A Wiki for Understanding Your Lung Cancer Diagnosis and Coping With Treatment
Guidance For Those Newly Diagnosed...
Things I wish I had known when I was diagnosed...
Lung Cancer is a Very Complicated Disease:
Lung Cancer is one of the most complex types of cancer as it literally has many hundreds of different variants. Because it is such a complicated disease you should consider working with an Oncologist who is a Lung Cancer Specialist instead of a general Oncologist as the key member of your Treatment Team.
In order to optimize and narrow treatment options to the most promising treatment approach for your specific cancer, a number of additional actions need to occur. Just having your Diagnosis and Stage defined is not sufficient, your medical team must also identify your specific lung cancer mutation which requires additional diagnostic testing focusing in on its genomic makeup. By taking these additional actions, defined below, you greatly increase the chance of identifying the optimal cancer treatment approach for your specific cancer much earlier in your treatment process. The benefit of these actions can increase the odds of your team eradicating or forcing your cancer into a prolonged remission.
Initial Diagnosis and Biopsy: The First Step in Understanding your Cancer
Initial Diagnosis: Identifying your Cancer Type
Think of "Diagnosis" as a tree. Lung cancer is the trunk, “non small cell” (NSCLC) vs "small cell" etc are main branches of that tree. “Adenocarcinoma” is a fork in that branch, and this may be the extent of detail your traditional Diagnosis analysis defines.
BUT, you will want to explore further up into your diagnostic "tree" following the branch forks until you identify your specific “twig” ideally, your unique “leaf”. That “leaf” is your specific lung cancer genetic mutation or aberration. These "leaves' are specific cancer signatures; examples of a few such lung cancer mutations are EGFR, ALK, ROS1. Traditional Diagnostic analysis does NOT drill down to this level of genetic specificity. Specific mutation identification is discussed below under genomic testing (GCP) subject head.
Initial Biopsy: A biopsy is conducted to capture a small portion of the tumor tissue itself, if possible through minimally invasive means. This procedure will give more information than what was gleaned visually by reviewing your initial scan that first identified what may be a tumor, be it benign or malignant. The Pathology department will do an assessment to identify " what is this?"
A more extensive pathologic analysis will likely be done once more tumor tissue is captured to understand the extent of the tumor and further validate what type of tumor and subgroups make up this tissue sample.
Cancer Team Leader: Second Step - Work with a Narrowly Focused Lung / Specialty Cancer Expert
Choose Your Team Leader:
Your local physician / organ Specialist has identified that you likely have cancer and may have already conducted an initial biopsy. Before you have surgery, you should have an Oncologist consult with your Surgeon. Depending on the size, extent of the tumor the Oncologist may advise that an adjuvant treatment is conducted to shrink the tumor size PRIOR to its removal or conduct a localized treatment to help contain the effects of the tumor soon after surgery.
A Lung Cancer (Thoracic) Oncologist is more familiar with the latest diagnostic and treatment advances as well as with the latest promising treatment options for this very complex cancer type. You should strongly consider working with an Oncologist with a Lung Cancer Specialty and one at a Facility which sees and treats many hundreds of lung cancer cases each year. You will usually find such Specialty Oncologists at Medical Teaching Institutions.
A Lung Cancer specialist, also known as a Thoracic Oncologist, is who you should be working with to identify promising, possibly the most effective approaches and treatment options for fighting your cancer. This lung cancer Specialist will narrow your diagnosis, facilitate genomic testing and will then use that detailed information to hone and narrow your treatment options to those showing the most promise.
A Teaching Facility or Comprehensive Cancer Center gives you access to a broader range of treatment approaches that may not be available at smaller medical facilities. Clinical trials, often run through such centers, are a way to access new, promising treatment regimens especially for more challenging mutations / aberrations.
One guide to use for identifying such top tier medical, cancer facilities are those receiving the NCI’s “Comprehensive Cancer Center” designation. It is a prestigious designation that approximately 50 treatment facilities / institutions have been awarded across the US. As an example, there are two of these cancer facilities in the San Francisco Bay Area; UCSF and UC Davis Cancer Center in Sacramento.
I'd suggest interviewing several specialist Oncologists at different medical institutions through "Second Opinion" to gain different perspectives and assess the depth of their institutional experience in your cancer type. If you are reluctant to change your local Oncologist as your Lead, you may choose to have the Thoracic Oncologist as a periodic second opinion to your local Oncologist. If you do so, I would recommend you re-consult with this Lung Cancer Specialist at critical decision points in your disease to capture the Thoracic Oncologist's guidance for updating your treatment approach as numerous new treatment options are on the horizon.
NOTE: I have recently included an additional section to LungPedia called "Questions to Ask your Specialist & Oncologist" which details example questions to be used as a springboard in crafting your own questions for interviewing your Treatment Team. Click here for the link to this new page:
Third Step: Tumor Profile Determination through Pathology Tissue Analysis
Staging:
Staging helps describe where a cancer is located, if, where and to the extent it has spread, and whether it is also affecting other parts of the body. T(X), L(X), M(X) - T: Tumor extent, L: Lymph nodes, extent tumor present, M: Mutation to other sites. These tumor feature designations are a key factor in determining how your cancer will be approached and how it will likely be treated.
Your tumor tissue is as valuable as Titanium to you and your Oncologist in understanding your specific lung cancer type, as well as its cancer mutation or aberration. A portion of your tumor tissue will be preserved in paraffin for further analysis, future reference by your physicians. Frozen tumor tissue, especially of rare cancers, can be used for Research if you're interested in donating it to a teaching institution.
This tumor tissue sample will also play a critical role in further determining the "leaf" or "signature" of your cancer. This tumor tissue sample is required for genomic testing which could identify the genetic profile of your cancer.
Ideally, the tissue biopsy of your cancer taken at your initial diagnosis or surgery prior to any chemo treatment is the optimal sample as this tissue exemplifies your tumor's signature in its original form.
Fourth & Critical Step: Detailed Tumor Analysis down to its Genetic Level - Comprehensive Genomic Profiling (GCP) / Genetic Sequencing of Tumor Biopsy.
Identifying the Genetic Signature of your Cancer:
Tumor tissue is a critical factor required to determine the genetic profile of your cancer. Unlocking your lung cancer's genetic profile ("leaf") is critical to pursuing the most effective treatment for your disease. The earlier you identify your cancer's genetic signature the easier it is to identify the most promising cancer treatment.
There are several approaches to identify this cancer signature and some methods are faster and more comprehensive in this analysis than others.
Genetic sequencing analyses, aka GCP, are increasingly performed at specialty comprehensive testing companies. The benefit of using such companies is that they will test your biopsy against an extensive panel of cancer markers all at the same time saving your Team precious decision time and generating a complete, consistent analysis of your tumor biopsy tissue. These genomic test panels are growing more comprehensive over time as the extent of the identified cancer markers have exploded in the last ten years.
In contrast, more traditional genetic analyses methods test for the most common genetic mutations one at a time, in a sequential manner sending out, receiving back your biopsy each time and then sending it out again to a different lab for an additional specific marker test. This older process takes much precious time, effort and the lab analysis are not consistent as they are conducted at different sites by different people.
As an example, my Lung Cancer Oncologist sent my tumor biopsy for comprehensive genetic profiling (GCP) to Foundation Medicine® to have the FoundationOne®CDx panel conducted on my tumor sample. My second round of GCP testing in 2014 identified that I had the rare ROS1 mutation and I then started treatment on an oral drug that targets that cancer mutation. This GCP diagnostic test currently analyzes over 300 genes as compared to those 7 identified cancer markers in 2009 which is when I had my initial GCP test conducted.
In the last several years, genomic testing facilities now include PDL1 immunotherapy sensitivity testing of the tumor tissue as a part of their panel. This test result may identify an alternate way to fight your cancer based upon the profile your tumor presents; a treatment approach called Immunotherapy.
Here's a link to Foundation Medicine®'s, FoundationOneCDx website for more information:
The comprehensive genomic testing example above details only one of several genomic testing (GCP) companies, you should rely on your Thoracic Oncologist to define which comprehensive genomic testing company is best for your situation.
Be Proactive Before you Need to or are Forced to Make Critical Decisions:
Once you've received your initial Treatment, Surgery or are in the "Watch and Wait" status you have some homework to do. You and your Cancer Team will become sleuths in investigating and pursing what is the most effective treatment approach for your specific cancer. Every step defined above takes time and a number of hurdles need to be overcome as you progress.
I learned the hard way thinking that I could wait until or if my cancer came back. Because I delayed, I was not able to identify my cancer mutation until after going through several treatment cycles including some very toxic and difficult combination chemotherapy regimens. After I had my ROS1 mutation identified, I was placed on an oral targeted therapy. The quality of my life vastly improved as my cancer was more effectively treated and the side effects of treatment were significantly reduced.
My personal philosophy is, the more you know about your specific disease, the better informed your decisions, now and in the future.
Ask for Support, You Can't Do it All Yourself
You have some homework to do as finding out the above outlined actions will take time and you may have to wrangle with your insurance and medical “systems.” You'll learn what is covered and what medical institutions are "In" or "Outside" of your Network. Time is critical, even early on in your diagnosis, as you'll want to be prepared in case you have to make treatment decisions quickly. Being an informed consumer and an advocate for yourself is critical as you want to be prepared BEFORE a decision needs to be made.
Ask a reliable friend or family member to help do the research, phone calls, sending / requesting information, follow up, setting up second opinion consults, do the legwork for you as you can easily become overwhelmed. This is a very emotional time, cut yourself some slack. Consider your spouse or loved one may be having a difficult time as well so a third party may give you both a bit of a break from such activities. Have someone help you work through these steps, take actions and continue making progress for you.
Why Should You Go to All of this Effort? It's Complicated, Takes Time and You're already Dealing with a lot
I'll be direct. The more information you find out about the genomic details about your cancer and you're teaming with a knowledgeable, progressive Lung Cancer Specialist to guide your decisions, the more likely you will survive this complicated cancer type. The earlier you find out about your cancers unique signature, the less likely it will spread to other areas within your lungs or beyond because you will have narrowed your treatment options to those with the highest probability of success AND earlier in your disease's progression. Time is NOT on your side, you want to nip this THING in the bud. Knowledge IS power.
Take Solace as The Fight Against Lung Cancer has Vastly Improved:
The tremendous expansion in cancer gene research and identification over the last ten+ years has driven a paradigm shift in understanding cancer and improving its diagnostic testing. There has literally been a paradigm shift in understanding, diagnosing and more importantly creating new and more effective, focused treatments for LC. This understanding is also driving a change in how to approach fighting, treating cancer as the industry is increasingly focusing on identifying cancer mutations and having that essential information drive treatment approach philosophies thus revising treatment regimen decision trees.
Generally, many treatment facilities still use a more standard, general approach which starts cancer treatment often with surgery, then toxic combination chemotherapy regimens or radiation, then later progressing to the more cutting edge treatments BUT facility approaches still widely vary. The approach to treatment is increasingly becoming more personalized driven by the individual's cancer signature. Again, the more progressive treatment philosophy and substantial and growing knowledge base exists more often at Teaching facilities that specialize in specific types of cancer.
A critical step in optimizing your treatment as well as improving your survival is having your care overseen by a Lung Cancer focused Oncologist. New Treatment advances are literally occurring every three months or so as new data is released from research studies and clinical trials. Only an Oncologist focused and dedicated to treating lung cancer patients can stay abreast of all of the new findings and improved treatment approaches for this very complex cancer type.
Why Did I Create This Newly Diagnosed Patient Advice Page?
I realize I may come across as intense in the above advice. I am impassioned about this struggle. Much of what I learned above I learned the hard way. I had very little guidance as there was essentially no knowledge about my type of lung cancer at the time I was diagnosed in 2006.
I am absolutely convinced that had I not transitioned my cancer care to UC Davis Comprehensive Cancer Center I would NOT be alive today. When I changed my Cancer Team Leader and medical facility we essentially bet on a "Hail Mary" treatment as I was so sick. I trusted my progressive LC Oncologist and the treatment regimen approach he recommended held my cancer at bay for almost five years until they finally identified a treatment that targets my specific cancer mutation I was literally riding the wave of lung cancer innovation, and played a part as I also participated in several clinical trials
My LC Oncologist focused on what was in my best interest in fighting my cancer, a personalized approach versus the more conservative approach of continuing to follow the current standard of care steps which then only had an abysmal 17% five year survival. THAT's why going to a medical institution supporting Oncologists that are not afraid of taking calculated risks on more cutting edge treatment approaches saved my life. This belief is why I am encouraging you to be your own advocate in educating yourself and doggedly pursing the identification of your unique cancer's genetic signature.
Take care, keep up the fight and take it a day at a time. Find something each day that brings you a bit of joy; being alive is a precious thing.
Best of Luck,
Elizabeth