I'm so scared and emotional: Hello my... - Lung Cancer Support

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I'm so scared and emotional

Britt123
Britt123

Hello my name is Britney I am 30 years old I have three beautiful children that are ages 10 9 + 6 +as of Monday April 2018 I was diagnosed with stage 4 Non small-cell lung cancer I don't know what to expect I'm so scared I'm crying all the time I'm looking at information on Google that has my mind everywhere I really don't know if I'm coming or going I really don't know how to talk to it about anybody else around me because I feel like they don't understand I start my first round of chemo on April the 26th and I just don't know what to expect I just have so many things in my head and I don't know how to stop them mixed emotions please help

25 Replies
oldestnewest

Britney, I cant even begin to understand how you feel right now. I'm sorry you have to go through all of this. I'm not sure which chemo combo they are putting you on, but from what I've seen, the first 1-3 days after are ok because of the steroids still being in your system, but then days 4-7 are rough. But it really varies based on the drugs, the doses and each individual person, but I would try to have someone there to help you out so you can rest.

Some tips during the chemo infusion day, suck on ice chips during chemo and stay hydrated. Eat some protein snacks like nuts, protein bars, etc. Try to take all prescribed meds even if you feel well. It will hopefully keep you feeling well. Stock up on popsicles and biotene mouth products to prevent and soothe and mouth sores.

There are many other great support sites like INSPIRE, Cancer Compass and several on Facebook. I've found being a part of those has helped and gives you access to a lot of people who are going through this and understand how you feel. I wish you the best and I will pray for you to get positive results!

Kristen

Britt i know your scared we,ve been where your at now. try not to be afraid i know its easier said than done. hopefully they can take care of it. but there is hope i had stage 3 i am now a 5year lung cancer survior. we will be here for you if you need to talk rant cry. know we will help you and be here for you. love susiejo1948

Welcome Britney. I think the three scariest words in the English language are you have cancer and especially lung cancer. You are right, people who have not been through it it do not understand. We've all heard those words here, so we understand your shock and fear. There are many in this community who have been through chemo as well as the many other forms of treatment out there who can share their experiences and offer suggestions.

This is not an easy journey, but if you take it one step at a time you will get through it. Be sure you understand what you are told and don't be afraid to ask as many questions as you need answered. Accept help when you need it. Keep us informed of your progress. We're all here for you.

Jean

Hi Britt, I private messaged you, but I also wanted to publicly add my welcome. So much to carry as a young mother. Jean is so spot-on - ask questions until you understand your diagnosis and options; call your medical team as soon as you experience any side effects or symptoms - they want to help; be patient with your body; get help from anyone willing to pitch in. Please keep talking to us.

Denzie
DenzieModerator

Adding my welcome. Have they received the results if your mutation testing yet? A piece of your biopsy would have been sent to find out where in the replication process the cell dna broke down. Frequently younger patients are found to have the ALK, ROS1 or EGFR mutation which means that you could take a pill rather than having chemo.

You’ve had excellent advice so far. Let me add a resource you should look into. The Bonnie Addario Lung Cancer Foundation has resources and studies going for patients under 40 years of age. They can be found online at lungcancerfoundation.org. Don’t hesitate even to call to get immediate attention. 650.598.2857. They’re in California so consider time zones when you call.

Bookmark the Free to Breathe Page as the Addario Foundation has nothing like the help you’ll get from the patients and their experiences on the boards here.

Hi Britney Welcome to one of the most helpful and supportive sites I've found on cancer! First thing I would advise is to stop using google to get information - most of what you find is old, and things have been changing fast. My doc recommended not reading anything over 6 months old because of the changes, and he was right. I have had 5 primary cancers in 16 years - liver, each breast, ovarian and now lung. What I have learned from this is that cancer is now very often a manageable "disease" that can be treated over time and there are many more who can say they have gone through treatment and are now "cancer free." Chemo effects depends on which drugs they are using - some can make us terribly ill and others can be much easier to tolerate; it depends on what your oncologist thinks is the best treatment for you and how your body responds. Be sure to let the oncologist know if you are not tolerating it well - often there are things they can do to help you! Take someone with you to your appointments so that you have a second set of ears - it gets overwhelming and often we miss a lot of what is said. I often use a tape recorder/dictation machine so that when I get home I can play it over and over again until I understand as much as possible - then I start writing down questions for the next appointment. My docs are used to getting written questions and answering them again and again until I understand the answers. You have gotten some great advice from Denzie, Peggy and Jean - they will always be here to answer questions, too. It is normal to cry and be scared - my first cancer came with a definite expiration date if I did not go through treatment, and with treatment the stuff I was reading said I wouldn't be here even 5 years later; well, it has been 16 years! A lot of that had to do with having an oncologist at a comprehensive cancer center who kept up with all the new information, and me doing everything he said. Chemo used to be downright ugly for everyone, but now there are so many different chemos and so many ways to fight the effects of those that aren't so nice. Don't be afraid to talk and talk and talk - it is the only way you will understand all that is happening. Being relatively young and having children is a great concern - know that they will adjust to what it happening - children are far more resilient than we give them credit. Trying to keep a positive outlook will help them accept the changes that your whole family is going through. Don't be afraid to come here and ask questions or just vent - I don't think I would have such a positive outlook if it wasn't for the support here! Praying this helps a little as you adjust, Lauri-Anne

Britt123
Britt123 in reply to anrean

I'm crying right now thank u so much for this... My emotions have been everywhere but I'm getting more and more of these messages and the are very uplifting I really appreciate all of you!

anrean
anrean in reply to Britt123

It is okay for your emotions to be everywhere - we have all gone through it when we first heard those terrifying words "You have cancer." In time you will get a grasp of your emotions, especially as you see others who have gone through the same thing express their feelings, too. My friends and I share one well-worn word: BREATHE. Take some deep breaths and know you are not alone and your emotional control will get better! Lauri-Anne

Britney, you may be feeling scared and overwhelmed right now, but I assure you there is hope and that is HOPE all in capital letters.

I was diagnosed in 2013 with stage 4 non small cell adenocarcinoma. It was in my left lung, outside my lung, on my chest wall and a lymph node. I did chemotherapy and targeted treatments. I was on carboplatin and Alimta and later Xalkori and Zykadia and then back to Alimta. I went into remission in 2016.

All treatments are as individual as each person. We have a number of options. Just make sure you have a doctor who explains things for you and one you feel like you can trust.

You are young . That is a positive. I was 66 when I was diagnosed. I just celebrated my 71st birthday. You have 3 very good reasons to stay alive and to give you strength to take this tiger by the tail and sling it out of your life. I have grandchildren who inspire me to be here for all those milestones in their lives.

Staying positive and thinking of yourself as a survivor is a big help. I have a strong faith. Romans 12:12. “Be joyful in hope, patient in affliction and faithful in prayer.” Let people pray for you. It helped to know others were praying for my survival.

Also, find activities that help alleviate stress. I started coloring, taking nature photos, and doing crafts. Do the things you enjoy and always find things that make you laugh. Laughter is a great healer. There are more new treatments now and what once sounded like a death sentence does not have to be true anymore.

I believe a cure is around the corner. But meanwhile we will continue to survive.

You can get through this! This is a great place to talk to people about your feelings and ask your questions. We may not know each other as in having never met before, but we do know each other as we have shared experiences.

You are stronger than you think!

All the best,

Judy

Britt123
Britt123 in reply to Ncpoet

OMG!!!! I can't stop the tears it's nothing like having a family u have never met my heart is so big right now and I am such a crybaby.... Lol thank u so much for that I REALLY REALLY NEED THAT

Ncpoet
Ncpoet in reply to Britt123

Keeping you in my prayers! Cry when you need to. Nothing wrong with that.

Judy

Britt, my heart hurts for you. Sending prayers up for you this morning and as it comes to my mind throughout the day. There are a lot of treatments out there and concerning side effects I agree with the others it can depend on what you are on. My husband had chemo and radiation. He has been on Opdivo now for a year and it has kept the cancer at bay. Do your research as I did for him. Keep us updated and remember we are here for you.

Britney,

I can related to your situation. My wife was diagnosed with stage IV NSCLC three months ago and we were very scared, she is fine and live a normal life today. Please be aware that there are many effective treatments today. Doctor at Johns Hopkins described medical advances in this area in the past few years as 'ridiculous'. Make sure your oncologist check your molecular mutation before decide treatment. For many type of mutations, targeted therapy is very effective, likely much more effective than chemo and less side effect.

It is a serious disease but there is plenty of hope.

Wei

Age 69 here. Have nsc lung cancer and been through 5 chemos as well as head radiation. Really sorry to hear of a young person with this problem. If you want to look at practical ideas look up my old posts. I can tell you my best advice is to take docusate S if you get constipation. Maybe even the day after chemo. The good news in the paper today is Keytruda therapy. I'm sure your doc will clue you in. Apparently side effects and very expensive, ($ 150 K per year.) Hang in there, I see a cure in your future.

Brittany, a big hug from all of us to you! I can’t emphasize enough how important it is to get a hold of the lab/pathology report. Your tumor should have been sent to a lab that will test for molecular mutations. Ask! If that hasn’t been done yet, insist on it. I would also urge you to get an appointment at the nearest cancer center for a second opinion. Just to make sure everyone agrees on your treatment plan. Also be sure (as stated above) that you take someone with you to appointments. It’s pretty impossible for the patient to really 'hear' what is all being said. One last thing I would urge you to do is test your home for radon. It is the second leading cause of lung cancer. You can order a DIY kit for $15; call 800-383-5992. I was diagnosed almost eight years ago (radon). Keep the faith. There’s a lot of good science happening! Hugs, Gail

Britt, a great resource for learning about second opinions and how to find a National Cancer Institute designated cancer center, please see: cancer.gov/about-cancer/man....

Britney, I'm also wondering if your cancer has been tested for genomic mutations. At your age, the probability that you have a targetable mutation are very high. The Addario Foundation Genomics of Young Lung Cancer Study found more than 75% of people in your situation had a mutation.

lungcancerfoundation.org/me...

If your doctor hasn't talked to you about this testing, I strongly advise you to get a second opinion from a different doctor in a different group and possibly to change doctors. We are talking very basic standard of care for newly diagnosed lung cancer patients here.

So sorry this is happening to you! Give yourself a lot of credit for reaching out to this site for help.

Anita

Hi Britney , I undrestand you’re fear and emotion. My husband was diagnosed with stage 4 lung cancer less than 3 weeks ago . I felt so scared and helpless at that moment specially after hearing stupid survival rate from his Oncologist. But after that when i joined to this group I started to see the reality of this cancer . Yes there is a serious thing but as everyone says there are so many findings recently . I was able to talk to a long cancer specialist which sees only the long cancer patients in a cancer center in New york, she is one of my best friend’s daughter, believe me after talking to her i feel different about this she said that she has so many patients that could win the battle and are in remission. She was so exited about the new medications , we started yoga and meditation for my husband and Also have him to eat fresh vegetables and mostly Alkaline food wich they say is benefecial to a cancer patient . I am sure you can do this you will win the battle . Wish you the best my dear you have my prayers.

I see that you have already gotten some great advice here, and it is getting close to your start date for the chemo. Hopefully you did get genetic testing done on the tumor when it was biopsied. If not, please ask why. This is an essential component of care today and it must be done in order to check for possible targeted mutations or compatibility with immunotherapy. Also, because of your age, you might qualify for a clinical trial, and that should be looked into.

I had been diagnosed at 46 (four years ago) and was considered quite young at the time -- back then, they could find no actionable mutations for me and immunotherapy was not really available yet. So I went on pemetrexed (Alimta), carboplatin and Avastin for six rounds, before going into maintenance with just the pemetrexed. The carboplatin was a real butt-kicker, to put it bluntly, but the first month wasn't too bad and once I was in maintenance mode things quickly improved overall. There were a lot of days I stayed mostly on the couch, but I highly recommend you get up and move as much as possible. If you are interested, I did a series of blog posts and some videos about how I was feeling at different stages in my chemo cycles. Everyone is different, of course. But here is a link if you want to see how it was for me: justbadforyou.com/blog/page... (There are three pages of links with these diary entries, the link here will bring you to the page with the first two, but you might want to scroll down and click "newer posts" to get to the ones where I am actually feeling the effects of the medications.)

Here is another good site for information: lungcancer.net/?s=chemother... You can also read a number of interesting patient stories there (including a more in-depth version of mine).

As you can see already, you are not alone and you should not be without hope.

In the meantime, remember that education is good, but only when it comes from reliable sources. Stay away from sites that claim to have inside scoops on suppressed treatments or any sort of miracle cure. Your hospital or clinic should have a nutritionist available to talk to, but don't go looking online for magic diets that will prevent or treat cancer, because they do not exist. Eating BALANCED meals is essential -- avoid fad diets. But make sure you start now by increasing your calorie and protein intake -- a couple extra pounds will be helpful as you enter treatment because there will surely be days you do not want to eat much or cannot eat much. You do not want to lose weight, though; experiment with your meals to make sure you find foods you like as your tastes change (which they will). And my oncologist pointed out that sometimes eating anything is more important than trying to eat what you are "supposed" to. There are, after all, bigger things to worry about.

Look out for special words when you are getting advice, too. Lots of people will tell you things that sound interesting or scientific but actually, mean nothing. Like alkaline food or water being preventative (or curative). Once you eat or drink anything, it is neutralized in your stomach acid, so there really is no such thing as an alkaline diet (and there is no physical way to change the alkalinity of your blood or body without posing a major health threat, anyway). If you have an upset stomach, you can alkalize it with a Tums very quickly -- otherwise just eat stuff that is generally healthy and that tastes good to you. Keep your calories up. Keep the protein in your diet. While too much sugar is never a great thing, you also should not starve yourself of all sugars -- that is one way to ensure you lose muscle mass because your body will begin converting it to glucose in order to feed your brain. Expect to get a lot of crazy advice from random people, though. It is unavoidable.

In the meantime, have a good cry. Try to laugh a bit, too. The more you can find humor or beauty around you, the better. It's a bumpy road, but it is still driveable.

May I ask you to talk to God ? I was diag. with sclc stage 4 w/mets 2 1/2 yrs ago. I talk to him every day and he puts me in a better place emotionally and spiritually. I was scared too, but the faith I have in my Docs and God has helped considerably !! Remember, God puts obstacles in our lives to help us focus on him firstly and ourselves after that !! I will pray for you Britt and your family. God does not want us to be scared !! God bless

This website is full of survivors. Looking forward to seeing your name added here. Your faith will get you through. Kids don’t need to know too much. Just as much as they can handle at their age. Wishing you hope, strength and healing.

Britney, please don't look at the internet for the statistics they are old and wrong. I am 56 and have Stage four NSLC for almost three years. There are so many new treatments and meds you can take. Please PM me if you would like to talk further. Stay strong for yourself and the kids, its super scary in the beginning but once you figure out a treatment plan and start your battle you will get stonger!

Take care, Lisa

Hi Britt123,

You have gotten so much good advice. Mine was also to be sure to have your tumor tested for genetic mutations. That is critical.

I would like to recommend that you read the NCCN guide for lung cancer. It will help you communicate with your doctor. nccn.org/patients/guideline... This is particularly important if you are being treated at a community cancer center and not a large university hospital.

Don't believe what you read on Dr Google. The stats are old. Lung cancer is a very scary disease, there is no doubt, but researchers and scientists have made HUGE strides in the last few years in making it a chronic disease.

I was just barely 59 when I was diagnosed. Not nearly so young as you, but my first oncologist thought I would live 4 months. That was in 10/2012. So, if you are given a prognosis that isn't very good, please remember that doctors really have no idea.

Remember that we're here for you and anxious to answer questions for you.

Hi there my name is Marge in 2000 I was diagnosed with lung cancer and here I am today. They went in thinking they would take the top lobe but ended up taking the whole lung and three ribs. I feel very lucky every day. I had to do radiation and chemo.it was all worth it. Think positive take care of those kids I ended up keeping busy watching my granddaughters every chance I got that helped to keep me busy.The one little one would ride in her stroller with a bandana on her head like mine and we would lay in bed she would rub my head. I feel very lucky every morning I thank the lord.

One more thing I cried every day also, it's ok you have a lot thrown at you at this time. In time you will be telling others how you felt at this time but got through it. You'll make it sweetie think positive. Keep your body as healthy as possible drink those protein shakes o keep your strength up. Rest when you can.

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