Karen_L

The waiting is so hard. Hang in there.
 
K

FIVE hours? That was a lot more than you-- or the surgeon-- anticipated. I'm sorry it wasn't as straightforward as you'd hoped, but the unexpected seems about par for the course with this goofy disease. The great news is the result. I'm with Lou-- 90% is a dandy start in my mind. I hope you are up and about soon, although that hospital sounds poshy enough that maybe you'd rather stay another day? (Only kidding.) So glad to hear from you. 

FIVE hours? That was a lot more than you-- or the surgeon-- anticipated. I'm sorry it wasn't as straightforward as you'd hoped, but the unexpected seems about par for the course with this goofy disease. The great news is the result. I'm with Lou-- 90% is a dandy start in my mind. I hope you are up and about soon, although that hospital sounds poshy enough that maybe you'd rather stay another day? (Only kidding.) So glad to hear from you. 

Whoa, whoa, whoa, @Rebecca Chambers, I know this new treatment path sounds very scary, but opting to not do treatment feels like a really shocking move to me. I think you have more options than your doctor gave you.  
People live with Stage 4 lung cancer for many many years— in my local LC group, we’ve got a 9 yr and a 16 yr survivor— and others. These folks are living active, full lives. I’m only into my third year. As a Stage 4 person, I’m training for a challenging distance bicycling ride and heading to Italy tomorrow. I am not trying to one-up your staging, but Stage 3 gives you even wider options! 
What kind of biomarker data is your doctor working with? 
And nobody talks about life expectancy in that kind of way any more— that data is completely out of date, not to mention stupidly inaccurate. I can’t even count the number of people whom I know were once told they had x time to live and are now looking at those predictions in the rearview mirror. 
If you feel strongly that you have only these options, then you need to return to your oncologist for a discussion about other alternatives. If that’s all they’re offering, then you must get to a different doctor, a lung cancer specialist, preferably at a major cancer center and get another opinion. The changes in the field of lung cancer are coming too fast and furiously for a general oncologist to keep up. Doctors will sometimes do second opinion meetings virtually if you feel you can’t travel.

Search these forums for more people’s experiences with Keytruda. Stay off of Dr. Google— unless you have a lot of experience discerning hysteria from fact, Google will just make you a basket case of anxiety. And please, seek lots more information before you make such an extreme decision. This forum is useful, plus there are other sources of support that folks here can guide you to. 
Please, if you can’t feel hopeful right now, let us feel it for you. It takes a little time to learn, but it’s never too late to start. Please keep us posted. 
 
Karen

 

I’ll be sure to be sending you courage and peace! You got this!

Sounds like a great trip. It's interesting that you didn't realize your friend has been on steroids for such a long time! What's the day & time of the surgery? 

Hang in there, @Matthew B. One step at a time you and your family will get through this. We're all thinking of you.
Karen

I’ll be sure to be sending you courage and peace! You got this!

Well, I'm sure with you-- I hate lung cancer every day.
You sound pretty miserable and I'm so sorry you're going through this.
Years ago, my daughter has lots of bone pain during her chemo treatment (lymphoma). The cancer nurses told her to take Claritin. Who knows why it worked, but it did, every time she had an infusion. When her hair started falling out, she had one of the nurses shave her head (she had mostly inpatient treatment for about 4 months.) She said it helped the itchy feeling.  
Your doc is working with you on the infection? That is also wearing down your poor body, which is trying so hard.... It is a lot of mental and emotional work, too, just to keep one foot in front of the other. But that's all you have to do-- put one foot in front of the other. You can get through this. 
Sounds like you would benefit from a palliative care person, which is a doc who helps deal with physical nastiness of treatment. Could you speak to your doc about getting a referral? 
Please keep us posted.....
Karen

Sounds like a great trip. It's interesting that you didn't realize your friend has been on steroids for such a long time! What's the day & time of the surgery? 

Blech. You're getting the gold medal for Stupid Cancer Happenings.
I'm hoping they're watching your bloodwork carefully, for indications of poor electrolyte balance and anything that could indicate a need for nutritional support. 
Are they going to see if there's cancer in the fluid? 
FWIW, I don't think Sunnyside is any worse than any local ER. When they thought I had a pulmonary embolism, it was during the Covid time where waits were up to 10 hours and the National Guard was try to help manage the ER. I refused to go (I said I had no coffee so was not adequately prepared 🤪 ) Luckily, I responded to steroids or else it would have been very bad. Next time, I'll follow directions.... 
Hang in.

It sounds like they didn't see anything in the lungs themselves? I had lymph node involvement and was short of breath, and I had a 5 cm tumor (about the size of a lime.)
As Tom said, nodes at multiple sites indicate something is going on, but if they didn't see anything in the lungs, I would wonder why the doc said lung cancer specifically. The shortness of breath is one clear indicator, but only a small piece of the puzzle. Was there anything specific about the lungs?
Once he has the PET, you'll have more information, but remember-- that will be just one more piece in the diagnostic puzzle.
The amount of time it takes to arrive at a diagnosis can be maddening. You have to try to stay patient and not get too far ahead of yourselves-- banish any thought that begins with what if_____, for starters. 
Once it's determined that the lung(s) are the primary area of concern, it's suggested to work with an oncologist specializing in cancer of the lungs. It's a field that's experiencing such growth that a regular oncologist, let alone a GP, would have trouble keeping up. 
Meanwhile, hang in. And, stay off Google-- you will find too much hogwash to be helpful. 
Karen

It sounds like they didn't see anything in the lungs themselves? I had lymph node involvement and was short of breath, and I had a 5 cm tumor (about the size of a lime.)
As Tom said, nodes at multiple sites indicate something is going on, but if they didn't see anything in the lungs, I would wonder why the doc said lung cancer specifically. The shortness of breath is one clear indicator, but only a small piece of the puzzle. Was there anything specific about the lungs?
Once he has the PET, you'll have more information, but remember-- that will be just one more piece in the diagnostic puzzle.
The amount of time it takes to arrive at a diagnosis can be maddening. You have to try to stay patient and not get too far ahead of yourselves-- banish any thought that begins with what if_____, for starters. 
Once it's determined that the lung(s) are the primary area of concern, it's suggested to work with an oncologist specializing in cancer of the lungs. It's a field that's experiencing such growth that a regular oncologist, let alone a GP, would have trouble keeping up. 
Meanwhile, hang in. And, stay off Google-- you will find too much hogwash to be helpful. 
Karen

Well, I'm sure with you-- I hate lung cancer every day.
You sound pretty miserable and I'm so sorry you're going through this.
Years ago, my daughter has lots of bone pain during her chemo treatment (lymphoma). The cancer nurses told her to take Claritin. Who knows why it worked, but it did, every time she had an infusion. When her hair started falling out, she had one of the nurses shave her head (she had mostly inpatient treatment for about 4 months.) She said it helped the itchy feeling.  
Your doc is working with you on the infection? That is also wearing down your poor body, which is trying so hard.... It is a lot of mental and emotional work, too, just to keep one foot in front of the other. But that's all you have to do-- put one foot in front of the other. You can get through this. 
Sounds like you would benefit from a palliative care person, which is a doc who helps deal with physical nastiness of treatment. Could you speak to your doc about getting a referral? 
Please keep us posted.....
Karen

Well, I'm sure with you-- I hate lung cancer every day.
You sound pretty miserable and I'm so sorry you're going through this.
Years ago, my daughter has lots of bone pain during her chemo treatment (lymphoma). The cancer nurses told her to take Claritin. Who knows why it worked, but it did, every time she had an infusion. When her hair started falling out, she had one of the nurses shave her head (she had mostly inpatient treatment for about 4 months.) She said it helped the itchy feeling.  
Your doc is working with you on the infection? That is also wearing down your poor body, which is trying so hard.... It is a lot of mental and emotional work, too, just to keep one foot in front of the other. But that's all you have to do-- put one foot in front of the other. You can get through this. 
Sounds like you would benefit from a palliative care person, which is a doc who helps deal with physical nastiness of treatment. Could you speak to your doc about getting a referral? 
Please keep us posted.....
Karen

Kamoto, 
I'm chiming in late here, but sending strong encouragement to keep taking one step at a time. 
Karen

"1. Stable posttreatment changes in right lower lung.
2. No adenopathy or recurrent disease.
"
I had two fabulous weeks in Italy, now a report of no recurrent disease. What else matters? 
Brain check-up next month. 
Hope you're all having some nice moments in your days. 
Karen
 

"1. Stable posttreatment changes in right lower lung.
2. No adenopathy or recurrent disease.
"
I had two fabulous weeks in Italy, now a report of no recurrent disease. What else matters? 
Brain check-up next month. 
Hope you're all having some nice moments in your days. 
Karen
 

"1. Stable posttreatment changes in right lower lung.
2. No adenopathy or recurrent disease.
"
I had two fabulous weeks in Italy, now a report of no recurrent disease. What else matters? 
Brain check-up next month. 
Hope you're all having some nice moments in your days. 
Karen
 

"1. Stable posttreatment changes in right lower lung.
2. No adenopathy or recurrent disease.
"
I had two fabulous weeks in Italy, now a report of no recurrent disease. What else matters? 
Brain check-up next month. 
Hope you're all having some nice moments in your days. 
Karen
 

That’s the  big one. I recently heard a podcast about hope— behind a paywall, so I signed up for a 7day trial and then cancelled— and wrote about it here. 
I’ve found the further out from the initial treatment I get, the more I accept the disease as part of my life. The fear subsides when I shift my focus away from “what if______ “ [fill in the blank] to “what’s now?” because this moment is the only thing I’ve got for sure. Shifting the focus to the current day takes some practice, but it’s worth it. 
I’ve found the mental part of lung cancer to sometimes feel more challenging than the treatment itself. I see a counselor, which helps me keep my head on straight. 
Hang in, and keep us posted. 
Karen

That’s the  big one. I recently heard a podcast about hope— behind a paywall, so I signed up for a 7day trial and then cancelled— and wrote about it here. 
I’ve found the further out from the initial treatment I get, the more I accept the disease as part of my life. The fear subsides when I shift my focus away from “what if______ “ [fill in the blank] to “what’s now?” because this moment is the only thing I’ve got for sure. Shifting the focus to the current day takes some practice, but it’s worth it. 
I’ve found the mental part of lung cancer to sometimes feel more challenging than the treatment itself. I see a counselor, which helps me keep my head on straight. 
Hang in, and keep us posted. 
Karen

@Sallysh,thank you. I am so, so glad you find it helpful. The settings have commenting turned off for older posts, but I can change that.

That is such great news Karen and glad you had a wonderful time in Italy! I hope to make it there someday.
Pam

"1. Stable posttreatment changes in right lower lung.
2. No adenopathy or recurrent disease.
"
I had two fabulous weeks in Italy, now a report of no recurrent disease. What else matters? 
Brain check-up next month. 
Hope you're all having some nice moments in your days. 
Karen