Meloni

Isaut,
I'm so sorry for your situation. You are clearly overwhelmed, and who wouldn't be? Like you said, being caretaker, landlord, daughter, griever, full-time employee, wife, and mother all at once isn't something anybody can take on long-term indefinitely. 
One thing I wanted to ask you about are his recent symptoms and health:  if I read correctly, he finished chemo in December, but has had continuous symptoms of a "cold" since that time. He met with the oncologist in February, but after that appointment occurred, his eyes and skin began to take on a green/yellow hue, his appetite has decreased, and his cough became more productive? I would definitely bring this up with the family doctor on Tuesday, but also, don't wait until May to notify the oncologist of these symptoms. I go to my oncologist regularly for symptoms. The oncologist cannot help if they don't know what's going on. <3
Regarding his anger and frustration: I am not in his head, nor his heart, but I can tell you that from my experience cancer, losing control of your life, feeling like a burden to loved ones, and dealing with feelings that can't be shared with family members can be very frustrating. Does your father have any peers to visit with? Is he a veteran? If so, there will be local groups that would welcome him. Does he have any fraternal connections? Many cancer centers have support groups--those can be a great resource. A church men's group might work as well, if you are connected to one. A peer group, or even just one peer, can bring satisfaction to his life, which in turn might relieve some of the frustration and anger, or the manner in which it's directed. 
And you, dear one: please, please don't forget to take care of yourself. This is a tremendous struggle you are traveling. Vent away. Love your husband. Allow him to love you. Hug your precious child. I'm glad you are looking into Hospice services. They have wonderful care, and you need respite, stat!!!
Meloni
P.S. I didn't mean to provide a giant post of unsolicited advice. You are right in that sometimes there are no clear answers. I just feel for you so much. You are a wonderful human, and doing so much. It's obvious you love your father and your family. Please don't feel guilt in refilling your tank so you can continue spreading that wonderful love in our world. God bless you. 
 
 

Isaut,
I'm so sorry for your situation. You are clearly overwhelmed, and who wouldn't be? Like you said, being caretaker, landlord, daughter, griever, full-time employee, wife, and mother all at once isn't something anybody can take on long-term indefinitely. 
One thing I wanted to ask you about are his recent symptoms and health:  if I read correctly, he finished chemo in December, but has had continuous symptoms of a "cold" since that time. He met with the oncologist in February, but after that appointment occurred, his eyes and skin began to take on a green/yellow hue, his appetite has decreased, and his cough became more productive? I would definitely bring this up with the family doctor on Tuesday, but also, don't wait until May to notify the oncologist of these symptoms. I go to my oncologist regularly for symptoms. The oncologist cannot help if they don't know what's going on. <3
Regarding his anger and frustration: I am not in his head, nor his heart, but I can tell you that from my experience cancer, losing control of your life, feeling like a burden to loved ones, and dealing with feelings that can't be shared with family members can be very frustrating. Does your father have any peers to visit with? Is he a veteran? If so, there will be local groups that would welcome him. Does he have any fraternal connections? Many cancer centers have support groups--those can be a great resource. A church men's group might work as well, if you are connected to one. A peer group, or even just one peer, can bring satisfaction to his life, which in turn might relieve some of the frustration and anger, or the manner in which it's directed. 
And you, dear one: please, please don't forget to take care of yourself. This is a tremendous struggle you are traveling. Vent away. Love your husband. Allow him to love you. Hug your precious child. I'm glad you are looking into Hospice services. They have wonderful care, and you need respite, stat!!!
Meloni
P.S. I didn't mean to provide a giant post of unsolicited advice. You are right in that sometimes there are no clear answers. I just feel for you so much. You are a wonderful human, and doing so much. It's obvious you love your father and your family. Please don't feel guilt in refilling your tank so you can continue spreading that wonderful love in our world. God bless you. 
 
 

April 10th is not far away, and in my experience, they usually schedule surgery very quickly once the consult is completed.
I mentioned on another thread that my VERY talented thoracic surgeon does perform VATS, but had to perform open surgery in my case. I was terrified, but he was honest and forthcoming about the procedure, and I actually recovered and was sent home from the hospital a day earlier than expected. The staff was amazing, professional, and kind. 
IF your 2nd opinion surgeon recommends the same, I assure you the experience is manageable and we can help walk you through it. <3 
Like the others said, it's important to trust your surgeon, whomever you choose. my husband and I were very comfortable with the surgeon and his capabilities. My husband gets a kick out of watching him come out of surgery to chat, because he sees the surgeon is doing what he loves, and God's calling. 
I will ill keep my fingers crossed that your 2nd opinion is able to recommend a VATS!
Meloni 
 

April 10th is not far away, and in my experience, they usually schedule surgery very quickly once the consult is completed.
I mentioned on another thread that my VERY talented thoracic surgeon does perform VATS, but had to perform open surgery in my case. I was terrified, but he was honest and forthcoming about the procedure, and I actually recovered and was sent home from the hospital a day earlier than expected. The staff was amazing, professional, and kind. 
IF your 2nd opinion surgeon recommends the same, I assure you the experience is manageable and we can help walk you through it. <3 
Like the others said, it's important to trust your surgeon, whomever you choose. my husband and I were very comfortable with the surgeon and his capabilities. My husband gets a kick out of watching him come out of surgery to chat, because he sees the surgeon is doing what he loves, and God's calling. 
I will ill keep my fingers crossed that your 2nd opinion is able to recommend a VATS!
Meloni 
 

I agree with the others about getting seen sooner. I was diagnosed last year at age 40, and like you an atypical demographic for lung cancer. I got the run around a few times before finding a wonderful pulmonologist who scheduled me in the following day. Don't let the front desk schedulers put you off. Many don't know the difference between routine and priority needs. Make sure you speak with the doctor's nurse. Tom's idea of having your PCM advocate for you can be helpful as well. Also, how many pulmonologists are in your coverage area? 
Please follow up. I hope to from you soon. <3 

My name is Eric.  I'm 44, quit smoking about 16-months ago right about the same time I started having chest pains from GERD.  I calculate I have about 30-pack-years.  I get my healthcare from the VA.  This last week I've had the flu with a post nasal drip and coughing.  I also have panic disorder and often overreact to the smallest of symptoms and go to the ER to check out my heart and get an EKG.  I'm always Okay.
Yesterday, I went to get myself checked.  My heart is all good.  They did a chest x-ray to look for other causes of the chest pain, which I'm certain was sore muscles from all the coughing and sneezing.  The doctor told me that they found multiple items in my lungs that could be scar tissue from a previous infection.  He also said that a previous X-Ray taken in August showed nothing.  My brain went straight to lung cancer.  He said it's usually nothing, but to have my primary doctor follow up with an X-Ray in a few months just to make sure it's nothing bad.  I pressed him for chances asking "better than 90% I've got nothing to worry about?".  He readily agreed with that percentage.  When I left I read the paperwork and it said "Solitary Pulmonary Node" and nothing else.
So I've been Googling all of that, going from one terrifying piece of information to the next, looking for hope that maybe the X-Ray just picked up phlegm.  It's like everything I read tells me I have a 50% chance of being dead in 5-years.  I know that's not true, but still, I hate WebMD and all of its cousins.
I looked at some of the other threads before introducing myself.  I know a lot of people here are in far worse places than I am.  I think the problem I have is that I'm so afraid to die of something like cancer or heart disease because it would mean leaving my wife behind.  She was disabled when we were newly-weds and hasn't worked in 20-years.  I've always taken care of her.  We have no kids or other family to help, just some friends who would give it the old college try.  I don't even know if she could collect my social security benefits.
I'll hit up my VA team on Monday and see what happens.  I'll update with what I find out.  If it all does turn out to be nothing, I'll stick around anyways.

I'm reading about your beautiful diet of nuts, berries and fish while stuffing my face with a Quarter Pounder w/Cheese. 
The others have already provided excellent advice. I'm glad your visit with the pulmonologist is coming up on the 28th. The wait time tests my patience, but my oncologist always reminds me that the window of opportunity will not be lost between now and then.  
Despite the CT, I remain hopeful that your nodule is benign. It does need clinical evaluation, and I'm glad you're seeing this through. God forbid, the nodule needs obliteration, early detection is the key to kicking it in the butt.  You are so very brave to do this. You are not doomed. 
Finally, I hope you don't beat yourself up about your smoking past. Celebration of your non-smoking present sounds a lot more interesting. <3
Meloni
 

That's fantastic!!!! Woot woot!!!

That's fantastic!!!! Woot woot!!!

Thats great news !!

Sent from my SM-N920I using Tapatalk

Wonderful news J L W!  Do the clean scan dance.
Stay the course.
Tom

Followup - Review
CT Scan = 9mm lower lobe - spiculated, lobulated with irregular borders - non calcified - 
Met with the doctor yesterday after my PET scan. He said there was no uptake and no lymph nodes involved (Im happy about that) which gives us time to see if it grows over 3 months. So I'm scheduled for another CT in 90 days. I kinda liked his initial approach which was more aggressive.
 
 
 

Hi JLW,
Like the others, I would ask clarification about the size of the nodule (or perhaps you have a typo?). The size you indicate, 0.9 mm, is 1/10 of one millimeter. Ten millimeters equals one centimeter. CTs /PETs have a difficult time picking up spots and details of spots that are less than one centimeter. If I recall correctly, the medical community categorizes a mass as >/=3 cm (30 mm), and a nodule as <3 cm (30 cm).
The beginning of my story is similar to yours, but our diagnoses may be very different. I had a 1.3 cm (13 mm) nodule that was spiculated and lobulated. It was first discovered by x-ray, and followed-up by CT. Due to my low risk demographic and exposure history, my medical providers chose to ignore it. I persisted, and found a pulmonologist who ordered a PET and subsequently a bronchoscopy, which diagnosed my NSCLC. 
I spent hours researching lung diseases prior to my diagnosis--I'm clearly not an expert, but your nodule might not be cancer. People have nodules that are completely benign. I am the worst follower of my own unsolicited advice, but try to focus on pleasant activities, and avoid getting caught up in the "lung cancer hole" of the internet this week. Easier said than done, I know. 
When you get back with the doctor, remember that you are your own best advocate. Be persistent if you feel they are putting you off. However, since your doctor ordered a PET, it doesn't sound like they are putting you off. Is your doc a general practitioner, a pulmonary doc, a thoracic surgeon, or an oncologist?
Meloni

Hi, Very sorry guys. 
The nodule is 9mm.  I see the doc again Monday afternoon. He told me he thought is was a 50/50 chance.
i appreciate the comments. I'll let you know what happens.

Hi JLW,
Like the others, I would ask clarification about the size of the nodule (or perhaps you have a typo?). The size you indicate, 0.9 mm, is 1/10 of one millimeter. Ten millimeters equals one centimeter. CTs /PETs have a difficult time picking up spots and details of spots that are less than one centimeter. If I recall correctly, the medical community categorizes a mass as >/=3 cm (30 mm), and a nodule as <3 cm (30 cm).
The beginning of my story is similar to yours, but our diagnoses may be very different. I had a 1.3 cm (13 mm) nodule that was spiculated and lobulated. It was first discovered by x-ray, and followed-up by CT. Due to my low risk demographic and exposure history, my medical providers chose to ignore it. I persisted, and found a pulmonologist who ordered a PET and subsequently a bronchoscopy, which diagnosed my NSCLC. 
I spent hours researching lung diseases prior to my diagnosis--I'm clearly not an expert, but your nodule might not be cancer. People have nodules that are completely benign. I am the worst follower of my own unsolicited advice, but try to focus on pleasant activities, and avoid getting caught up in the "lung cancer hole" of the internet this week. Easier said than done, I know. 
When you get back with the doctor, remember that you are your own best advocate. Be persistent if you feel they are putting you off. However, since your doctor ordered a PET, it doesn't sound like they are putting you off. Is your doc a general practitioner, a pulmonary doc, a thoracic surgeon, or an oncologist?
Meloni

Hi Sydney,
Holy cow, what a month! I'm so sorry you need to be here, but I'm so happy you found us. There are many people here who have survived against all odds. I found that to be a comfort against the stats when I was first diagnosed a year ago. 
May I ask what the result of your genetic mutation was? 
Meloni

Lbelle,
Good news on your appointment.  Let us know the results of the bronchoscope when you receive them.  Hopefully, this will all be leftover stuff from your pneumonia.
Stay the course.
Tom

Thank you to everyone, you have all been so kind and helpful. Was able to get a followup appt.for in the morning, and our local nurse practitioner called my husband this morning to check on me and found out about our situation. She used to work for a pulmonologist at a large medical center nearby and is getting me an appt. for next week! 

Hi Lbelle,
Wow! You're getting great advice from everybody! I agree that it's important to be your own advocate. Ask lots of questions (including who can see you sooner) and ask for copies of test results. Some doctors assume we won't understand technical stuff, and sometimes I don't, but with the internet I can find out a lot. Information is your friend. Get as much as you can. If you can get someone to go with you to appointments, great! Make  a list of questions. Have your support person take notes.
Hang in there! Lung cancer is my 3rd primary cancer and I'm hanging in there and living a good life. You can too.

I agree that your PCP is your health care advocate and should be able to expedite your diagnosis with the appropriate specialists. This is just my experience and my observations from posts by many other patients. I would go as directly as possible to the needle biopsy by an interventional radiologist. Of course, bronchoscope and needle biopsy do both depend to some extent on the location of the tissue to be sampled. I cannot tell you how many times I have read that someone's bronchoscopy reported either "inconclusive" or "no malignant cells". Mine was Sept. 30, but my final diagnosis by needle biopsies of both lungs wasn't made until Jan. and Feb. (stage IV).  It will ease your mind if it is negative, but if it is positive, you will still need to get to a medical/lung oncologist and complete the staging process. The scheduling and appointments is overwhelming on top of the devastating emotions and thoughts about the possibilities. We admit that it is difficult; we can say that because we have been there. We all hope and pray for the best possible outcome for you. The best advice you will get (and you will get it repeatedly) is that you have to be a proactive self-advocate. Please let us know if you make any progress next week.
cindy

Lbelle,
Cindy is exactly correct to point out a needle biopsy performed by an interventional radiologist.  This specialist may be the easiest and best way to get confirmation about your mass.  Further, she's right about the downside of bronchoscope procedures.  My first could not obtain a biopsy sample.
I had an interventional radiologist re-install a chest tube that fell out of my back. Actually two were involved in the procedure and they used a fluoroscope to determine where to make the new incision.  It was performed with a local anesthetic and was a piece of cake.
The good thing about interventional radiologists is most medium to large hospitals have them and they are readily available.  Your oncologist ought to be able to arrange a consultation.
Stay the course.
Tom

We met with my oncologist yesterday to discuss the recurrence of NSCLC in my right supraclavicular lymph node. The thoracic surgeon who performed my lobectomy agreed to perform this surgery, and I'm scheduled to consult with him on March 9th. 
The results are back on the tumor testing. It tested positive for ALK. The oncologist talked a bit about the drug crizotinib as a possible future treatment. 

We met with my oncologist yesterday to discuss the recurrence of NSCLC in my right supraclavicular lymph node. The thoracic surgeon who performed my lobectomy agreed to perform this surgery, and I'm scheduled to consult with him on March 9th. 
The results are back on the tumor testing. It tested positive for ALK. The oncologist talked a bit about the drug crizotinib as a possible future treatment. 

I agree with the others about getting seen sooner. I was diagnosed last year at age 40, and like you an atypical demographic for lung cancer. I got the run around a few times before finding a wonderful pulmonologist who scheduled me in the following day. Don't let the front desk schedulers put you off. Many don't know the difference between routine and priority needs. Make sure you speak with the doctor's nurse. Tom's idea of having your PCM advocate for you can be helpful as well. Also, how many pulmonologists are in your coverage area? 
Please follow up. I hope to from you soon. <3 

Update on my father...yesterday (Feb. 21) was his last chemo treatment with 7 radiation treatments to go!!!  I heard a recording of the radiation oncologist meeting and he said his lungs sounded clear (fingers crossed)!!  When he got home he ATE!!!  He has been unable to eat very much at all...he kept a small glass of baking soda water and took tiny sips to eat any food.  His follow up CT scan is scheduled for April 3rd and I am praying for NED!!!  He was not a candidate for surgery, so, I know that is probably our best hope and it is mine.  I haven't seen my father in at least two weeks.  I am a guidance counselor with a 9 year old and the FLU is terrible here.  We are both (me and son) terrified of bringing a germ to him.  I am hoping we will get to see him this weekend.  My sons has a runny nose and slight cough...so, we may wait a few more days.  It is so difficult.  I am so nervous and optimistic about him feeling better.   He was so physically strong and enjoying working outside before.  My mother said yesterday it will just make her day if he feels like going outside and sitting on the porch.  It is truly the little things. 
Praying for NED!!!