Large Cell Neuroendocrine Cancer of Lung - 1245914

sunnyseas
Posts:4

My mother has just been diagnosed with this cancer,  stage 2B.  She is recuperating now from an unsuccessful lobectomy surgery.  The tumor was too entangled with critical structures to be removed. We are supposed to start chemo in approximately three weeks, when she has healed sufficiently from the surgery.  I would like to know if anyone has experience with this type of lung cancer.  I have many questions.

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Reply # - July 26, 2012, 02:04 PM

catdander
Posts:

sunnyseas, Welcome to Grace. I'm so sorry that your mother has been diagnosed with lung cancer
Large cell neuroendocrine cancer isn't as common as squamous or adeno but unfortunately is common enough that much is known about the way it behaves. You will be able to access lots of information here. Just remember it's a tough subject so I hope you will give yourself time to take it all in.

Sometimes you may find your mother's treatment looks more like sclc because it responds similarly. You will also find that each person with large cell neu lung cancer has individual needs so not all treatment looks alike.

Below are links to blog/posts written by our faculty that should help you begin to understand what is happening. Our search feature is really good so use it. Read what you can find and ask questions as they arise.

I hope the best for your mom,
Janine
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Reply # - July 26, 2012, 02:12 PM

catdander
Posts:

Sorry for the omission. Here are the links

http://cancergrace.org/lung/2010/04/05/an-introduction-to-lung-cancer/

http://cancergrace.org/lung/2007/03/22/lcnec-tumors/

I know you said your mother is stage II but since it appears that the cancer is not operable,
http://cancergrace.org/lung/2010/08/22/introduction-to-locally-advanced…

and since she has just been diagnosed and may not be at a large research center (my husband is being treated at a smaller hospital that I am completely happy with),
http://cancergrace.org/cancer-101/2011/11/13/an-insider’s-guide-to-the-second-opinion/

Reply # - July 26, 2012, 08:13 PM

Dr West
Posts: 4735

I agree with Janine's key points here, particularly that if it was unresectable because it involves unresectable structures in the chest, it's presumably stage III. The most common approach here is a combination of chemo and radiation, often given concurrently.

Also, as Janine mentioned, large cell neuroendocrine tumors are in the same family as small cell lung cancer (SCLC) and are most typically treated with a chemotherapy combination typically used for SCLC such as cisplatin and etoposide. In fact, cisplatin and etoposide with concurrent chest radiation is a very appropriate and likely the most common treatment approach for either stage III NSCLC or limited stage SCLC.

-Dr. West

Reply # - August 2, 2012, 05:32 PM

sunnyseas
Posts: 4

Thank you for the replies. Her Oncologist is proposing a chemo option of cisplatin and etoposide, but not concurrently with radiation. He wants to do two cycles, see what response there is, and then move to radiation. She is 80 years old and perhaps the concurrent approach would be too aggressive given her health status. Would it be reasonable, at her age and with this diagnosis, to forego chemo? I fear that the treatment will be horrific for her and from what I've gleaned, the benefits marginal. Her tumor is 5 cm and in the right upper lobe totally obstructing the right upper lobe airway. It covers and invades the interlobar pulmonary artery and extends into the superior segment of the right lower lobe. She failed the clamp test, preventing a pneumonectomy. The best response scenario, according to her doctor, would be a 20% reduction in the tumor. In patients choosing to forego chemo, what is typically done to manage symptoms and can patients be kept comfortable?

Reply # - August 2, 2012, 09:16 PM

Dr West
Posts: 4735

So stage III NSCLC is a very heterogeneous setting, and elderly patients are very heterogeneous. Her being 80 years old really makes it a very different question. The short answer is that there are no hard and fast rules for treating elderly patients with locally advanced NSCLC, as they really need to be approached on an individual patient basis. I've had 80 year old patients who ski past their grandchildren (literally), and I've had 80 year old patients who can't imagine walking up a flight of stairs. Not surprisingly, these people should be treated differently, but the actual research to address this is so scant, it's pretty close to negligible.

There is good reason to be VERY cautious about giving cisplatin to anyone in their mid- to late 70s or older, and my enthusiasm for it in this age range is not great...you can definitely have the treatment become worse than the disease here. The same goes for concurrent chemo and radiation. Though it's the clear standard of care for younger, fit patients, there's so little information about treating patients over 75 or so with this strategy that I think it's appropriate to have grave misgivings about it. It's probably worth remembering that on the clinical trials of concurrent cisplatin/etoposide and chest radiation (which enroll patients generally much younger than 75+), there's a treatment-related death rate of 5% or so, sometimes even as high as 7%. So we can absolutely hurt patients by being too aggressive, and I think this applies far more to the elderly and very elderly.

Though I individualize for the patient and their disease, the approach I tend to favor often for elderly and more frail patients with a locally advanced NSCLC is sequential therapy, typically with radiation preceding chemo...and sometimes forgoing the chemo if the patient isn't up to it. Radiation is typically a more predictable, less toxic treatment. Chemo can be considered later, if the patient is up to it.

-Dr. West

Reply # - August 2, 2012, 09:24 PM

Dr West
Posts: 4735

Just to finish thoughts on a new reply after reaching the limit on the character count, I'd say that even if cisplatin isn't done, carboplatin/etoposide may be very feasible and still beneficial. It's reasonable to forgo chemo if someone just doesn't have the performance status for it or just refuses, but it decreases the cure rate. While patients with locally advanced NSCLC can technically be cured with radiation alone, that's only about 4-5% of cases. But in someone who is debilitated, you're probably not short-changing them by holding chemo, since it may well harm them more than help them.

As for how to manage symptoms, that's too broad a question. It really depends on what symptoms a person is having. One of the reasons hospice teams can be so helpful is that even though this is probably your first time dealing with these issues, it's what they manage every day.

-Dr. West

Reply # - August 11, 2012, 02:10 PM

sunnyseas
Posts: 4

Thank you, Dr. West. Her ECOG performance status is currently a "2". The official treatment plan is now an induction-based therapy of Alimta and Cisplatin for two cycles followed by the SWOG protocol of Cisplatin-Etoposide with CONCURRENT radiation. All of which looks totally wrong to me. The literature I've read says that Alimta (pemetrexed) doesn't work on LCNEC because of LCNEC's high TS expression levels which confers a reduced sensitivity to Alimta (British Journal of Cancer May 2011 had an article on this relative to SCLC). Our Oncologist is basing his treatment decision on a 2008 article in the Journal of Clinical Oncology which is a phase 3 study comparing Cis/Gemcitabine with Cis/Pemetrexed in first time chemo patients with advanced NSCLC. But that study was mostly done with Adenocarcinoma patients, and some Large-Cell (but doesn't even mention how many, if any, of those were LCNEC). I feel like he is just pulling out his cookbook induction regimen for all advanced NSCLC patients, followed by his cookbook SCLC regimen, and applying it to my mom. Also, I think that the protocol for concurrent chemo and radiation therapy is far too aggressive. Bottom line, we are leaning to not doing anything. I have a second opinion lined up for this week at a teaching hospital here in VA with a lung cancer specialist and hope that this will clarify things for us. Her ALK gene test came back showing no rearrangement of the ALK gene region. However, "92% of the nuclei had 3-5 intact copies of the ALK FISH probe. The clinical significance of multiple intact copies of the ALK gene region in lung carcinoma is unknown."---whatever that means. It sure doesn't sound normal to me. Still awaiting EGFR results. That's where we are at present.

Reply # - August 11, 2012, 02:56 PM

Dr West
Posts: 4735

I think you've got good reason to question the value of an Alimta (pemetrexed)-based chemo regimen, based on the limited data and association of high TS levels in neuroendocrine lung cancers. It's definitely a drug I'm disinclined to use for neuroendocrine cancers.

I also think that concurrent chemo/radiation using a cisplatin/etoposide regimen is tough for most people, including those far more fit than a performance status of 2...so it sounds like your concerns about that are also on the mark. However, someone directly working with her should be able to provide the most reliable prediction of what she's likely to tolerate, so I hope the second opinion you obtain is fruitful.

-Dr. West

Reply # - August 13, 2012, 10:46 AM

marisa93
Posts: 215

Hi sunnyseas,

Just want to send best wishes to your mom and whatever treatment is decided upon. Hope the 2nd opinion gives you something to feel more comfortable with. Take care.

Lisa

Reply # - November 6, 2012, 04:56 PM

sunnyseas
Posts: 4

Thank you all for your responses and kind words. My mother passed away, in my arms, on Friday, November 2, 2012. We went to MD Anderson Cancer Center in August and after extensive review and testing, found out that she had actually been staged incorrectly prior to her thoracotomy (Anderson reviewed her initial imaging studies and found a pancreatic metastasis which had been noted, but dismissed as a loop of bowel, by our local Radiologist). Anyway, she was a stage IV from the get-go, and in an 8 week time span, had extensive mets to the adrenals, both kidneys and bones. We returned and enrolled in hospice. She did have some palliative radiation to the lung tumor, which I believe helped greatly with her symptoms. Hospice kept her pain pretty well controlled, and I know that we did the right thing, given that she was facing an impossible battle. It just progressed so fast. As anyone who has traveled this road knows, it is a heartbreaking journey.

Reply # - November 6, 2012, 05:22 PM

cards7up
Posts: 635

Sunnyseas, I'm so sorry to hear of the loss of your mother. I followed your post from the beginning and did wonder what you had decided. I'm glad to hear she didn't go through treatment and that hospice helped her and you. My condolences to you and your family. May you all find comfort in your love and memories.
Take care, Judy

Reply # - November 6, 2012, 10:24 PM

Dr West
Posts: 4735

Sunnyseas,

I want to express my sincere condolences to you and your family. You're absolutely right that this is a heartbreaking journey.

On behalf of everyone here, I thank you for caring enough to come back here to provide us follow up, kind words, and your own thoughtful perspective based on your unfortunate experience dealing with cancer.

-Dr. West

Reply # - February 1, 2015, 11:10 PM

pilatesmeg
Posts: 1

Hi,
my mom who is 71, has metastatic stage IV large cell neuroendocrine carcinoma.
5/10/10 she had a lobectomy to remove her R lung middle lobe-moderate/poorly differentiated adenocarcinoma (non small cell). All CTs were stable until 6/14 when CT revealed increased modularity in the lateral limb of the R adrenal gland and MRI was recommended. Her dr did not call her until 6 months after that time to schedule an MRI
12/23/14 MRI of adrenal revealed concern for malignancy
1/14/15 Biopsy pathology was consistent with Large Cell Neuroendocrine Features positive for CK7, TTF1 and synaptophysin
1/20/15 Pet revealed that the 5mm adrenal nodule had increased to a whopping 5.6cm in 6 short months
1/21/15 My younger brother had his first baby..my moms first granddaughter. It was an extremely emotional heart-wrentching week.
1/22/15 Met with MGH Oncologist who based on the PET from Upstate NY was recommending surgery to remove the aggressively growing adrenal tumor. We met with a surgeon and we were thrilled that this could be resected. I asked for (and drs at MGH agreed) an MRI of her brain and a repeat PET (which may have seemed a bit much given she just had one 2 days prior).
1/23/15 Second Pet and MRI of brain done at MGH unfortunately revealed lymph node activity as well as a "fleck" (small nodule on the brain).
This new information changed the course of treatment as resection was no longer the most effective option and instead it was now stage IV and chemo was the only course of action. We were devastated.
1/26/15 We went to Dana Farber for a second option, and were told the statistics reveal that the average person with metastatic stage IV lung cancer lives 12-18 months with chemo.
1/29/15 Went back to MGH and determined a course of treatment which is Carboplatin and VP-16 (known as Etoposide). Treatment to start on 2/12 after we return from a trip to see my moms first granddaughter.
Any insight would be incredibly appreciated. pilatesmeg

Reply # - February 2, 2015, 06:21 AM

JimC
Posts: 2753

Hi pilatesmeg,

Welcome to GRACE. I am sorry to hear of your mom's diagnosis. The period between diagnosis and the start of treatment can be especially difficult.

It sounds as though the treatment plan is entirely appropriate given the diagnosis. It is important to remember that the statistics quoted at Dana Farber are just that - numbers based on the median survival of large numbers of patients in clinical trials. They do not really tell the story of what will happen to an individual patient. Increasing numbers of patients are bettering those medians by a significant amount, so that is what you may want to focus on.

I hope your mom has a great visit with her granddaughter. We will keep her in mind as she begins treatment. Please let us know if you have any questions and update us on how she is doing Both of you are part of our GRACE family now.

JimC
Forum moderator

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