Shocked

[Parisaeshg]

My dear husband was diagnosed with lung cancer stage 4 today , I cannot breath , it was so shocking to both of us , he never smoked , no even a drinker , healthy eater . He started his HVAC company last year and has 5 workers . We don’t know what to do , I don’t know if is he going to manage his company while treatment ( chemo , radiation and all other stuff ) should he just give his company up ? I am not feeling good at all , crying wont help me too . I don’t have anybody to talk , he means everything to me , we love eachother he is 57 and i am 46 , 25 years living together my daughters don’t know yet . I can’t even sleep or eat .

[Lexis6767]

My heart is breaking for you in this moment. I feel your shock, grief, dismay and disbelief, especially being diagnosed only today! I was diagnosed October 2016 with stage 4 NSCLC, with mets to bone . I still remember the day my husband and I walked out of the doctor's office. We sat in the parking lot, silently staring out the car windows for ten minutes. Then he looked at me and said "Alright, let's kick this thing.". And it was on.

I had chemo, and now I've been on immunotherapy. I'm scanned every three months and as of now I've been stable. It hasn't been a fun journey, but to be completely honest ... I'm doing this for HIM. He is my biggest supporter, loudest cheerleader and strongest encourager. He comes to every treatment and appointment and I would never be able to navigate through this without his strength and belief in me.

I don't want this post to be about me, so I'm sorry because I'm a rambler, but I just wanted you to know that this diagnosis is not the death sentence it used to be. There are SO MANY treatment options out there, and more are being approved each month. The biggest and best benefit he has is YOU by his side, lifting him up when he's down, encouraging him to stay strong and courageous and never giving up. Your world may be turned around for a bit but try to maintain some semblance of normality when and where you can. It really helps!

I wouldn't be able to answer the work question, but in my opinion y'all also shouldn't be worrying about giving up the business just right now. Wait and see what kind of treatment plan the doctors will put in place and see what the treatments will do to him. If he has employees he trusts to do the heavy work, let them handle that for now.

This group is wonderful, and never hesitate to ask anything here. We are all on a journey, but we are not alone. You will no doubt have many questions about your husband's treatment and I'm sure you will find many answers as well. Keep your chin up and stay positive!

[Parisaeshg in reply to Lexis6767]

Thank you so so much for your reply , i am glad that your situation is stable , you are the only one who told me something and gave me hope ,god bless you and your husband . My husband is so strong .unfortunately not me though. But i try my best to help him in this journey. I would definitely keep in touch with you to take advantage of your kind words and knowledge. I feel i have a friend that undrestand me so well.

[Lexis6767 in reply to Parisaeshg]

You may be amazed at just how strong you really are when you have to be! Please stay in touch and ALWAYS remain hopeful! God bless you💜

[jpoehlmann]

I was diagnosed with Stage 4 adenocarcinoma back in 2014, no actionable mutations at the time and ended up doing chemo for over 2.5 years before switching to a targeted therapy. Every patient is different, but I know stage 4 patients who continued working and barely missed a beat. New treatment options are coming out every year, and more crossover is happening between cancer types as the disease is treated more and more based on genetics rather than the organ it originated in. (My current treatment is a breast cancer drug even though I have lung cancer -- we are "off label" because of the particulars of my cancer's mutation.)

I don't know if it will help you to read another person's experience, but I have chronicled the ups and downs of my treatment, as well as interviewed other patients and caregivers and medical professionals. Here is a link to the first post I made after my diagnosis, which sets the stage for the rest of my story:

justbadforyou.com/blog/nega...

As Lexis6767 said, lung cancer is no longer the death sentence it used to be, even at stage 4. Some patients can be effectively cured, some can manage their disease as a chronic condition like diabetes and simply outlive it. Your husband has an advantage, having been healthy and relatively young to start out. Ignore the outdated statistics you are likely to find online -- they are meaningless, anyway. Get a second opinion on treatment, from a research hospital if you can, and make sure that the latest treatments are discussed. Not every patient is a candidate for immunotherapy (I wasn't), but that area of treatment is expanding and clinical trials might be an option.

As for his work, that will hinge on treatment. Every patient is unique. I kept working at first but had to quit by my third infusion -- although I ended up on disability after a while, and had been plagued by fatigue for a long time, I was able to return to work part time. Other patients, like I said above, manage to keep working straight through. My advice is to be prepared for a leave of absence, but anticipate it will probably be temporary. After all, it is helpful to have a goal of returning to the life you have and completing the goals you have already set.

I can honestly say that the past few years, while being stressful and uncertain, have still ranked among the happiest of my life.

Best of luck to you both moving forward. Try not to let a little thing like cancer get in the way of living.

[Parisaeshg in reply to jpoehlmann]

Thnk you so much for replying , i am so happy that could defeat the disease so far and i wish you the best. So glad that i signed up for this group i got a few replies that all of them includes your comments are so helpful , i have more hope and energy now and I shared all the comments with my husband , we have hope and going to start the battle , i need to be strong , i have to be able to act as normal as possible , i have a 6 years old daughter that is a little too smart , last night despite of trying to not to show anything to her and say funny stuff and laughing and playing , she looked at me and said mommy why are you so sad ? I need to boost my energy and hope please don’t Forget about us , keep in touch

[jpoehlmann in reply to Parisaeshg]

You might find info like this helpful:

lungcancer.net/clinical/com...

[Denzie Moderator Volunteer]

In total agreement with those who said that this is not an automatic death sentence. It’s been 7.5 years with stage 4 lung cancer. Originally I was given 10 months estimated survival.

Because your husband is a nonsmoker and non drinker there is a strong possibility that he will have a targetable mutation like EGFR, ALK or ROS1. If that’s what they find he will be treated with a targeted therapy. That would mean daily pills rather than chemo and radiation. It also means few side effects.

Jpoehlman’s answer resonates for many reasons but one of the most important is that the survival rates you read about are based on outdated results Between my dad’s death from lung cancer in 1967 and my diagnosis in 2010 only 3 treatments were approved for lung cancer In the last three years there have been more than a dozen new treatments approved

Even with the Chemo that is Standard of Care today many are able to work during active treatment. Let us know what treatment option they give him. Someone here will have likely had it or cared for someone who did. We can help you minimize side effects.

[Parisaeshg in reply to Denzie]

Thank You Denzie for your reply ,by reading your comments i feel more hopeful which makes me stronger . I am so happy that you have been successful defeat the devil, hope you long and healthy life ahead .i will definitely keep you updated when i hear about my husban’s type of cancer , we are going to do the biopsy from lung on Momday .

[JeanE41]

Welcome Parisaeshg. There is nothing more scary or shocking than to hear you have cancer. This is the start of a journey no one wants to take, but so many of us must. To quote one of our contributors, "If you have lungs you can get lung cancer". I am a non smoker and non drinker who eats a healthy diet and was diagnosed in 2015. There is no fault. The best advice I can give you is to take this one step at a time. You, as caregiver, have the most difficult job. Watching a loved one go through treatment can be difficult. You also have a young daughter who needs to understand at her level what is happening.

There are many more treatment options available now than when I was diagnosed which means there is more hope for successful outcomes. Keep us informed about your husband's treatments and responses as well as how you are doing. Again, one step at a time and take care of yourself.

Jean

[Parisaeshg in reply to JeanE41]

Thank you Jean for your reply , my husband is a fighter .Even though he is the one who is going through treatmant pathway he is tough and his only concern is seeing me sad , which can effect my quility of relationship with my kids . I promised myself last night to be strong and try to live as normal as possible. I need to think about healthy choices of foods that he needs during treatment , if you have any idea please let me know .

Best wishes for you

Parisa

[imina]

I'm sooooo glad you found this group. It is full of information and resources. PLEASE, take care of yourself and the children during this time. Although, I realize it will be difficult, it's crucial. I believe with all the treatments out there, your husband will be fine. You just have to believe that . Thanks for sharing your post. Will keep you and others going through in prayer

[anrean]

Hi Parisaeshg and Welcome to the group. You will find a lot of support and information here. I was diagnosed a little over a year ago, and was told I'd have 2-5 years. Went through one mega dose of radiation and that tumor is now dead. However, there are more of them in both lungs. Right now we are watching carefully and I am not in treatment. This works for me because this is my 5th primary cancer; in 2002 I had liver cancer and most chemos would possibly shut down my liver as the chemo for 2 breast cancers did. Beating liver cancer wasn't easy - my expiration date passed 15+ years ago time ago and I am still here. (I had a 25% chance of surviving the surgery and a 6% chance of living 6 months.) What I have learned from my journeys is that nothing is definite.

The first few days or weeks are very confusing. There may be a lot of tests that the doctors want so they know exactly what they are up against. I suggest you use a notebook and write down what the oncologist says, or better is to have a tape recorder/dictation recorder so that you can go back and fill in the things you missed. We get overwhelmed by it all, and those are the two options, along with taking a friend, that helped me when I got overwhelmed and couldn't listen any more. Also, write your questions down so that you don't forget what you want from the oncologist. All of my doctors except one like that I use a list to remember what I want to communicate with them!

Please don't make any big changes like selling the business until you have better answers as to what treatment your husband will receive. As many have said, the last few years have brought great new treatments with minimal side effects along with drugs that can manage the side effects. A lot of how your husband will react is based on the treatment he receives. Some may knock him out and some are a breeze in comparison. if it knocks him out, speak with the oncologist about the safety of changing treatment. I worked through most of my cancers.

If you have a comprehensive cancer center near you, please get a 2nd opinion. I drove 2 1/2 hours to get mine and it was very satisfying to know we were on the right track. However, a friend found that his treatment plan was 6 years out of date. In his case, his oncologist spoke with the 2nd opinion from a comprehensive cancer center and made updates to his treatment.

For me we are watching and waiting because there are so many tumors. So far they have stopped growing or grown very slowly and at a minimal rate.

Please remember through all of this that you need to take care of yourself so that you have the strength to take care of your husband. Sometimes I think this is harder on the caregiver than the patient. I take care of myself by buying a large cup of special coffee for each visit - it is a small reward for getting through.

We are here to help you, so please don't be afraid to use us! As you have heard from others, cancer is now often a disease that can be managed for years or until it is in remission!

Also, you are now on a journey that means a different normal - we call it our "new normal" because our lives do change. Praying for you and your husband.

Lauri-Anne

[Parisaeshg in reply to anrean]

Hi anrean , you might not know how much this group means to me , since i signed up i am getting stronger and stronger abd more hope whith every comment , wish you a kong and healthy life ahead of you .

Parisa

[Ncpoet]

Parisaeshg,

I, like your husband, was a non-smoker and I was diagnosed with stage 4 nsclc, adenocarcinoma, in 2013.

It was a shock. I tripped and fell over the dishwasher door and hit my chest on the edge of the door. So when I was x-rayed, I could not believe what I was hearing.

I had chemo, carboplatin and Alimta, then targeted therapy drugs—Xalkori for 7 months and then Zykadia for five months. I went back on Alimta every three weeks for one whole year. I was scanned every three months. When my scan showed only scar tissue where the cancer had been—inside lung, outside lung, chest wall and a lymph node—I stopped treatment. I have had no return of cancer since 2016. Each person’s cancer and choice of treatment is as individual as each person is.

Since my treatment, so many more ways to treat lung cancer have become available. So you see, there is tremendous hope that our lives can be lengthened and hopefully a cure will be discovered just around the corner.

As far as work, your husband should continue to work as long as he feels like it. My husband did this when he was diagnosed with a stage 4 cancer in 1993 and is still alive today. I find that a positive attitude, hope, faith, and support from those who love us makes all the difference in becoming a survivor. And find things to laugh about! Laughter is a great healer. As far as statistics go, turn them around, don’t put your husband in the percentage that dies. Put him in the percentage that lives. I decided I would be in top 1%.

I did a lot of talking to my brain. Your brain believes what you tell it. So I only spoke positively to myself. I told myself that I would be fine and that my treatment would work. I would be around to see my grandchildren graduate from high school, from college, get married and have great-grandchildren to hold. They have graduated from high school and are now in college. I was 66 when I was diagnosed and recently celebrated my 71st birthday. Your husband is young and being healthy before this is a plus.

The important things are a biopsy to know the type and stage of cancer, genetic testing to help with choosing the right treatment, the possible treatments, and finding an oncologist your husband feels confident in and one who treats your husband like a whole person.

I could not have the lobectomy because of where it had spread, and my oncologist didn’t suggest radiology. So I went the chemo and targeted drugs route. Yes, I had side effects, but I had good results as well.

So take a deep breath and believe your family can get through this together. I survived my husband’s cancer and he has survived mine. We have both been patients and we both have been caregivers and our love has grown even more during those experiences. We will celebrate our 50th anniversary this year.

Sending prayers your way,

Judy

[Parisaeshg]

Judy , thank you sp much for your reply , talking to you guys in this group gives me hope and makes me stronger ,wish you a long and healthy life .

Parisa

[ronnie1943]

Hi, my name is Lynn, So very sorry to here about your husband, you came to the right place.You will have so many her to give support, I'm also a caregiver I can relate to all you are going through!! My husband has stage five prostrate cancer. He just started targeted therapy. I want to,say and I know your husband and mind have two different cancers, but at stage four when My husband was first Dx it's been ten years. I do have a dear friend who's husband has stage four lung cancer and it's already been three years from the day he was Dx, Hes doing well and has been in remission now for almost a year. I just saw him and his wife the other day and her husband is doing well looks good and now that he's not getting treatment, they are keeping a close eye on her husband, if any tumor were to pop up they will radiate it right away to get rid of it. I can't tell you not to worry or be upset, I live everyday just waiting for the bottom to fall out, caver is a scary thing, Sam, my husband has had many bumps in the road, pills, chemo, radaition. Operations, but I thank God he's still here. We have a good marriage and I can't imagine being without him.

Please know you came to the right place on this site,and everyone is here for you!!! Also, don't give up, there are so many treatments out there and so many in the making.Ypur husband will be here for many decades, keep I touch. Sorry about the long post. Take care, hang in there.

Best wishes and prayers coming your way. High for you!!

Sincerely, Lynn.Pa. 💗

[Parisaeshg in reply to ronnie1943]

Thank you Lynn so much for your warm and kind comments . I am so happy that i join this group , i ve been getting sp much informations and hope so far، i wish you and your husband a long and healthy life . I will definitely keep you posted along the way of our journey, thanks

Parisa

[ronnie1943 in reply to Parisaeshg]

Hi Parisa, Oh boy, I better check my spelling. Lol!! Believe me I know exactly what you are going through, and I can feel your hurt. I also was so happy to find this site,,There are so many caring wonderful people with a lot of helpful formation. Please do keep me posted and all of us on this site. We are all here for you.

Take care, like I said there are great treatments out there. Wishing the best for you and your husband.We are all in this together and we will not give up the fight!

Lynn PA

[Memaw0100]

I am so sorry to hear of your husbands diagnosis. I was lucky mine was found quite by accident at an early stage. My biggest advise is to not make rash decisions about his company. Allow yourself some time to process everything. Allow yourselves to go through the stages of emotions. Good luck and God bless!!

[ElmerFudd314]

Sounds like my situation except I just turned 69. My oncologist said the treatment depends on the results of the biopsy. There are various mutations and some of the mutations are treatable with the new drugs. I've had 5 cycles of chemo so far and I am learning how to manage the side effects. Check back with me when he's starting chemo and I would be happy to clue him in to these tricks.

[Parisaeshg in reply to ElmerFudd314]

Thank you dear , i will definitely keep you posted about his treatment plan to learn from you . Wish the best for you

[Surviventhrive]

Awe, I am so sorry to hear about your husband's diagnosis. Unfortunately, people don't as a general rule realize how prevalent lung cancer is among never-smokers.

I have some suggestions for you. Please, if it hasn't already been done, have his biopsy tissue tested for genetic mutations. There are targeted therapy and immunotherapy drugs that he might be eligible for that could be much easier on him than traditional chemotherapy.

I have also learned that it is very important to seek second opinions, even if you love and trust your oncologist. If he is being treated at a large NCI cancer research center, a second opinion might not be as critical, but if he is going to a community cancer center, a second opinion might give some different options (or might not, but at least you would know).

I wouldn't give up my company just yet. Many of us are living life to the fullest, despite dire diagnoses. Some of his employees may have to step up and take some of the responsibilities for awhile, but maybe not!

I do understand how difficult it is to tell the family. My dad died of lung cancer when he was 49 ... it was really hard to tell my mom that now I had lung cancer, too.

Don't give up hope just yet!!! I was given 4 months ... back in 2012.

[Lindajo44]

Dear Friend . . . yes, a total shock. It took me a good two weeks to finally calm myself down and stop thinking thoughts of death every time I looked at my husband. Totally was not expecting the results of the CT scan which showed small cell lung cancer metastasis in bone and liver. Doc said 4-6 months with no intervention and 6-12 with chemo. I have found that 2% live longer than five years with small cell lung cancer and we are looking for that result. We have given this problem over to God and trust Him with the results. It is really hard being the caregiver and watching your loved one suffer. We got the news on his 74th birthday in February. It's been a bumpy road so far but together we are living one day at a time working on positive attitudes. I will keep you in my private prayers. There is hope for you. Grab on to it and hold on tight. I'll look forward to traveling this road with you if you'd like. Linda

[Parisaeshg in reply to Lindajo44]

Thank you so much Linda , yes traveling this road together makes it much easier for us , i will definitely keep you posted about my husband treatment plan and i will pray for you and your husband as well , thanks for your warm and kind comments .

[Parisaeshg]

Thanks for your advice dear , i am sorry for your loss , and i am glad that you made it this far , wish you a long , healthy , happy life with your mom.

[annkezar]

More prayers and healing thoughts headed your way. In addition to the many wise comments others have given I'd like to recommend a book- the Cancer Fighting Kitchen by Rebecca Katz. It gives a lot of information about nutrition for cancer treatment and recovery including tips on how to deal with possible treatment side effects that can impact ability or desire to eat. You might see if your local library has it before purchasing it. Another good book is Anticancer by David Servan Schreiber- this one deals with ways to help make your body less hospitable to cancer. Please note that these books provide information to help supplement conventional cancer treatments- they do NOT take the place of conventional treatments or clinical trials. There are a lot of sites/books out there that do propose ways to "cure" cancer without chemo/radiation/immunotherapy/targeted treatments. I am not aware of any of these that are backed with good quality peer reviewed research. I was diagnosed in February 2012 with a "bulky" stage 3 adenocarcinoma that had set up residence in a subcarinal lymph node. Following chemo, surgery, and radiation I have held a NED (no evidence of disease) status for the past 5 1/2 years.

[Parisaeshg]

Thank you so much for the comments, i would definitely look for thoes books a , i am aware that right and healthy eating is a important part along with medical trial , i am glad that you could defeat the devil and i wish you long and healthy life.we need your prayers.

Parisa

[Marc_M]

You have already received a wealth of info. Just know that I was diagnosed in 2011 with Stage 3 adenocarcinoma that spread to my brain and adrenal gland and today I have been cancer free for over 3 years. There is always hope. Don't let anyone take it from you. God bless.

[Parisaeshg in reply to Marc_M]

Hi Marc , thank you for replying , i wish you a long and healthy life ahead.Thanks for giving me hope , you might not know how much thease words mean to me . I feel much stronger to help my husband in this battle . God bless you

[Lesleykay21]

Hi Parisaeshg,

This type of of diagnoses is so scary. But, try to make sure you and your husband explore all options! There are so many different treatments out there, and make sure you’re an avocodate for him! If something doesn’t sound right, or you have questions, ask them until you have all your answers.

Thinking of you and your husband. You can tackle this together!

[Parisaeshg]

Thank you Lesley , I will definitely take your advise, God bless you

[bellaella]

My heart goes out to you. When I was 58 I was diagnosed with lung cancer. after all the testing I had a upper right loeb lobectomy. six weeks later I started chemo, 4 rounds of cisplatin which wiped me out. I could not work. all I did was sleep. it weekened me and to start I was very strong. It has been 12 years now and I am cancer free, my stage was 1b small cell lung cancer. I was treated by Memorial sloan kettering cancer center. I wish you both the best,, prayers......

[Parisaeshg in reply to bellaella]

Thank you Bella , i got wonderful feedbacks from so many strong and amazing people like you which gives me hope and strength, god bless you , stay healthy and happy

[FtB_Peggy]

Good morning, Parisa,

Thank you so much for joining our community. As you have seen, these are wonderful people who can guide and support you both. As they have said, please take care of yourself and love those children as you walk through this experience together. Research is exploding with hope everyday.

I will also private message you.

Welcome!

[Parisaeshg]

Hi Peggy , Thanks for your warm welcome.That is true ,one of the best thing that i did is signing up in this group . I feel like i am not alone and amazing people like you are thinking about us . That gives me more hope and energy to start this journey. God bless you

[Kickedass]

I know exactly how you're feeling right now. I too was diagnosed in November with Stage4 lung cancer, I remember the day well. This is not a death sentence, there are so many treatments including surgical that you can look in too. Make sure to get a second opinion and do your research on reputable sites for information. I will pray for you and your husband, he's young and you both will make it through this! Kick it's ass!!

[Parisaeshg in reply to Kickedass]

Thank you dear for you’re feedback, Yes we will kick it’s ass , and i got so much hope from amazing people like you , wish you the best

[gibdonnalee Community Superhero]

I am so very sorry your going through this. I know it is like someone gut punched you! With your husband being just diagnosed you both are in shock. I remember my diagnoses back in 2014 of carcinoid lung cancer. It was overwhelming at first, but it will feel hopeful after you learn the information that's out there.

Lexis6767 is point on with her reply. We all on here will be ready and willing to be by you and husbands side, so try not to be too scared, because we all have been through so much and are happy to help someone who needs it.

We are here for you guys!

[Parisaeshg in reply to gibdonnalee]

Thank you for your kind words, I really needed . Hope you are doing fine and wish the best for you .