Karen_L

@RJN Well, that good news is really good. Surgery seems to bring clear results, so that’s good too. But, ugh. Will you have to take medication after the removal of the gland? 
 
K

Good for you! You just keep on doing whatever it takes to get the care you deserve. 

Is it time for a consult with an oncologist? (You know me with the nudging….)
 
K

Hi Dora, 
This is all scary stuff, isn’t it? It’s ironic that, on a lung cancer forum, you hear so many people talk about taking deep breaths. But slow, deep-as-you can breaths do have a positive physiological impact on anxiety.
You’re at the point of needing a diagnosis about initial testing. That means more testing, for which your doctor is suggesting biopsy or waiting and watching. Because you’ve come to our discussion board, it seems that you’d like to rule out or diagnose lung cancer. 

As you consider your options, it’s really good to find doctors who specialize in lung cancer and other issues of the lung. The Mayo Clinic lung program, a federally designated cancer center, has centers in Phoenix and Scottsdale, which is about an hour from where you list in your information. Many of us travel long, long distances for diagnosis and treatment; don’t let an hour prevent you from acting. 
Here’s information about the lung program. https://www.mayoclinic.org/departments-centers/lung-cancer-program/home/orc-20474481
Here is information about testing: https://www.mayoclinic.org/departments-centers/lung-cancer-program/sections/tests-procedures/orc-20474595
I’m with Lily on the importance of catching lung cancer early. I’ve had two biopsy-getting procedures, which yielded tissue that enabled a precise diagnosis and targeted treatment. It was an outpatient procedure; I some discomfort for several days, but it was no big deal. 
Keep us posted.
Karen

Hi Jeff, 
Just another word of welcome. Good luck with the scan & keep us posted!
Karen

Good for you! You just keep on doing whatever it takes to get the care you deserve. 

Is it time for a consult with an oncologist? (You know me with the nudging….)
 
K

Good for you! You just keep on doing whatever it takes to get the care you deserve. 

Is it time for a consult with an oncologist? (You know me with the nudging….)
 
K

Hi Marcia,
You're certainly having a time of it. So sorry. The SOB concerns me, too.
While it's interesting and sometimes useful to hear about others' experiences, it's important to work on parallel fronts. Have you consulted with a lung cancer oncologist? Surgeons believe they are saviors, even in lung cancer-- and they can be!-- but they simply don't know enough about the sneakiness of the disease as a lung cancer specialist would. As you are collecting information about others' experiences, please seek out a lung cancer oncologist!
Best of luck, and keep us posted.
K

SO GLAD you got into the sunshine! We just spent 3 days in sunny AZ for a family thing and I was so grateful to get out of our never-ending rain and gray. Where is spring?! It can’t come soon enough. 

Tom & Lou are on the money. I’d want to know how big this nodule is, as well. 
The good news is that the newly seen thing is not being described as a potential met.
And I’m with Lou. Major hospital or not, your calls need to be returned. Have you asked who’s covering for your doc? Me, I’’d call the oncology receptionist daily— and very nicely— until I got someone on the doc’s team or department to call you back. You could look online for the name of an associate and see if you can speak to him/her.
Do not let them subtly bully or shame you about asking for information. It’s very nice that your doc said they would call with anything concerning, but those are the processes that meet their needs as an institution, not yours as an individual. (I was recently on a call with insurance. The person brought up something unrelated to my question and I said, “I understand that you have this issue, but my concern hasn’t been addressed. We’re not opening some new topic until mine has.” I would feel very nervous but OK telling my oncologist my needs might not be typical, but they are mine, and therefore an important part of my care. 
Finally, I suggest you be sure to follow up on this pancreas thing. Sounds like it’s been noted before, but it’s always good to ask.  (I ask about every single thing in a radiology report.)
Keep us posted.
K

So glad you are being scanned tomorrow. 
We all search for information when something changes so give yourself some grace along with that head-slapping. As long as you’re checking reputable sites, i.e., Mayo Clinic, cancer centers, I figure it’s better to know than walk in cold to the doctor’s office. The challenge for me is learning to cope with the emotions that come with new things.
What I might nudge you a little about is that you emailed your care team instead of calling. You, we all, deserve to have concerns addressed as quickly as possible. It’s hard for me to do, so I say this for my own benefit, too. Pick up that phone and call until you reach someone who can address your worries. 

Do you have an oncologist or pulmonologist on your team? It sounds like your surgeon is very on top of things, and yet I’ve found that having multiple eyes on new developments is very helpful. I especially respect and trust my oncology radiologist and pulmonologist. My pulmonologist is wonderful. He’s the one who caught the pulmonary embolism when I went to him with some basic questions about asthma , lc, and working out safely. 
Hang in there today. If your weather is nice, catch some moments in the spring sunshine. Keep us posted.
Karen

I wonder about adding a urologist to your cadre of caregivers. I’m learning that, despite my first impulse to attribute everything to LC or Tagrisso, not everything is. This might be one of those times. 
(I don’t there’s much to be squeamish about after being on the lung cancer rodeo.)
K

Huh— I’ve never heard of LC metastasizing to the testicles, but hey, LC does what it wants. 
That weight gain is marvelous— congratulations!
You, my friend, are too determined to be doomed. Keep us posted.

So glad you are being scanned tomorrow. 
We all search for information when something changes so give yourself some grace along with that head-slapping. As long as you’re checking reputable sites, i.e., Mayo Clinic, cancer centers, I figure it’s better to know than walk in cold to the doctor’s office. The challenge for me is learning to cope with the emotions that come with new things.
What I might nudge you a little about is that you emailed your care team instead of calling. You, we all, deserve to have concerns addressed as quickly as possible. It’s hard for me to do, so I say this for my own benefit, too. Pick up that phone and call until you reach someone who can address your worries. 

Do you have an oncologist or pulmonologist on your team? It sounds like your surgeon is very on top of things, and yet I’ve found that having multiple eyes on new developments is very helpful. I especially respect and trust my oncology radiologist and pulmonologist. My pulmonologist is wonderful. He’s the one who caught the pulmonary embolism when I went to him with some basic questions about asthma , lc, and working out safely. 
Hang in there today. If your weather is nice, catch some moments in the spring sunshine. Keep us posted.
Karen

Huh— I’ve never heard of LC metastasizing to the testicles, but hey, LC does what it wants. 
That weight gain is marvelous— congratulations!
You, my friend, are too determined to be doomed. Keep us posted.

Welcome! I can add only that in the U.S., if patients remain unsettled after a consult with a doctor, they are urged to seek a second opinion, from an oncologist who specializes in lung cancer. The field is changing at such lightning speed that a general oncologist cannot keep up. 
Me and my nodules wish you lots of luck in the stage of waiting and wondering (and worrying.)

Huh— I’ve never heard of LC metastasizing to the testicles, but hey, LC does what it wants. 
That weight gain is marvelous— congratulations!
You, my friend, are too determined to be doomed. Keep us posted.

Tom & Lou are on the money. I’d want to know how big this nodule is, as well. 
The good news is that the newly seen thing is not being described as a potential met.
And I’m with Lou. Major hospital or not, your calls need to be returned. Have you asked who’s covering for your doc? Me, I’’d call the oncology receptionist daily— and very nicely— until I got someone on the doc’s team or department to call you back. You could look online for the name of an associate and see if you can speak to him/her.
Do not let them subtly bully or shame you about asking for information. It’s very nice that your doc said they would call with anything concerning, but those are the processes that meet their needs as an institution, not yours as an individual. (I was recently on a call with insurance. The person brought up something unrelated to my question and I said, “I understand that you have this issue, but my concern hasn’t been addressed. We’re not opening some new topic until mine has.” I would feel very nervous but OK telling my oncologist my needs might not be typical, but they are mine, and therefore an important part of my care. 
Finally, I suggest you be sure to follow up on this pancreas thing. Sounds like it’s been noted before, but it’s always good to ask.  (I ask about every single thing in a radiology report.)
Keep us posted.
K

So glad you are being scanned tomorrow. 
We all search for information when something changes so give yourself some grace along with that head-slapping. As long as you’re checking reputable sites, i.e., Mayo Clinic, cancer centers, I figure it’s better to know than walk in cold to the doctor’s office. The challenge for me is learning to cope with the emotions that come with new things.
What I might nudge you a little about is that you emailed your care team instead of calling. You, we all, deserve to have concerns addressed as quickly as possible. It’s hard for me to do, so I say this for my own benefit, too. Pick up that phone and call until you reach someone who can address your worries. 

Do you have an oncologist or pulmonologist on your team? It sounds like your surgeon is very on top of things, and yet I’ve found that having multiple eyes on new developments is very helpful. I especially respect and trust my oncology radiologist and pulmonologist. My pulmonologist is wonderful. He’s the one who caught the pulmonary embolism when I went to him with some basic questions about asthma , lc, and working out safely. 
Hang in there today. If your weather is nice, catch some moments in the spring sunshine. Keep us posted.
Karen

Oh dear, @Izzy. This breaks my heart. Please know— and let Justin know— you are in my prayers daily. I hope those doctors are at least helping keep him comfortable! 

Oh dear, @Izzy. This breaks my heart. Please know— and let Justin know— you are in my prayers daily. I hope those doctors are at least helping keep him comfortable! 

Oh dear, @Izzy. This breaks my heart. Please know— and let Justin know— you are in my prayers daily. I hope those doctors are at least helping keep him comfortable! 

Oh dear, @Izzy. This breaks my heart. Please know— and let Justin know— you are in my prayers daily. I hope those doctors are at least helping keep him comfortable! 

@Justin1970 @Izzy, I've been wondering about you, as well, Justin. 

@Justin1970 @Izzy, I've been wondering about you, as well, Justin. 

@LilyMir We're in deep planning mode. We start preventative self-prescribed Covid lockdown after next weekend, just in case. 
It's good to see you planning someone else's future travel-- that means your brain is getting ready for you to do some planning for your own.
K