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Hi everyone,

I never thought I would ever "need" to register on such a site but here I am.

A tumor was found in my dad's lung and we're now waiting to have a biopsy. Based on the initial CT report things are not looking good, the main tumor is almost 5cm and there's strong indication of lymphangitic carcinomatosis (amongst many other findings..). Heavy smoker and with a family history..

Before this, I didn't really know much about cancer. I didn't even believe that there is no cure because I thought it is impossible for humanity and all the brilliant minds to not have solved this in decades. I was convinced that it's the pharmaceutical companies hiding the truth. In the last two weeks I have read a ton of information, because I needed to understand as much as possible what it is all about in order to try and seek for the best possible solution. I learned a lot during the last few days. From time to time I start the blaming game, that if I had known all this info earlier in life I could have suggested a checkup many years ago. Anyway.

Currently, I don't even know where to focus. My mood has been really bad. First of all I am still in stock of the diagnosis. I am not optimistic because of the history in family and because I know that the 17% survival rate isn't something made up. It's a fact. It is also a fact that where I live there's nothing else available other than surgery,chemo,radiation as a treatment. No Immunotherapy, no Proton or any other treatment which I've read have good results. Then it's the financial issue not allowing us to travel elsewhere to get something better.

Another thing is that I don't know how to handle this time with him. I feel the need to be closer and spend time together because I don't know if he's gonna be here in 3,6,9, 12 months etc. So many thoughts are breaking my heart related to this. Shall I be positive? (if that is an option..) Shall I be optimistic? Shall I be raw and truthful with my thoughts? Shall I try to support him in anyway. Are there things I should/shouldn't say? Should the kids be around him all the time or will this make him feel bad? (for example the thoughts of him not being around when they grow up etc) I will of course seek professional help for this part but I would like to know from people here what they think.

Regarding diagnosis, to my understanding, the most important factor that determines how bad a case is, is whether the cancer has metastasized. Is that correct? As long as the cancer is no longer in a single organ, then no matter it's type, it's bad. Whereas if its localized, even if aggressive, it could potentially be treated.

Also I read quite a few posts here mentioning "biomarker testing". Is this something that they will do in biopsy as part of the process or is this something additional that I must ask to be done?

Thanks for your time.

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Hello and Welcome.   Unfortunately your post is all too familiar, no one wants to join this club.  Everyone is reeling when the words lung cancer are spoken.  
 

You’ve done some homework which is good. The “survival” statistics from Dr Google are way off. These days lung cancer isn’t necessarily a terminal diagnosis.  Smoking is a risk factor for lung cancer not a cause.  Anyone with lungs can get lung cancer.   Most often it is diagnosed in late stages as there are no symptoms.  
 

It’s hard to wade through all the emotion while quickly coming up to speed with what seems to be like learning a foreign language.   This is a process, one step one procedure at a time.  
 

For the practical getting started, yes biomarker testing is the next step, as long as it is a comprehensive panel that tests for all genetic mutations not just a few of them.   Be sure a brain MRI is included as part of the evaluation too.  
 

Regarding access to care, there are resources available.  Many of the National Cancer Institute designated centers will do a second opinion via telehealth.  You might have to advocate for this (which is a polite way of saying really push for it).  
 

I’ve also taken advantage of Angel Flights, it’s a free service.  Cancer centers also make arrangements for low cost or free lodging as well.  It all depends on how well your Dad feels. 
 

Lungevity has a help line staffed with social workers to assist with resources.  
 

As for the how to move forward, it’s one hour, one day at a time.  Try and keep your relationship as it was pre-diagnosis. If your kids were around, then by all means proceed.  Ask your Dad about what you can do to be helpful- is it meals, shopping or a household repair that’s been hanging over his head (even if it seems irrelevant to you). 
 

Hope is what we all strive for since there have been more scientific advances in the last three years than the last fifty for lung cancer treatment.  
 

Upon diagnosis I was told I had about six months to live.  That was almost three years ago.  For me personally, I didn’t want anyone tip toeing around me as if my funeral was around the corner.  All I wanted was to try to establish a sense of normalcy in what was a tornado of emotions.  
 

As you can see there’s a lot of really terrific people here.  Please feel free to ask us about anything. Nothing is too trivial. 
Michelle

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Hi there, and welcome from me, too. Michelle has given you great advice. Nobody--not even his doctor or the best oncologist in the world--can tell you how much time he has. I do know there are a few folks here who are 15-20 years out from a Stage IV diagnosis. And the new discoveries and treatments are coming out every day. 

I started out with a tiny tumor, easily removed by surgery. But three years later, it came back, in the other lung, and spread to one of my bones (along with several lymph nodes), making me Stage IV. I did well on chemo/immunotherapy for a few months but then the cancer stopped responding and started to grow. So right now I'm preparing for a clinical trial of a new, cutting-edge treatment. It's iffy whether I can do it--it will depend on the tests I had done this morning--but if I can't, there are two other trials I'm eligible for--all within a half hour's drive.

So there is plenty of reason to be hopeful. You'll know a bit more after all the testing is done. But I agree with Michelle, follow your dad's lead in terms of what he needs or would be helpful to him right now. You might tell him about this forum, too--I've relied on the folks here since I was first diagnosed four years ago. It's a great place to meet other people going through the same stuff you are.

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Thank you both for your replies/suggestions and I wish you all the best in your journey! I already feel a bit better talking to people who are actually more relevant to this than anyone.

One of the problems is that my dad is afraid of doctors and any medical procedure. Even now he is still waiting for the biopsy results to be convinced it's cancer even though everything up to now basically strongly indicates that. He doesn't like talking about it, or the treatments or any outcome. I too agree that we should take it one step at a time but I cannot ignore doctors' already treating it as a cancer or the CT report suggesting that it is highly suspicious for malignancy (which is basically just giving the benefit of a doubt).

I cannot continue my life as it was before because before this I wasn't really too close to him. We would see each other once a week for a short period of time (due to various reasons, work, family, covid). Now we meet daily for a couple of hours, I try to be there and basically make up for all the time "lost" over the years. That's how I feel like doing even though I really don't know if this is actually good (for both). I see that he likes spending time with me.

I will most probably have a lot of questions down the road (I always have many), so please bare with me..! :)

p.s: English is not my first language so please excuse me if some things I say may not make much sense!

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Once you get a definite diagnosis (type/stage/treatment plan), it's best to work on getting him to accept that even though cancer (even incurable cancer) is most often VERY treatable, this is a marathon, rather than a sprint. These days, lung cancer has more and more become what amounts to a chronic condition--like diabetes or heart disease. With the right treatments and a modicum of luck, he can live for quite a while--maybe years and years, depending. But it's something you have to stay on top of so it doesn't get away from you.

And BTW, your English is just fine. :) 

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I'll keep that in mind, thanks :) I'll update this topic (or maybe create a new one) once we have the first results. The biopsy will be done about 3 weeks after the CT. I was hoping for earlier but it's Easter and doctors aren't available. Let's hope this 4 week delay won't change much. (3 weeks to the test + 1, hopefully, for the results)

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The testing, and waiting for results, is always the most frustrating part of this whole deal. But the testing is crucial to getting the right treatments. Getting the wrong kind of treatment can sometimes do actual harm, so it's important. Some people actually have months of testing, so don't worry. Delay of a few weeks shouldn't hurt anything. 

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Hello from me...just another person with cancer issues as well. Wow, if I had a dollar for everyone who thought they would never be on these forums... Don't get me wrong, I'm not trying to make light of the situation, but it is what it is. And that's an important point in itself...read on:

1. Let's face it, practically no one studies about anything cancer in their spare time so it's always a surprise whether it's you or someone you care for who "who all of a sudden" has it. You've acted quickly and I commend you for taking the initiative to learn all you can. I would always stress to anyone when first facing cancer that very thing. It is impossible to be an advocate for the best care when you don't know what any of that care entails. 

2. And please oh please do not let the blame game begin. That is a dead end road of hurt and despair. Know that no one and I mean no one deserves cancer of any kind no matter what factors may have contributed to that diagnosis or not. 

3. You do not have a definitive diagnosis yet and there is no sense in speculation. As LexieCat stated the worst part is waiting for that and then waiting for an approved treatment plan to begin. Believe me when I say that whereas you just want this to go away quickly, that is not about to happen at all.

4. You've read enough from the others to know there is most likely a long road ahead. That is if your Dad chooses to go down that road. No one can make him do anything and he may just decide to forgo treatment. Of course, if it is cancer then we all know most likely where that road leads to.

5. The personal issues you have with your Dad can certainly be an impediment to dealing with the issues he will face now. I strongly urge you to seek counseling, preferably together, so that you can come to an understanding that will be mutually beneficial in helping each other through this. From what you write you do care and even if your Dad dosen't want to go to counseling, then you definitely need to go...alone if it must be so. 

6. For now I would recommend as the others above have stated to take your cues from your Dad. Your reactions should be as honest with the situation as you can be given your limited knowledge of a definitive diagnosis. However, you should try to be as positive and upbeat as you can be too. As others have already attested to above, cancer and it's treatments have come a long way in just a few years and with that no one can say how long your Dad has to live. If he chooses to get treatment he could live a year or five or ten or more years yet. If you think about it, the rest of us aren't given any more guarantee than that either about how long we'll live. Oh, we like to think we're the the masters of our own destiny, but in reality each one of us is not that at all.

7. On the forums we refer to them as mets when we talk about a cancer that has metastasized outside of the original affected area. Just know that regardless of areas affected, everything for the most part is treatable and will lead to a longer life. Now, how much longer is the question...

8. Yes, there is biomarker testing and it is nearly a given that it is done automatically in the determination of a course of treatment, but that is why you need to ask a lot of questions of your medical team when it comes to that fork in the road. The more you learn and know, the better advocate you can be for his care.

9. Whether it be on this forum or in other areas of care there are a great many services available that will either direct you to or provide direct care to your Dad. Either your medical team at the clinic/hospital or the on staff hospital social worker will be able to hook you up with whatever you may need. And much of it can be got for not a lot of money...there's a lot of caring people out there; you just have to give them a chance. 

I hope I've given you some things that will help... Sometimes now you'll have to be a lot of different things, strong when you need to be to make sure your Dad gets what he needs, knowledgeable to know what that is, and compassionate when times get tough. I won't lie to you; treatment can be harsh and that is because cancer is such a vile and despicable creature. Believe me though when I state that you will find strengths you never knew you had...

As for myself I'm now suffering through the bad part of my second course of a four course treatment of chemotherapy.  And that's after endless scans, tests, and an operation to remove a part of my lung. But I know where I'm headed (or at least what I'm hoping for). You need help more than I do now...think about what is written here. And stay in touch...all of us on these forums care...

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On 5/1/2021 at 2:01 AM, Jesse L. said:

Hello from me...just another person with cancer issues as well. Wow, if I had a dollar for everyone who thought they would never be on these forums... Don't get me wrong, I'm not trying to make light of the situation, but it is what it is. And that's an important point in itself...read on:

1. Let's face it, practically no one studies about anything cancer in their spare time so it's always a surprise whether it's you or someone you care for who "who all of a sudden" has it. You've acted quickly and I commend you for taking the initiative to learn all you can. I would always stress to anyone when first facing cancer that very thing. It is impossible to be an advocate for the best care when you don't know what any of that care entails. 

2. And please oh please do not let the blame game begin. That is a dead end road of hurt and despair. Know that no one and I mean no one deserves cancer of any kind no matter what factors may have contributed to that diagnosis or not. 

3. You do not have a definitive diagnosis yet and there is no sense in speculation. As LexieCat stated the worst part is waiting for that and then waiting for an approved treatment plan to begin. Believe me when I say that whereas you just want this to go away quickly, that is not about to happen at all.

4. You've read enough from the others to know there is most likely a long road ahead. That is if your Dad chooses to go down that road. No one can make him do anything and he may just decide to forgo treatment. Of course, if it is cancer then we all know most likely where that road leads to.

5. The personal issues you have with your Dad can certainly be an impediment to dealing with the issues he will face now. I strongly urge you to seek counseling, preferably together, so that you can come to an understanding that will be mutually beneficial in helping each other through this. From what you write you do care and even if your Dad dosen't want to go to counseling, then you definitely need to go...alone if it must be so. 

6. For now I would recommend as the others above have stated to take your cues from your Dad. Your reactions should be as honest with the situation as you can be given your limited knowledge of a definitive diagnosis. However, you should try to be as positive and upbeat as you can be too. As others have already attested to above, cancer and it's treatments have come a long way in just a few years and with that no one can say how long your Dad has to live. If he chooses to get treatment he could live a year or five or ten or more years yet. If you think about it, the rest of us aren't given any more guarantee than that either about how long we'll live. Oh, we like to think we're the the masters of our own destiny, but in reality each one of us is not that at all.

7. On the forums we refer to them as mets when we talk about a cancer that has metastasized outside of the original affected area. Just know that regardless of areas affected, everything for the most part is treatable and will lead to a longer life. Now, how much longer is the question...

8. Yes, there is biomarker testing and it is nearly a given that it is done automatically in the determination of a course of treatment, but that is why you need to ask a lot of questions of your medical team when it comes to that fork in the road. The more you learn and know, the better advocate you can be for his care.

9. Whether it be on this forum or in other areas of care there are a great many services available that will either direct you to or provide direct care to your Dad. Either your medical team at the clinic/hospital or the on staff hospital social worker will be able to hook you up with whatever you may need. And much of it can be got for not a lot of money...there's a lot of caring people out there; you just have to give them a chance. 

I hope I've given you some things that will help... Sometimes now you'll have to be a lot of different things, strong when you need to be to make sure your Dad gets what he needs, knowledgeable to know what that is, and compassionate when times get tough. I won't lie to you; treatment can be harsh and that is because cancer is such a vile and despicable creature. Believe me though when I state that you will find strengths you never knew you had...

As for myself I'm now suffering through the bad part of my second course of a four course treatment of chemotherapy.  And that's after endless scans, tests, and an operation to remove a part of my lung. But I know where I'm headed (or at least what I'm hoping for). You need help more than I do now...think about what is written here. And stay in touch...all of us on these forums care...

Hi there,

I really appreciate you taking the time to reply and address all my concerns! Getting feedback from people who have been through this or have been around other people who did is very helpful. I will try to follow your (and everyone elses') advice.

The last few days I've been watching the story of many cancer patients on YouTube. The updates on checks/scans, mental ups and downs, happy/bad endings. Even though it is positive and happy when people win this battle (even temporarily), the bigger picture is quite depressing and sad. I really hope the technology and medical science will advance soon and be able to cure everyone..

As the days pass by I come to realize more and more that this is going to be a marathon in an extended period of stress, pain and anxiety for everyone involved. I will keep you guys updated once I have the results of the biopsy and every other scan/test done...

Regarding your battle, I really hope you manage to overcome all the difficulties and win. Fight as hard as you can for you and your loved ones. I am new here and don't know everybody's story. I will try to read older posts though to get an idea/catch up.

I appreciate your support.

Stay strong

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Unknown00,

I’m a 17-year survivor of stage IV non small cell squamous cell lung cancer. I’ve had a multitude of treatments, most unsuccessful but one that was. My doctor kept me alive long enough for a new treatment that resolved my lung cancer. I’m the rule these days rather than the exception. New therapies are changing the dynamic of our disease and vastly improving outcomes. So, my first suggestion is if I can live, so can your dad!

Here is some reading I suggest:

Are you from Greece? We’ve had other folks from Greece on the Forum who’ve had successful treatment outcomes. Your English is superb!

Stay the course.

Tom

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You have found exactly the right group of people to help you through this. When my husband was diagnosed with Stage IV lung cancer non small cell adenocarcinoma back in September, I immersed myself in my own "research" which also turned out to be grim, overwhelming, and just upsetting. I have no advice to offer that hasn't already been said here, other than to tell you that this organization and this forum will be a wealth of resources for both of you. Sign up for the caregiver forum and join any of the virtual get togethers that you can. My husband found great success with immunotherapy and despite a really grim diagnosis in September, complete with 8 tumors spread throughout his body, he received a "no evidence of disease" diagnosis in January. When talking statistics, our oncologist was very clear that they are old (at least 5 years back in most cases) and many do not count for the constant advances in treatment. As Tom said above, finding some resolution is more the rule than the exception. I also recommend reading all of the resources he provided - they were a great help to us and will be while we continue this journey. Make sure you and your father like your oncologist. If you don't, find a new one. That is my only other piece of advice. Take it one day at a time and know that you are not alone!

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Sorry to hear about your Dad and your situation.  Cancer is real and hasn't yet been defeated.  But great progress has been made and continues to be made at all times.  You need to decide on your relationship and what actions to take there, but regarding the diagnosis; let the doctors complete all of their testing and come to conclusions from what they find.  Then you can sit with the medical team (oncologist, etc.) along with your father (assuming it is possible) and understand the present condition, what type of cancer it is, if there are any genetic anomalies that may provide alternate treatment options and finally what the best course of action would be going forward.  At that point you'll likely be forming more questions than can be answered in a single meeting.  My advice is to write them down and ask your medical team as well as posting them here.  There is a very broad range of experience here and someone will be able to provide an answer from their personal experience.

Lou

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Hi again, thanks @Tom Galli , @Suzanna + @LouT for your comments! I appreciate it.

The biopsy confirmed that it's a NSCLC cancer. We are going to meet with the oncologist most probably next week to discuss what steps should be next. I believe it will be some CT + PET to identify the stage. It would be great if anyone can give me some feedback on what it would be good to ask the doctor or some information that will help me "verify" that the process is being done correctly and no steps/tests are being skipped. I know that most medical centers follow protocols but maybe there is something additional that I can ask to be done (even though I would assume this is an oncologist's job and not mine..but OK, let me be the control freak that I am :)).

@Tom Galli I'm Greek but not living in Greece :)

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You want to ask for comprehensive biomarker/genetic/molecular (these are all the same thing) testing to determine whether he has any mutations that might make him eligible for targeted therapy. That would mean taking a pill, rather than going through chemo or radiation--usually easier on the body and often  highly effective. Not everyone has mutations, though (I don't), but there is still immunotherapy (which is sometimes combined with chemo and/or radiation). 

Also, there are a few different types of NSCLC. You want to find out whether it's adenocarcinoma (most common), squamous cell (less common but not really rare), or some other, rarer type (like large cell). They should already know that, based on the biopsy.

What kind of treatment he gets will depend on the type, stage, his overall health, the existence of any relevant biomarkers. And yes, most places do follow a fairly standard protocol for first-line treatment. You might also ask if there are any clinical trials he might be eligible for. 

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Hi there.  I'm so sorry to hear of your father's diagnosis.  You have received some great advice from community members  but I just wanted to share some resources for you as well.

Lists of questions to ask the doctor: https://lungevity.org/for-patients-caregivers/asking-right-questions/questions-to-ask-your-healthcare-professionals

Lung Cancer 101 - tons of information about different types of lung cancer, treatments, etc: https://lungevity.org/for-patients-caregivers/lung-cancer-101

Please keep asking questions and checking in.  We are all here to support you and your dad.

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Posted (edited)

Another update. Additional CT scans showed lumphangitis. Based on this, the board decided that surgery is not an option and that we should go for systemic therapy. In the meantime we're still waiting for molecular test results to determine whether chemo should be done in combination with immunotherapy/targeted. Radiation wasn't mentioned at all. B12 + Acid folic have been prescribed.

Do the above make sense based on your experience?
Is this stage IV..?
 

I was happy to hear that they didn't find any distant metastasis but the doctor said lumphangitis is not a good sign..

Edited by unknown00
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Yes. All of this thus far is in line with the standard of care. It doesn’t necessarily indicate a stage IV diagnosis.  Today Stage 3 lung cancers are treated more aggressively with better outcomes. Remember that diagnosis is not prognosis.    Given the high rates of recurrence, once the lymph nodes are affected, systemic therapy is the best course.
 

 The B12 & Folic acid are administered in advance of chemotherapy as it can deplete the B vitamins.  It takes about a week for the vitamin B levels to be raised for chemo.   Waiting for the biomarker tests to return is also correct in that the physician is trying to establish the most effective first line of therapy.   

It’s not a bad idea to continue the folic acid if targeted Or immunotherapy is administered, but be sure to have B vitamin levels checked regularly once or twice a year (typically this isn’t routinely done). If the levels are too low, fatigue is an issue but if the levels are too high, there can be serious side effects like neuropathy.   
 

Sounds like it’s all going to plan.  What you may consider a second opinion if there is a targeted mutation with a doctor that has expertise.   For now, one step at a time.  

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Agree with Michelle.

Incidentally, I believe the term is lymphangitis--it describes inflammation of the lymphatic system, which might or might not be related to cancer. 

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Your medical team appears to be doing a thorough job of diagnosing the disease and planning your course of treatment.  That is good news.  Make sure that you ask questions on any point in your treatment protocol that you don't understand.  You're getting good counsel here so try and keep yourself focused on the treatment while learning all you can about your disease.  That knowledge will help you down the road (and more often "not far down the road") and prepare you to be more participative in your treatment.

Lou

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