Karen_L

Thank you Karen! I am beyond a squeeky wheel, I am downright pushy, but always in a nice way.  The gyn/oncologist is not in the same system as my pulmonologist. She  said if he (gyn) cannot see me this week, she will have me see another oncologist in the same system she is in that specializes in lung canner. Then, between the two of them, they will get what information they need from the original gyn/oncologist. I am quite sure all three Dr.s will be involved in this. My pulmonologist is a mover and a shaker and she gets on things fast.
I know that my pulmonologist ordred genetic testing of the samples. They have known it was s single tumor since the PET scan 2 weeks ago, and the bronchoscopy confirmed that. Let's hope treatment starts fast so that's all they will be dealing with.
For now, I am staying away from google until I have more solid information. I am just trying to focus on the positives: it's one tumor, the endo cancer was slow growing to begin with, and they not only have standard chemo, and genetic options, but also hormonal options as most endo cancers are hormonally driven.
Weekends are the hardest for me as there is just nothing I can do to facilitate things moving along. Tomorrow is Monday and I can be in action, which s MUCH better.
 

Ugh, I’m so sorry you’re experiencing all this. I can understand why you’d feel angry at your original providers. On the other hand, if this is such a rarity, they will probably be in a medical dither, too. 
This waiting around for an appointment is hard ridiculous. A doctor’s scheduling staff told me something ridiculous a couple of days ago, which suits the doctor, but is bad for me. So bollocks on the scheduling office, I’m going around them to contact the doctor directly. (I have a relationship with him I feel I can trade on.) My situation also involves a disciplinary cross-over, plus insurance, which I’m sure motivates everyone to not be the primary point person. <sigh> 
Since the pulmonologist asked that you bring the gyn on board, perhaps their office would be willing to get on the line to the gyn’s office to urge the process along. Things seem to go faster that way. And, I don’t know if they are all part of the same medical system, but if they are, it sounds like you might benefit from a single point of contact to be coordinating all this. Here, that’s called a nurse navigator. In other places, it’s a case manager. Of course, you may decide that is not something you’d be interested in; one week into my lung cancer dx process, I decided the nurse navigator was simply a well-meaning gatekeeper to all the medical folks, and I just stepped around her. I have found it to be greatly to my benefit to be a squeaky wheel. A cheerful, personable, helpful wheel, but squeaky nonetheless. I joke about being their resident pain-in-the butt. I find they are more helpful when I am not projecting my terror, but seem to be a super-centered person who finds the system amusing and stupid— because generally, they do too. 
I’m heartened that yours is a single tumor. It sounds as though that was discovered via biopsy? Have they done any genetic testing? 
You are already suffering from your foray into GoogleLand, so there’s no need to harp on it. At the same time, as you endure the waiting game, I wonder if it might help your sense of agency to do a little poking around in sites that might be doing research in areas related to the areas you seem to be treading in. I am not suggesting you’d do anything with the intention of action, but it might keep your mind occupied. I tend to feel better when I am learning something (that isn’t related to scary statistics.) The NCI-designated cancer centers might be interesting to look at. And, if this would just add fuel to your anxiety, please, do not even consider it.
Hang in. Keep us posted. 

 

 
 
 

Ugh, I’m so sorry you’re experiencing all this. I can understand why you’d feel angry at your original providers. On the other hand, if this is such a rarity, they will probably be in a medical dither, too. 
This waiting around for an appointment is hard ridiculous. A doctor’s scheduling staff told me something ridiculous a couple of days ago, which suits the doctor, but is bad for me. So bollocks on the scheduling office, I’m going around them to contact the doctor directly. (I have a relationship with him I feel I can trade on.) My situation also involves a disciplinary cross-over, plus insurance, which I’m sure motivates everyone to not be the primary point person. <sigh> 
Since the pulmonologist asked that you bring the gyn on board, perhaps their office would be willing to get on the line to the gyn’s office to urge the process along. Things seem to go faster that way. And, I don’t know if they are all part of the same medical system, but if they are, it sounds like you might benefit from a single point of contact to be coordinating all this. Here, that’s called a nurse navigator. In other places, it’s a case manager. Of course, you may decide that is not something you’d be interested in; one week into my lung cancer dx process, I decided the nurse navigator was simply a well-meaning gatekeeper to all the medical folks, and I just stepped around her. I have found it to be greatly to my benefit to be a squeaky wheel. A cheerful, personable, helpful wheel, but squeaky nonetheless. I joke about being their resident pain-in-the butt. I find they are more helpful when I am not projecting my terror, but seem to be a super-centered person who finds the system amusing and stupid— because generally, they do too. 
I’m heartened that yours is a single tumor. It sounds as though that was discovered via biopsy? Have they done any genetic testing? 
You are already suffering from your foray into GoogleLand, so there’s no need to harp on it. At the same time, as you endure the waiting game, I wonder if it might help your sense of agency to do a little poking around in sites that might be doing research in areas related to the areas you seem to be treading in. I am not suggesting you’d do anything with the intention of action, but it might keep your mind occupied. I tend to feel better when I am learning something (that isn’t related to scary statistics.) The NCI-designated cancer centers might be interesting to look at. And, if this would just add fuel to your anxiety, please, do not even consider it.
Hang in. Keep us posted. 

 

 
 
 

I'll echo Tom here. With lung cancer, it's all about moving forward. You did what you thought was best based on the advice you got. 
Moving forward, it sounds like you have more confidence in MSK, so just do it ASAP. Follow up on getting All The Tests, or having a review of the ones he had: PET could help provide more info about node involvement; MRI of brain is important for establishing a baseline because the central nervous system is one place lung cancer likes to travel.  
For myself, for what it's worth, I did not seek a formal second opinion. I listened to my primary care doc, who urged me to not delay treatment, and a conversation with a former pulmonologist I deeply respect, who also urged me to get going with treatment. So, not everybody even does a second opinion. 
I think you can reassure your father that he responded to the situation at hand and should celebrate that. I mean, it sounds like all the visible cancer was removed. Focus on that and there's no need for self-recriminations. It's time to focus on living a full and rich life, while getting that care with MSK established. 
And, please know that we all experience whiplash-- that's a great was to describe it-- no matter what our diagnosis or initial action. There's lots of emotions to unpack after something like this. Maybe a counselor could help. 
 

Perhaps if there were a different option with the same or similar outcomes, price would become a motivating factor in prescribing Tag. Right now, it's what we've got and we are so lucky to have it.
Big Pharma's profits are beyond what my imagination can conceive; they claim it's because of the costs associated with doing research. Until I learn that oncologists are getting kickbacks from AstraZeneca, I take my pill and am thankful to be alive. (I mostly curse what I imagine to be corporate greed.)
Cost per dose: $17,000 per month. Copay ~$860 per month. Under Medicare, and considering other medications I take,  I hit the maximum out-of-pocket ceiling about 15 minutes after the new year starts, so then my copay is zero.
My side effects can be annoying, but are very manageable. I find that reading about the side effects more than once doesn't serve my quality of life. I like to have a broad awareness, then go about my business. If I have any concerns, I call the oncology office. And, the death thing? Unless they give you details about each individual case, there's no way to know how Tag played into each one. 
Deciding on the course of treatment you'll pursue is not easy, especially early in the treatment-surveillance process. I've been stable on Tagrisso for more than 2 years now-- woohoo!-- so have not had your experience. But I did learn from a friend whose philosophy was to celebrate a stable condition and hold off on treatment until he had a recurrence. His reasoning was that since no treatment cures lung cancer-- it merely thwarts it for a while-- he'd hold treatments in reserve until he needed them. I don't need a philosophy like that, but I'm glad to have known his. 

Oh, Alex, I'm sorry you and your dad are experiencing this. I can understand why you feel numb-- that's a trauma response, and you've certainly experienced that with your mother's death. I have done some reading about it and write about it here.
You mention a few mutations that are negative, but those are nowhere near the number of mutations that have been identified in lung cancer. It would worth following up with the docs on his team as you learn more about biomarkers. Lou sent you a goldmine of information! I'm assuming he'll follow up with an oncologist, but I don't know the treatment pathway for early stage lung cancer that's been surgically addressed. Maybe others do. 
Does your father live with anyone? Have you explored, with a social worker at Langone, possibilities of support services when you can't be there? I'm thinking meals, exercise, counseling....That all may seem unnecessary right now, but keep it in mind for the future. I know all too well the challenges of providing care to an older person in-home. I cared for my 91 year-old mother for three months as she suffered and recovered from Covid. I didn't realize I couldn't keep managing the nighttime and daytime without support. By the time I realized that, patterns of care had been established and mother was unwilling to accept changes,  i.e., help from outside the home. Plus, the prospect of of care-giving from afar feels a bit daunting to me, especially as regards the expense of travel.
I wish you all the luck in the world as you manage this. 
Please keep us posted. 

My father has a romantic partner who is very involved in supporting him through his care, for which I am grateful. He also lives close to a few of his siblings and cousins, and they have also been helpful. At this stage I think he remains strong-bodied enough, and he has enough of a support system, that I don't foresee major challenges, but I will certainly be keeping your advice in mind if things take an unfortunate turn.

Oh, Alex, I'm sorry you and your dad are experiencing this. I can understand why you feel numb-- that's a trauma response, and you've certainly experienced that with your mother's death. I have done some reading about it and write about it here.
You mention a few mutations that are negative, but those are nowhere near the number of mutations that have been identified in lung cancer. It would worth following up with the docs on his team as you learn more about biomarkers. Lou sent you a goldmine of information! I'm assuming he'll follow up with an oncologist, but I don't know the treatment pathway for early stage lung cancer that's been surgically addressed. Maybe others do. 
Does your father live with anyone? Have you explored, with a social worker at Langone, possibilities of support services when you can't be there? I'm thinking meals, exercise, counseling....That all may seem unnecessary right now, but keep it in mind for the future. I know all too well the challenges of providing care to an older person in-home. I cared for my 91 year-old mother for three months as she suffered and recovered from Covid. I didn't realize I couldn't keep managing the nighttime and daytime without support. By the time I realized that, patterns of care had been established and mother was unwilling to accept changes,  i.e., help from outside the home. Plus, the prospect of of care-giving from afar feels a bit daunting to me, especially as regards the expense of travel.
I wish you all the luck in the world as you manage this. 
Please keep us posted. 

Oh, Alex, I'm sorry you and your dad are experiencing this. I can understand why you feel numb-- that's a trauma response, and you've certainly experienced that with your mother's death. I have done some reading about it and write about it here.
You mention a few mutations that are negative, but those are nowhere near the number of mutations that have been identified in lung cancer. It would worth following up with the docs on his team as you learn more about biomarkers. Lou sent you a goldmine of information! I'm assuming he'll follow up with an oncologist, but I don't know the treatment pathway for early stage lung cancer that's been surgically addressed. Maybe others do. 
Does your father live with anyone? Have you explored, with a social worker at Langone, possibilities of support services when you can't be there? I'm thinking meals, exercise, counseling....That all may seem unnecessary right now, but keep it in mind for the future. I know all too well the challenges of providing care to an older person in-home. I cared for my 91 year-old mother for three months as she suffered and recovered from Covid. I didn't realize I couldn't keep managing the nighttime and daytime without support. By the time I realized that, patterns of care had been established and mother was unwilling to accept changes,  i.e., help from outside the home. Plus, the prospect of of care-giving from afar feels a bit daunting to me, especially as regards the expense of travel.
I wish you all the luck in the world as you manage this. 
Please keep us posted. 

Hi, Diana,
Welcome! I'm glad you found us. And, I'm so glad you're making it through recovery from surgery. We're here for any questions or concerns. 
Karen

I cannot agree more with @Karen_L. After three years of COVID lockdown, then cancer diagnosis, immunotherapy, radiation and surgery, I felt 10 years older and constantly exhausted and fatigued - and my sleep was crazy disturbed.  My stamina was on par with my 75 year old dad. But made a decision to get back to myself. I did Couch 2 5k, Weekly gentle pilates, swimming when I could, walking on bad days. It took a good 3-4 months before I slowly started to feel a real difference. It has been a year now, and although my sleep isn’t perfect, I wake up refreshed on most days, and feel relatively “normal” again. X

How's your activity level? It may sound counter-intuitive, but fatigue is often relieved by more activity. And, the kind of tiredness activity generates is great for sleep.... Not everyone is an exerciser, but even walking is beneficial. I had to work up to walking 2000 steps, and that took a long time. But I got stronger. First walking, then to my stationary bike, then back to the outdoors. 

What a good grandpa! I love that you'll thank your doc. I try to remember to do this and I think it matters to them.

Hi, Diana,
Welcome! I'm glad you found us. And, I'm so glad you're making it through recovery from surgery. We're here for any questions or concerns. 
Karen

When I had my gamma knife procedure, they gave me one blue pill and I missed the whole thing-- although I was, technically awake. 🤣 I do remember hearing them comment on how out of it I was. Since I imagine it would be standard practice to give you something for the procedure, be sure to have a conversation with them well beforehand about the meds you are taking that can compound the dosage of anything else they would typically use. 

When I had my gamma knife procedure, they gave me one blue pill and I missed the whole thing-- although I was, technically awake. 🤣 I do remember hearing them comment on how out of it I was. Since I imagine it would be standard practice to give you something for the procedure, be sure to have a conversation with them well beforehand about the meds you are taking that can compound the dosage of anything else they would typically use. 

What a good grandpa! I love that you'll thank your doc. I try to remember to do this and I think it matters to them.

Very late response from here, but just chipping in, in case it is still helpful. I have the exact same mets. My medical team at a UK research hospital are doing a tonne of research on treatment of oligometastatic cancer, and my protocol has largely followed this (see my signature for a full history). Basically, they believe and are attempting to document that the combination of systemic treatment (in my case immunotherapy) and control mets with RT/SBRT/surgery is the way to go. There are a LOT of evidence that oligometastatic cancer can be treated as curative cases, although some doubt if brain mets are involved. This doesn’t mean we are considered cured, but basically they will knock out any recurrence that comes along in a similar vein to treatment of stage 1/2. It is also becoming increasingly common to use RT alongside immunotherapy and chemo, although it still hasn’t been adopted as a recommendation by NICE (similar to the FDA).

I'm sorry you're dealing with so much right now. Changing any doctor is a huge thing to get used to; to have to leave an oncologist you trust...oof!
I know everybody's medical coverage is different. Good for you for calling about the scans. Now, why not call the new person's office directly for an appointment? There's already enough agonized waiting in our lives; anything I can act on, I do, in person or on the phone whenever possible. I find it helps build a relationship with the people I hope will help me. Politely, of course. And in good cheer. And I will call a couple of times if necessary. One thing I might do is thank the person I've called and say, "I hope you don't mind if I check back to see if things have changed." (Sometimes I thank them for the information and tell them I'll check back. Or, I ask to be put on a cancellation list.) 
I wanted also to comment on your statement that most Stage 4 lung cancer folks get months to live. This is certainly an anxiety-provoking thought! In the LC community, we say that numbers about survival are to be ignored. They are not prescriptive of "how long you get." Instead, the statistics describe what has happened in a previous five year period. The stats are from the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) Program. Their most recent annual report to the nation "includes long-term trends (since 2001) and short-term trends with the most recent five years of data (2014-2018 for incidence and 2015-2019 for mortality)." I hope you will take note of the dates.
I cannot count the number of new FDA-approved lung cancer treatments that have emerged in the five years since the most current annual report, nor the number of new clinical trials that are in progress. 
In addition, it's important to note: these statistics do not reflect what's happening with each specific oncogenic (cancer-causing) mutation: they do not  differentiate between type of lung cancer (adenocarcinoma, squamous cell carcinoma, small cell carcinoma.)  
I have friends with Stage 4 lung cancer who have survived for more than 10 years, with quality of life they feel glad about. Their mantra: keep going until the next treatment option comes out. 
You're obviously strong-- sciatica pain is no joke, and you've been living with it for a while! I hope you will take heart, a little, from what you find here, and gain even a little more strength. 
Keep us posted. 
 
 
 

I'm thrilled for you, Chad! I hope your recovery continues smoothly. Mostly I hope you do some celebrating. You've earned it!

I'm thrilled for you, Chad! I hope your recovery continues smoothly. Mostly I hope you do some celebrating. You've earned it!

I'm sorry you're dealing with so much right now. Changing any doctor is a huge thing to get used to; to have to leave an oncologist you trust...oof!
I know everybody's medical coverage is different. Good for you for calling about the scans. Now, why not call the new person's office directly for an appointment? There's already enough agonized waiting in our lives; anything I can act on, I do, in person or on the phone whenever possible. I find it helps build a relationship with the people I hope will help me. Politely, of course. And in good cheer. And I will call a couple of times if necessary. One thing I might do is thank the person I've called and say, "I hope you don't mind if I check back to see if things have changed." (Sometimes I thank them for the information and tell them I'll check back. Or, I ask to be put on a cancellation list.) 
I wanted also to comment on your statement that most Stage 4 lung cancer folks get months to live. This is certainly an anxiety-provoking thought! In the LC community, we say that numbers about survival are to be ignored. They are not prescriptive of "how long you get." Instead, the statistics describe what has happened in a previous five year period. The stats are from the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) Program. Their most recent annual report to the nation "includes long-term trends (since 2001) and short-term trends with the most recent five years of data (2014-2018 for incidence and 2015-2019 for mortality)." I hope you will take note of the dates.
I cannot count the number of new FDA-approved lung cancer treatments that have emerged in the five years since the most current annual report, nor the number of new clinical trials that are in progress. 
In addition, it's important to note: these statistics do not reflect what's happening with each specific oncogenic (cancer-causing) mutation: they do not  differentiate between type of lung cancer (adenocarcinoma, squamous cell carcinoma, small cell carcinoma.)  
I have friends with Stage 4 lung cancer who have survived for more than 10 years, with quality of life they feel glad about. Their mantra: keep going until the next treatment option comes out. 
You're obviously strong-- sciatica pain is no joke, and you've been living with it for a while! I hope you will take heart, a little, from what you find here, and gain even a little more strength. 
Keep us posted. 
 
 
 

When I had my gamma knife procedure, they gave me one blue pill and I missed the whole thing-- although I was, technically awake. 🤣 I do remember hearing them comment on how out of it I was. Since I imagine it would be standard practice to give you something for the procedure, be sure to have a conversation with them well beforehand about the meds you are taking that can compound the dosage of anything else they would typically use. 

Fingers triple crossed for you!

No worries, @laurie2020. I wanted to be sure the stats weren’t adding to your own worries. Hang in,
Karen