Been a while but am seeking some guidance on what options we have. Mom's recent CT shows significant growth in both lung and liver tumors and is starting navelbine tomorrow.
We are all going crazy because no one can seem to tell us what type of lung cancer my Mom has. After 3 years and 2 biopsies, her diagnosis has changed twice and today her oncologist said her case is very rare and he's not sure what type it is or if chemo will work.
My mom NEVER smoked and has pretty much been asymptomatic throughout this whole process. Her only symptoms were chemo side effects.
Brief hx:
DX 10/2010 with SCLC-ext - biopsy at Brigham Womens
10/2010 - 12/2012 6 rounds of cisplatin/etoposide w/ minimal response. 6 rounds of carboplatin/ irinotecan w/ very slight response. PCI. taxol
She never really had significant shrinkage from any chemo, just the cancer remained stable - which is why the question of whether it was SCLC always existed as it never responded to chemo. With that being said her oncologist at the time (he since left which devastated us) ordered a 2nd biopsy which showed the following:
"possibility of combined neuroendocrine tumor, small cell and atypical carcinoid, that have been partially sampled previously"
This 2nd biopsy changed her dx from sclc-ext to "combination SCLC w/ atypical carcinoid"
Our concerns with this new growth are:
Isn't Navelbine for NSCLC?
Why not go back to a 1st line since it's been so long?
How can they treat when no one seems to agree on which type of lung cancer?
Should I have her go to Moffitt (she is in Florida) and start from scratch?
Should a 3rd biopsy be done now with the significant growth?
How can navelbine be used when the doctors are unclear what type of cancer we are dealing with?
Everyone always says how rare her case is but we want answers. Don't even know what kind of clinical trials to look for. Would be grateful for any guidance to get my mom on the right track for treatment.
Thank you!
Reply # - November 7, 2013, 07:30 PM
Reply To: DX changed from SCLC to atypical carcinoid to unsure.
binkygirl,
Although Navelbine is generally used for NSCLC, it has also shown activity in small cell. Although it is always possible to return to a previous regimen, usually oncologists prefer to choose a different agent.
As far as the diagnosis, it is not unheard of for a patient's cancer to have components of more than one histology. And it is entirely possible that one biopsy may only sample tissue containing only one of those components. The mixed histology may explain why the previous chemo has been less effective than expected.
If there are doubts regarding the diagnosis, it is never a bad idea to take the tissue samples to a research center such as Moffitt for a second opinion.
In the meantime, good luck with Navelbine.
JimC
Forum moderator
Reply # - November 7, 2013, 08:35 PM
Reply To: DX changed from SCLC to atypical carcinoid to unsure.
This happens -- it's not unprecedented. We know that cancers can look different in different areas of the same tumor, and SCLC and atypical carcinoid are part of the same spectrum of neuroendocrine lung cancer that also includes large cell neuroendocrine carcinomas. I have had a couple of patients with a combination of small cell and neuroendocrine large cell NSCLC or carcinoid.
In truth, there isn't a significant difference in treatment between NSCLC and SCLC, particularly if we're talking about SCLC vs. neuroendocrine NSCLC or carcinoid. The main treatments for SCLC are also fine treatments for NSCLC, and just about all of the NSCLC drugs also have some potential value in SCLC.
While we often go back to first line treatments for SCLC in people who do well for a long time, that really is predicated on the presumption that the first line treatment was very effective. In people who don't respond significantly, there is little reason to favor returning to it.
It's certainly reasonable to seek another opinion, but I strongly suspect that the conclusion will be more or less the same. The pathology is what it is, and the treatment options won't be substantially different. Topotecan may be suggested, or a taxane, but there just isn't a stand-out, evidence-based option that anyone could identify, leaving us to our best judgment.
Good luck.
-Dr. West
Reply # - November 10, 2013, 07:19 PM
Reply To: DX changed from SCLC to atypical carcinoid to unsure.
Hi Dr. West,
thanks for your reply. I guess what I am trying to figure out is if a patient, like my Mom, has SCLC w/ atypical carcinoid would it best for us to seek a carcinoid specialist? I know there are not very many out there so it would involve travel and that's what I am trying to determine.
What do I even search for with clinical trials? When her DX was sclc I could look up trials very easily. Now with this confusion over atypical carcinoid AND sclc makes it hard to research. I am very proactive and like to learn everything I can.
Thanks so much,
Reply # - November 10, 2013, 09:39 PM
Reply To: DX changed from SCLC to atypical carcinoid to unsure.
I would be very surprised if a carcinoid specialist would offer greater insight than a lung cancer specialist.
-Dr. West