm sized tumor blocking my right lung about a month after an X-ray for fractured ribs. While normally, lung cancer doesn't accelerate from invisible in an X-ray to 8 cm in a month, nothing about lung cancer is normal.   

I've never heard of cancer being a direct cause of hypocalcemia; chemotherapy yes but cancer no.  Of course, I'm mindful of my previous pronouncement -- there is no normal with lung cancer.

As far as radiation treatment to shrink the tumor and open his airway, I think that is a good treatment objective, especially because a biopsy couldn't classify the type of NSCLC.  There are three types of NSCLC and here, here and here are explanations of them all.  I'm not sure I'd agree with the oncologist's pronouncement that the type of NSCLC "doesn't matter." It certainly doesn't matter given his radiation treatment, but it matters a great deal choosing a chemotherapy recipe. So maybe he or she meant to say it doesn't matter now, for suitability of radiation treatment.

I think you'll find that radiation will in fact knock back your dad's tumor.  But, lung cancer is persistent so you'll need to be prepared for a second round of treatment.  This will likely be conventional chemotherapy or perhaps surgery if the PET scan clears any other metastatic sites.  If surgery is available as treatment, there will almost certainly be a post surgical chemotherapy.

Be mindful that there is dwell time getting admitted to a large, well known cancer hospital.  I know people who've waited a month to six weeks to be seen.  For now, and depending on the biopsy report, he may be adequately treated at the local hospital.  He's receiving a modified first line standard of care for non-surgically removable NSCLC.  Radiation is normally accompanied by an adjuvant chemotherapy dose (chemo given to kill cells in the blood stream or unseen cells) but radiation is the real workhorse in first line.  Depending on the biopsy, second line could be a combination chemotherapy (two drugs given together), say Taxol and Carboplatin, or a Targeted Therapy or Immunotherapy.  These last two therapies are newly emerged treatments and if the biopsy markers disclose suitability for either Targeted Therapy or Immunotherapy, then second line treatment decisions could be complicated.

Now for my experience, and especially since you introduced an average prognosis of about 10 months.  Nearly 15 years ago, I was given a prognosis of about 6 months.  These prognosis pronouncements are based on the best statistical information medicine has but the problem is the statical prognosis of a human being's life span is really, really hard to do.  Listen to this essay.  Stephen Jay Gould was one of the world's best bio-statistician.  Statisticians try and aggregate all possibilities (survival from x to y) and develop a central tendency to explain the most probable outcome.  Unfortunately, actual outcomes often vary a great deal from the predicted outcome.  The central tendency of +/- 10 months was developed based on data aggregated 5 years ago.  The treatment world in lung cancer has changed dramatically in just the last 2 years and these outcomes are not contained in your dad's projection.  I am not the only greater than 10 year survivor out there.  At our LUNGevity Summit in April, we had more than 30 greater than 10.  So my experience for your dad is if I can live, so can he.

Questions?  This is the place.

Stay the course.

Tom

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Wow thanks for the info and encouragement.  The radiation seems reasonable to get the lung working again.  The Medical oncologist seems to think he wouldn't get much chemo in him in his current state.  They do think he has a spot on his adrenal. Awaiting pet scan to confirm.

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Bacchus,  welcome.   Wow it has not been even 2 weeks since they found this.  So glad they were able to jump right in with radiation,

I lived twice in Louisiana. the first time in Slidell and the second in Abita Springs.  They have some good hospitals there.  I am waiting to hear from you

how he responds and if he can fill that left  lung up with some good air .

 

Donna G

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Yep that is the prayer we need at the moment... That radiation shrinks the tumor and the lung can inflate and the calcium levels get under control.  Once that happens we have a fighting chance to move onto the next phase of treatments.  He is on 6 out of 12 treatments today.

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I am so sorry about your dad. It sounds like you are getting the best treatment to stabilize him. I would talk to the oncologist about M D Anderson, Houston. I had all the preliminary tests near home, in Corpus. Then, I went to M D Anderson, Houston...where your dad can get the needed tests done if you don't want to have them done locally. My VATS (video assisted thorasic surgery) was done February 16 at M D Anderson by an amazingly skilled surgeon.  My followup chemo and radiation is being done locally. This is a great and positive site for information and support. Hugs and prayers.

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Good morning, Bacchus.  You've had lots of good info from everyone so I hope that helps you see all of this a little more clearly.  I'm stage IV - I was diagnosed in February 2016.  Ask me what I think about statistics 😁  .  My oncologist and I have an understanding that the stats are mostly nonsense (I cleaned that up).  I have skewed every stat he has thrown at me.  So, I ignore them and move forward.

I'm hopeful the radiation will help your dad.  Please don't hesitate to ask us anything.  We understand where you and your dad are.

    

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bacchus,

It sounds like your dad has started his journey in a quickness.  A cancer diagnosis is never easy, but especially when it is so unexpected.  For my mom's original diagnosis and the finding of a recurrence, she had a pretty good idea that it was lung cancer.  So we weren't completely caught off guard, but none the less, it's never easy.  My mom was 60 at her first diagnosis of non-small cell adenocarcinoma.  As Tom stated, there have many advancements in lung cancer treatment in the past 2 years.  My mom is now considered to be "advanced stage" - whatever that means.  I spent a good amount of time focusing on the grim statistics of lung cancer. And although I knew they were old and not reflective of the current treatment options available, it still bothered me.  Well, I can say that nearly 3 years after diagnosis, my mom is doing pretty well. She's on immunotherapy and her cancer seems controlled. We have had some really rough rides throughout the journey, but she's here and enjoying her life. I am hoping that this will be the same for your dad. 

I'm glad you found this site, everyone is very supportive and full of helpful information.  To me, they are the epitome of hope and survival.  And after meeting a few at the Hope Summit this past spring, they are true models of living life to its fullest despite a lung cancer diagnosis.  Please give my well wishes to your dad and take care of yourself.

Steff

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So it is my understanding you can't have a petscan while undergoing radiation treatments?  Does this sound correct?

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I believe PET scans are usually done several weeks to months after radiation is done mainly due to the high possibility of getting false positive readings from the inflamed areas that are being radiated.

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This seems like the only way to know how extensive the cancer is.  Seems like we need to know now but he is already in radiation.

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I'm guessing that knowing how extensive the cancer is probably would not change anything at the moment.  Getting that large tumor under control would seem to be the priority no matter what.  And chances are, the chemo he will most likely be getting after the radiation will work on the adrenal met, if there is one.  

Can you ask his oncologist about it?

 

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19 hours ago, LexieCat said:

Great--start making a list of all the questions you want to ask.  Hopefully you will have a better idea about the "game plan" after the visit next week.  :)

Hi, bacchus,

We'll be thinking of you and your dad next week. While you're preparing for his appointment, here is a list of questions for your dad's medical team that might be helpful: https://lungevity.org/for-patients-caregivers/asking-right-questions/questions-to-ask-your-healthcare-professionals

Please continue to share updates and ask questions. We are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Back in the hospital with A-Fib.  Dehydrated and calcium was 11.2 and tumor is probably pressing on his heart some.  Good news is the tumor has shrunk some from radiation and he is getting "some" air around it so the lung has re-inflated.  It is still pretty touch and go IMO at this point.  Still praying we can get a chance to fight.

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I am also mindful of just how difficult it is to see your dad in all this difficulty without being able to lend a hand.  Take some time for yourself, even if it is just a quiet moment.  Steel yourself for the battle ahead if treatment progresses to chemotherapy.  

Stay the course.

Tom

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He's back home....they kept him a night...he was dehydrated and they started him on a med for afib.  Hopefully he won't have anymore episodes of that.  He knows the importance of drinking a ton of water now.

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Yeah, we had a hard time getting my dad to drink enough water.  You might try getting him one of those thermal mugs that will keep the water nice and cold so he can sip on it throughout the day without constant refills.  I bought myself a water cooler and have water delivered so I always have cold (though it also provides hot) pure springwater whenever I want it.  Hope that, and the medication, does the trick.

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