Hello there

[smashley]

Greetings all, 33F here, just diagnosed with adenocarcinoma after biopsy of a ~5cm mass in my left lung. I have a PET scan next week, and from what I’ve been reading that is the last bit of info needed to determine the stage of the cancer and whether or not it has metastasized?

I have cough-variant asthma so coughing for 8 weeks at a time isn’t abnormal for me, but knowing what’s causing it makes it feel worse this time. Trying to sleep is the worst and I have so many caring coworkers who like to comment on how I’m sounding this week. To be honest, I’m probably lucky that work hasn’t kicked me out for the persistent coughing due to risk of COVID, but I am vaccinated and able to produce negative COVID tests weekly so… all of this to say— the coughing is driving me absolutely insane psychologically as well as physically.

If surgery is an option (and it sounds like it is provided the PET scan comes back good… holding my breath) can I expect instant relief from the coughing? Any tips for the meantime? Historically, the only thing that has absolutely silenced my coughing has been cough syrup with codeine, but I was hesitant to ask for a prescription and went with the doctor’s recommendation of Tessalon Perles which have basically done nothing.

It’s been a rollercoaster of emotions these past few days, and right now I am feeling oddly exhausted and unemotional but I do want to say that it’s been extraordinarily helpful reading through this website and forum and all of the questions I wish I had been rational enough to ask my doctor and all of the ones that I’ve written down to ask next time.

✌️

[LexieCat]

Hi, smashley, and welcome. I'm surprised they were able to biopsy a nodule that small--5 mm is tiny.

A PET CT provides a pretty good indicator as to whether cancer has metastasized, but they will also sample lymph nodes as part of any surgery--not everything will show up on a scan. Usually, though, with a nodule as small as yours, it wouldn't be likely to have metastasized yet.

Given the size of your nodule, I'd be surprised if that is contributing to your cough. Usually a tumor has to be larger or in an unusual place for it to cause coughing. Most people with nodules the size of yours have no symptoms at all.

BTW, I'm from Colorado originally (Colorado Springs) and my kids and other family members are still out there (kiddos in Denver metro; others in the Springs). I'm hoping to get out there to see the kiddos at Christmas--last year was a no-go for that.

[smashley]

Sorry 5cm! I’m (supposed to be) an engineer so that is super embarrassing. 

I hope you get out here too. I am from Florida originally, been in CO for about 5 years now and there’s nothing like a White Christmas.

[LexieCat]

No worries--I'm a lawyer/writer and when I find a misspelled word or misplaced comma in any of my posts here, you better believe I'm gonna go fix it.  

Yeah, pretty big diff between 5 mm and 5 cm. If the entire tumor is removed by surgery, that should relieve coughing to the extent it's due to the cancer. But with your asthma, I don't know if that might continue to cause coughing. You WILL cough for a while after surgery. It's annoying and pretty uncomfortable, but they will give you breathing exercises that encourage coughing. They actually WANT you to cough right after because it helps clear the lungs. Most of my post-surgery cough lasted only 2-3 weeks. And if you can have the VATS lobectomy, that's pretty simple surgery with a fast recovery time. I was back at work about 3 weeks or so after my discharge from the hospital.

One other thing--be sure a sample of your tumor is sent out for biomarker testing. Because you're relatively young, there's a good chance you have a targetable mutation that would enable you to benefit from targeted therapy (a pill) in lieu of chemo. I'm betting that with the size of your tumor, you will be offered adjuvant chemo after surgery--you need to find out if targeted therapy would be better.

[smashley]

Thanks LexieCat, that is good info although it kind of makes me cringe… just the thought of coughing after surgery like that. I’m assuming the pain meds make it somewhat bearable?

Yes, a sample was sent out for biomarker testing, should have results any day now.

Besides the presence of a mutation, which seems like a prerequisite more than anything else, what other factors are there to take into consideration between targeted therapy and chemo that would make one more effective than the other? Could you do both as a double whammy or would that just ruin a person?

[LexieCat]

Targeted therapy does you NO good unless you have a targetable mutation. I don't have any, so targeted therapy is out for me. If you're eligible for targeted therapy, that's almost always the first line of treatment offered. It is much more effective, in most cases, than chemo. Immunotherapy might or might not be in the picture--that's a game-changer for many people. To the best of my knowledge nobody has chemo with targeted therapy--if I'm wrong about that, I'm sure someone will correct me. 

Most of the time first-line treatment is pretty standard, determined by cancer type, Stage, and biomarkers. One other option is a clinical trial if there is one that interests you and for which you are eligible. But most people don't go that route until first-line treatment stops working.

The coughing after surgery isn't that bad if you have VATS. VATS involves three tiny incisions on your side/back, so no huge incision to strain. It sometimes helps to hold a pillow against your body at first when coughing.

Oh, and while I'm thinking about it, you should get a wedge pillow for sleeping the first few weeks after surgery. It will be much more comfortable to sleep if your upper body is elevated.

[Rower Michelle]

Hello and Welcome. 
So glad you found us- I just read the thread this morning. There is another critical piece of the diagnostic process, a brain MRI.  This is the standard of care.  I’ve seen instances where this was missed even by some of the large cancer centers.  
 

The emotional rollercoaster is “normal”.  I was diagnosed three years ago and remember calmly pulling out my employer’s short term disability policy-somehow I held it together until I didn’t.  Sleep is really important and that cough is probably interrupting to say the least.  The pearls did nothing for me.  I had an opiate cough syrup every six hours which didn’t touch the cough but the opiate prescription every four hours did help along with a wedge pillow.   Ask your doctor for a short term anti anxiety medication.  I wish I had.  It can be helpful. 

If you don’t mind my asking, where are you treated?  Obtaining a second opinion is also very important- in Denver there are “the big dogs” of lung cancer, some of the best in the world.   It’s worth considering.  
 

I have a mutation and can say that Lexie is correct, targeted therapy is the standard of care.  Immunotherapy is ineffective when there is a mutation.   The specifics will be determined by the PET, Brain MRI and biomarker results.   For stage 3 mutated lung cancer a common scenario would be surgery, chemo, radiation and then maintenance targeted therapy.  
 

I was diagnosed at stage IV, while we we’re waiting for the biomarker testing to come back, I did have a “triplet” of Carboplatin, Altimpta, Keytruda.   My cough was so bad I had broken a rib, so my medical team opted to start treatment immediately.  When the biomarker testing came in, I was switched to targeted therapy.   When I started the targeted therapy, the cough disappeared.   
 

The odds are pretty high that you might have a mutation given your age. Targeted therapy is also emerging in earlier stages to prevent recurrence which represents a shift in the medical community.  
 

Once you have a full treatment plan I’d strongly recommend contacting either Lungevity or the Go2Foundation for a phone buddy. I found it very helpful to talk to someone with a similar experience… I can say things to her that I really can’t talk to about anyone else…

Finally, in Denver you are in the backyard of The White Ribbon Project.  They are an awesome group of people and you can get a free white ribbon.  Check it out at www.thewhiteribbonproject.org    
 

Brighter days are coming.  
 

Let us know how we can help.

Michelle

 

 

[smashley]

Thanks Michelle—

So from my understanding, the PET scan is useful for detecting glucose uptake indicative of cancer activity everywhere in the body except the brain since it naturally utilizes so much. And the MRI supplements that scan by looking specifically at the brain?

It’s a little ironic, about 4 or 5 weeks before the diagnosis I had a mental breakdown at work and started some anti-anxiety counseling through our Employee Assistance Program and specifically said I wasn’t interested in any meds. Definitely going to do a 180 on that. I really thought that this was going to put things in perspective and make me stop caring about work as much, and to my own frustration, it’s had the opposite effect and I keep on trying to figure out how to schedule appointments so they don’t interfere with major reviews. I haven’t told my director yet because I’m still waiting to see what treatment plan we put together since it seems like it could be relatively minimal impacts (like VATS + targeted therapy pill) and I don’t want to scramble the troops and then have to walk them back.

The coughing along with the anxiety are making sleep a complete nightmare. I usually fall asleep for 2-3 hours and then wake up wide awake staring at the ceiling and drinking tea until around 4am when I give up and go into work. Every third day, I am so exhausted that I manage to sleep for 6-8 hours and then the cycle starts again. 

My health insurance and PCP is with Kaiser, but after the initial indication, most of my appointments have been with SCL Health. I’ve heard that Kaiser is very hard to get a second opinion with, but a friend of mine mentioned that SCL has some kind of partnership in place with National Jewish which might make that process less painful. Any other suggestions? I guess I’m not familiar with who the “Big Dogs” are.

Also haven’t gotten my first bill yet and kind of nervous because we have a high deductible plan at work and I don't really know what to expect. Can I ask for a quote before the PET? Should I just brace myself to have to cover my max out of pocket for this year?

Thanks for the other recommendations for support. I will reach out. 

— Ashley 

 

[LexieCat]

The University of Colorado has an excellent cancer center. And I'd strongly suggest that you consider a change in health plans when open enrollment time rolls around--it's right around the corner and you might be glad later for a plan with better benefits. Some of the targeted therapies are astronomical in price (over $10k a month), though the pharmaceutical companies generally have financial aid available for those whose insurance isn't adequate, and even a PET CT is over $2,000. You will want the best coverage you can afford. 

I don't know how your office works, or what kind of sick time benefits you have, but I don't think most employers expect you to know exactly how much time off you will need. I was working for a very small organization and they were very understanding--told me to do whatever I needed to do. I used sick time until that ran out and then short-term disability. When it became clear I wasn't able to continue performing my job (involving intense legal analysis), I used long-term disability (employer-paid). They held my job open (unpaid leave) till my long-term disability kicked in. I also qualified (as a Stage IV lung cancer patient) for Social Security Disability (SSDI). If I were you, I'd just be honest and tell them you will have a lot of appointments and that it's impossible to know what kind of treatment you'll require--that there's a good chance you might not need extended time off but you can't say for sure until all the testing is done. 

You are at the hardest stage of things, where you are waiting for tests and results and a treatment plan. Most of us feel better with all that behind us, where we can move forward with a plan of attack.

I'd second the suggestion for anti-anxiety medication--hopefully one that will help you sleep. 

Do you have a good support system of family/friends? I've learned that keeping to myself the fact that I need help (e.g., a ride to an appointment or home from surgery) is a mistake. My neighbors and friends have really helped out when I've needed anything. My family is all out west, though my daughter came out to stay with me when I started chemo. I probably could have managed without her, but it was nice having her here.

 

[Rower Michelle]

Hi Ashley,

Your understanding of the brain MRI is correct.  It’s part of the standard battery of testing. It’s also very expensive so Lexie’s advice is excellent. The last brain MRI & chest CT I had in July was $21,000 billed to the insurance.  You don’t have to pay everything up front.  It’s possible to work out a reasonable monthly plan so you don’t blow up your finances.  A friend of mine paid $40 a month until they had a handle on a new insurance plan.  
 

Do pay careful attention to all the incoming EOBs, if anything is denied be sure to file an appeal.  Don’t pay any hospital bills until the EOB comes in.  Also politely decline any advance payment requests.   You might have to ask HR for help if there are any billing issues.   Managing insurance can be a part time job.  I spent years in the business and can’t believe how incompetent the health system is.  
 

University of Colorado is the gold standard in Denver under the direction of Ross Camidge MD, he is Internationally recognized. KP will provide a second opinion for him.   In the best scenario, Dr Camidge or someone from his team would design the treatment plan for KP to implement.   
 

As for the work situation, I held off saying anything initially to my employer until I had the lung cancer diagnosis.  Now that you know, it’s probably best to give them a heads up.
 

I was already on Short Term Disability subsequent to being hospitalized for pneumonia.  I also filed for FMLA.  Word of wisdom-there are two case managers, one for FMLA and another to STD.  Totally confusing process.  
 

I would consider filing for STD soon as you can as it may not be possible to keep up a demanding work pace with your current sleep schedule for much longer.  Plus you run the risk of getting sick & you don’t want any complications as you’re starting treatment. You don’t want to risk the perception of a performance issue.  Rest is the most important issue right now.  I get the difficulty in managing a work schedule, those emails, projects and meetings can wait.   It’s a hard transition to put yourself first.  Everything else can wait when it comes to work.  
 

Self care is an art and a skill.. we can all pitch in to help. 
 

Michelle

[smashley]

Wow, lots of great info there to process.

I am fortunate(?) that I haven’t taken vacation in a long time, so I have close to 480 hours banked. Our short-term disability is handled by Sedgwick and I’ve heard… really bad things, so while I will try to initiate the process I think I might just hang my hat on the hours I have banked.

I was completely mixing up CU Medicine with UC Health, so I’m glad I got that straightened out (thanks to Googling Dr. Camidge) and it does look like they accept my insurance “for CU Medicine Specialists Only” which I would assume this is, but will confirm.

I think you’ve convinced me to bring my parents in on this. They’ve been through a lot this past year and I really didn’t want to stress them out any more (and will probably wait until AFTER my brother’s wedding next week), but my mom’s been through the wringer with breast cancer twice, so she probably knows a lot about navigating the health care and insurance system. Plus she is a way stronger advocate than I am… (I once negotiated myself into a lower salary at my first job during college)

Also, can I just ask how have I lived this long without knowing about a wedge pillow?! They look amazing and I’m getting one now, with or without surgery. 

Thank you for everything!

[Rower Michelle]

Short term disability is a pain but automatic approval for any lung cancer diagnosis.  Even after my stage IV diagnosis I had a “case manager” pestering me for my return to work plan.  I looked up the gal on LinkedIn only to find her previous “experience”’was a retail manager at Talbots.  (Yes, for real).  A quick call to HR to call off the dogs made the whole STD process much smoother. 
 

Rather than burn through vacation, check with HR about their policy.  Who knows, you can save that vacation time & do something fun instead.  HR is obligated by federal law to keep your situation confidential.   I didn’t have to use any of my accrued time off.  
 

It’s a great idea to engage your parents, we need all the help we can get, they will take the lead from you.  My parents were the last people we told. I had a number of practice sessions with friends and colleagues before the call with my parents.  That was helpful because I found it hard to share what was going on.  The public perception of lung cancer tends to freak people out.   The reality is research has come a long way- and is still moving quickly.  
 

While you’re ordering the wedge pillow you might want to make a small investment in some organic essential oils & diffuser.  Lavender and Frankincense for one hour are very calming and can help you fall asleep.

Google is not our friend but if you’re going to do any research try & stick to a 15 minute limit to avoid any rabbit holes.  You may want to check out Andrew Weill MDs 4-7-8 breathing exercise.  It helps with a lot of things.  Even if you’re coughing you can do what you can- 2-4-6 etc    
 

Once treatment gets underway, the process levels out.  We took six vacations the first year after diagnosis… 

You’re doing great, keep going   

 

[Tom Galli]

Ashley,

Welcome here. I see you've met Lexie and Michelle and their counsel is superb.

I was diagnosed stage III non small cell squamous cell lung cancer in February 2004 and that was a very long time ago. I had a very large tumor encased in the main stem bronchus of my right lung and I had no symptoms, including shortness of breath, until I started coughing up blood. Once I started coughing, I experience the same problem as you. Here are a couple of remedies that worked for me: sitting in a steamy shower for lengthy periods, and using a nebulizer that atomized the drug albuterol. The later will require a doctor's prescription and purchase of a nebulizer. Your general practice physician can give you the script (any of your doctors can) and your GP clinic may have a nebulizer to lend you. They are pretty inexpensive and I ended up purchasing one on Amazon. I use it during pollen season and if I pick up a chest cold.

I'm an engineer also. You'll know why directing the very hot water from the shower produces more steam if it strikes a shower wall rather than the shower floor. And, thank the Lord for spell check programs!

PET scan is next up, then hopefully a MRI to clear the brain. Perhaps, the biopsy lab result will be available in concert with scan results. I had surgery (right lung removed) after chemotherapy and fractional general radiation. Radiation affected suture healing and sutures broke twice causing a multitude of surgeries and stent placements to seal off the empty chest cavity. Your surgery should be much easier. Here are some suggestions for surgery prep and recovery. 

Do you have a medical oncologist on your treatment team? Some of us after surgery are offered a course of chemotherapy as an adjuvant therapy. This is designed to sweep the blood and lymphatic vessels of cancer cells that may be emanating from your tumor. Generally the size of your tumor drives the need for this treatment. My surgical mayhem denied me the opportunity from having this treatment and after I recovered from surgery, a scan found three tumors in my left (only) lung. So I'd be inclined to take it if offered. Unfortunately, lung cancer has a high probability of recurrence after successful treatment. What are the probabilities? Here is some information.

You might want to read in to our disease and this is a good place to do so. Lung cancer comes with a challenging vocabulary and the resource I suggested will help you understand our lingua franca.

Stay the course.

Tom