One month ago I began the diagnostic process that determined I have stage lllB non small cell lung cancer metastatic. I have a tumor in my R lung, two lymph nodes in the center of my chest, one left and one right, and three above my collar bone, around my thyroid.
I pushed the entire process, and found myself a wonderful surgeon even before I had the biopsy which my oncologist ordered. So in the space of one 10 days, I had my first CAT scan, my lung biopsy, and also a PET scan.
My surgeon, who is also an oncologist, after seeing my PET scan, said I'd probably need both chemo and radiation before he can remove the tumor. The cancer in the lymph nodes either has to disappear, or shrink.
My oncologist, though, says I can't have radiation because of the locations of the lymph nodes, and that makes it too large an area to radiate. I want to discuss with him the possibility of using radiation on an alternate basis between the two locations (what do I know, right?) One location one time, the other another time. I'm worried that unless we use both chemo and radiation concurrently, the cancer will progress.
I guess I'm confused because one doctor said to do them both concurrently, and the other says it's not possible.
I just started chemo last Thursday. I'm on Gemcitabine & Carboplatin. Gemcitabine the first week, both the second week, and one week off. Then repeat. I'll have another CAT scan in 8-10 weeks.
I want to know if this chemo is the best for me under the circumstances, and if there is any opinion about having radiation on these two areas, or why I can't?
Also, is there any information I can ask for to give a more detailed description of the type of cancer I have? What should I ask for?
Reply # - June 2, 2013, 10:29 AM
Reply To: Can I get radiation?
Hello and welcome to Grace. I'm very sorry about your dx and at the same time impressed with your self advocacy.
A radiation oncologist and maybe even a medical oncologist will know best about how much is able to be radiated at any given time, while the surgeon was probably speaking in a more general manner.
We really don't have lists of questions to ask because there are so many variables to every case. However we have an extensive library that will undoubtedly be helpful and we are happy to answer your questions. Stage IIIb nsclc can be considered curable and that is what I understand from your post is you plan for treatment with curative intent. On the other hand metastatic nsclc another term you used is given for stage IV and treated for quality of life and to extend life.
Let me leave you with some links to blog posts from our faculty and a doctor will respond in a bit.
The first half of this describes well stages IIIa and IIIb. http://cancergrace.org/lung/2010/04/23/stage-iiia-n2-nsclc-summary-ref-…
treatment and staging, http://cancergrace.org/lung/2009/09/09/clinical-versus-pathologic-stagi…
neoadjuvant treatment http://cancergrace.org/lung/2011/12/03/chest-trial-scagliotti-neoadjuva…
primer on radiation, http://cancergrace.org/radiation/2012/03/29/not-black-or-white/#more-14…
Again I'm very sorry you're going through this but glad you've found us. There's more to understand than can be done in the short period you've been involved not to mention the stress. Take in what you can and you will continue to absorb what need to know.
All best,
Janine
forum moderator
Reply # - June 2, 2013, 01:03 PM
Reply To: Can I get radiation?
I'm sorry for your new diagnosis and the confusing and inconsistent messages you're getting. It's very easy to believe, frankly, because your cancer is one in which there isn't a clear cut best way to move forward. In particular, if lymph nodes are involved in both sides of the chest as well as above the collarbone (involving so-called supraclavicular nodes), that's getting into the range of stage IIIB disease that is so multifocal and extensive that it may technically be in a range in which chemo with radiation would be favored, but in practicality the radiation field may well be so large that it is life endangering to give radiation to such an extensive area without destroying too much lung. A radiation oncologist could give the most insight about that, and this is an expert who is not a medical oncologist, and not a surgeon (though in some parts of the world, a medical oncologist is also trained in radiation oncology and does that as well). Anyone other than a radiation oncologist providing an answer is less well qualified. It's also important to look at the actual images of the size and location of all of the disease to be treated, as well as your lung function and other medical issues.
You'll notice I didn't mention surgery. Surgery is definitely not a standard or commonly recommended approach for stage IIIB NSCLC, and even though it is sometimes done, it is very rarely successful and usually a very unwise decision guided by either desperation or surgeon bravado rather than any good evidence or even careful judgment that it's the best approach. There are rare exceptions, but more often than not, when surgery is pursued, it's a poor choice for the situation.
The choice of chemo really depends on many factors, and there isn't a single best choice. It's usually a two drug combo with a platinum drug (cisplatin or carboplatin), and the partner drug can be any of many.
(Running out of space, will continue in part two)
-Dr. West
Reply # - June 2, 2013, 01:10 PM
Reply To: Can I get radiation?
I also wanted to mention is that the other variable that can be very helpful to know is the subtype of NSCLC, also referred to as the tumor histology. A few chemo agents are a little more active in one subtype, such as adenocarcinoma, vs. another, such as squamous NSCLC. Knowing the tumor histology can sometimes lead to a preference for one chemo combination or another. That said, there's still a lot of latitude about which two drug combination to favor, with most of the commonly used choices producing very comparable results.
In closing, I'll just mention that the concerns about prohibitive toxicity of treatment isn't just being overly conservative. In clinical trials for patients with unresectable locally advanced NSCLC (and your extent of cancer would definitely be considered unresectable), about 5-7% of patients enrolled on the trials die from treatment-related complications. There is a very real risk of dying from chemo and radiation delivered concurrently, especially if the radiation field is too large. Though the risk from the cancer is very real, that doesn't mean that doing a desperately aggressive intervention is a good choice, if the risk of dying from the treatment exceeds any extra benefit from the more aggressive treatment.
Good luck.
-Dr. West
Reply # - June 2, 2013, 07:28 PM
Reply To: Can I get radiation?
Not able to get more information about the diagnosis of the biopsy, but I did upload my CAT scans to YT, if it give Dr.West any further information. Oh, I realise this is just a forum, but it's helpful to have more discussion. I do have faith in my doctors. https://www.youtube.com/playlist?list=PLjqe0uXNcDpArPqn1PoPnNfB_cjlLRhrB
Reply # - June 3, 2013, 12:18 AM
Reply To: Can I get radiation?
I got the histology report today. They are still awaiting the molecular test which takes a bit longer. Here is what I have so far. I had to transcribe it, as it was emailed to me from a fax. I could not read on word, and noted that:
MICROSCOPIC REPORT: 17/05/2013
The smears and cell block show carcinoma cells arranged in papilliform groups,
sheets and dispersed singly. The cells have a high nuclear cytoplasmic ratio,
variable nuclear size, central to eccentrically placed nuclei, irregular
nuclear membranes, coarse chromatin and prominent nucleoli. The cytoplasm is
relatively dense.
Immunohistochemistry shows strong staining for TTF-1 and Napsin A. There is
also focal staining for CK5/6 in a few groups of carcinoma cells. P63 is
negative.
The appearances are those of non-small cell carcinoma, with mostly features of
an adenocarcinoma, but focally also showing changes suggestive of squamous
differentiation, immunohistochemistry and ISH for EGFR to follow.
SUMMARY - IASLC/ATS/ERS 2011 CLASSIFICATION:
FNA RIGHT LUNG: NON-SMALL CELL CARCINOMA, FAVOUR ADENOCARCINOMA.
SUPPLEMENTARY REPORT: 21/05/2013
Immunohistochemistry with EGFR21 and ALK-1 are negative.
Molecular testing for EGFR to follow.
Note on mutation specific immunohistochemistry in lung carcinoma:
Immunohistochemistry with EGFR mutations specific antibodies is highly specific
(from 97.8% to 99.5%) for EGFR Exon 19 and EGFR Exon 21 mutations. Therefore a
positive result is highly likely to indicate an activating mutation of EGFR.
However the sensitivity of immunohistochemistry is relatively low (from 42.3%
to 75%). Therefore negative staining for ( CANNOT READ THIS word: EARN) EARN does not exclude an EARN
activating mutation (ref: Lung Cancer 2011 73:45-50). Molecular testing for
EFGR mutation is recommended before sensitive EGFR mutations are considered to
be excluded regardless of negative immunohistochemistry.
to be cont'd...
Reply # - June 3, 2013, 12:19 AM
Reply To: Can I get radiation?
...cont'd:
Immunohistochemistry for ALK is thought to be highly sensitive and specific for
the EML4-ALK translocation with a sensitivity approaching 100% and a
specificity estimated at 95.8%. (ref: Journal of Thoracic Oncology 2011
6:466-472). Negative staining for ALK therefore makes the EML4-ALK
translocation unlikely. However FISH for the EML4-ALK translocation is
considered the gold standard and should be performed before this translocation
is considered to be definitevely excluded.
Reply # - June 3, 2013, 05:42 AM
Reply To: Can I get radiation?
Hello,
I'm sorry, but interpretation of a lengthy histology report is beyond the scope of what the GRACE faculty can handle. As is stated in the forum guidelines:
"We want brief telegraphic highlights of treatments given and how they worked, a quick summary of staging and pathology, but we ask that people notcopy and paste or upload pathology reports, radiology reports, etc. It’s problematic from a confidentiality standpoint, and beyond that, we can’t practically get immersed in the extreme details of everyone’s care. We’re trying to serve a broad population by providing information that can be useful to many people. The more specific the questions get to an extremely unique situation, the more time we are asked to spend to help just a single person. That’s really more in the realm of a person’s own medical team."
If you have a specific question or two, we will be happy to address them.
JimC
Forum moderator
Reply # - June 3, 2013, 06:26 AM
Reply To: Can I get radiation?
Dr. West wrote:
"I also wanted to mention is that the other variable that can be very helpful to know is the subtype of NSCLC, also referred to as the tumor histology. "
I just copied the report because I didn't know what to put in and what to leave out.
I still don't know which part of what I wrote is the subtype.
Sorry if I overdid it. I know I won't get a second opinion here, just discussion. Which is what I want.
Thank you.
Reply # - June 3, 2013, 06:46 AM
Reply To: Can I get radiation?
Hello,
Thanks for the specific question. The report states the histology as "non-small cell carcinoma, with mostly features of an adenocarcinoma, but focally also showing changes suggestive of squamous differentiation."
This means that although it mostly seems to be adenocarcinoma, there appears to also be an indication of squamous cell lung cancer. If this is the case, the combination is what's know as a mixed histology. In such a situation, the chemo choices for adenocarcinoma would be appropriate, although your doctor may want to consider excluding those which are not known to be effective against squamous (such as alimta).
As far as EGFR and ALK mutations, they were tested by a process known as immunohistochemistry, which as the report states is not known to be very accurate in detecting an EGFR mutation. So the genetic testing which is being done (and takes longer) will determine whether or not there is an EGFR mutation which can be targeted.
JimC
Forum moderator
Reply # - June 3, 2013, 08:02 PM
Reply To: Can I get radiation?
Jim's spot on. About 5% of NSCLC's are "mixed histology", and if the squamous component is more than a very small minority of it, the implication is that it might be wise to use a chemo that is active across all histologic subtypes, while Alimta (pemetrexed) is not active in squamous NSCLC.
And we can't get involved enough in a patient's case to interpret their scans, pathology reports, etc. Not only is that more time consuming than we can manage, but it crosses over into providing medical advice for someone who isn't our patient, so we can't go there.
-Dr. West