Karen_L

I'm always envious when surgery is an option for someone. It offers such a measurable outcome.
For myself, starting into year 4 of this nonsense, I will will act aggressively and decisively the moment there is a change in the status of my scans. YMMV-- we all have different approaches and priorities. Best of luck. 

@Anthony, a friend of mine has an Exon 19 mutation, with lots of mets to the bones. He was diagnosed 16 years ago. 16  Don't quit before the miracle....

I'm always envious when surgery is an option for someone. It offers such a measurable outcome.
For myself, starting into year 4 of this nonsense, I will will act aggressively and decisively the moment there is a change in the status of my scans. YMMV-- we all have different approaches and priorities. Best of luck. 

@Anthony, a friend of mine has an Exon 19 mutation, with lots of mets to the bones. He was diagnosed 16 years ago. 16  Don't quit before the miracle....

@RJN Complete remission? OMG, woman, you need a ticker tape parade. I'm thrilled for you. Here's hoping your summer plans shape up to be glorious!

@Scruboak, your simple statement, "I struggle with this," spoke volumes to me. And, I cracked up because letting go of my agenda is not one of my strong points. 🤪

I'm always envious when surgery is an option for someone. It offers such a measurable outcome.
For myself, starting into year 4 of this nonsense, I will will act aggressively and decisively the moment there is a change in the status of my scans. YMMV-- we all have different approaches and priorities. Best of luck. 

@Scruboak, your simple statement, "I struggle with this," spoke volumes to me. And, I cracked up because letting go of my agenda is not one of my strong points. 🤪

@Blossomsmom May 6th probably can't come soon enough. I'll be thinking of you as the date approaches.

@Anthony, a friend of mine has an Exon 19 mutation, with lots of mets to the bones. He was diagnosed 16 years ago. 16  Don't quit before the miracle....

@RJN Complete remission? OMG, woman, you need a ticker tape parade. I'm thrilled for you. Here's hoping your summer plans shape up to be glorious!

I'm always envious when surgery is an option for someone. It offers such a measurable outcome.
For myself, starting into year 4 of this nonsense, I will will act aggressively and decisively the moment there is a change in the status of my scans. YMMV-- we all have different approaches and priorities. Best of luck. 

@Scruboak, your simple statement, "I struggle with this," spoke volumes to me. And, I cracked up because letting go of my agenda is not one of my strong points. 🤪

Sooo happy for you on good scans, Karen!  Great self-care on your part too in stopping the stressful volunteering.  There are likely other volunteer positions, even with kids in a different role, if you decide on something different down the road.  Important you take care of yourself which you're doing.  Thanks for sharing!

It's been quiet here lately. I just wanted to share that my latest chest CT is stable, with no sign of nodules or new metastases. Yay Tagrisso!
I knew it would be a boring oncologist follow-up visit, so I planned to talk about stress and its impact on recurrence. I was volunteering in a high-stress environment, with traumatized kids. The doc told me that many of her patients who incorporated dietary changes, took up meditation, and exercised also did as much as they could to avoid stress, even going as far as changing jobs. She said the most important thing was to focus on doing what brings joy. In her eyes, my volunteer work seemed dark and difficult. She didn't tell me what to do, but she repeated the joy thing about 8 million times. While I regretfully stopped the volunteer job, I've found I'm really enjoying focusing on joy. 
I have done a little research on PTS (post-traumatic stress) and cancer survivors. One study reports on a a cellular mechanism that, under the right circumstances, can trigger a cascade effect that may result in reactivation of cancer cells. (Researchers emphasized this was one of what they think may be multiple pathways.)  Note that PTS is not the same thing as PTSD. And, the news about PTS is not all bad. According to a psycho-oncology report in Psychiatric Times, "post-cancer trauma symptoms may coexist with finding meaning, strengthened relationships, enhanced spirituality, bolstered sense of personal strength, and clearer life priorities." 
Hope you are all well.
 
 

Kamoto,
NED on your chest and abdomen-- WOW! What a wonderful result.
I don't have experience with a sore that doesn't heal. It reminds me of old TV commercials about when to check with your doctor, which you're doing. May I, with a little gentle humor, remind you of your last foray into self-diagnosis? Not a fun time. 
I'm selfishly glad you told us about this-- I've had a weird thing on my arm that I really should get checked out. Ugh. Maybe I need to make an appointment with the dude who did the MOHS surgery on my nose (for some skin cancer.) So, thanks. I hate calling more doctors, really hate. But ya gotta do what you gotta do. So, thanks. And I'll be thinking of you. Please keep us posted. 
K

@NYC GUY, you may want to re-post this as its own topic-- it will likely generate more responses. 
I'm always envious of people who have the option for surgery. With surgery, you get rid of the nasty thing and you get a biopsy. My tumor and lymph node locations sent me down the road of chemo and radiation, and now, a targeted therapy.  
If you are concerned, it's best to find a second opinion, ideally, from a major cancer center. You're lucky to be near several with the federal NCI designation. You can learn more about why the NCI designation can be helpful here. 
Please consider re-posting this in order to get more feedback. And, keep us posted.

@Livin Life, I'm glad you found this site. It's been the most reputably helpful of the few I've found, as well as the most genuinely supportive. We have waves of activity, depending on who's checking in. 
I don't know much about what you're experiencing. I had ground glass after radiation therapy fried my tumor. It has gradually cleared as the severe inflammation from immunology-induced pneumonitis resolved but it was a very long haul. 
Keep us posted!
 

It's been quiet here lately. I just wanted to share that my latest chest CT is stable, with no sign of nodules or new metastases. Yay Tagrisso!
I knew it would be a boring oncologist follow-up visit, so I planned to talk about stress and its impact on recurrence. I was volunteering in a high-stress environment, with traumatized kids. The doc told me that many of her patients who incorporated dietary changes, took up meditation, and exercised also did as much as they could to avoid stress, even going as far as changing jobs. She said the most important thing was to focus on doing what brings joy. In her eyes, my volunteer work seemed dark and difficult. She didn't tell me what to do, but she repeated the joy thing about 8 million times. While I regretfully stopped the volunteer job, I've found I'm really enjoying focusing on joy. 
I have done a little research on PTS (post-traumatic stress) and cancer survivors. One study reports on a a cellular mechanism that, under the right circumstances, can trigger a cascade effect that may result in reactivation of cancer cells. (Researchers emphasized this was one of what they think may be multiple pathways.)  Note that PTS is not the same thing as PTSD. And, the news about PTS is not all bad. According to a psycho-oncology report in Psychiatric Times, "post-cancer trauma symptoms may coexist with finding meaning, strengthened relationships, enhanced spirituality, bolstered sense of personal strength, and clearer life priorities." 
Hope you are all well.
 
 

It's been quiet here lately. I just wanted to share that my latest chest CT is stable, with no sign of nodules or new metastases. Yay Tagrisso!
I knew it would be a boring oncologist follow-up visit, so I planned to talk about stress and its impact on recurrence. I was volunteering in a high-stress environment, with traumatized kids. The doc told me that many of her patients who incorporated dietary changes, took up meditation, and exercised also did as much as they could to avoid stress, even going as far as changing jobs. She said the most important thing was to focus on doing what brings joy. In her eyes, my volunteer work seemed dark and difficult. She didn't tell me what to do, but she repeated the joy thing about 8 million times. While I regretfully stopped the volunteer job, I've found I'm really enjoying focusing on joy. 
I have done a little research on PTS (post-traumatic stress) and cancer survivors. One study reports on a a cellular mechanism that, under the right circumstances, can trigger a cascade effect that may result in reactivation of cancer cells. (Researchers emphasized this was one of what they think may be multiple pathways.)  Note that PTS is not the same thing as PTSD. And, the news about PTS is not all bad. According to a psycho-oncology report in Psychiatric Times, "post-cancer trauma symptoms may coexist with finding meaning, strengthened relationships, enhanced spirituality, bolstered sense of personal strength, and clearer life priorities." 
Hope you are all well.
 
 

@Livin Life, I'm glad you found this site. It's been the most reputably helpful of the few I've found, as well as the most genuinely supportive. We have waves of activity, depending on who's checking in. 
I don't know much about what you're experiencing. I had ground glass after radiation therapy fried my tumor. It has gradually cleared as the severe inflammation from immunology-induced pneumonitis resolved but it was a very long haul. 
Keep us posted!
 

@Scruboak It's such an important distinction, yet so difficult to put into words. I've stared reading about it. It's amazing how many fields talk about joy, even outside of cancer and typical mental health sites. Yet, there are few actual descriptions of what it feels like, or what the experience is. 

@Livin Life, I'm glad you found this site. It's been the most reputably helpful of the few I've found, as well as the most genuinely supportive. We have waves of activity, depending on who's checking in. 
I don't know much about what you're experiencing. I had ground glass after radiation therapy fried my tumor. It has gradually cleared as the severe inflammation from immunology-induced pneumonitis resolved but it was a very long haul. 
Keep us posted!
 

Great news Karen.

Hi Bob, and welcome. The waiting is just awful. It made my head spin. Hang in and keep us posted.