Has sufficient info been collected for dx and immediate sx???? - 1260891

agent99
Posts:40

"there are some patients who may be well served by leaving treatment options in their back pocket, if ... & the doctor can overcome the reflexive sense that if you find something called cancer it needs to be treated aggressively & immediately." Dr. West

Thank you Dr. West & Dr. Creelan for easing my anxiety over the surgical treatment approach. I feel I need to step back a bit after reviewing the conversation with the pulmonologist & the pathology report & question whether the surgery needs to be performed ASAP, if additional characterization by wedge biopsy would be worthwhile or if watchful waiting makes sense? Statements like, "It's lung cancer, you don't play around, can spread," & glossing over whether or not the cancer is aggressive or indolent raises red flags especially after reviewing Drs. Spigel, Yankelevitz & West presentations. We were told that the 3 main questions are: is it ca or not? Is it SC or NSC? Speciation? In this case "speciation doesn't make huge difference, just it's surgical, limited, get it out."

The path report states, "+ for rare clusters of NSCC, immunophenotype consistent with bronchogenic adenocarcinoma." The word "rare" does not convince me that sx needs to be done ASAP. I have not been able to locate any references stating that immunoreactivity is diagnostic (+ cytokeratin 7, 8/18 & TTF-1 and - cytokeratin 20, 5, P63, synaptophysin, CD56).

My husband does not want sx, let alone lung removal. As his advocate, CG & DPOA these uncertainties weigh heavily but I do not want to postpone the inevitable & increase risk of mets. Am I missing something?

Respectfully,
Lisa

67 yo smoker; NPH, 2 TBIs.
4/13 Pre-sx CXRs clear. 11/8/13 CT scan for AAA shows lobular mass in right posterior hilum, 3.5x2.4 cm straddling major fissure not present in 2012. CT;11/21/13 PET/CT Scan - right posterior hilar/perihilar mass extending into lower lobe superior segment, SUV 8.7. 11/22/13 Bro

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Reply # - December 6, 2013, 03:12 PM

catdander
Posts:

Hi agent99, I understand your need to make sure you're doing the right thing for your husband. I'm afraid it's impossible for our doctors to say what is best for your husband from just an online discussion. There are too many factors that come into play, not the least of which is what the patient wants.

You're asking the right questions and of course it's important to get it right before rather than after. If your husband's surgeon isn't willing to have an open discussion about the issues important to you then a 2nd opinion may be in order. This is also an excellent blog on all the many reasons one might get a 2nd opinion. http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…

It's important that the surgeon is a dedicated thoracic surgeon. As opposed to a general or cardiothoracic surgeon a dedicated thoracic surgeon does solely thoracic surgeries. Not all hospitals have one. Dr. West wrote, "But the general rule always applies that especially for a role like a surgeon or radiation oncologist, where technique is a critical element, outcomes tend to be best for those who are more specialized and experienced.", http://cancergrace.org/cancer-101/2013/05/10/orienting-to-the-roles-of-…

You mentioned knowing the pace of an individual's cancer. That is really a question that can only be answered with time. In the case of someone with possible curable intent time really is of the essence.

Have you read this any blogs about elderly/frail people who are looking for less invasive options, such as these? http://cancergrace.org/lung/category/lung-cancer/special-populations-in…

hope this is helpful,
Janine

Reply # - December 6, 2013, 05:20 PM

Dr West
Posts: 4735

As Janine says, the last thing we'd want to do is tell someone we don't know who has a confirmed cancer that they shouldn't get treated. That said, I think it's very wise to not be reflexive, and many experts recognize that there should be a more individualized approach rather than following very simple rules.

It might be very helpful for you to seek a second opinion. That doesn't preclude moving forward with surgery, but it also acknowledges that there may well be room for different approaches rather than a reflexive one.

Good luck.

-Dr. West

Reply # - December 7, 2013, 01:30 PM

agent99
Posts: 40

Dear Janine and Dr. West,
My words cannot adequately express my feelings of gratitude & respect for CancerGrace. I'm definitely having a communication problem since even my scientist brother responded to my last email as both of you had on the issue of seeking a second opinion. Frankly, I am embarrassed that I crossed the line into the "medical advice" zone. My intent was to get a generic explanation of immunoreactivity and a reaction to the terms rare cluster in the path report. Today I have watched several excellent cancergrace podcasts that have resolved my questions. So that you can choose not to read the remaining 1K characters I would like to state unequivocally that I am now convinced that it's cancer & surgery will be scheduled ASAP at the Monday TS appt.

A brief explanation: Perhaps it was a combination of shock, grief, disbelief, wishful thinking, denial...that finding a no node, no mets tumor would necessitate the removal of the entire lung. The misfortune of the tumor's location (straddling 2 lobes) clouded my understanding of the serendipity of early detection. Thinking that since I didn't find relevant hits when I searched immunoreactivity led me to the question, what in the world? Searching on cytokeratin uncovered the treasure chest! And my sweeties' desire to resurrect his career this spring semester after his bout with neurological disease caused me to extrapolate the concept of watchful waiting for < 8 mm nodules onto his 35 mm mass.

The last thing I want is to take up more of your valuable time. So once again, thank you Grace and all the extraordinary people who participate on this site.

Best wishes,
Lisa

Reply # - December 14, 2013, 08:28 AM

agent99
Posts: 40

This is an update - no questions to answer, may be elicit commentary. If this is the incorrect place for this please tell me.

Intellectually I knew we needed a second opinion but I was reluctant because everything was moving so fast. I kept thinking that if I stopped the speeding bullet then the "cure" window promised by surgery may close on us. Thanks to Dr. West, Janine, cancergrace, the insistence of my "little" brother, access to medical records, fedex and email, I was able to get a different assessment of the situation from Dr. Shamus Carr at University of Utah. Just 10 minutes before seeing the surgeon on Monday, Dr. Carr sent a bunch of concerns to raise during the appointment. His opinion was that my husband is not the stellar surgical candidate that we have been led to believe and his minimal COPD is rather bad COPD in the upper lobes. My husband's DLCO is marginal - what was going to be done to further evaluate that? What about an MRI of his brain? and, Without mediastinoscopy how will lymph nodes be handled?

We listened to the surgeon. Contrary to pulmonologist, VATS is not appropriate and they will have to do a thoracotomy. Will try to limit removal to lower lobe but cannot determine until he gets inside. Well, the "he" turns out to be another surgeon in the practice who we didn't consult with. This practice has patient sharing. Surgery was set for Friday the 13th.

I raised Dr. Carr's concerns and got a rather indignant response basically saying he must be from an academic institution - they always want to do everything resulting in delays. Nevertheless he ordered a VQ Scan and brain MRI w/out contrast the next day.

It wasn't like Dr. Carr thought purple sutures rather than pink. He disagreed with everything!! Dr. Carr suggested Duke. Faxed reports Wednesday, Thursday Duke called w/appt, with Dr. Mark Onaitis on Monday. Cancelled Friday the 13th surgery. And now are bags are packed and we're ready to go!

With utmost respect,
Lisa

Reply # - December 14, 2013, 05:18 PM

Dr West
Posts: 4735

That sounds great. Rushing into surgery is never a good idea, at least not a cancer surgery (OK if it's for trauma or a ruptured appendix). I'm also glad you feel that you're able to participate in the important decisions of his care, as you should be.

Good luck!

-Dr. West

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