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Stage 4 Options - Second Opinion?

Roasas23
Posts: 3
Joined: Aug 2016

Hello Everyone,

My dad (age 56 non-smoker) recently was diagnosed with Stage 4 Lung Cancer (Non-small cell Adenocarcinoma): mass on the upper left lobe, with plueral effusion and nodules on the right lung. PET scan was negative. The recommendation was chemo once every 3 weeks, and reevaluate after the 3rd dosage at Week 9.  

I felt as though at Stage 4, the physician would be more aggressive, so I'm debating a second opinion. I live in Texas, so MD Anderson is down the road. 

I was going to ask the forum to see if this is viable? The last thing I'd want to regret is at week 9, thinking I should have done a second opinion. 

Is this standard treatment for something that has not spread beyond the local area? 

Thanks for all of your help,

God Bless,

-Pete

z's picture
z
Posts: 1413
Joined: May 2009

Yes, A second opinion is always a good idea.  Please check out the Inspire health web site, there are many stage 4 lung cancer patients who post there and have had all the newest treatments.  I wish you and your father well.

jorola's picture
jorola
Posts: 237
Joined: Mar 2016

This is from this site and is very usefull in understanding staging. I agree in getting a second opinion. You Americans are lucky that you can do that. In Canada - not so easy

http://www.cancer.org/cancer/lungcancer-non-smallcell/detailedguide/non-small-cell-lung-cancer-staging

eclc
Posts: 18
Joined: Jul 2016

Pete,

 

You ABSOLUTELY should get another opinion!

 

When I read your post, there is so much I want to say to you…forgive me if this long but there are a few topics I need to address.  A little background on me:

 

I was diagnosed with stage IIA NSCLC when I was 34, that was 19 years ago (I’m actually 53, the same age as your dad).  Back then I was diagnosed at Portsmouth Naval Hospital and went for a second opinion at Bethesda Naval Hospital and then a third at Memorial Sloan Kettering in NYC.  The second and third opinions agreed with the diagnosis and treatment prescribed so it was pretty cut and dry.  I had my right lung removed and underwent some pretty heavy chemo and radiation.

 

Fast forward 19 years and now I’ve got Stage IV esophageal cancer thanks to that radiation I had for my lung cancer.  I was diagnosed at Walter Reed in Bethesda, MD.  I then went to Johns Hopkins (#6 Cancer center in the U.S.) and was told that surgery would be my only option.  I could not have radiation because I had had my lifetime limit for my lung cancer.  Chemotherapy would be best in conjunction with radiation so that was ruled out too.   According to Johns Hopkins, a very radical surgery was my only option.

 

I then went to Memorial Sloan Kettering (#2 Cancer center in the U.S.) and had a third opinion.  There I was told that brachytherapy would be the only treatment I would be eligible for since the surgeon there thought the surgery proposed by Hopkins was a bit too much.

 

Next I went to MD Anderson (#1 Cancer center in the U.S.).  There I met with Dr. Reza Mehran…I tell you this because I think that he’s a fantastic doctor (and I’m very selective).  Dr. Mehran told me that he felt I should not have the surgery that Hopkins prescribed because he felt that I would not survive the procedure.  He asked me to at least postpone my surgery to give MD Anderson an opportunity to give me their honest opinion.  During those tests, he found a nodule away from my esophagus making me Stage IV.  The significant of this is that had I had the surgery at Hopkins, and survived, I would still have esophageal cancer so the surgery would have been for naught. 

 

Dr. Mehran hooked me up with many specialists at MDA.  I’m going to end up getting chemotherapy for my cancer starting next Thursday.  Hopkins is going to administer the chemo but MDA is going to oversee the treatment.  In my opinion, Dr. Mehran both saved my life and is giving me a quality of life I would not have had if I had proceeded with the surgery.

 

Next…What is your doctor saying about the negative PET?  That strikes me as odd…I’m not a doctor but I thought a PET was a good indicator of whether or not something was at least metabolically active (which cancer certainly is).

 

Now for some advice:

 

Regarding your dad’s doctor:  It’s very important that he be comfortable with his doctor.   I always tell folks, “If you die, your doctor will have another patient, but your family will not have another you”.  I think that if you meet Dr. Mehran, you’ll see what I’m talking about.

 

You should not worry about ‘offending’ your doctor by getting another opinion.  If the doctor is a true professional, he/she should encourage you to do this. 

 

At the risk of running on and on I want to get this posted so that you can read it and fire back any questions you may have.  We can keep this discussion open on this board or you can email me through this site…the choice is yours.

 

Pete, I wish you and your dad the best…

 

pat

 

Roasas23
Posts: 3
Joined: Aug 2016

All,

Thank you for your responses. A little more ellaboration on my dad. The PET was negative, except for the tumor of course, pleural effusion and nodules.  Pat, I didn't realize that a negative PET scan may respresent cancer that's not metobolically active. I'll be sure my parents ask that question. Maybe this is why it's a little less of a dire situation? 

Right now, the medication he will be taking is Carboplatin, and Alimta, every three weeks, for 9 weeks and then evaluate then. 

Also, I wanted to ask if anyone here knew of someone who still had surgery, even though it was stage IV lung cancer. 

I think we will be going for a second opinion, just to be sure. But, Pat you also mentioned that it's very important to be comfortable with one's doctor. My parents seem like they have connected with theirs, so we shall see.  The only thing I worry is 9 weeks later it will have spread, but I don't want to think about that just yet. 

Any other info would be appreciated, and thank you all for your words. It's been definitely a tough 3 weeks. 

-Pete

jorola's picture
jorola
Posts: 237
Joined: Mar 2016

So you are likely ok there. My husband has stage 3b squamous. He was not a candidate for surgery as the tumor was too large and too close to the heart so sorry I can't help you there.

My understanding is MD Anderson is an excellant facility and can probably get him right away. I would be sure to check it out.

All the best.

eclc
Posts: 18
Joined: Jul 2016

Hi Pete,

The clarification piece...if you re-read my post (above) I didn't say that a negative PET means an inactive cancer.  I said that cancer is NOT negatively active...it gobbles up the glucose in a PET so it shines nice and bright.  Your dad's negative PET supports the nodules NOT being cancer. 

So that begs the question...how does your dad know that it's "Stage IV adenocarcinoma of the lung"?  The only way to be that specific would be to have had a biopsy.  You can't know what type of cancer it is without a biopsy.  A tumor in the lung is not necessarily lung cancer, it could be some other type that has metasticized to his lung. 

Regarding the Stage IV diagnosis...I haven't found anywhere on line where the second lung constitutes a distant metastisis.  I'll ask our fellow readers to chime in on that one.  Normally, stage IV means that it has spread to a distant organ or a distant lymph node...not sure about the same organ on the other side...anyone know the answer to this?

Sorry if I'm confusing the situation Pete, I would just want to be very sure that your dad has what you think he has. 

Don't rule out that second opinion too.

pat 

Roasas23
Posts: 3
Joined: Aug 2016

Thanks for the help Pat! No worries about confusion. We all want to be sure when we talk about cancer.

But yes the biopsy was actually from the liquid they extracted. Thats why they had it at stage 4, because it had spraad to the effusion. Not sure if that's a normal diagnosis. We'll definitely send it for second opinion. 

 

-Pete

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