CindyA

December 10th, 2013 - by Dr. Jack West
Why do we care about lymph nodes when staging lung cancer?
The simple answer is that they give us prognostic information (insight into the likely future behavior, the “natural history”, of the cancer). When you think of a cancer’s growth, there are a few potential ways for it to progress. It might progress right where it started, staying local. It might travel through the lymphatic system, kind of like debris swept off a roof and into a home’s gutter, and it might spread distantly to other parts of the body. We’re interested in getting a sense of how aggressive a cancer is likely to be overall, the engine behind its growth, but also whether it’s more likely to stay local or travel distantly.
The staging system for lung cancer and most others is called the TNM system, where T stands for Tumor stage (the primary cancer, where it started), N stands for Nodal stage (are lymph nodes involved, and if so, where?), and M stands for Metastasis stage (distant metastases, yes or no?). The M stage overrides the others — if a cancer has spread to distant parts of the body, it’s an advanced cancer, no matter how big or small the primary tumor or whether there are lymph nodes involved or not. But N stage is also quite important.
Essentially, the distance from the primary cancer to any involved lymph nodes, along with the number of lymph nodes that have cancer within them, help predict the probability that the cancer is able to get out of the area in which it started and spread to distant parts of the body, where cure is generally not something we can expect to achieve. Lymph nodes within the same lung as the primary cancer are called N1, and those in the mid-chest (mediastinum) between the lungs are called N2 if on the same side as the primary tumor, or N3 if on the other side or above the collarbone (lymph nodes outside of the chest are unfortunately considered metastatic sites, because they almost always occur in the setting of more widespread progression).
This numeric staging reflects the distance the cancer had to travel to get there, so higher number for N stage means greater distance and greater chance of spread to other parts of the body, and the stage is often dictated by the highest N stage seen, unless there is distant metastatic disease (which, as noted above, overrides other considerations and denotes metastatic/advanced cancer).
Basically, nodal status assesses the probability of a cancer to travel further, even if you don’t see evidence it has metastasized yet. It’s kind of like when my youngest son had wandered out onto the driveway after figuring out how to unlock the front door, open it, and walk outside. He didn’t quite wander into the street, but he had clearly shown that he had the skills to escape. Imagine that N1 nodal involvement is like finding him having unlocked the door, N2 is like opening it and starting to look outside, and N3 is like him walking down the driveway toward the street. (He is now 7 and at far more risk of video-game induced brain rot.)
While the number of lymph nodes involved is not formally part of the staging system, there are many studies over the years that have shown that prognosis is more favorable if one or a few lymph nodes are involved by cancer vs. many nodes involved. Lymph node involvement that is only microscopic has a more favorable prognosis than involvement that leads the nodes to become enlarged (as I think you would expect). And lymph node involvement by “direct extension” of a primary tumor just growing into an adjacent lymph node tends to be associated with a more favorable prognosis than having one or more lymph nodes involved by the usual method of traveling through the lymphatic system, so there is some space between the primary cancer and the involved nodes.
How does this change our management? Aside from providing important information about the probability of cure, such as the probability of the cancer recurring after potentially curative surgery or chemo and radiation, it helps provide clues about the relative weight we might want to give to chemotherapy vs. “local” treatments like surgery and radiation. For example, a cancer that shows a pattern of a 4 cm primary tumor but no lymph node involvement has provided a clue that it’s going to stay local and not be at as high a risk for distant spread as a cancer that is 3 cm but has spread to mediastinal lymph nodes on the same side as the primary tumor. The latter might possibly be treated with surgery, but chemotherapy is going to be a strong recommendation for just about any patient with N2 or higher node involvement, and it’s standard to recommend chemotherapy to reduce the risk of recurrence after surgery for a resected cancer with N1 (within the lung) node involvement, but not as clearly needed for someone with the same cancer but no lymph nodes involved.
For locally advanced (stage III) non-small cell lung cancer, lymph nodes are critical in selecting an optimal treatment. A single N2 node is in the realm that many experts would consider perfectly appropriate for surgery, but multiple N2 nodes or any N3 disease puts it in the range in which surgery is generally not favored. Instead, chemo and radiation are typically favored. This isn’t because we can’t find a surgeon to try to remove all visible disease, but rather that both multiple N2 nodes and N3 nodal disease represent a situation in which we need to concentrate on more than just the disease we can see. We need to be sure to cast a wide net to treat the disease we can see and the disease we can’t. Radiation treats a broader local area than surgery, as a general rule, and we can more reliably get in a meaningful amount of chemo when someone hasn’t just undergone a major lung surgery.
This is a big topic, so I’d welcome your questions. There are always individual circumstances, but I wanted to provide a general sense of why nodal status matters and how we use this information to prioritize one treatment approach over another. I hope that helps

Can Lung Cancer be Clinically Insignificant? The Case for “Over-diagnosis” and “Over-treatment” of Lung Cancer
December 16th, 2013 - by Dr. Jack West
For all too many people with lung cancer or caring for someone with it, the concept that lung cancer may not be threatening may seem sacrilegious. It is, after all, by far the leading cause of cancer deaths in the US in both men and women, far ahead of both breast cancer and prostate cancer in its fatality rate, though breast cancers and prostate cancers are more commonly diagnosed in women and men respectively. Yes, lung cancer is far more deadly than those two cancers, but both breast and prostate cancer are diagnosed in tens of thousands of people who aren’t truly threatened by it. The world has been slow to recognize that lung cancer can also sometimes be minimally threatening, but it’s worth discussing that possibility. And it shouldn’t lead us to minimize the danger of lung cancer any more than we should become complacent about handling deadly snakes just because there are some that are are perfectly safe. In the real world, a far greater proportion of lung cancers than snakes are deadly, but the main idea is that we should consider each based on individual characteristics. It is absolutely possible to “over-treat” a lung cancer.
This issue became newsworthy because of a new article in JAMA Internal Medicine that did a very complex calculated analysis (i.e., I didn’t understand it) of the lung cancers detected in the National Lung Screening Trial (NLST) and concluded that 18.5% of the lung cancers detected by chest CT screening and 22.5% of non-small cell lung cancers represented an “over-diagnosis” — a cancer that was detected but that would not be clinically relevant (as the numbers reflect, this is rarely a concern for small cell lung cancer). For bronchioloalveolar carcinoma (BAC), which is often indolent (and especially likely when detected as a solitary lesion), up to nearly 80% of these lesions were potentially over-diagnosed cancer.
As someone who sees the clinical behavior of hundreds of cases of lung cancer ever year, I’m here to tell you that this seems about right. This doesn’t mean that I don’t believe in CT screening for lung cancer: the NLST trial showed a 20% improvement in lung cancer-specific survival, which to me illustrates that screening for lung cancer is valuable. But it’s also worth knowing two things:
1) Not all lung cancers are life threatening.
2) There is a real risk of over-treating some lung cancers, causing more harm than benefit by treating it.
How might this happen? First, the truth is that very small lung nodules, especially nodules biopsied as showing BAC or designated in a new terminology as adenocarcinoma in situ (AIS), meaning that it’s a pre-cancerous lesion, pose an extremely minimal threat to survival over the next 5-10 years. It’s worth clarifying whether they are growing, whether they are growing at a meaningful rate (can you see a change over 6 months, or does it take 2 years for it to grow a millimeter in diameter?), and whether the threat of the cancer is a realistic concern relative to a patient’s other medical problems. If I see a lesion grow from 8 to 14 mm in 6 months, that’s a lesion that should be resected. But I will tell you that there are many 78 year old patients with heart disease “saved” from a cancer growing from 8 to 9 mm over 18 months. That’s like saving someone from a box turtle approaching from two blocks away. And for the lung cancer, that involves a surgery in which the risk from anesthesia and the cancer itself probably exceeded the risk from the cancer over the next 5 years.
Though not relevant to screening, this also comes up in multifocal/advanced lung cancer. Most lung cancers progress at a rate that is a real threat, but a minority grow slowly enough that the risk and side effects of the treatment exceed the symptoms of the cancer over the foreseeable future. This is more likely for BACs, but other lung cancers can be quite indolent, and we get a hint of this when we see that a patient feels well and hasn’t had a real change in their cancer over scans done a few months apart.
My key point is that it’s important to tailor the treatment to the individual patient’s cancer. Even with lung cancer, we need to ensure that the treatment is appropriate for the disease, and there is a potential risk of over-treatment and not just under-treatment.
What do you think? Do you find this believable, or is it too hard to imagine such a thing as a non-threatening lung cancer?

LUNGevity advocate, Melissa Crouse, receives an Emmy for her lung cancer survivorship story!
http://www.news-press.com/story/news/2016/01/06/10-year-lung-cancer-survivor-wins-emmy/78256422/
 

Emotional and Physical Benefits of Music Therapy for Cancer Patients
 
 
 
 
What do we know about music therapy for cancer patients?  We know that music has a large effect on us in general.  It can make us smile when we're feeling stressed.  It can take us out of a robotic "do" mode and put us in touch with our "feeling side."  But what about people living with cancer?  Do studies tell us what our hearts do - that music can make a difference?
Research hasn't disappointed, and seems to say that the sound of music really does help people climb the mountains we call cancer treatment.
 
Benefits of Music Therapy for People with Cancer It can even cause our hearts to beat - not like a bird - but in healthier ways.  There are now 30 National Cancer Institute designated cancer centers which offer music therapy as an integrative treatment for cancer.
There have been a surprising number of studies done to examine potential benefits of music for cancer patients.
 It would seem we're guessing intuitively that music has a role. What have we learned?
Emotional/Psychological BenefitsThe emotions that accompany cancer can feel like a roller coaster sometimes.  And that roller coaster can go both directions - it seems - in just a matter of minutes.  Does music help people cope with the emotional ups and downs?  How about the fears?
Reduced anxiety and improved mood                                                                                          A few reviews have looked at several studies to date evaluating the effect of music on mood and  anxiety in people with cancer.  The overwhelming conclusion of these studies was that music decreases anxiety and has a strong positive impact on the ability of people to cope with cancer.

Improved quality of life                                                                                                                A review of studies looking specifically at patients in the palliative care setting confirmed these benefits and more, concluding that music was associated with an improvement in the overall quality of life for these cancer patients.Study subjects included those who took part in music therapy as part of a hospital program, as well as people who simply listened to recorded music.  One of the reviews also found that music could be helpful in alleviating depression related to cancer.
Better pain control                                                                                                                       A decrease in pain was noted in some of the studies mentioned, but the effect of music on pain was studied specifically among people who were undergoing surgery for lung cancer.  These patients not only experienced less pain than those who weren't offered music therapy, but had a reduced need for pain medications.  Since pain medications can have significant side effects, this was an encouraging finding.
Decreased shortness of breath                                                                                                      At least one study has delved into studying the effect of music on the sensation of shortness of breath, with music decreasing the sensation of breathlessness while providing meaningful spiritual support at the same time.
Physical BenefitsThe physical benefits of music haven't been studied to the degree of emotional benefits, but what we have seen thus far is encouraging.
Effect of vital signs                                                                                                                      Modest improvements in vital signs have been seen among cancer patients participating in music therapy studies, including a decrease in heart rate, a decrease in respiratory rate, and a decrease in blood pressure.
Increase in natural killer cells                                                                                                       A few studies on healthy volunteers have found that listening to music resulted in an increase in number as well as activity of natural killer cells in the body.  Natural killer cells are an aggressive part of our immune system that aids in eliminating cancer cells.
Benefits of Music for Family Cancer CaregiversFew people experience cancer in isolation, and some cancer survivors have even remarked that they believe their cancer experience was harder on their loved ones than themselves.  Cancer is a family disease, and we tend to forget the needs of those who are busy meeting the needs.
Thankfully one study looked specifically at those who were caring for a terminally ill loved one with cancer.  These caregivers and cancer patients were offered a home music therapy program, and results indicated that not only did the cancer patients appreciate this program, but there was a double benefit for caregivers.
A double benefit?  It can help to remember that one of the greatest frustrations for family caregivers of terminally ill cancer patients is the feeling of helplessness.  In this study, not only did the caregivers experience their own joy (which would be called autonomous joy) but they also experienced "caregiver joy."  The opportunity to provide music granted these caregivers a sense of empowerment. They were able to do something concrete for their loved one while their loved one was still alive.
This benefit lasted beyond the loss of their loved one.  Following death, the caregivers were able to look back at the time they shared music with their loved one with a sense of joy and connection, feeling filled with happy memories and "sentiments of hope."
Potential Side EffectsOf course there could be a few side effects with music.  If the music makes you want to dance a jig the day after you have surgery, this may not be wise.  It's probably best as well to avoid music which would remind you of a difficult stage in your life that you don't care to relive. But in general music appears to provide some positive comforts with little fear of side effects.
Bringing Music To Your Life - Translating the Research into Climbing Your Own MountainHow can you add more music to your life as you cope with cancer?  Take a moment to brainstorm. Do you prefer playing music or listening to music?  Is there an instrument you have that's getting dusty?  Are there CD's hiding in a closet that you put there meaning to listen to a decade ago? 
Then think about what types of music you like. What music makes you feel good?  One woman with cancer dug out music she had used when she gave birth to her daughter.  She found that using the same music during chemotherapy not only gave her the sense of calm she had back then, but also filled her with precious memories.  For some of us, a labor tape might not bring thoughts of relaxation, but the point is the same.  Think about the ways music has brought you joy in the past.
Best Music for HealingOf course not all music will be helpful.  Hateful music or loud heavy metal might not be the best, but it depends on your personal likes and dislikes.  In studies looking at immune function it was found that "alkaline music" was one of the best.  Music in this category would include things such as soothing classical music, east Indian music, harp music, and Brazilian guitar for starters.  Ask your friends, or people in your cancer support group what they enjoy. It's likely you'll hear some strong opinions! 
Ideas and ResourcesSome cancer centers provide music therapy or have music on hand for you to borrow.  For example, the University of Michigan Comprehensive Cancer Center provides CD's you can borrow, with a few songs you can download from their website.
Check the collection of music you have, your ipod, or your library.  Youtube.com provides a quick way to play many a song.  It seems people are always wondering what kind of gifts to bring someone with cancer.  Perhaps music would fit the bill.  I'll share the list I used for picking out music to relax with and have not been disappointed. Check out thesetop 7 CD's for relaxation and stress relief.
Creativity and CancerIf music is just not your thing, or if you are looking for further creative ways to cope with your cancer treatment, there are plenty of ideas.  For example, art therapy was one that I participated in myself and truly enjoyed - and I'm not an artist.  Check out these art therapy benefits and resources for people with cancer.  Or perhaps you've been thinking of journaling your cancer journey.  Check out these benefits and tips on journaling for cancer patients.
 
To view all sources and direct link:
http://lungcancer.about.com/od/Mind-Body-Therapies-for-Cancer/fl/Emotional-and-Physical-Benefits-of-Music-Therapy-for-Cancer-Patients.htm?utm_content=20160208&utm_medium=email&utm_source=exp_nl&utm_campaign=list_lungcancer&utm_term=list_lungcancer

Hi Tom,
Oh wow, thank you!! I will certainly be aware of that short count Funny how our minds let us forget things after awhile. When I had the core biopsy, the nurse kept saying, "she's not even flinching", what they didn't know is that my toes were curled under so tight I am surprised I didn't break a couple. Guess I knew the ramifications of moving during a biopsy.
I appreciate your support Tom very much, you have helped me in so many ways, more than you realize!!
Blessings to you,
Rhonda

Rhonda,
 
How did I miss your good news announcement!
 
OK - here is some advice on the chest tube.  I've had many installed and removed.  Every time, my thoracic surgeon short counted me.  You know - "I'll pull it on three - ready, one, two" - pulls tube!  And I believed him!  It is a two person procedure.  They use a circular stitch that is installed around the tube and the nurse grabs the sutures.  When the doc pulled the tube, the nurse pulls on the sutures.  And, it really doesn't hurt.  Just a bit of drama that is now a humorous memory.  But, no one ever told me, so beware of the short count!
 
Stay the course.  
 
Tom

Hi Vicki, 
Welcome to the message boards. http://forums.lungevity.org/index.php?/forum/3-introduce-yourself/ I invite you to click that link to chat with other people who have been newly diagnosed as well. We have amazing survivors, caregivers, and advocates in these message boards. You have our full support. 
 
I look forward to getting to know you,
Cindy

Hi Fannymae,
I'm sad to hear that you are going through this. Please fill out this form and we will connect you with a support mentor. http://www.LUNGevity.org/LifeLine
 
We are here for you,
Cindy

Hi everybody,
Got my call, surgery is scheduled for next Tue, the 16th. VATS left upper lobectomy with several lymphs. Scared but sure is better than the alternative!!!
Will post again after surgery.

Aaron,
 
You sir are in a quagmire.  There may be many benefits of a national health service but choice is not among them.  I'm not from the UK and I don't have a clue how you can influence your General Practitioner to be sensitive to your concerns.  Our US medical system has many faults but we can choose doctors we are comfortable with and obtain second and even third opinions without permission of the Queen.
 
So, here are my suggestions.  I'm a retired US soldier and I've used my Army connections to gain access to doctor's opinions outside the civilian community.  The UK armed services has a medical establishment.  Might you engage that establishment for assistance?  If not performing an actual procedure, to apply influence to have your desired procedure performed.  
 
I did a quick Google search on UK commonwealth nation health systems,  Might there be an opportunity to travel to one of these countries and have a medical consultation.  Outside of the commonwealth nations, the Azores, popular island destinations, appears to have a "for pay" medical system that you might be able to use to get the type of test you desire.  The problem, however, might be getting the UK system to accept the test results.  But, at least you'd know the results.  Know, however, I'm not an expert on international medical policy and there may in fact be quite a lot of red tape using the Azores medical system that I'm not aware of, including the availability of testing technology to address your concern.
 
No need to apologize about your essay.  Lung cancer is a nightmare and at this site, we completely understand your concern and are most willing to read about it.  I just wish I had a useful answer to your very important problem.
 
Stay the course.
 
Tom

Alpha,
 
No need to apologize for typing skills.  My spelling is horrible and my stuff would be unreadable without computer assisted spell checking.  This follows up on Donna's experience and advice.
 
I also had pre-surgical radiation and chemo.  In my case, I was told the chemo was "adjunct" treatment meaning it was not the full strength stuff because the radiation was the primary treatment agent.  Chemo was used to sweep up any cells in my blood stream that got dislodged by the killing power of radiation.  Therefore, I didn't lose any hair during my pre-surgical chemo.
 
I had the same chemo recipe after surgery and after tumors appeared in my remaining left lung.  This was the full strength, high octane, real deal,  taxol carboplatin.  My hair fell out, even my eye brows and eye lids, 1 day after my second infusion.  
 
To your question about why people don't loose all their hair.  Hair loss varies from person to person.  Chemo attacks cells with rapid metabolism and some hair cells have faster metabolic rates than others.  The attack varies.  I've known lung cancer patients to have full strength taxol carboplatin and loose no hair.  I can tell you, that hair loss is a temporary side effect.  All of mine grew back.  I started treatment at 53 years old, and now at 65 my hair loss is an old age phenomenon.  But after treatment, it all grew back.
 
Stay the course and welcome here!
 
Tom

Jean, you sound like a wonderful, caring daughter. It sounds like you are doing all you can by being there for your mom and going to the doctor appointments with her. This cancer journey is confusing and an extra set of ears is always a good thing. You have come to the right place here at Lungevity you will find so many caring, helpful people. God be with you and your mom.

Merilee,
 
Sounds like your treatment is first line (conventional radiation with adjunct chemo) and your question is will it work.  Yes, it can work.  None of us can tell you it will work.
 
Today, I celebrate 12 years of life since my diagnosis date.  I've had the same "will it work" question you've had.  I've failed a lot of treatments.  But finally, one worked for me and I believe one's attitude toward treatment and outcomes is essential to successful treatment.  So, I encourage you to believe your therapy will work.  I also am well acquainted with the feeling that your entire life revolves around cancer.  That you can control.  If you choose treatment, then one of the beneficial effects of treatment is extended life.  I'd forgotten that important point.  Don't let cancer treatment take over your life.  Look at your forehead everyday in the mirror in the morning.  If you don't see an expiration date stamped on your forehead, resolve to have a good day.
 
Stay the course.
 
Tom

Great inspirational video!!
Thank you

Welcome here Kelly,
 
I trust Alimta is working for you.  
 
You have a noble goal.  Our disease is so underfunded when a congressman or senator gets it, they are surprised to learn our most effective treatment is hope!  Here is an interesting exercise.  Look at this table - https://report.nih.gov/categorical_spending.aspx - and compare lung cancer funding by the National Institute of Health to AIDS funding.  Now consider that annually lung cancer kills about 160,000 in the US while AIDS kills but 14,000.  I shake my head every time I look at this data!
 
I look forward to continuing to hear good reports from your treatment progress.
 
Stay the course.
 
Tom

Thank you for updating us! Its good that you are eating healthy. We have a Healthy Living forum here too where I post healthy recipes. I hope if you have found some good recipes you will share them with us there. 
 
Best,
Cindy

Hi  Rhonda, 
How are you feeling?
 
Thinking of you, 
Cindy

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Rhonda,
 
So wonderful to read you are doing "whatever needs to be done to get the monster out of us and see better health."  
 
I look forward to meeting you at the DFW summit.
 
Stay the course.
 
Tom

Thank you Cindy, I will register and hope to be able to attend. With FM and CFS I don't get out as much as I would like but would live to attend. Just being newly diagnosed I have so many questions. Very hopeful now as I see so many survival stories. I am going to TexasOncology tomorrow and did decide to get a second opinion at UT Southwestern Cancer Center inDallas. Have read teaching universities can offer so much more.

Hi Ralph, this is a message that one of our LUNGevity friends was trying to send to you but her computer logged her out before she got a chance to post it. So she kindly asked that I post it for her. 
 
 
Hi Ralph,
 
After reading all of the comments, I have to say that you have gotten some top notch advise.
I love that most of them had little to no pain. Even after hearing that, it seems that you still have not scheduled your surgery.
​Maybe my tale will help. I had what is called a Pancoast tumor. Basically that means that it was way up in the tippy top of my lung.
​This actually helped me to find it relatively early, as it was compressing some nerves coming out of my spine, causing pain.
​Unfortunately, it was also growing up in between the vertebrae in my neck. I had to have chemo and radiation in order to shrink
it enough that it could be surgically removed. After I finished the treatments, the doctors needed me to wait 4 week
​before they could do a new CT scan that would show if the tumor had shrunk enough for surgery. All of the swelling had to have
a chance to go down for accurate pictures.
 
​I took that time to get away and planned a sort of "bucket list trip". Being a bird lover from NJ with not a lot of money
​but some pretty expensive wishes I decided that the closest "new bird" around that I could almost guarantee seeing
​would be a Puffin. They spend some time on rocky "islands" off the coast of Maine. I also had gotten a passport
​several years prior ~ ​shortly after moving in with my husband. I was determined that I "Would NOT die without ever
​having used my passport! So, since I knew that you must now have a passport to enter Canada, and Maine was
​MUCH closer to Canada than it is to NJ, we would also go there for 2-3 days.
 
​Just as we were approaching Canada my surgeon called my cell. The team had been looking at my various prior CT and
​PET scans and felt good about my being a good surgical candidate and wanted me to meet with a neuro/ortho 
​surgeon that they sometimes brought in from a nearby hospital. Could I come in Tomorrow?! No, I am 3 miles from
​the 2nd half of what may be my last vacation!! This is when they told me that he would be going on HIS annual
​vacation in a few days and they didn't want to wait the extra week because surgery always is done in the 3-5 week
​range and it could be very bad to delay much beyond that!!
 
Since we had driven and it turned out that they couldn't move the doc, ORs and several other things fast enough the
surgery was set for after the visiting surgeon returned from his trip. I had conveniently "blocked" the neuro IE spinal
​involvement and associated fears from my mind at some point during treatment and was in an unimaginable state
​of terror for the next several days. All I could imagine was that if I somehow didn't die on the table, I would be a
paraplegic for the rest of my soon to be miserable life!! Nightmares woke me every few hours, A/K/A any time I
managed to doze off for more than a minute.  
 
​One day my dear hubby was deep in thought and looking Very Sad ~ more sad than had become usual since this started. 
He didn't think I caught it when he wiped a tear​ away. When I finally got him to admit that he was upset and "demanded"
to know what it was about, he told me that he was very worried about the new surgeon. I admitted that I was too and asked
him to explain further. He said that he was terrified that the surgeon would examine me and the new CT scan that he was
having done just before our "get to know ya" appointment, and decide that I was not a good candidate for him to operate on.
WOW!! My mind did the fastest 180 in the history of surgery!! Now I not only Wanted the surgery, I was also terrified that I would
be turned down for it!! My head was spinning! So to speak 0_o
 
​Thank God he took me on! It wound up being what was basically a "two for the price of one" surgery. The ortho/neuro
​doc came in first and removed approximately half of three of my cervical vertebrae in order to free the remains of the
parts of the tumor that had woven its way in between the bones but had not yet actually touched the spinal cord. Once
he placed a rod in my neck to keep the vertebrae in place, he tagged in my oncologist surgeon and left. This guy removed
the top lobe of my right lung along with 2.5 ribs that the tumor was up against. It seems that anything the tumor touches
must go or it could have that one tiny little cancer cell on it that will grow into it making new roots and all sorts of bad
things could happen. It turned out that I had to have another surgery a year later to replace that little rod with 2 big rods,
one on each side of the spine. I joke that the kyphosis was due to my fat head being too heavy, but basically my head
started to tilt at a very bad angle and I needed stronger rods. That second surgery added about 2 inches to my scar.  
The original scar started on my upper back right down the center, starting at the point that would sort of be even with
​an imaginary line if you drew a line from where the neck meets shoulder on one side and went straight across to the
​other side. It goes down to a couple of inches before the bottom of my shoulder blades and begins to angle off to
​the right so that it goes under the shoulder blade and around the side to just below the outer side of my right breast.
​The second surgery added a half inch at the top and extended the straight part of the first scar down a little more
​than an inch. I don't remember the total number of inches that the first scar was, but the visiting nurse that they sent
​to my house to make sure the wound was healing well, measured it with a paper tape measure on her first visit. I know
​that it was over 20 inches ~ 26? 28? whatever, it doesn't matter.
 
I am not telling you all of this, and bringing too much of it back to the surface for myself, to scare you!! It is to prove 
a point. As terrified as I was of each of the parts of that first surgery, there was NO CHANCE in a scary, fiery place,
that I would wait a minute longer than I had to in order to get that Blankety-blank-BLANK tumor out of me while the
doctors said that they could and would do it as safely as possible!!!!
 
This coming March will be FIVE years since my diagnosis and August 15th 2016 will (God willing!!) be 5 years that
​I will be CANCER FREE!!! After each scan ~~ I still go twice per year ~~ I announce to anyone who is a "friend" on
​Facebook that I am still N.E.D. a/k/a No Evidence of Disease. As soon as the oncologist tells me that the scan
​"looks good" I breathe the deepest sigh of relief in my life! Yes, each scan is a bigger sigh. Each scan that comes
​up NED gives me a feeling of not just relief, but of joy and hope that I will now survive until the next scan with NO
​cancer in my body!!
 
I  told you all of this because I believe that if the doctor feels that you are lucky enough that he/she can remove
​those hideous cells growing one atop the next, and that it sounds like you feel she/he is telling you the truth, and you
trust him/her to do this well, that you should HAVE  IT DONE. And done sooner rather than later. As I found out,
sometimes the window in which the surgery can be successfully done is small, and postponing can be dangerous,
sometimes even deadly.
 
I will tell you that I did have pain, I did have two chest tubes that stayed in for a couple of days, and I did have the
wonderful pump that will give you as much pain meds as you want as long as you don't exceed the limits programmed
​into the computer on the pump. Because my surgeries took nearly 18 hours, you could say that I wasn't up and
​walking until the day after surgery, but it felt like the same day to me!! LOL! I was in there for a week and I hated
it! But I would do all of it again!! I hope that I didn't cross any lines or go "too far" in spilling my story in so much
"gross detail" for you or anyone reading. I have just seen so many great people stolen from us far too soon by this
​horrible cancer!! Too often it is found too late and there is nothing left to do but to "make them comfortable" and I
just can't stand that so many people are robbed of some beautiful things in life by cancer that might not have done
so much damage if only if only it had been found sooner!! 
 
Sorry about all of the "run on sentences" too!! When I get going..... OY!!  And yes, I do laugh, at myself and pretty
​much anything worth a giggle, because I STILL CAN!! I hope you get the same feelings some day soon!
 
All the best!
Mary
 
 
 
 
 
If  you have lungs, you can get lung cancer. If a cough doesn't go away, or shoulder/back pain can't be linked to an injury, DEMAND a chest x ray or CT scan to rule out cancer. EVEN if you never smoked.
Dance like nobody's watching - Love like you'll never get hurt

New Agents for Acquired Resistance in EGFR Mutation-Positive Patients: C01686 and AZD9291
March 10th, 2014 - by Dr. Jack West
Since the introduction of the epidermal growth factor receptor (EGFR) tyrosine kinase inhibitors (TKIs) for patients with lung cancer, we have seen a subset of patients do remarkably well, with dramatic and long lasting responses. Unfortunately, within a few months of those impressive responses, we learned that people invariably develop acquired resistance to these agents. Over the past period of more than a decade, lab-based scientists, oncologists, and of course patients have been eagerly seeking treatments that can lead to promising responses again in patients who have developed acquired resistance. A couple of new agents show promise that we haven’t seen before in this setting, and they are now the subject of emerging clinical trials that show the promise of breaking an impasse that has existed for more than a decade.
The first of the two I’d like to highlight is CO1686, from Clovis. This “third generation” oral irreversible EGFR inhibitor effectively blocks not only activating mutations but the most common mechanism of resistance, the T790M mutation that is detected in about 60% of tumors that demonstrate acquired resistance after a response. It also has the potential advantage of not inhibiting “wild-type” (non-mutated) EGFR at the typical doses used, which means that it doesn’t cause the same severity of rash and diarrhea that the EGFR inhibitors we’ve had available thus far produce.
http://ow.ly/urB7s
Though CO1686 is still early in testing, Dr. Jean-Charles Soria recently said that 6 of 9 patients with a T790M mutation-positive cancer demonstrated a significant response at the newly established phase II dose of 900 mg by mouth twice daily, and with no rash. Though still obviously still in early stages of development, the early promise of two-thirds of the patients in the target group responding is leading to multiple new trials, including
A phase II/III study comparing CO1686 head to head against Tarceva (erlotinib) in newly diagnosed patients with advanced non-small cell lung cancer (NSCLC) that is EGFR mutation-positive
A phase II trial of Co-1686 in T790M-positive patients after progression on one prior EGFR TKI
Another phase II trial of T790M-positive patients after progression on >1 EGFR TKI or chemotherapy
A phase II trial of 2nd line or later CO1686 for patients who have a T790M mutation detected by a serum assay; and
A phase III randomized trial vs. chemotherapy in second line or later.
Clearly, this reflects a major investment and a lot of optimism in this agent.
A second agent that has shown similar promise is AZD9291, another third generation EGFR inhibitor with essentially the same mechanism of action. Dr. Malcolm Ranson and colleagues reported on results from an 89 patient trial of patients with an activating EGFR mutation and acquired resistance, though this study allowed patients with either a T790M mutation or not. The study included testing of the drug at a wide range of doses, from 20-240 mg/day, with no dose reductions required, and almost exclusively mild (grade 1 of 4) rash and diarrhea seen. What was especially encouraging was that 15 of 35 evaluable patients had a response, including 9 of 18 with a T790M mutation. The follow-up plans for this agent are still being defined, but there is a lot of excitement about this agent as well.
Though we’re talking only about a few dozen patients and still learning about these agents, I’ve never been as optimistic about breaking through the impasse of acquired resistance in EGFR mutation-positive patients. I hope to share more information about these agents and perhaps others very soon.

We are here for you. Feel free to post here anytime you feel up to it. I can only imagine how overwhelmed you must feel. Some people like in person support groups, others not so much. LifeLine is just communication through phone or email with someone who has experienced a similar situation as yours. I just thought I would throw that out there. Feel free to roam around these message boards and read what you like. We have wonderful survivor volunteers in here that have so much wisdom and helpful hearts. If I can do anything to support you through LUNGevity's support services, please reach out to me anytime. 
 
We care about you,
Cindy

Hi Ralph, 
Welcome to the LCSC message boards. I hope Tom's words have helped you feel more at ease with your treatment option that your doctor has recommended. I am just wondering if there is a Nurse Navigator in your support team who can also talk to you more about your treatment plan? We can also connect you with a one on one support partner through the LUNGevity LifeLine Program. Here is the link http://www.LUNGevity.org/LifeLine
 
I look forward to getting to know you.
 
Cindy

See you there Barb! You may want to bring a warm sweater, or small lap blanket. The temperatures in the conference rooms can sometimes fluctuate.