Looking for hope and community

[DrBee]

Hi everyone! I love meeting new people, but really would prefer not to be joining this particular club. :) I'm 45; my husband, Lou, 49, never smoker, was just diagnosed with NSCLC after a biopsy yesterday.  Surgeon suspects stage 3 but we are waiting on final results early next week and scans midweek for staging. I don't have to tell folks here - it's super crappy. We just got married a year ago after dating for 9; he is the best guy ever and all he wants to do is take care of me. His mom passed from liver cancer like 12 years ago (caught late, she went fast, chemo was horrible) so they all have really negative models for how this goes. Lou has known tons of people to die from cancers or treatments for them. 

I am in shock. Last month we were doing 35 mi bike rides and getting ready for running season. He developed this persistent cough about 6 weeks ago with no other symptoms, and finally went to the doc on July 6. They gave him allergy meds but told him to come back the next week if it wasn't better; he did and they took xrays on the 16th, ct scans on the 17th, and we were in a surgeon's office on the 20th scheduling a biopsy.  That happened yesterday.  We had been given hope that it was likely to be lymphoma or even a sarcoid, and actually didn't even expect to get results yesterday, so they rather knocked the wind out from under us. Compounding matters is that the bronchoscopy has made the cough worse, so he's feeling even crappier. And on top of that, we were given this pretty concerning news yesterday, with the (wonderful) thoracic surgeon saying she wanted scans stat, but left to wait through the weekend with little other news, and scans not scheduled until W and Th for the MRI and PET respectively. (I tried to get them moved earlier but to no avail....I am hoping that when we get official biopsy results Monday, we may be able to get the scans expedited a bit.) I am also going to ask if the physician is aware that they are scheduled so far out, given her implied urgency yesterday. It's a tough place to be, waiting through the weekend.  I'm a college professor, so I'm also trying to figure out whether I should take a  leave of absence in the fall; fortunately I only teach two classes, but one of them is scheduled to go abroad over thanksgiving. 

They also sent out bloodwork for the most common genetic mutations, so we hope to get that Mon or at the very latest Tues. We are hopeful on that front because he's half Japanese, so we know that given his age and heritage, a mutation is very probable. I am hanging many of my hopes on that right now, as well as on his overall good health. But he's so tired of coughing, and so tired period, and having GI issues (which may be in part due to stress but are leading to fatigue and weight loss) that I have to say it is very scary and I sometimes think I cannot wait another DAY to see an oncologist. 

At any rate, that's a lot of info. Looking forward to finding hope and community here. Thank you all for your presence!

[Tom Galli]

DrBee,

Welcome here. 

Ok, surprise diagnosis and embroiled in the typing and staging drill. It ends, eventually, with a treatment plan. 

Unfortunately, it’s been my experience that the medical system doesn’t move any faster when a physician orders “stat”. Doctors are well intended but cancer screening equipment is often scheduled intensively. You may want to get on a cancellation call list but again, it is my experience, that few if any miss a cancer diagnostic scan appointment. 

As to your fall leave of absence, I suggest you hold on that decision till a treatment plan is devised. You are right about targeted therapy marker frequency for Asians but that is not universal and only likely in certain forms of non-small cell adenocarcinoma lung cancer. 

Your consulting oncologist ought to be able to prescribe a special kind of cough syrup that reduces coughing. Ask for it. 

I sence your vast concern. You should be. Lung cancer is a dangerous disease and it is persistent. Few of us are one treatment and done. Prepare for a the disease’s persistence. That said, in February, I will celebrate my 15 year anniversary since diagnosis. In total, I had 8 surgeries, 18 infusions of conventional chemotherapy, 18 weeks of failed targeted therapy, and precision radiation. The last treatment achieved my current no evidence of disease — NED. We don’t use cure in our community because of persistence but if I can live, so can your husband. 

Stay the course.

Tom

[Donna G]

Hello DrBee.  I was diagnosed at 50 with Stage 3B lung cancer. I had months of chemo , radiation, then finally was able to have my right upper lobe removed.  After the plan had been more chemo for weeks.  I am going to celebrate my 71st birthday on August the 4th.  I pray that treatment starts soon with a great plan and that he responds to it with great results.

Keep us posted on how it is going.

Donna G

[BridgetO]

Hi Dr Bee and welcome to the club nobody wants to join. I can understand that you're in shock and probably disoriented, too. It's  like being unexpectedly in a new country where you don't speak the language and don''t have a map. Eventually it will start making more sense, whether or not it gets any easier.  These forums are a good place to get information and support. Hang in there!

Bridget O

[LexieCat]

Hi, DrBee, and welcome.  You're getting some great advice up there.  You certainly don't want to unnecessarily postpone testing and treatment, but actually your wait times are shorter than many I've heard of.  I think it's harder on the patient's (and family's) patience than it is likely to make any difference in the outcome.  Waiting--for tests, treatments, more tests, results from tests--is one of the hardest things about coping with this disease.

Has the doctor told you what kind of NSCLC they found from the biopsy?  There are several different types--adenocarcinoma, squamous cell, etc.

As Bridget mentioned, as you get more information the path forward will become a bit clearer.  For the doctor, so s/he can plan treatments, and for you to know what to expect in terms of type of treatment, duration, possible side effects, etc.  I agree with Tom that it's best to kind of keep your plans for the fall as open as you can, at least until you find out more about how your husband responds to treatment.  You might want to give your department head a heads-up, as long as you think they would be supportive.

As scary as all of this is, we have a lot of long-term survivors here.  Try to keep breathing--both of you.  It's really important for caregivers/partners to remember to take care of their own well-being--it's easy to run yourself ragged, and given that this can be a long haul you don't want to burn yourself out.  

Glad you found us--this is a great group of folks and there is a lot of collective wisdom, experience, and support to be had.

[DrBee]

1 hour ago, LexieCat said:

Hi, DrBee, and welcome.  You're getting some great advice up there.  You certainly don't want to unnecessarily postpone testing and treatment, but actually your wait times are shorter than many I've heard of.  I think it's harder on the patient's (and family's) patience than it is likely to make any difference in the outcome.  Waiting--for tests, treatments, more tests, results from tests--is one of the hardest things about coping with this disease.

Has the doctor told you what kind of NSCLC they found from the biopsy?  There are several different types--adenocarcinoma, squamous cell, etc.

As Bridget mentioned, as you get more information the path forward will become a bit clearer.  For the doctor, so s/he can plan treatments, and for you to know what to expect in terms of type of treatment, duration, possible side effects, etc.  I agree with Tom that it's best to kind of keep your plans for the fall as open as you can, at least until you find out more about how your husband responds to treatment.  You might want to give your department head a heads-up, as long as you think they would be supportive.

As scary as all of this is, we have a lot of long-term survivors here.  Try to keep breathing--both of you.  It's really important for caregivers/partners to remember to take care of their own well-being--it's easy to run yourself ragged, and given that this can be a long haul you don't want to burn yourself out.  

Glad you found us--this is a great group of folks and there is a lot of collective wisdom, experience, and support to be had.

Hi LexieCat! Thank you so much for your kind and thorough reply.

No, we don't know anything further than NSCLC. The biopsy was late Thursday, so prob not a surprise that we didn't hear yesterday. As you note, makes for a long weekend of waiting/worrying/hoping/feeling like the world has ended etc. Sounds like we should get final biopsy results and results on blood tests for the 6 most common gene mutations on Mon or Tues latest. 

Yes, reading the stories of long term survivors (like Tom's and Donna's)  last night helped me feel the calmest I have felt since we got this news Thursday afternoon.  I am also trying to not get ahead of myself because we don't know yet if what we are looking at is going to follow one of these more treatable trajectories. But finding this community makes me feel like I'm not alone in the wait, and there is a community of support going forward - to which we will hopefully be contributing our own story of hope soon. 

In terms of self-care, that is hard - but I am blessed in that my hubby is a consummate caretaker (and worrier, perhaps not so great), so he in fact ordered me out of the house to run yesterday because I was getting "too antsy."

LexieCat, thank you so much for your reply! ❤️

[DrBee]

11 hours ago, Tom Galli said:

DrBee,

Welcome here. 

Ok, surprise diagnosis and embroiled in the typing and staging drill. It ends, eventually, with a treatment plan. 

Unfortunately, it’s been my experience that the medical system doesn’t move any faster when a physician orders “stat”. Doctors are well intended but cancer screening equipment is often scheduled intensively. You may want to get on a cancellation call list but again, it is my experience, that few if any miss a cancer diagnostic scan appointment. 

As to your fall leave of absence, I suggest you hold on that decision till a treatment plan is devised. You are right about targeted therapy marker frequency for Asians but that is not universal and only likely in certain forms of non-small cell adenocarcinoma lung cancer. 

Your consulting oncologist ought to be able to prescribe a special kind of cough syrup that reduces coughing. Ask for it. 

I sence your vast concern. You should be. Lung cancer is a dangerous disease and it is persistent. Few of us are one treatment and done. Prepare for a the disease’s persistence. That said, in February, I will celebrate my 15 year anniversary since diagnosis. In total, I had 8 surgeries, 18 infusions of conventional chemotherapy, 18 weeks of failed targeted therapy, and precision radiation. The last treatment achieved my current no evidence of disease — NED. We don’t use cure in our community because of persistence but if I can live, so can your husband. 

Stay the course.

Tom

Hi Tom! As  I was reading through multiple threads and forums last night, I was so gratified at your responses to each person. Validating where they were ("yep, that's a thing, others have been there"), offering a few words about what might be next, asking folks that might be able to speak to questions (even implicit ones) to chime in, and fundamentally reminding folks that this big scary thing is a lot less scary when we have road maps and travelling companions. 

I appreciate your input that this kind of wait is frustrating but normal. 

Thank you for speaking so directly to my implicit question about fall planning.  I have informed my department (we're small and close knit, and I'm tenured), and everyone is v supportive. My situation is complicated a bit by the fact that I travel with students over Thanksgiving each year, and am in the process of reserving hotels and making deposits on flights and the like right now. Do you think given where we are in the diagnosis process, we're likely to have a better sense of where we're going in a week or two? If so, I think I can get most of my vendors to give me until then to give them a firm commitment - and it would still give students several weeks to change plans if we end up dropping the travel component of the course and they no longer want to take it. Maybe it's silly to even think about travel right now, but if we're on a pretty stable course by then, that kind of work with students is definitely good for my soul. 

Cough: we've got the stuff with codeine and guaifenesin, but makes him super sleepy, so for bedtime only. He's still going to work each day and that's a 27 mi drive, so sleepy is no good.  

I'd be interested to hear the extent to which folks kept working through their treatment. Or perhaps these are questions that aren't really worth asking until we have more specifics on type, stage, grade, etc. 

Thank you for the hope tempered with realism. I can take this being a thing we just treat for the rest of his life...it will be well worth it if "the rest of his life" consists of a reasonable amount and quality!  

Warmly, 

Bethany

 

ps. I love your parting "stay the course."

[DrBee]

7 hours ago, Donna G said:

Hello DrBee.  I was diagnosed at 50 with Stage 3B lung cancer. I had months of chemo , radiation, then finally was able to have my right upper lobe removed.  After the plan had been more chemo for weeks.  I am going to celebrate my 71st birthday on August the 4th.  I pray that treatment starts soon with a great plan and that he responds to it with great results.

Keep us posted on how it is going.

Donna G

Tough Leo Lady! Thank you Donna. I read this when I woke at zero-dark-thirty and it lifted my spirits. Just having hope is making me feel lighter, and like I can keep breathing until we have more info on Monday/Tuesday. And happy birthday! My dad's is the day before and I am the 18th. 

[DrBee]

4 hours ago, BridgetO said:

Hi Dr Bee and welcome to the club nobody wants to join. I can understand that you're in shock and probably disoriented, too. It's  like being unexpectedly in a new country where you don't speak the language and don''t have a map. Eventually it will start making more sense, whether or not it gets any easier.  These forums are a good place to get information and support. Hang in there!

Bridget O

Thank you Bridget. I cannot tell you how grateful I am to have found you all. What a wealth of information and a generosity of spirit. 

[DrBee]

Oh, this is probably appropos of nothing. But we are being treated at Northwestern.

[LexieCat]

I'd say in a week or two you might know what the initial treatment plan is; unfortunately, plans with this thing are never carved in stone.  Side effects, complications, the need to take a different approach after you've set out in one direction, can make it all somewhat unpredictable.  It might very well be that his treatment is not that complicated, and the side effects manageable.  Some people do find it possible to work through treatment, at least most of the time.  For others, it's more challenging--and you just won't know for sure until you're there.  Is your trip only for the Thanksgiving weekend (four days)?  Do you have any family nearby (or even close friends) who could maybe pitch in, in a pinch, if something were to come up while you were away?  A lot depends on your/his comfort level with his managing things solo.  

I was extremely lucky--my cancer was found through screening and the only treatment I needed was surgery.  I missed only a couple weeks of work (desk job).  I live alone and would have managed my surgery/recovery just fine on my own, but I had a small complication that landed me back in the hospital with a chest tube for a few days after my initial discharge, and when my cousin offered to come out and give me a hand after that second round of hospitalization, I took her up on it.  But if it weren't for her, I had neighbors who I could call on in an emergency, so I would have managed.

BTW, I share a birthday with your dad (and member Steff's mom).  Leos ROCK.

[Tom Galli]

Bethany,

Northwestern has a great reputation. Lung cancer is a strange disease treatment-wise. Here are my thoughts on treatment. If surgery is in the cards, pick the best surgeon and use his or her hospital. If conventional (standard of care, radiation and chemotherapy) treatment is suggested, give consideration to a small conviently  located clinic. If sophisticated chemotherapy (targeted therapy or immunotherapy) is the treatment, select a well known cancer medical center. If precision radiation (SBRT, IMRT and etc.) is chosen, go anywhere it is offered. 

My GP picked my medical oncologist. He made a great choice and his knowledge, skills and abilities likely saved my life. Looking back, a medical oncologist is the quarterback of the team and needs to take a broad view of treatments and methods. You will have many sensitive and important discussions with this doctor. His or her listening skills and communications skills are essential. Also important is the radiology team that supports the medical oncologist. I’ve never had a real “clean scan”. Something always shows up but in my years of treatment, the radiologists that support my oncologist wade through past scan results and dismiss “alarming finds”. So once you pick your medical oncologist, you likely set your radiologist team. You’ll never interact directly but the relationship is important. I was once hospitalized for diverticulitis at a local hospital, and the hospital doctor came into give bad news about discovered liver nodules and tumors. It was tense until my medical oncologist waded in. 

So, let’s breakdown the should I travel or should I not. My overarching thought is one undergoes treatment to achieve extended life, so make that extension as enjoyable as possible for both you and your husband.  Keep close the joy of practicing your profession. 

That said, when will your husband need you? Let’s assume you obtain a treatment plan by end of month August. Consider surgery and post surgical chemotherapy. Surgery might be complete by end of month September and after 30 days of recovery may come 3 to 6 infusions of adjuvant chemo. These are understrength doses done weekly. But, these are easy treatments. Few experience side-effects. So he would start chemo in October and complete, worst case, the second week of November. Thanksgiving travel is on. 

Lets assume surgery is not possible. First line (first treatment) national standard of care is conventional radiation concurrent with adjuvant chemo. Again, adjuvant chemo is a weak concentration and few esperience side effects. Normal is 30 days of radiation, given M-F, and weekly adjuvant chemotherapy. Radiation is the inverse of March. It comes in like a lamb and leaves like a lion. The last two weeks of this treatment will be very challenging. Radiation saps energy and I could hardly make it from car to clinic the last two weeks. Again, assume a September treatment start. Six weeks puts treatment finished by mid October. He will need you during this treatment and unless he is Superman, he won’t be able to work, at least the last 3 weeks of treatment. Again, trip on. 

Full strength chemotherapy alone, again assuming a September start and conventional chemo. Infusions are normally spaced at 3 week intervals and 6 to 9 infusions are given. He will likely have 3 very bad side effect days in each 3 week cycle. I needed help because joint pain was my principal effect. That would be 18 to 27 weeks of treatment and your Thanksgiving trip is likely not possible. 

If he is a targeted therapy or immunotherapy candidate, treatment means (could be a daily pill), lengths, and side effects are too variable to predict. Many of these treatments are given along with conventional chemotherapy so, likely trip off. Moreover, some side effects from these treatments could be troubling to the point of requiring assistance. 

I had pre-surgical radiation with adjuvant Taxol and Carboplatin chemotherapy as my first treatment. I did not work during the last three weeks of this treatment and I really leaned on my wife for support, literally!

After a right pneumectomy, I was discharged after 5 days in the hospital. I was forecasted to have a 3 week disability leave and would have been back to work but for onset of an infection that started surgical mayhem lasting for about a year. 

When tumors were found in my remaining lung, I received back-to-back courses of full strength chemo (Taxol and Carboplatin). I had my 3 very bad side effect days, 3 days after each infusion. Side effect intensity and onset repeats. I chose Wednesday as my infusion day to allow Saturday and Sunday to recover from side-effects. I claimed some Mondays as days off but I worked during this treatment. 

My precision radiation (SBRT) was a piece of cake. Three days, 15 minutes a day and tumors fried. I worked those days because my treatment was at 6 a.m.

There are a lot of unknown unknowns at this point so please consider the aforementioned as rough order of magnitude treatment possibilities and timing.

Stay the course. 

Tom

 

[DrBee]

1 hour ago, LexieCat said:

I'd say in a week or two you might know what the initial treatment plan is; unfortunately, plans with this thing are never carved in stone.  Side effects, complications, the need to take a different approach after you've set out in one direction, can make it all somewhat unpredictable.  It might very well be that his treatment is not that complicated, and the side effects manageable.  Some people do find it possible to work through treatment, at least most of the time.  For others, it's more challenging--and you just won't know for sure until you're there.  Is your trip only for the Thanksgiving weekend (four days)?  Do you have any family nearby (or even close friends) who could maybe pitch in, in a pinch, if something were to come up while you were away?  A lot depends on your/his comfort level with his managing things solo.  

I was extremely lucky--my cancer was found through screening and the only treatment I needed was surgery.  I missed only a couple weeks of work (desk job).  I live alone and would have managed my surgery/recovery just fine on my own, but I had a small complication that landed me back in the hospital with a chest tube for a few days after my initial discharge, and when my cousin offered to come out and give me a hand after that second round of hospitalization, I took her up on it.  But if it weren't for her, I had neighbors who I could call on in an emergency, so I would have managed.

BTW, I share a birthday with your dad (and member Steff's mom).  Leos ROCK.

Apparently I have liked too many posts today, LexieCat, and the forum would not allow me to like this one officially! Wow, you and Tom are wonders of speediness in your replies.  It is an 8-day trip, but sister and dad are both local and enthusiastic about stepping in if anything arises. (Sister actually wants us to move in with her if he has to go through chemo, because of my work schedule, but right now we're not anticipating that being necessary.... they just had a really bad chemo experience with another family member.) The surgeon said that they would not be looking at surgery at this point(she predicted stage 3) but rather chemo, radiation, targeted therapies as appropriate given final biopsy, genetic marker, scans etc. 

Thank you for the reminder that even once we have a plan we will need to remain flexible because it could change. I'm a total planner, so this is really good to know in advance. As long as I'm planning to be flexible you know?

You are really like a walking advert for screening! It would have never crossed our minds because of the whole non-smoker status. 

Leos are awesome-esp. Leo ladies!

Thank you for sharing your wisdom and hope, LexieCat! ❤️

[DrBee]

56 minutes ago, Tom Galli said:

Bethany,

Northwestern has a great reputation. Lung cancer is a strange disease treatment-wise. Here are my thoughts on treatment. If surgery is in the cards, pick the best surgeon and use his or her hospital. If conventional (standard of care, radiation and chemotherapy) treatment is suggested, give consideration to a small continently located clinic. If sophisticated chemotherapy (targeted therapy or immunotherapy) is the treatment, select a well known cancer medical center. If precision radiation (SBRT, IMRT and etc.) is chosen, go anywhere it is offered. 

My GP picked my medical oncologist. He made a great choice and his knowledge, skills and abilities likely saved my life. Looking back, a medical oncologist is the quarterback of the team and needs to take a broad view of treatments and methods. You will have many sensitive and important discussions with this doctor. His or her listening skills and communications skills are essential. Also important is the radiology team that supports the medical oncologist. I’ve never had a real “clean scan”. Something always shows up but in my years of treatment, the radiologists that support my oncologist wade through past scan results and dismiss “alarming finds”. So once you pick your medical oncologist, you likely set your radiologist team. You’ll never interact directly but the relationship is important. I was once hospitalized for diverticulitis at a local hospital, and the hospital doctor came into give bad news about discovered liver nodules and tumors. It was tense until my medical oncologist waded in. 

So, let’s breakdown the should I travel or should I not. My overarching thought is one undergoes treatment to achieve extended life, so make that extension as enjoyable as possible for both you and your husband.  Keep close the joy of practicing your profession. 

That said, when will your husband need you? Let’s assume you obtain a treatment plan by end of month August. Consider surgery and post surgical chemotherapy. Surgery might be complete by end of month September and after 30 days of recovery may come 3 to 6 infusions of adjuvant chemo. These are understrength doses done weekly. But, these are easy treatments. Few experience side-effects. So he would start chemo in October and complete, worst case, the second week of November. Thanksgiving travel is on. 

Lets assume surgery is not possible. First line (first treatment) national standard of care is conventional radiation concurrent with adjuvant chemo. Again, adjuvant chemo is a weak concentration and few esperience side effects. Normal is 30 days of radiation, given M-F, and weekly adjuvant chemotherapy. Radiation is the inverse of March. It comes in like a lamb and leaves like a lion. The last two weeks of this treatment will be very challenging. Radiation saps energy and I could hardly make it from car to clinic the last two weeks. Again, assume a September treatment start. Six weeks puts treatment finished by mid October. He will need you during this treatment and unless he is Superman, he won’t be able to work, at least the last 3 weeks of treatment. Again, trip on. 

Full strength chemotherapy alone, again assuming a September start and conventional chemo. Infusions are normally spaced at 3 week intervals and 6 to 9 infusions are given. He will likely have 3 very bad side effect days in each 3 week cycle. I needed help because joint pain was my principal effect. That would be 18 to 27 weeks of treatment and your Thanksgiving trip is likely not possible. 

If he is a targeted therapy or immunotherapy candidate, treatment means (could be a daily pill), lengths, and side effects are too variable to predict. Many of these treatments are given along with conventional chemotherapy so, likely trip off. Moreover, some side effects from these treatments could be troubling to the point of requiring assistance. 

I had pre-surgical radiation with adjuvant Taxol and Carboplatin chemotherapy as my first treatment. I did not work during the last three weeks of this treatment and I really leaned on my wife for support, literally!

After a right pneumectomy, I was discharged after 5 days in the hospital. I was forecasted to have a 3 week disability leave and would have been back to work but for onset of an infection that started surgical mayhem lasting for about a year. 

When tumors were found in my remaining lung, I received back-to-back courses of full strength chemo (Taxol and Carboplatin). I had my 3 very bad side effect days, 3 days after each infusion. Side effect intensity and onset repeats. I chose Wednesday as my infusion day to allow Saturday and Sunday to recover from side-effects. I claimed some Mondays as days off but I worked during this treatment. 

My precision radiation (SBRT) was a piece of cake. Three days, 15 minutes a day and tumors fried. I worked those days because my treatment was at 6 a.m.

There are a lot of unknown unknowns at this point so please consider the aforementioned as rough order of magnitude treatment possibilities and timing.

Stay the course. 

Tom

 

Hi Tom,

You're wonderful. Truly such a wealth of knowledge, even before I really know what knowledge I need. ❤️

We worked hard to get him into Northwestern because they did a wonderful job with my best friend's breast cancer a couple of years ago and they are by far the best cancer center in the area. We don't think that surgery is in the cards right now, and really it only takes about a half an hour for us to get to Northwestern, even in the worst traffic, so I'm not sure we're going to get anything a lot more convenient.

 I really appreciate that you laid out all of these possibilities in terms of treatment... Truly more than you needed to do, given that we have no idea which of these we'll be headed for right now. Since it could be any of these things, other than surgery, it seems, at this point, I'll keep this all on hand so that I can make a good decision about travel given what the oncologist's plan looks like. As you and LexieCat both point out, of course the treatment plan could change, and if I'm committed to doing this travel component I probably won't be able to call it off in Sept once the semester gets rolling.  So I'll  make the best decision that I canAfter we get more info in the next several days. I know hubby wants me to do the trip, but I'm having a bit of guilt because I wasn't here during the first couple of doctors appointments about this... But that was before we realized how serious it was.

 

   So I think the travel decision needs to wait til we know more. But  taking into account what you and LexieCat have said, I am leaning towards not taking a leave of absence. Especially because my schedule is pretty flexible so I can probably just be on campus a couple of days a week and one of those probably only a partial day... And we have family backup. 

 Tom, the more I read about all the treatments that you've been through, and the mix of good humor and realism that you bring to this journey, more I'm convinced that it is YOU that is Superman!

I suspect I'm going to have lots more questions after we have type/stage/grade sorted, but in the meantime, I can't even tell you how much these potential road maps, and  sense of community, are doing for my sanity. Thank you all!!!!

[LexieCat]

Unfortunately, smoking history is generally one of the main criteria for screening eligibility.  Unless you are at elevated risk for some reason (usually smoking or working with carcinogens or something), the screenings are more likely to turn up false positives than actually finding early cancer.  Not much comfort if you're one of the lucky non-smokers who hits the jackpot, but there actually is a reason for it.

Yeah, keeping a flexible mindset really is one of the keys, I think, to not making yourself crazy on this wild ride.  And that can be a challenge for a lot of us.  I'm a planner, too, and I hate not having things be definite.

Oh, and as you're admiring Tom's speediness, bear in mind that he is on a much-anticipated Baltic cruise right now--he warned us the wifi could be spotty, but he'll be back soon--he's a STOREHOUSE of knowledge about this stuff.

[DrBee]

5 minutes ago, LexieCat said:

Unfortunately, smoking history is generally one of the main criteria for screening eligibility.  Unless you are at elevated risk for some reason (usually smoking or working with carcinogens or something), the screenings are more likely to turn up false positives than actually finding early cancer.  Not much comfort if you're one of the lucky non-smokers who hits the jackpot, but there actually is a reason for it.

Yeah, keeping a flexible mindset really is one of the keys, I think, to not making yourself crazy on this wild ride.  And that can be a challenge for a lot of us.  I'm a planner, too, and I hate not having things be definite.

Oh, and as you're admiring Tom's speediness, bear in mind that he is on a much-anticipated Baltic cruise right now--he warned us the wifi could be spotty, but he'll be back soon--he's a STOREHOUSE of knowledge about this stuff.

Omg....must scold Tom about being too generous with his vacation time. Hilarious, and wonderful. (And darn it, still can't submit a response emoji!)

[Tom Galli]

Bethany and Teri,

WIFI becomes easy in the late evening!  My response difficulty is typing on this impossibly small iPhone.

Bethany — good humor...that’s a first!  Civil Engineer retired soldiers are generally excluded from that trait. 

OBTW Teri, Tallinn Estonia is a fantastic destination. They had two daytime concerts by groups you would love to welcome us! Much much better than Stockholm or St. Petersburg. Today Riga!

Stay the course. 

Tom

[LexieCat]

Well, I give you a ton of credit for even attempting to type responses of that length on your phone!  I think the gens after us are evolving better thumbs--my kids make fun of the way I type with my forefinger on the iPhone.  I am super-fast on a regular-sized keyboard but limit my typing on iPhones to a sentence or two max, for the most part.

Sounds fantastic--can't wait to hear more details (and see some pics!).  I'm so glad you were able to push through and go!  Hope you're feeling good....

[BridgetO]

Hey Dr Bee! I want to chime in about getting assistance from family and friends, and about chemo. It's great that you have a father and sister who can pitch in to help if need be. I encourage you to accept their offers when you need them. Neither I nor my wife have local relataves.

My lung cancer was stage 1 and I didn't need any treatment beyond surgery, which was VATS and fairly easy. Prior to lung cancer, I had a stage 3 gynecological cancer and the treatment was not easy at all. I had a major surgery with a week in the hospital and after that my sister-in-law, who lives at some distance came here for more than a week to help take care of me. This was wonderful and meant that my spouse didn't have to miss too much work. After that I had 6 weeks of concurrent chemo and radiation (daily treatments)  and 3 rounds of additional chemo. My wife went with me for the first treatment on the concurrent and on the additional, to get information and to see what I would need. Even though I has some issues (mostly gastrointestinal, low white blood cells and anemia), I was able to drive myself to all my radiation and chemo appointments and to take care of myself. It was nice to have help  with some things when I was feeling weak and I needed to go to the ER  twice for fever (low neutrophils) so needed help with that. But generally, I didn't need someone around all the time.  Everybody has diffeerent reactions to treatment and some are a lot more debilitated, but I think my experience is fairly common.  I hope your husband's will be as easy.

So  I think my advice is that whether you're there or not, to have somebody lined up to help, ask for what you need, including somebody to check in if you're traveling,  but don't assume your husband won't be able to care for himself. Also, if  people want to help, suggest things they can do, such as a ride to an appointment,  bringing dinner or, as in my case, installing a grab bar in my shower-- very useful post surgery.

BridgetO

[Susan Cornett]

Hi, DrBee and welcome. I see that you've already met some of our cast of characters on this forum.  We've all been though some part of the process that you and your husband are about to take on.  I'm stage IV adenocarcinoma but I have no mutations so I wasn't eligible for any of the immunotherapy.  I'm almost 2 1/2 years out from diagnosis but plan to follow Donna's and Tom's footsteps for living a long life after diagnosis.  I had surgery (and not the VATS) followed by chemotherapy.  I had a recurrence last spring and had more chemo and radiation.  I worked full time through most of my treatment.  I generally took chemo days off and was able to work from home during radiation.  We all react differently to the treatments so what bothers one person may not bother another.  Side effects can and do sideline people.  

I also understand about trying to make decisions about future plans.  We struggled with big financial decisions - should we buy the car, should we renovate the house, should I continue to fund my retirement? And the answer to all of those, for us, was yes.  For me, planning ahead is my way of looking beyond the cancer.  Can you purchase a travel insurance policy for yourself, or is it available through your travel suppliers? That is something I recommend (and not just because I spend my days writing travel insurance policies).    Keep us posted.

[DrBee]

21 hours ago, Tom Galli said:

Bethany and Teri,

WIFI becomes easy in the late evening!  My response difficulty is typing on this impossibly small iPhone.

Bethany — good humor...that’s a first!  Civil Engineer retired soldiers are generally excluded from that trait. 

OBTW Teri, Tallinn Estonia is a fantastic destination. They had two daytime concerts by groups you would love to welcome us! Much much better than Stockholm or St. Petersburg. Today Riga!

Stay the course. 

Tom

Tom. Holy crap! Are you seriously typing this all on your phone? Ok, confirmed. You ARE superman. Also, I'm an international relations scholar, so I am super intrigued by your trip. Sounds AMAZING! 

Also, my hubs is an electrical engineer (though not retired military)and I can vouch for the fact that his humour - and sense of humour - are both highly suspect.

Hope Riga is beautiful! 

With gratitude, 

Bethany

[DrBee]

16 hours ago, LexieCat said:

Well, I give you a ton of credit for even attempting to type responses of that length on your phone!  I think the gens after us are evolving better thumbs--my kids make fun of the way I type with my forefinger on the iPhone.  I am super-fast on a regular-sized keyboard but limit my typing on iPhones to a sentence or two max, for the most part.

Sounds fantastic--can't wait to hear more details (and see some pics!).  I'm so glad you were able to push through and go!  Hope you're feeling good....

PICS NEEDED! 

[DrBee]

9 hours ago, BridgetO said:

Hey Dr Bee! I want to chime in about getting assistance from family and friends, and about chemo. It's great that you have a father and sister who can pitch in to help if need be. I encourage you to accept their offers when you need them. Neither I nor my wife have local relataves.

My lung cancer was stage 1 and I didn't need any treatment beyond surgery, which was VATS and fairly easy. Prior to lung cancer, I had a stage 3 gynecological cancer and the treatment was not easy at all. I had a major surgery with a week in the hospital and after that my sister-in-law, who lives at some distance came here for more than a week to help take care of me. This was wonderful and meant that my spouse didn't have to miss too much work. After that I had 6 weeks of concurrent chemo and radiation (daily treatments)  and 3 rounds of additional chemo. My wife went with me for the first treatment on the concurrent and on the additional, to get information and to see what I would need. Even though I has some issues (mostly gastrointestinal, low white blood cells and anemia), I was able to drive myself to all my radiation and chemo appointments and to take care of myself. It was nice to have help  with some things when I was feeling weak and I needed to go to the ER  twice for fever (low neutrophils) so needed help with that. But generally, I didn't need someone around all the time.  Everybody has diffeerent reactions to treatment and some are a lot more debilitated, but I think my experience is fairly common.  I hope your husband's will be as easy.

So  I think my advice is that whether you're there or not, to have somebody lined up to help, ask for what you need, including somebody to check in if you're traveling,  but don't assume your husband won't be able to care for himself. Also, if  people want to help, suggest things they can do, such as a ride to an appointment,  bringing dinner or, as in my case, installing a grab bar in my shower-- very useful post surgery.

BridgetO

Hi BridgetO! Thanks, I really needed to hear that. I am autonomous to a fault and TERRIBLE about taking help, even when I need it. And my darling hubby is worse. (We are both much more comfortable giving than receiving care.) 

I am so glad to hear that folks who are Stage 1 can do so well with just surgery. Surgeon has already confirmed we are definitely not in that boat -- at least not at this point.  Your experience with gynecological cancer sounds dreadful and you are clearly an amazingly strong person. Congratulations on your successful survival of both! 

Thank you so much for sharing your experiences and how much you were able to do. I know our situation is unlikely to perfectly mirror anyone else's, but just having a sense of the range of things through which folks have gone is invaluable.

I really like your idea of having specific things that folks can volunteer to do, and I think we might set up a care coordination calendar once our plan becomes clearer. I'm hoping that sis and I can coordinate schedules; I think we work on alternate days so  that is hugely fortunate. It's funny, we are always talking about how tiny our fam is (I'm an only, and my mum and dad are in CA), but having even a couple of folks that can pitch in is AMAZING. When my mom was in the last couple of years of life with Alzheimers, even though she was in assisted living so not actually living with me, there was no one with whom to share decision making or even really talk to about things, so even having a couple of folks on "the bench" is wonderful!

Thank you for sharing your experience, advice, and wisdom!

Bethany

[DrBee]

I 

8 hours ago, Susan Cornett said:

Hi, DrBee and welcome. I see that you've already met some of our cast of characters on this forum.  We've all been though some part of the process that you and your husband are about to take on.  I'm stage IV adenocarcinoma but I have no mutations so I wasn't eligible for any of the immunotherapy.  I'm almost 2 1/2 years out from diagnosis but plan to follow Donna's and Tom's footsteps for living a long life after diagnosis.  I had surgery (and not the VATS) followed by chemotherapy.  I had a recurrence last spring and had more chemo and radiation.  I worked full time through most of my treatment.  I generally took chemo days off and was able to work from home during radiation.  We all react differently to the treatments so what bothers one person may not bother another.  Side effects can and do sideline people.  

I also understand about trying to make decisions about future plans.  We struggled with big financial decisions - should we buy the car, should we renovate the house, should I continue to fund my retirement? And the answer to all of those, for us, was yes.  For me, planning ahead is my way of looking beyond the cancer.  Can you purchase a travel insurance policy for yourself, or is it available through your travel suppliers? That is something I recommend (and not just because I spend my days writing travel insurance policies).    Keep us posted.

Hi Susan! I already just love this cast of characters! Thank you from the bottom of my heart for the kind welcome and for sharing your experience and wisdom. Were you stage 4 when diagnosed? I am pretty blown away by the number of folks diagnosed at a high stage on these forums thus far, who are modeling successful survivorship for those of us earlier in the process. Reading Tom's and Donna's stories allowed me to sleep decently for the first time since we got our preliminary diagnosis Thursday. (Now, if only I can sleep through hubby's frequent and very physical nighttime coughing!  )  Hubby does not have a job that would allow him to work from home, but he has a boatload of sick time, so he hopes to use that in dribs and drabs as neccesary for the bad chemo/radiation days. (Today was actually the first day he has missed since all of this started  - moving around just makes the cough too bad.)

I totally agree with you about planning ahead being important in keeping motivated to look beyond the cancer. Darling hubs tends to be a bit of a pessimist, so I am full speed ahead on looking toward the future  to keep his head up as much as possible. (We have been doing IVF and have banked embryos, and I'm not giving up on parenthood yet - actually might want to start on that process a little sooner than I was thinking.) 

Travel insurance! I am a true believer -- especially since I was supposed to be in London right now and had non-refundable tix....that I for once did NOT have travel insurance on. It'd be more complicated with the Nov trip because it's leading a course, so in the next couple weeks I'll have to decide definitely in or definitely out. But we should have substantially more info by then. 

Susan, thank you so much for taking the time to share and support. With each of these messages, I feel a little less afraid and a LOT more able to be there for my sweetie. 

With gratitude, 

Bethany

[Susan Cornett]

Bethany,

My journey for staging is a little wonky.  Trip to ER showed mass in my lung.  I had a biopsy via bronchoscopy that was negative for cancer, but pulmonologist said the mass had to be removed.  I had surgery, cancer was found, and I was initially diagnosed as stage III.  Before treatment was started, Super Doc ordered scans to look for other spots.  A spot was found on my thyroid and, after I finished chemo, it was biopsied and then I had a thyroidectomy.  Turns out my lung cancer had metasticized to my thyroid AND I had a separate thyroid cancer nodule.  After all of this, Super Doc revised my initial diagnosis to stage IV.  

It's a lot to take in quickly.  If no one has already told you, don't google the statistics.  They are outdated and do not take your husband's age and overall health into consideration.  They do not reflect new treatments over the last 2-3 years.  My other tip is that you purchase a notebook.  Write down questions and concerns and take the notebook with you to appointments.  For the first year, I pulled out that notebook every time I saw the doc.  Seems like all of my questions came to mind after I had treatment or saw him.

There are so many issues with lung cancer, but the biggest is the late diagnosis for so many of us.  There are a lack of symptoms, or in my case, symptoms which look like something else such as asthma.  Lung cancer bites!