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Please help me
Hi

So apparently doctors went over the biopsy for my boyfriend. Contrary to what others doctors said. Apparently he's stage 4 lung cancer. It can't be cured. I'm probably going to lose him. I love him so much.... I'm so scared.... please someone help
32 Replies
Brighty
6271 Posts
ShadowDragon‍ my tears flow for you.. brings me back to when I received the same news..... I'm so sorry sorry. Our moderators may have some contacts or connections for you. Lacey_Moderator
Lianne_Moderator‍ ... thank you. For me I had a social worker as well as oncology social worker. You may also want to contact the cancer info line at 1888 939 3333. Please make sure you are not alone now. Is anyone with you??????
ShadowDragon

I'm very sorry to hear the news. I can't imagine how you must be feeling.

Brighty made a great suggestion to reach out for support. Our Cancer Information Helpline are great listeners and can try and help you find support.

Even when not curable cancer can sometimes be stabilized and people can still have good quality of life. Take it one day at a time for now. One hour at a time if needed.

Hugs,
Lacey
ShadowDragon

I am so very sorry to hear of the updated diagnosis. I can only imagine how hard this is for you and all involved.

Please continue to reach out here as you need and as suggested above, to other resources as well. And Lacey_Moderator‍ makes a very good point about quality of life. We have many members living with a stage 4 diagnosis. It is early days. Try not to get too far ahead and be kind to yourself as well.

Big hugs

LIanne
Kims1961
2002 Posts
Hello ShadowDragon

Brighty‍ , Lacey_Moderator‍ and Lianne_Moderator‍ have some great ideas around supporting yourself and your boyfriend . You don’t have to do this alone. Knowing the exact stage and plan can help moving forward. As suggested, these are still early days and people are living longer with stage 4.

How is your boyfriend managing?

We are here for you. I am so glad you have reached out. Kim
Cynthia Mac
2927 Posts
ShadowDragon‍ , I, too, am sorry to hear about your boyfriend’s diagnosis. I hope they will be able to offer him treatments that will work well for him.

I know how devastating it is to receive this news when it’s someone this close to us. Keep putting one foot in front of the other. I know how hard it is to think “this is it,” but it isn’t “it” yet: there is still time, and there is still hope.

Try to keep that in mind, and know that we’re here — to listen, to support, and offer tips about things that helped us when we were where you are today.
MCoaster
416 Posts
ShadowDragon

This is such upsetting news. My heart goes out to you. Things have happened so quickly that your head and heart must be spinning. So many questions and not many definite answers about what the future holds but try to concentrate on the now and let him know how much you love and are there for him. As Lianne_Moderator‍ says many members here are living with stage 4 and he has youth on his side.

You mentioned in your first post that you had other worries. Have you spoken to the university about what is happening? I know that they have counsellors who may be able to help so that you don't have to worry about school as well.

Take care and we are all here.

Big hugs.

Margaret / MCoaster



CD74
5 Posts
Hi Shadow Dragon,

You are not alone. I am going through the exact same with my father, what was originally the early stages have suddenly turned into stage 4. I love the support in this group. There are some warriors in here stay focused on right now. Day by day....♡
JenG
17 Posts
ShadowDragon

Such a terrifying time for you and your boyfriend. I’m so sorry you are both going through this. As others have said, you’ve come to the right place.

I’m here to offer some hope, even though I don’t know the details of your boyfriend’s case. My mother was diagnosed with stage 4 lung cancer in 2018 at the age of almost 91. We thought that was it, game over, only a few months to live. The doctors didn’t say it but they also didn’t say we were wrong. No one seemed to know what was going to happen and they wisely didn’t commit to one outcome or another. She is now 93 and still managing! She still lives independently. She still texts and uses FaceTime. She still makes her own meals, though now she has more help from family. In all likelihood it will be old age that catches up to her and not the cancer.

She started with immunotherapy and then switched to a lighter chemotherapy.

There is hope! It is easy for us to go to the worst place possible and think the end is near. But it might not be. And you can grab on to that might with all you’ve got and take it one day, or one hour, at a time. You can do it.

Take care of each other.
Jen
Kuching
217 Posts
ShadowDragon‍ , take a deep breathe, it ain’t over till the fat lady sings. I have had stage 4 lung cancer for a year and a half, and I’m still leading a normal life. Others on here have lived with this disease for far longer. The statistics you will see online are out of date, the game has changed a lot in recent years.

Stage 4 means it has spread to other parts of his body, which means surgery probably won’t be an option any more. Have they done genetic testing on the biopsy? He could be eligible for either immunotherapy or targeted therapy, which would be good. Yes, it’s not curable, but it’s not a death sentence either, more like a chronic disease.

This is the worst part, waiting for test results and getting a treatment plan. Once he starts treatment, things will settle down. Give each other a cuddle and hang in there!
Mammabear
118 Posts
Hang on... yes stage 4 cannot be cured but there are a lot of treatments out there. You might not lose him just yet. There are many on this forum with stage 4 lung cancer WestCoastSailor‍ - heck one is golfing pretty much every sunny day (I don't know the fellows tag but he attends the Metastatic Cancer Support Group that meets every other Friday via zoom in BC). Trials and drug options mean that those of us with stage 4 cancer can live - not forever ... but we are not losing the battle today. Find out what the treatment options are to make him comfortable and stabilize him. Stable could be your new favourite word.
ShadowDragon

Wow. That jumped fast. I 'member the day that my Stage 1 breast cancer went to stage 3C lung cancer. Shock doesn't describe it. I got handed all these things about planning for end of life, and given all these awful statistic numbers. I was in a daze for a few days. Breaking the news to folks I loved was hard. But they rallied around me. I knew my first job was to get through the initial treatment.

My wife and my kids had some hard conversations with me. What I wanted my death to look like - brutal conversations. Lots of tears. How I wanted my affairs handled. But once I got those out of the way. I wanted two things. To give myself the best chance to live. And not live like my cancer diagnosis was my life.

So practical realities like eating, sleeping, exercising, and reducing stress became important. I don't golf but I started running a few months ago and I'm up to 5 to 10K a couple of times a week. I found meditation to be a great help in handling stress and ensuring that I sleep well. I have always eaten a varied diet in moderation so not much to adjust there.

I realized that if I was going to paint I better get at it. And I have always written and so with the encouragement of friends I'm doing that too. That's not everyone's cup of tea. But the point is to make memories and to live life.

I'm crying as think about the challenges of facing this disease so young but the trick is to keep living as the treatments just keep getting better and better. By the way, I was diagnosed in May 2018 so I'm coming up on three years. While that may not seem like much, the numbers that I was given say it is about twice as long as I was supposed to live.

Courage.

Angus
We are in the same boat, I have lung cancer stage 4 as well. I am dealing with anxiety and worring can I see the sun when I got up. once I realize we have the best medical system, they will do the best to make us well if they all power. trust them. meantime, prepare if the worst come, let it flow, and all will die, we just go sooner with rest. but at lease you feel better without anger but peace. and enjoy every moment you have. to me is important now.


James
dunder70
3 Posts
Hey ShadowDragon‍ ....from what I know now, cancer can't be cured but it can be stopped from going any further. Don't give up hope! It's ok to be scared but it's not the end. Don't give up
Cynthia Mac
2927 Posts
Kuching‍ , I really appreciated your perspective that living with stage 4 cancer is more like living with a chronic illness.

When I first started here on Cancer Connection (almost 3 years ago), I learned that, thanks to advances in treatments and medications, many patients were surviving well beyond what they would have if they had been diagnosed even a decade before.

It’s something I wish could be more widely known. And, if your perspective could be shared with more people, It could alleviate or avert so much fear and heartache.
Kuching
217 Posts
Thank you Cynthia Mac‍ . But I have to confess that I got the “chronic Illness” idea from WestCoastSailor‍ , so thank you Angus!
MargHP
12 Posts
ShadowDragon, thinking of you. I always tell people to live their life, not their disease. Try to enjoy what can be enjoyed in life. Don't go to the dark side, try to stay positive and continue your love and support. The other comments here are very helpful.
LG
1 Posts
You are very wise to have reached out. I hope you keep sharing your feelings with as many people as possible as much as you can.
At times, you might also want to speak with a Social Worker/Therapist with your boyfriend.
Sending good wishes.

LLG


Hi Everyone

Thank you for your kind words and encouragement. I really appreciate it. It's kind of shocking to go from thinking my boyfriend has 1 or 2 stage that is easily treatable to finding out it's actually stage 4. And it's definitely not something we expected to be dealing with at this stage in our lives. Him, his family and I are all kind of emotionally distraught but we're starting to cope and get through. I've gotten in touch with a counselor for myself in terms of getting through this. And like many of you said, it's not the end completely and there's still treatment that can slow it which is very reassuring. I'm wondering though, how do you all fight off the bad thoughts and live each day one day at a time when you don't know how much time could be left? This is something I'm especially struggling with and my boyfriend is as well. As well how do you stay positive when things seem dark?
Brighty
6271 Posts
Hi ShadowDragon‍ ..been thinking about you. I'm glad you are starting to cope and you got a councellor for yourself. I hope the many lung cancer patients thst came on the site were able to give you some hope. Fighting off bad thoughts is very difficult. .....it's basically like retraining your brain. You won't always be able to do it at all times. That's ok. My therapist got me doing a gratitude journal. I had to write down 3 things a day thst I was grateful for. This was to get my mind out of being totally negative and focusing on negative thoughts all day. I had a roof over my head....good family support....sweet little kitty cat......things lile that......can you come up with anything for today?
no one one knows how much time any of us has left. I tried to shift my thought to 'he's here NOW.'. So I'm going to make the most of now. When he had a good day,I had a good day. Then I tried to make a cancer free Zone for him and talk to him about normal every day things. The hockey game, watching Family feud like we always did. ..trying to keep some normacly even though nothing was normal any longer. When thoughts went dark again I would shift my thoughts agsin to treatment and treatment plan and how good his health care team was and how he was in good hands. This brought me a bit of comfort too. Then the thoughts would go dark agsin...I would look at pictures of my cat to make myself laugh....then I went for little 'pick me up 'treats ...favourite latte at Starbucks. ..favourite ice cream treat. ...basically ANYTHING that would prevent me from landing in that dark place. Exercize and eating right is a must. Then when thoughts went dark once agsin, I had a list. The list was numbers of people I could turn to. My parents number. .my therapist number. .and even the suicide hot line if need be. Just knowing I had that support safety net was also a huge comfort. We can also be your safety net. It's not easy but you can do this. You are not alone. Is your boyfriend also seeking councelling? Mine was not into it but I found it extremely helpful. Please be in touch was us to let us know how you are coping.
Cynthia Mac
2927 Posts
ShadowDragon‍ , I, too, am relieved to hear that you are “getting your head around this.” It’s big, I know. It was big for me when my Dad was diagnosed at age 78, so I can only imagine that it’s even bigger for you, in your 20s.

Brighty‍ Has offered you some great coping strategies, and I’m going to offer some of what I used, too. As Brighty mentioned, journaling is helpful - you can “dump” your feelings onto the page.

I used deep breathing - it was something I could try and get Dad to do, too, but he wouldn’t “play.” You might have more success with your guy, than I did. There are a lot of good deep breathing apps out there.

Speaking of apps, I also used a yoga nidra app to help me fall asleep at night. That or guided relaxation really helped me get to sleep on stressful nights. And, I used Google calendar to help keep everything straight - I colour coded all Dad’s appointments, and used green for my “fun stuff” and my own self care appointments. Some days, just seeing that little green dot on my calendar gave me a reminder that something good was coming! And, I think we’ve already covered this, but when the pandemic forced us to be physically distant, video calling became an important part of our lives. A lot of people now are doing “family game night” via video calls, and it’s a technology I’ve become increasingly grateful for!

I hope some of these ideas help, and that you come back and give us updates when you are able.
Joybell
12 Posts
oh child, I am so sorry to hear of your pain and your boyfriend's diagnosis. Hold on and know there are waves of love and light coming to you both. I am sure you are getting tons of advice but realky all we can do as caregivers is hold on and keep on loving. Let the love kick back the darkness, let the music soothe everything and try to just deal with one at a time. Maybe one day, maybe only one hour at a time.I am wishing you guidance, love, hope and light. Praying for your sweetie. Be safe.
ShadowDragon

​​​​ I was also diagnosed stage 4 lung cancer before Christmas and I consider myself fairly young being in my early 40s. This came as a shock of course but I have been reading a lot and educating myself and we younger people have luck on our side as we can handle treatment better. There were so many new treatments available within the last few years for lung cancer patients, so this brings me hope. As you say, we have no clue how long this will take us, but I remember that we are not in control and I am learning to enjoy the little things, and if I want a big cinnamon bun at 3:00 p.m. - so be it - it's all about taking care of yourself, whether it means doing something that makes you happy, taking a nap, walking outside, even for 10 minutes, snuggling with a good movie, meditating, whatever works for you and brings you peace and joy. Easier said than done but we are learning as we go.
​​​Hugs

Catherine
robegree71
32 Posts
Read what WestcoastSailor has to say. I said before, it isn’t a death sentence! It sure is depressing and creates lots of anxiety but that will become less and less with time and education. The more information you can get through reading, here and doctors will help you and your boyfriend.
I can recommend a great book, Radical Remission by Kelly Turner. Angus talks about exercise etc. and this book goes into a lot of detail in changing or supplementing his lifestyle. I read about MBSR a great stress reduction program in it which includes Meditation that Angus mentioned. It is on line and free. You can go at your own pace and do it together if you can but try it. It will help give you focus, insight and distract you from all the negative thinking that is next to impossible to avoid in the stage you are at.
Like Angus, reading your story takes me back to those dark days and Cancer was always in my head. I still think about it almost daily but then I sitting here thinking no I don’t! I started living again.
I am a big strong man, never gave up on any challenge in my life and can’t tell you how many times I cried myself to sleep when I was told I had lung cancer and couldn’t get back to Canada for treatment. I am alive and am dealing with this disease the same way NOW.
Keep talking to the people you have met here, we are all knowing what you are experiencing and it will start to get better. Never fast enough or soon enough but it does ! Look how far you have come from your first time you wrote on here ! Please update when you can and learn as much as you can. I am not a very religious person but praying for you guys. Keep believing!
ws33
27 Posts
I echo what most friends have said already. The treatments have advanced. Stay positive, don’t give up. I found talking to someone help, I talked to my friends, the social workers, the palliative nurse of my dad. Their advices were all very helpful to me at the time. My best wishes. Take care
law
385 Posts
ShadowDragon
Although my words are echoed by all your loving replies, I am saddened by the diagnosis of your 'main squeeze'..
You and he are coping and the suggestions from Lianne + Lacey are wise----unburden yourself to a counselor who may better guide you.
I send you virtual hugs of support and wish you both positive trust in life and fate.
law
Brighty
6271 Posts
ShadowDragon‍ how have you been doing?thinking of you.
Hi Brighty and everyone else who's reading

I'm still here. Dylan started his targeted treatment a few days ago. So that's good. I'm still in emotional turmoil. There's a lot of changes I'm still adapting to. And some of the changes make me a bit angry and even jealous even though those emotions are irrational and I try not to act on them. I'm also starting to feel like I'm being less supported in the relationship but that's understandable given the circumstances. Both Dylan and I also feel very irritable lately it seems.... it feels like we've both been robbed of a proper relationship... and I don't know how to fix this.... like I know we won't have a typical relationship but how can I make it one where I don't feel like I can't be supported by him anymore or that I have to sacrifice a lot of intimacy and romance. I tried talking to him but a lot of the things I have problems with are kind of out of our control and the only thing I can really do is accept the situation. Leaving is not an option but I'm starting to feel pushed aside in the chaos.... I'm hoping things get better.....
Brighty
6271 Posts
ShadowDragon‍ I totally 100 percent get you. I went through the same thing... I'm going out now but I will be in touch when I get back.
Essjay
1375 Posts
ShadowDragon‍ good to hear that treatment has started. I am sure things are a bit up in the air as you settle into a new routine, but you will get into the swing of treatment and dealing with the side effects.

I encourage you to look to your needs, and to make sure as many of them are being met eg. Time with friends and family for in person time where you can, or online if that’s how it has to be - you need people to talk to, and you need time away from cancer. I used to send my husband camping with a mate when I was in treatment to give him a break, and it did him the world of good! Massages, time doing sports - all important stuff that will keep you strong physically and emotionally.

And you do need to talk to your boyfriend...what do you need from him? When I was going through my breast cancer treatment our intimacy was different, but there was lots of physical contact which was important to both of us, but him especially. There were things like he had to help me with dressings so he saw my bruises which made me feel vulnerable, but he needed to be there and I needed him. He shaved my head, he helped me work out where to put my fake eyebrows. We had lots of icecream and cake (his favourites) because that helped him manage his stress. And we made a big effort to make memories through this time so it wasn’t all about treatment for either of us. Post-treatment, we have learned to be honest about our feelings. We go through my ‘scanxiety’ together, if I have something I need checking out, we worry about it together and celebrate when it disappears or is nothing. Likewise for him - he shares his health issues and worries and we work things through together. We have recognized that our time together is precious and we talk more than before - over meals, in the car, and we share what we are doing when we are apart far more (we let each other into our non-couple lives).

What this looks like for your two is personal, it’s your journey, and none of us can tell you how to make things work, but central to it all is communication. If you can communicate you will find a way.

Best wishes, Essjay
Brighty
6271 Posts
ShadowDragon‍ hello agsin. Essjay‍ said it perfectly. Communication is number one. I can't remember of i asked you already if he's willing to see a councellor? My guy was not. So I went myself. I'm so terribly sorry you have to go through this. But we are here to support and listen. And your emotions are your emotions. .you are allowed to feel whatever you feel.
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