Second opinion didn't really change things so why am I reeling?

[Alex K]

After receiving a stage I NSLC diagnosis at NYU Langone, specifically mucinous adenocarcinoma, my dad decided to get a second opinion at Memorial Sloan Kettering. The short version if you didn't see my introduction post is that he had a mass removed from his lung, with all tests prior indicating that it most likely wasn't malignant - low SUVs, negative for biomarkers of ALK and EFGR mutations, etc. - but the removal was done in lieu of a biopsy as a precautionary measure. The pathology for the full mass found that there was indeed cancer after all, and that he'd need a lobectomy.

At MSK, he was told that they absolutely would have done a biopsy as well as more tests to ascertain the specific kind of cancer, because it's riskier to have do in two robotic surgeries what could be accomplished in one. The doctor there also indicated that more lymph nodes should have been tested (four different stations of lymph nodes were removed and they all tested negative). So my dad is most likely switching his treatment to MSK and is very disappointed with the experience at NYU Langone. Although they do agree that the lobectomy would be the right treatment to pursue at this time if MSK's own analysis corroborates the diagnosis from NYU.

I'm experiencing a bit of whiplash from all this. I'm not completely sure, but I think what the MSK surgeon was communicating was that a biopsy would have been a less invasive procedure than the VATS that my father had for the mass removal, so theoretically, together with that and several other tests, some of which may not have been done at NYU (PET scan, brain MRI, CT scan), he would have been able to identify the cancer from a biopsy alone, and then proceeded with the lobectomy from there. I want my father to feel that he is getting the best care possible, and I will admit that for a 71-year old man for whom English is a second language and who is still culturally very Greek, the bedside manner of the NYU doctor is not the most delicate. At the same time I can't help feeling that given the tumor size (2.5cm) that the cancerous cells could still have been missed even with a biopsy from MSK. I want my dad to feel (and I want to believe this too) that he didn't make the wrong decision by not getting the second opinion earlier, and that ultimately, if MSK's analysis confirms the need for a lobectomy - that this isn't that different from what we would have done even if we never got a second opinion at all. I know I'm vastly oversimplifying things here, so I invite all the criticism and scolding that's merited so that I can figure this out and better understand how to move forward in supporting my dad's treatment.

[Tom Galli]

Alex,

There is no criticism or scolding of anyone for any reason on this forum. We are about supporting patients and those who love and care for them. Regardless of surgical methods or number of lymph nodes tested, your dad had a cancer tumor that is now removed and that is a good thing. Moving forward, the most important thing you can do for him is to find a medical oncologist who will follow your dad after surgery. Lung cancer, even at early stages, has a nasty tendency of recurrence.  Most of us have medical oncologists who follow us after surgery and my recommendation is you help your dad find a physician who he is comfortable with. The oncologist will likely suggest a recurrent CT screening program involving perhaps quarterly scans and progressing to longer intervals over time.

Hopefully, your dad is "one and done", but if recurrence happens, it is best to catch it early. 

Stay the course.

Tom

 

[Karen_L]

I'll echo Tom here. With lung cancer, it's all about moving forward. You did what you thought was best based on the advice you got. 

Moving forward, it sounds like you have more confidence in MSK, so just do it ASAP. Follow up on getting All The Tests, or having a review of the ones he had: PET could help provide more info about node involvement; MRI of brain is important for establishing a baseline because the central nervous system is one place lung cancer likes to travel.  

For myself, for what it's worth, I did not seek a formal second opinion. I listened to my primary care doc, who urged me to not delay treatment, and a conversation with a former pulmonologist I deeply respect, who also urged me to get going with treatment. So, not everybody even does a second opinion. 

I think you can reassure your father that he responded to the situation at hand and should celebrate that. I mean, it sounds like all the visible cancer was removed. Focus on that and there's no need for self-recriminations. It's time to focus on living a full and rich life, while getting that care with MSK established. 

And, please know that we all experience whiplash-- that's a great was to describe it-- no matter what our diagnosis or initial action. There's lots of emotions to unpack after something like this. Maybe a counselor could help. 

 

[edivebuddy]

A second opinion doesn't need to be different.   And because of the National Comprehensive Cancer Network and the national cancer Institute, they rarely are substantially different.   I had 3. All saying basically the same thing. 
I believe with every ounce of my body that diagnosing cancer even one day earlier, can be the difference between life and death. There's only one way to diagnose cancer.   That's With a biopsy.   There may be different ways to get it but a surgical biopsy is the most accurate.   Doing it a different way is not a guarantee for success and might actually even lead to delays in diagnosis and treatment. A needle biopsy can often come back non diagnostic.  l know someone that had two non diagnostic needle biopsies performed at MSK before a surgical biopsy 

Getting a physician  your dad is comfortable with is so very important.   Your dad is going to be spending a lot of time with them in the coming years. Your dad has to know they're doing things in his best interests and are listening to his concerns. Mine is short blunt and to the point.  Many do not like that. I do. But he does listen includes me and my wife in everything. 
Now a surgeon I just want to be good.    The more experienced they are the better. The decision to have surgery is one thing. Once that decision is made I just care about skill. 

as to the other tests I'm no physician but I can surely read.  PET/CTs are part of the recommended diagnostic process for all lung cancers.  An MRI is not.  Not many insurance companies including Medicare will pay for an MRI for stage 1 lung cancer during staging unless it's deemed medically necessary.   The NCCN guidelines start at stage II for non small cell. MRIs can be had cheap in NYC so that can have a huge impact on availability and what tests get done.  
 Stage 1 systemic treatments are generally not done. But may be recommended based on the characteristics of his tumor and the resuls of the histology and biomarker testing. Some features can make it more likely for lung cancer to spread or come back. That's why you'll see so many things tested for even though there are no treatments for them.  after the results of the pathology, histology,  and biomarker testing results are in you should have a referral to an oncologist to discuss whether further treatments are recommended.   This is also another point it would be best to get a second opinion.  If you want different opinions this may be your best shot

[Alex K]

Thank you all for your responses and feedback, this is extremely helpful and I am grateful to have found such a caring and knowledgeable community to turn to at this critical time in my father's health journey. I think the point you've all made about seeing an oncologist and others on the hospital's lug cancer team is a crucial one - right now my dad is seeing the thoracic surgeons, but following the surgery he may not be dealing with that kind of doctor again, so it's as important to do the homework about the oncologist offerings at each hospital and how they respectively measure up and how he feels when he sees and speaks with them. I will emphasize this point to him because I think that should be an important part of making the decision about whether to stay with NYU Langone or fully switch to MSK.

[Alex K]

Just a quick update on the latest news from my dad - the MRI and additional scans found no metastasis of the cancer beyond the site in which it was identified, and MSK's analysis of the tumor was pretty much in full agreement with that of NYU. I considered that a positive, but my dad has decided to make the full transition to MSK, so that means a delay on the lobectomy (it was supposed to be September 20th, now it will probably be mid-October following a consultation at MSK). I'm pushing my dad to also meet with the oncologist from whom he would receive care after the surgery, and it feels like he's kind of humoring me in conversation but not really taking it seriously because he seems to think that after the surgery he'll never have any reason to worry again. Since he's being evasive and not wanting to deal with this, at least on my hearing, I'd like to be proactive and I've been researching the medical oncologists specializing in lung cancer at MSK. I'm considering just reaching out directly to the team at MSK via his patient portal to see about getting specific names, or even just more information about likely post-surgery steps, but I'm not sure if it might be too early for that 

[edivebuddy]

There's not a lot you're going to be able to accomplish without your dad's okay.   The medical staff will not discuss it with you unless your dad approves. 

At 1c systemic treatments are generally not going to happen unless there are features that make the cancer more at risk for recurrence or spread.  That's why the oncologist.   They will take the pathology and genetic reports and come up with a plan.   There m ay or may not be reason now, but it will take until after the pathology from surgery for a complete picture.