Karen_L

@LilyMirSending courage. You got this. Don't forget, being sick can't make you feel less resilient than usual. Take some deep breaths and one step at a time....

I’ve gotten these. There’s no pattern to when they appear and it seems to take a while for them to go. But I have my superglue ready….Plus, any issue related to nails or finger tips immediately improves when I’m diligent about using gloves for dishwashing etc. I think that might also be true if I were bathing kids, weird as that may sound. 
I second Judy’s comment about reporting side effects, but unless I need help figuring out how to deal with them, I save my report for my regular visits. A standard question my oncologist asks each time is whether I’ve had side effects. 
@Judy M2, could you give an example of what you mean when you say ointment? 

I’ve gotten these. There’s no pattern to when they appear and it seems to take a while for them to go. But I have my superglue ready….Plus, any issue related to nails or finger tips immediately improves when I’m diligent about using gloves for dishwashing etc. I think that might also be true if I were bathing kids, weird as that may sound. 
I second Judy’s comment about reporting side effects, but unless I need help figuring out how to deal with them, I save my report for my regular visits. A standard question my oncologist asks each time is whether I’ve had side effects. 
@Judy M2, could you give an example of what you mean when you say ointment? 

@LilyMirSending courage. You got this. Don't forget, being sick can't make you feel less resilient than usual. Take some deep breaths and one step at a time....

@Justin1970 NONE OF THIS IS FAIR! The assault, the fall, your doctors' responses, your stupid brain met. Of course you're down. Seems like there might be some anger under that down-ness, too. 
My radiologist said she would monitor me for adverse reactions to the gamma knife for two years. You are well within that time period since your gamma knife. 
Let me just rant here for a minute: You have been a good advocate for yourself and they are a bunch of idiots. Especially the stupid idiot who made that callous remark to your mum.
OK, rant over. 
I don't understand how your medical system operates. Here, (U.S.) I would be seeking another opinion from a respected oncology radiologist in a different clinic, as well as contacting a primary care person to get a handle on the blood pressure. I would be doing that immediately. That may not be possible in your system, but it doesn't mean you can't take some action on your behalf.
I suggest you start to document all the events, from gamma knife to now. Date each event, whether it was just a phone call or concern you raised, and write down 1) what happened, 2) who you spoke to, 3) what they said.
Then make a list of what the issues are you are dealing with.
Then find someone to give that to and discuss how each concern/issue will be addressed. Is there a patient advocate? Someone who helps patients navigate your health care system? A director of a clinic? Can someone in your family research this and get an appointment? 
The priority, in my mind, is that blood pressure. 
Do not let them steal your power. You can act in your own behalf. It may not make the people in your system happy, but too friggin' bad.
GO GET 'EM, JUSTIN. 
PS I know this is not an approach everyone would be comfortable with and I understand that-- you must do what you are comfortable with, and I, for one, will support you in whatever you decide. 
I still say, GO GET 'EM.

@LilyMirSending courage. You got this. Don't forget, being sick can't make you feel less resilient than usual. Take some deep breaths and one step at a time....

@Justin1970 NONE OF THIS IS FAIR! The assault, the fall, your doctors' responses, your stupid brain met. Of course you're down. Seems like there might be some anger under that down-ness, too. 
My radiologist said she would monitor me for adverse reactions to the gamma knife for two years. You are well within that time period since your gamma knife. 
Let me just rant here for a minute: You have been a good advocate for yourself and they are a bunch of idiots. Especially the stupid idiot who made that callous remark to your mum.
OK, rant over. 
I don't understand how your medical system operates. Here, (U.S.) I would be seeking another opinion from a respected oncology radiologist in a different clinic, as well as contacting a primary care person to get a handle on the blood pressure. I would be doing that immediately. That may not be possible in your system, but it doesn't mean you can't take some action on your behalf.
I suggest you start to document all the events, from gamma knife to now. Date each event, whether it was just a phone call or concern you raised, and write down 1) what happened, 2) who you spoke to, 3) what they said.
Then make a list of what the issues are you are dealing with.
Then find someone to give that to and discuss how each concern/issue will be addressed. Is there a patient advocate? Someone who helps patients navigate your health care system? A director of a clinic? Can someone in your family research this and get an appointment? 
The priority, in my mind, is that blood pressure. 
Do not let them steal your power. You can act in your own behalf. It may not make the people in your system happy, but too friggin' bad.
GO GET 'EM, JUSTIN. 
PS I know this is not an approach everyone would be comfortable with and I understand that-- you must do what you are comfortable with, and I, for one, will support you in whatever you decide. 
I still say, GO GET 'EM.

@PstarDang it. You might want to do a little reading about the difference between gamma knife and cyber knife. This seems pretty comprehensive. https://www.princetonneurologicalsurgery.com/radiosurgery-institute/treatment-tools/gamma-knife-vs-cyberknife/
Take deep breaths. You can do this. 

What a joyous post. Thanks, Judy, and congratulations. Fingers crossed for a completely uneventful Monday. 

@Cin We each go to our unique dark corner whenever there's something different. I'm great until after the dust settles, then I crawl under the bed for a while before I can function again. 
I have a fatty cyst on my liver that the scan-readers remark on, but no one cares, so I don't either. Even a few nodules that appeared didn't get any of us too excited-- they were just too teeny. And, in fact, they disappeared. 
I hope you can take deep breaths and walk through this with a bit of confidence. You can do it!
 

@Cin We each go to our unique dark corner whenever there's something different. I'm great until after the dust settles, then I crawl under the bed for a while before I can function again. 
I have a fatty cyst on my liver that the scan-readers remark on, but no one cares, so I don't either. Even a few nodules that appeared didn't get any of us too excited-- they were just too teeny. And, in fact, they disappeared. 
I hope you can take deep breaths and walk through this with a bit of confidence. You can do it!
 

I’m struck by your comment that your mom has said she doesn’t want to continue with chemo. Are there other treatment options?
How old is your mom? Mine is approaching 90 and has made her wishes about medical treatments very clear, in conversations and in written legal documents (i.e., advance directive). 
Does your mom have an advance directive or living will in place, in her medical charts and with the person who holds her power of medical attorney?
The topics in such a document are hard to think about, let alone discuss. And yet, having dealt with protracted illnesses of several family members, I can tell you that when the moment came when I needed this information, I was very glad to have it. 
I like how the Mayo Clinic explains the advance directive: https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/living-wills/art-20046303?p=1

The hardest question to ask ourselves, I think, is whether it is OK with us to have our sick loved one say, “I’m done,” with a particular treatment (or any treatment at all). 

You and she are in a hard time. I wish you both peace, and the courage to speak honestly with and listen deeply to one another. 
 

Hi, Carrie, 
May I suggest you shoot a note or make a quick call to the physician who ordered the scan and ask them— I always think going to the source is the best idea. I think it’s especially important to share with them the concern that is prompting  your question. 
Best,
Karen

It’s amazing how many new trials and research findings come out each day! Thanks for sharing this.

What a joyous post. Thanks, Judy, and congratulations. Fingers crossed for a completely uneventful Monday. 

Hi, Carrie, 
May I suggest you shoot a note or make a quick call to the physician who ordered the scan and ask them— I always think going to the source is the best idea. I think it’s especially important to share with them the concern that is prompting  your question. 
Best,
Karen

It’s amazing how many new trials and research findings come out each day! Thanks for sharing this.

@PstarDang it. You might want to do a little reading about the difference between gamma knife and cyber knife. This seems pretty comprehensive. https://www.princetonneurologicalsurgery.com/radiosurgery-institute/treatment-tools/gamma-knife-vs-cyberknife/
Take deep breaths. You can do this. 

@Cin We each go to our unique dark corner whenever there's something different. I'm great until after the dust settles, then I crawl under the bed for a while before I can function again. 
I have a fatty cyst on my liver that the scan-readers remark on, but no one cares, so I don't either. Even a few nodules that appeared didn't get any of us too excited-- they were just too teeny. And, in fact, they disappeared. 
I hope you can take deep breaths and walk through this with a bit of confidence. You can do it!
 

@Justin1970 NONE OF THIS IS FAIR! The assault, the fall, your doctors' responses, your stupid brain met. Of course you're down. Seems like there might be some anger under that down-ness, too. 
My radiologist said she would monitor me for adverse reactions to the gamma knife for two years. You are well within that time period since your gamma knife. 
Let me just rant here for a minute: You have been a good advocate for yourself and they are a bunch of idiots. Especially the stupid idiot who made that callous remark to your mum.
OK, rant over. 
I don't understand how your medical system operates. Here, (U.S.) I would be seeking another opinion from a respected oncology radiologist in a different clinic, as well as contacting a primary care person to get a handle on the blood pressure. I would be doing that immediately. That may not be possible in your system, but it doesn't mean you can't take some action on your behalf.
I suggest you start to document all the events, from gamma knife to now. Date each event, whether it was just a phone call or concern you raised, and write down 1) what happened, 2) who you spoke to, 3) what they said.
Then make a list of what the issues are you are dealing with.
Then find someone to give that to and discuss how each concern/issue will be addressed. Is there a patient advocate? Someone who helps patients navigate your health care system? A director of a clinic? Can someone in your family research this and get an appointment? 
The priority, in my mind, is that blood pressure. 
Do not let them steal your power. You can act in your own behalf. It may not make the people in your system happy, but too friggin' bad.
GO GET 'EM, JUSTIN. 
PS I know this is not an approach everyone would be comfortable with and I understand that-- you must do what you are comfortable with, and I, for one, will support you in whatever you decide. 
I still say, GO GET 'EM.

Hi @LJH
The good news is that you're at one of the top cancer research centers in the country, and it wounds like they took your case to a tumor board to discuss. This is a good thing-- my radiologist says these discussions can be quite heated, but also very thorough. 
As you sit in anxiety, you might find it useful to watch this video about lung nodules. It's from a Lung Cancer Living Room run by the Go2 Foundation, formerly Adadario Foundation. Here's the description: 
Link: 
 

What a joyous post. Thanks, Judy, and congratulations. Fingers crossed for a completely uneventful Monday. 

Hi @LJH
The good news is that you're at one of the top cancer research centers in the country, and it wounds like they took your case to a tumor board to discuss. This is a good thing-- my radiologist says these discussions can be quite heated, but also very thorough. 
As you sit in anxiety, you might find it useful to watch this video about lung nodules. It's from a Lung Cancer Living Room run by the Go2 Foundation, formerly Adadario Foundation. Here's the description: 
Link: 
 

UPDATE 11/1/22: I got my results yesterday, still NED as I expected. I have now graduated to 4-month scans (previously every 3 months)! I've gotten to the point where I can tell which radiologist read my scans. Each one has a different writing style. For the first time, "a few" apical nodules in my right lung were called out, the largest being 6 mm. I was only aware of the large one, but these nodules are all stable and are not worrisome. 
ORIGINAL POST:
Three years ago today my primary doctor told me that an Xray showed a 6 cm mass in my lower left lung. Lung cancer. You hear those words and your head starts spinning. But, she said, it's not a death sentence anymore. I knew nothing about lung cancer and really didn't believe her. 
I was referred to a pulmonologist, medical oncologist and radiation oncologist in quick succession. On Halloween 2019, my pulmonologist performed a rigid bronchoscopy to take tissue for biopsy and biomarker testing. The results were Stage IIIB NSC adenocarcinoma. 
It took time for the biomarker tests to come back in mid-November, and they showed an EGFR driver mutation. I still didn't know what that meant. 
November 2019 was a flurry of activity, seeing both oncologists, getting a port placed, getting dental work done and getting a bulk Teflon injection into my left vocal cord, which was paralyzed by the tumor. 
On December 3, 2019 I started the first of 6 weekly infusions of chemo (carboplatin and taxol) and 30 sessions of chest radiation. These treatments were not without side effects, and if I were to do it all again, I'd get a palliative care specialist on my team at the beginning. 
In March 2020 I started on Tagrisso for the EGFR mutation and have taken it daily since. My side effects are common and manageable. 
I never thought I'd make it this far but here I am 3 years later and NED. I found LUNGevity months after treatments ended, while I was still recovering. I wish I had found this wonderful community sooner, but better late than never. 
Coincidentally, I had my regular 3-month PET/CT scan this morning and will get results on Halloween. I don't expect there to be any changes. 
For anyone just diagnosed, I hope you'll learn as much as possible about this disease and all the modern treatments that are available. My doctor was right after all. I consider myself very fortunate that I have a great medical oncologist (even if he is a fan of the Phillies and Eagles) and the support of my husband, family and friends. I could not have made it this far without all of them and you! 

What a horrifying experience, I am beyond shocked Justin. We used to hear NHS was top notch, what happened?! Certainly you need a better hospital, and you may want to contact your MP and even local media. This is atrocious. Please try to have a family member or friend with you at all times as an advocate whenever possible! I heard similar stories in Canada, one was of an elderly man (retired doctor!) whom staff assumed is homeless and was treated with utter contempt and neglect. So sad and infuriating.  Hopefully better days are coming and it will be a good Xmas so keep fighting for better care!