Rhonda 58

Hi Mary,
Whoa!! I can't even imagine ribs being broken and removed and the post pain from something like that. I'm sorry to hear this still affects you 4.5 yrs later.
My pain seems to be related to the lower lobe wedge resection, severe pain starting late in evening and lasts all night long waking me every two hrs because of pain. Nerves maybe??? I have minimal pain from the upper lobectomy.
Since my pain level is not severe during the day I started on Aleeve today and will use prescription meds at night, this is what my PA suggested the cut down on the amount of Tylenol I have been taking daily.
I got the final report yesterday and it did not change, all lymphs were negative for cancer and the nodule removed from lower lobe was benign (infectious infiltrate). The doctor feels all cancer was removed with upper lobectomy and I need no follow up treatment, just follow up scans. So for right now, I am NED, YAY!!!!!
Hope you are doing well Mary!!!!!
Blessings,
Rhonda

Hi Everybody,
I made it and am back home today. So here is how it went.
When I first got there the doctor told me me they were going to anesthetize me the first do a CME, where they make a incision in your neck and scope to biopsy my mediastinal lymph nodes. If they had been positive for cancer that was as far as they would go, no lobectomy.
When I woke up my family relayed to me what the doctor said.
All lymph nodes were negative.
He did a complete upper lobectomy.
He also did a lower wedge resection because the PET showed a suspicious nodule, it was benign, so no cancer there either.
The 3.6cm cancer was removed in the upper lobe.
He told my family that I will not need follow up chemo because they got all the margins.
Just going to be honest, I had a really bad day yesterday. They did not give me a morphine drip so I was taking Norco by mouth and Toradol by IV, in a lot of pain (to be expected) I had a reverse reaction to the narcotics, I was very wired and had been awake for 40 hrs, it was only late last night that I could get 4 hrs sleep sitting up (after asking for Xanax) this morning I refused more narcotics and went to Tylenol.
Yesterday I was throwing everything up, even water, they thought I had a Ileus, did a stomach xray, didn't get the report but it resolved overnight and today ok.
Still having a lot of reflux figure it is from the scope, got lots of Halls lemon cough drops for throat.
They sent me home with Tramadol which I will tolerate better. Doesn't get rid of the pain but after major surgery nothing but time will help.
They removed my chest tube yesterday and no it sure wasn't pleasant but afterward felt much better.
I feel pretty good considering, the worst pain is my neck, chest, where they scoped me.
They also told me they had to use a larger intubation tube for my procedure so I'm sure that is also why it's pretty painful.
Before I had my surgery my oxygen levels were 97/98 during the day without oxygen, today they are 95/96 without oxygen so all my worries about being on oxygen 24/7 because of getting the lobectomy with COPD were unfounded.
I want to thank you all for your prayers, support and encouragement.
I will do everything they told me to post op so hopefully will heal quickly.
Blessings to you all!!!
Rhonda

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

Hi Barb,
Yes, this being Thu I just don't think I will make the summit Sat will be 11 days post op and although I am recovering, it is slow going. I am still just working on my building up my walking inside for now, trying to get more stamina for a real walk outside. Don't think I'm even ready for a walk around the W...... store yet. I'm disappointed I won't make the summit this year, I do want to say I am so thankful I found this site and for all your support and encouragement. It was all of you that saw me through my fears, calmed me when I needed it and answered all my way too many questions.
I know my journey with LC is not over and will always be in the background of my future but just knowing that I now have what I consider to be my extended family with my Lungevity friends will make the journey so much easier.
Have a wonderful time at the summit and consider yourself hugged Barb since I won't be there to give you one in person.
Blessings,
Rhonda

Hi Everybody,
I made it and am back home today. So here is how it went.
When I first got there the doctor told me me they were going to anesthetize me the first do a CME, where they make a incision in your neck and scope to biopsy my mediastinal lymph nodes. If they had been positive for cancer that was as far as they would go, no lobectomy.
When I woke up my family relayed to me what the doctor said.
All lymph nodes were negative.
He did a complete upper lobectomy.
He also did a lower wedge resection because the PET showed a suspicious nodule, it was benign, so no cancer there either.
The 3.6cm cancer was removed in the upper lobe.
He told my family that I will not need follow up chemo because they got all the margins.
Just going to be honest, I had a really bad day yesterday. They did not give me a morphine drip so I was taking Norco by mouth and Toradol by IV, in a lot of pain (to be expected) I had a reverse reaction to the narcotics, I was very wired and had been awake for 40 hrs, it was only late last night that I could get 4 hrs sleep sitting up (after asking for Xanax) this morning I refused more narcotics and went to Tylenol.
Yesterday I was throwing everything up, even water, they thought I had a Ileus, did a stomach xray, didn't get the report but it resolved overnight and today ok.
Still having a lot of reflux figure it is from the scope, got lots of Halls lemon cough drops for throat.
They sent me home with Tramadol which I will tolerate better. Doesn't get rid of the pain but after major surgery nothing but time will help.
They removed my chest tube yesterday and no it sure wasn't pleasant but afterward felt much better.
I feel pretty good considering, the worst pain is my neck, chest, where they scoped me.
They also told me they had to use a larger intubation tube for my procedure so I'm sure that is also why it's pretty painful.
Before I had my surgery my oxygen levels were 97/98 during the day without oxygen, today they are 95/96 without oxygen so all my worries about being on oxygen 24/7 because of getting the lobectomy with COPD were unfounded.
I want to thank you all for your prayers, support and encouragement.
I will do everything they told me to post op so hopefully will heal quickly.
Blessings to you all!!!
Rhonda

Thank you Donna,
I am doing pretty well today. I was able to take a shower and wash my hair, boy, that was exhausting but sure feel better since I did it.
My breathing is pretty good, I have a nebulizer at home now since I had the pneumothorax so able to use it as needed every 4 hrs. I used it once today but going to try to not depend on it. The more I'm able to walk around and do my breathing exercises the better my breathing is.
I have 5 incisions including the one one my neck and when my husband removed the dressings he said they all look good.
I had a low grade temp this am but that's expected and its normal now since I took my Tylenol.
Feeling blessed!!!

Barb,
I love your humor!!! I try to keep mine too, it helps the family cope better, especially my 38 yr old son who was just devastated. My dad died @ 65 with LC and my mom @ 59 with LC, so that has been the only experience my son has had and all he could see was losing his mom.
No, it don't sound like you breezed through your surgery at all, OUCH!! I am so thankful you were a candidate like me for surgery, so many are not able to have surgery, also that your surgery was a cure for you, what a blessing!!! I am also very blessed in mine being found early.
I am sure going to take your advice about texting while on those heavy drugs Mine is upper left lobectomy and I'm left handed so thinking I might not be too comfortable texting for at least for a couple of days.
Thank you for your encouragement Barb!!!
Will update as soon as I'm able.
Blessings,
Rhonda

Rhonda, I didn't exactly breeze through. I had some complications. LOL! And I had my sister take pictures so I'd never be tempted to smoke again. I got something called Sub Cutaneous Air. So, was in the hospital a tad longer. 7 days in all. The Path report takes 14 days for results. So at least I only had a week after surgery for my results. IAN0M0. Stage one a, cured. I see them again for CT in May. They took so many dang lymph nodes, it's a wonder I have any left in my bronch area.
The docs get a feel for these things but are so careful. Oh, and for me, having the chest tubes removed was a weird but not painful thing. The second one I remember better. No pain. Just "whoosh." One guy did it and then took a stitch or two at the area.

Rhonda, I had a bunch of people praying for me. In fact, it was kinda a miracle it was found so early stage. I'll be praying for you tomorrow. Careful. Don't text on heavy duty pain pills. I did and I'm still blushing from embarrassment.
Hugs, Barb Jackson

Hi Rhonda! Are you having the surgery at Clements? Part of UT Southwestern. Mine was there on a Tuesday also. I didn't have VATS. I had robotic and there is a difference. Since they told me they do the robotics on Tuesday, maybe that's what you are having. My doctor is Kent Kernstine. The whole staff there is great. In fact, I had a doctor who did a couple of skin biopsies on me for a clinical trial. Turns out he's going to be one of the guest speakers at the Hope Summit. I'm going. You might feel up to going. I know I was much better by my 2nd week home.
Good luck this Tuesday. I'll be praying for you. Barb Jackson

“Dan is actually a wonderful example of what you can achieve with what’s called personalized medicine,” Dr. Camidge said.
Portraits of the most blissful year of Dan Powell’s life rest on the mantel and hang on the walls of his living room.
On top of the world at 35, Powell married the girl of his dreams, became a father and bought the white Colonial with refinished hardwoods on a quiet street near the base of Paris Mountain.
He loved his job — or really, jobs — as Greenville County air-quality director and city planner for Fountain Inn. He wrote grants that brought in millions of dollars to revitalize Fountain Inn, build safe trails and start clean-air programs.
Words scripted on another living room wall — “With God all things are possible.” — give a glimpse into the year that followed.
Powell — a health-conscious, fit, nonsmoker — was diagnosed with Stage 4 lung cancer on Jan. 23.
He was told he had nine to 12 months to live. Then doctors discovered a new drug that could save, or at least prolong, his life.
But it was costly, $9,600 a month. By then Powell was on a fixed income, and insurance wouldn’t cover everything.
So when he needed help most, the man who made a career writing grants for others scrawled one more grant request on a sheet of notebook paper. This time, he hoped a grant would save his own life.
And in efficiency never seen in government grants, he was approved the next day.
The journey begins
It started with shortness of breath on an early December afternoon, as Powell walked along a path that Fountain Inn planned to turn into a walking trail.
He’d worked for years to bring money to the close-knit community to expand its trails and improve its downtown so more visitors would discover the city he helped revitalize.
Breathing difficulties were nothing new to Powell. He had wrestled with childhood asthma, and he knew how to manage the disease.
In fact, his asthma led him to an interest in air quality. As director of Keep Greenville County Beautiful, city planner for Fountain Inn and director of special projects for Greenville County’s planning department, he sought to keep Greenville’s air clean to help others breathe easier.
He helped bring the Breathe Better Air at School anti-idling program to Greenville County Schools. He wrote a grant to build sidewalks and trails through Safe Routes to School, and another to establish the southern tip of the Greenville Health System Swamp Rabbit Trail through Fountain Inn.
Powell lives to help others. He does it constantly, reflexively, sometimes overextending himself in the process.
He thought his breathing problems might be stress-related due to long hours and big changes. It had been a monumental eight months since he married Rebecca, moved into their new home and began the process to adopt her 6-year-old son, Davis.
He had passed his annual physical with flying colors in November, but his breathing problems persisted, and he came down with back-to-back colds, developed minor heartburn, a slight stubborn cough and began to tire quickly. He thought he might have pneumonia.
The idea of pneumonia alarmed him since his grandfather had died from it. So he made another appointment.
This time the doctor ordered a chest X-ray, which did show an infection. He went to a pulmonologist who took a bronchial scope on Martin Luther King Jr. Day.
The results came back that Thursday in January.
“It seems like forever, and we’re waiting on the doctor to show up,” he said. “He walks in the room. He sits down on the stool and he puts his hand on my knee, his head’s down, and he says, ‘You’ve got Stage 4 lung cancer.’ ”
Powell turned pale, needed air, just needed space. He stepped into the hall, dizzy, he nearly collapsed, sat down. Nurses brought water.
Then, he gathered himself.
“I got back up and walked into the office and said, ‘I want to go to the hospital.’ ”
No, not next week, he told his doctor. “I said, ‘Now.’ ”
Hours later, he met his oncologist and lay in a hospital bed, surrounded by family and friends.
Images showed cancer pockets that “looked like a Christmas tree,” Powell said. Cells had spread to both lungs, his blood, lymph nodes and bones.
Doctors said they could treat it, but there was no cure. His cancer was too widespread for surgery.
On the same day he was diagnosed, Powell started chemotherapy.
A moment of change
It’s natural to question while you toss and turn in a hospital room as buzzers beep and nurses check in, and that night, Powell couldn’t sleep.
His mind raced. He knew lung cancer had been tied to air pollution, and now he believed his cancer could be a result. After all, he’d grown up near a coal plant and already had asthma.
Last October, the World Health Organization declared air pollution to be a carcinogen and its link to lung cancer and possibly bladder cancer was unmistakable.
Powell, the air quality champion, couldn’t believe he now had lung cancer.
His turmoil reached an apex that morning, and he still chokes up when he recalls the moment his outlook changed.
A custodian came into the room, and while cleaning up, she asked if he was all right. No, he said.
He explained his cancer, and she told him he was young and not to believe the odds.
“I’ve seen people walk out of here with Stage 4 lung cancer and have amazing results,” she told him.
“She literally got down on her hands and knees … and she held my hands and said, ‘It’s going to be all right,’ ” Powell said. “She prayed with me and said, you’re going to be healed. God wants to keep you around.”
Her words sunk in.
Then the planner, the analyzer, took over. Powell asked for a second opinion and another oncologist to give him better news.
Enter Dr. Fahd Quddus, who wouldn’t give him a life-expectancy timeline, but gave hope that his cancer might be linked to a specific mutation in his genes that the medical world had just discovered in 2007.
The test results would take a month. Chemo continued.
Finding his way
Bound to a cane, a walker or a wheelchair, his brown hair gone from chemo and his already thin frame 25 pounds lighter, Powell waited.
The news came as snow enveloped Greenville on a mid-February afternoon.
Powell had ALK-positive (anaplastic lymphoma kinase) non-small-cell lung cancer, which is found in only 4 percent of lung cancer patients, said Dr. Ross Camidge, an oncologist at the University of Colorado Cancer Center and a leading researcher in lung cancer treatments for patients with specific gene mutations.
When the ALK gene mutation was discovered in 2007, a drug already in clinical trial was discovered to be an ALK inhibitor, Camidge said.
Camidge is one of the group of researchers who discovered the drug, called Xalkori, which blocks cancer cells from spreading and can lead to remission.
Before Xalkori, lung cancer patients faced the same basic cancer treatments, he said. But now patients can be screened for the ALK gene and then treated individually, he said.
Camidge called it a perfect storm of individualized care, giving specific treatments to groups of people who were likely to benefit from it the most.
There’s a debate brewing about whether the cost to research, test and bring drugs like these to market is worth the price, since the drug only works on specialized types of cancer found in just 4 percent of lung cancer patients.
To those with cancer, it’s not much of a debate. Powell needed to find a way to pay the $115,000 cost per year to buy it. Though he had insurance, it wouldn’t cover everything.
Too weak to sit at a computer to fill out the request for assistance, Powell hand-wrote his request to the national nonprofit Good Days from Chronic Disease Fund, which provides assistance with ongoing medical costs to patients in need.
He found out the next day he was approved.
A beautiful image
With belt cinched tight and short-sleeved dress shirt hanging loose from his frame, Powell sunk into an oversized armchair that enveloped him in his fan-cooled living room.
He shook the rectangular white Xalkori container filled with 250 milligram miracles.
“This medicine right here is what’s saving my life,” Powell said.
Quddus told Powell the medicine could contain the cancer, at least for a time, but it’s not billed as a cure.
Powell wanted a cure. Another opinion. He called Pfizer, which makes the drug. He traveled to Yale Medical Center to speak with another leading lung cancer researcher. He connected with a mentor and four-year lung cancer survivor at a support group called Lungevity. You’re on track, they all said. Trust the medicine. Let it work.
Two weeks later, he had another CT scan. Quddus called him back to his office to look at the images. Two nurses sat in the room, both in tears.
“I was like, what’s going on? And they were just wiping tears away, and he was in big smiles and he said, ‘Look at this.’ ”
“When you looked at the two scans of my lungs, there was like a two-thirds reduction in tumors, from going all over the place to almost gone.”
His cancer was in remission. He left the office and drove straight to a car dealership to buy a Nissan Leaf fully electric car.
Sharing his story
Now two months have passed. Powell celebrated his 36th birthday with a cake in the hospital, and celebrated again when scans showed the cancer gone from all but his lungs, and the cells in his lungs are tiny.
He talks about watching his son graduate from college. He hopes to qualify for a new drug, Zykadia, which was approved two weeks ago and is stronger than his current drug.
“Dan is actually a wonderful example of what you can achieve with what’s called personalized medicine,” Camidge said. “If you know what’s driving somebody’s cancer, and you give a drug targeted to that abnormality that’s driving their cancer, then the kind of response that Dan’s got is actually typical.”
The cancer could return, Camidge said.
“You create an environment that is effectively suppressing the cancer very successfully, but like any environment, the cancer will adapt to it,” Camidge said. “At some point in the future, parts of his cancer will figure a way around it and start to grow.”
As inhibitor drugs prolong lives, researchers scramble to build the next generation of drugs and race to find a cure, Camidge said.
Powell wants to share his story. He’s recorded YouTube videos, he spoke at a Moonlight 5K race and traveled to Washington, D.C., to a Lungevity national conference.
In June, Good Days from CDF will come to record his story to share with other patients seeking help with medication payments, said Peggy Foley, Good Days’ senior director of marketing.
“The connection between the possibility of the environment, we don’t know, playing a role in him getting this disease, and the fact that he’s been so vocal in wanting to address it … we just think it was a really good story to increase awareness,” Foley said.
Powell has thrown himself into new endeavors. He’s trying to expand the number of electric vehicle charging stations in Greenville. He’s raising awareness for lung cancer research.
He will serve as grand marshal for the Relay for Life on Friday at J.L. Mann High School.
For Powell, it’s a matter of life or death.
“This buys me time,” he said, picking up the miracle pillbox again. “Some people go a year. Some people go six years, but I need to know what’s next after this.”
Contact reporter Nathaniel Cary at 864-298-4272 or follow @nathanielcary on Twitter.
http://www.greenvilleonline.com/story/n ... r/9375813/

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/
 

​Well said!!
 
I tend to make sure that when I see the doctor before the surgery or procedure I ask them how THEY are feeling/doing!! Did they sleep well? All the kids are doing well? Wife/Hubby is happy? LOL!! It sounds a bit like what you said. At the very least I get a giggle out of them and that is MY way of reminding them that I am a person, parent, spouse, pet owner or whatever else I want them to think of me as when they open me up and I suddenly look like any photo from a text book or slide show.
 
​Always looking for a smile or a giggle!

Cancer patients get a unique appreciation and understanding of the medical profession by the very nature of our disease. At the minimum, we interact with our GP, Oncologist or Radiologist, and a brace of medical testing and treatment nurses and technicians. This experience base gives us a lot of insight into the profession. Here is a synthesis of the insight I've accumulated over the years.
Never go to a diagnostic "results revealed" medical consultation alone.
If you don't understand the words the doctor uses, ask them to re-explain without the "medical/techno-speak."
Tell the doctor your special circumstances or medical needs before hospitalization or infusion treatment. Ask these be captured in the admitting orders. Ask to see the admitting orders at admission or before first procedures. Don't get admitted if the order does not cover your special circumstance.
Most procedures can be painless or discomfort can be minimized but you need to ask for relief before the procedure. For example, ask for a lidocaine injection before IV insertion or for Xanax to reduce anxiety during scans. These are examples of special circumstances that should be discussed with the ordering doctor at the time he orders the procedure. Don't be afraid to complain. Be kind at first but if the situation is not resolved to your satisfaction, add anger. Remember, you are paying for all this and you are a customer as well as a patient.
People in the medical profession are like people in any profession. Some are good and some are not so good. The difference is medical professionals have unique authority and special powers that say a consulting engineer or a lawyer will not have. To get prospective on a new medical professional, pay attention to how he or she interacts with the office or clinical staff. They won't treat you any better than the people they work with every day.
The best doctors treat people, not patients. Try and find ways to remind them you are a person. Tell them you are afraid or uncertain, for example, to help them recall they are dealing with a human being. I always find a way to ask if they pray before a procedure.
Most medical professionals, unless also cancer survivors, won't have any idea how or what you are feeling. Tell them before, during and after a procedure.
 
 
 
 
 
 
 
 
 
 
 

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

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.

AWESOME!! So happy that you can have VATS!! It is a lot for each of us to deal with, no doubt! You have gotten some of the best news so far with this as well as the IA or IB staging! Mine was IIB and was Dx March 23, 2011 chemo & rad May & June with lobectomy the "hard way" Aug 2011. NED (No Evidence of Disease) ever since Thank God!!
 
I jokingly say the "hard way" because I had 2 surgeries in one. The first was a Neuro/Ortho Surgeon who had to break apart 3 vertebrae in my neck to get the tumor free, then the Onc Surgeon did the lobectomy and chest wall resection. NO one ever wants that "2fer" if they have any way to avoid it! LOL
 
The one thing I do hope we share is hearing those beautiful words that we shorten into NED and we ALL want to hear after every procedure, surgery and scan from here on in. Please keep us updated and stick around after you are all Happily NED ever after! You have to share your story to the next new person that pops in on us  
 
XoxoX
 
​

Hi my name is Vicki.i'am 33 years old and was diagnosed with stage 4 lung adenocarcinoma in December 2015. Big shock to myself and my family I have 3 young children and want to fight this and be around to see them grow up. I'm currently receiving chemotherapy and got 2nd cycle this Friday after last week was postponed due to me being in hospital with pneumonia hope to make some friends on here and find support x

​Rhonda,
​I will keep you in my prayers extra often on Tuesday!! Just remember you want that ugly stuff gone ASAP!!
 
Vicki,
Hi! I am sure it was a HUGE shocker! Most people think of lung cancer as being for old guys with smelly stogies between their lips. Not that anyone deserves any kind of cancer, but 33, 40 or even 47 year old ladies are not the typical image that comes to mind. I have been STUNNED by how many young women are diagnosed out of the clear blue!! Girls/ladies in their 20s and 30s who jog, mountain climb, run marathons and all kinds of 100% healthy lifestyles. Not only do people like you and me not expect them to be diagnosed with lung cancer, their doctors don't expect it either. I have spoken to people who have been where you are. Many go through so many other diagnosis' like allergies and asthma and pulled muscles. It has happened to older people who quit smoking decades before too. My hubby saw it happen to his mom.
 
That is why people like me shout lung cancer facts every chance we get!! We need people to know MORE about lung cancer than they do about breast cancer, since they don't know much about that beyond pink ribbons and mammograms.
 
​I am sorry, I tend to babble.
 
Welcome to the group!! Please pop in often and let us know how you are doing! Share stories, ask questions or say most anything you have to say.
 
Both of you, be well!

Vicki,
 
I join Rhonda and Mary in welcoming you here.  We'll be here to support you throughout your treatment and as a survivor after.  Our forum has a lot of resources you may be interested in reading about.  Here is a great summary of information about lung cancer - http://www.lungevity.org/about-lung-cancer/lung-cancer-101
 
I noticed your diagnosis was adenocarcinoma.  Have they biopsied your tumor.  I ask because there is new research on targeting lung cancer tumor mutations and adenocarcinoma is a type that has new emerging therapies that I read good things about.  Here is a youtube video by Dr. Sequist discussing lung cancer mutations.  This might be a good question for your doctors on your next consultation - https://www.youtube.com/watch?v=e9gTMptexi4
 
Stay in touch and let us know how your treatment is going.  Oh - we've got plenty of survivor expertise on hand so if you have questions, ask away.
 
Stay the course.
 
Tom