24yo SCLC

[Dan_theman84]

Joined the Marine Corps at 18 years old and after 5 years of honrable service was discharged this February right after my 24th birthday.  
April 15 my doctor diagnosed me with Small Cell Neroendocrine Carcinoma of the lungs extensive stage, a very rare cancer especially for someone as young and healthy as myself. 

Ive always been extremely optimistic through out my entire life and i even approached this situation with positivity. I constantly tell myself that im not statistic but lately my prognosis has been mentally beating me to my knees,  ive lost whatever hope and motivation i had when i started. 

I desperately want to "live like i was dying" but i lack the purpose and the drive. Does anyone have advice on how to find joy in the moment and take advantage of the time you have left? 

Thank you so much for taking the time to read this. 
 
 

[hope16]

Hi Dan

I a. Very sorry about your diagnosis. But try not to beat yourself over enjoying life etc. There are stages of our grieve. First we go into shock, then denial, anger, sadness and then acceptance. It's OK to fear. Go to someone who you love the most be it your lr parents, siblings and cry your heart out. It's perfectly alright. Give yourself sometime. And then look for hope. Since you are very young, go for aggressive treatment. Ask doctor for the most aggressive chemo etc. This is your life and you are going to fight for it. You are in my prayers. 

[hope16]

I would also like to add that its only your actions, your karma which you have your control on. The end result is something that no human being has any control over. So focus o. The present. Focus on your treatment. Forget about the end result. You have to give your 200% to your karma. Leave the rest upto God if you are a believer. That's how I am coping right now. Let's do what we can and forget about what we can't do. 

[Steff]

Hi Dan,

Welcome here. I am sorry you are here, but glad you found us.  II have a sticky note on my computer screen at work that is a reminder to me, it says: Yesterday is gone, tomorrow has not yet come, we only have today, let us begin.  It's been there for a year.  It's tattered and worn, but it's still there reminding me to live in the now. It's a good reminder for when I sit down at my computer first thing in the morning. 

That being said, I am not the one with cancer, my mom is.  So how does someone with cancer deal with the fear, shock, and grief?  I don't know that there is 1 right answer for everyone.  For my mom, her way of coping was to let me do all of the research (I was going to anyway!) and just follow doctor's orders (and mine!). She still can't tell you what type of cancer she has and doesn't know any of the drugs she has taken in the past.  Her job is to stay healthy, that's enough for her.  My mom was diagnosed in November 2015. She is now battling a recurrence.  I know that she has stopped obsessing over her most recent diagnosis because it does not come up in our daily conversations anymore.  I also struggle with the feeling that my mom is not living her best life - I want her to be out doing the things she loves ALL OF THE TIME. But she can't. She's had to put a lot of things aside, not because of lung cancer but because my dad is disabled and she cannot leave him for long periods of time like she used to be able to.  So her best life has had to change and looks a lot different.  And that's okay, but it doesn't mean she doesn't long for her "old" life.  The fact that you are struggling to "live like you are dying" is okay.  You are trying to find your way in this stressful life of being a lung cancer survivor. You are grieving the loss of your old life and likely nervous for your new life - that's okay and totally normal.  I think what's most important is that you are thinking about it and wanting to do something about it.  I honestly think it will come with time. You've had 2 HUGE changes in your life recently - discharge from the Marine Corps and lung cancer diagnosis.  If you weren't feeling lost at times, I would think you were weird!

Now, I've never been in the military and am pretty lazy when it comes to committing to something too strenuous.  I would imagine there were some very hard times while you were in the Marines, correct? How did you deal with those times? How did you make it through 5 years of being away from family and friends while risking your life for us?  I'm wondering if some of those skills might be helpful now?  Again, I don't know, just a thought.

I hope at least something I have written is helpful.  If not, just know that we are here for you.

Take care,

Steff

[BridgetO]

Hi Dan and welcome.

I'm sorry to hear about your diagnosis with this rare and advanced SCLC. I'm not military and my cancer was not advanced, at least my lung cancer wasn't. I had a prior non-lung cancer that was rare and advanced (stage 3) with a "poor prognosis" . I opted for aggressive treatment and here I am 7  years later with no evidence of disease. 

I expect you'll hear from Tom G on these forums. He's retired military and a long term survivor of advanced non-small-cell, lung cancer, really knowledgeable and a source of wisdom about survival.  I suggest you post on the SCLC forum and maybe you'll find someone else who has your specific diagnosis.

Hang in there.

Bridget O

[Tom Galli]

Welcome Dan,

Your cancer is indeed rare and while all lung cancer is deadly, your's is especially so.  That said, what are you going to do Marine?

Rule number one of ground combat is to know the enemy. My research of small cell (be mindful I'm not a professional researcher but a retired soldier) suggests it is vulnerable to precision radiation, even in extended stage presentation.  Precision radiation -- IMRT, IGRT, SBRT -- is very narrowly focused gamma rays that are computer-guided to fry tumors. Here, read this.  If it were me, I'd seek one or several consultations with radiation oncologists.  Precision radiation oncologists are like surgeons in that the treatment has the same effect as a surgical resection. Precision radiation can be risky and some practitioners may shy away from treatment.  But I'd get an opinion from more than one and not less than three. Of course, you'll likely also receive chemotherapy.

Here is another avenue of approach.  Dr. David Schrump leads the National Cancer Institute Intramural Cancer Program.  He is using unconventional treatment methods to discover new leading edge treatment.  If it were me, I'd engage with your Utah medical community as a frontal assault and would simultaneously assault your lung cancer's flank with Dr. Schrump.  Send an email to jan.pappas@nih.gov 

You can read more about Schrump's NCI program here.

More questions. This is the place.

Stay the course.

Tom

[Judy M.]

Hi Dan

As others have said I'm sad for your diagnosis, but glad you've found us. I'm a stage IV Adenocarcinoma patient diagnosed January, 2017. This community had been of great help to me, and I'm sure will be to you also. 

As far as dealing with your diagnosis that pretty much throws all of us for a loop in the beginning. Good for you that you're already seeking how to regroup mentally and emotionally. I listened to a talk by a woman who had survived 7 years with an aggressive breast cancer early on after I was first diagnosed. Something one of her doctors said to her helped her and has helped me also. He said, "The cancer is going to do what the cancer does, the doctors are going to do what the doctors do, and God is going to do what God does. All you have to do is mind your joy." I can tell you from my experience of the last almost 2 years that cancer may shorten our lives, but can also give us great joy in the day by day. So, my advice is to mind your joy. 

Judy M. 

[Susan N.]

Hi Dan,

I am sorry about your dx, especially at a very young age. However my doctor said young age is an advantage.

You will feel better with the time. I wish you all the best.

Susan.

[Leo]

Hi Dan , sorry to hear your news.  I was diagnosed with SCLC (Limited Stage) in October of 2017. After 4 rounds of Chemo (Carboplatin and etoposide) with concurrent Radiation to the right lung I achieved NED status (no evidence of disease) at the end of January 2018. I have had two rounds of surveillance scans (every 3 months) and have been Ned now for 6 months. Each person is different of course and there’s no guarantee but there are treatments that may help and the recent approval by FDA of immunotherapy drug Opdivo for use on SCLC is a very recent advance in treatment for some people particularly with extensive disease. Can’t imagine being 24 with this. I was devasted at 63 ..but was fortunate to have my disease caught early. . This group is here for you. There are not many with SCLC on here but plenty of support despite the rarity of the cancer we share. Reach out here any time if I can be of any help. ...

[ColleenRae]

Dan,

I am new to cancer myself, so not yet equipped to offer you advice on anything - spiritually, medically, etc. 

I will say, however, that this is a good place to be. Even if it is online, I believe you will find a lot of support and excellent suggestions from others who have walked this path before you.

My heart breaks that you are only 24 (I am 60) and having to experience such a weighty life experience. Being a marine, I'm sure, has made you a strong individual. As Judy posted above, try hard to find and retain your "joy" in life.  I know it is difficult, but I am seeing that is a legitimate piece of advice. Tom G.'s advice / recommendations regarding getting opinions and who to contact is invaluable. Run with that info as fast as you can. I believe you can fight this.  I hope you have family and friends to lean on during this time.  My thoughts and prayers are with you.

[OrrinHill]

On 9/10/2018 at 3:39 AM, Dan_theman84 said:

Joined the Marine Corps at 18 years old and after 5 years of honrable service was discharged this February right after my 24th birthday.  
April 15 my doctor diagnosed me with Small Cell Neroendocrine Carcinoma of the lungs extensive stage, a very rare cancer especially for someone as young and healthy as myself. 

Ive always been extremely optimistic through out my entire life and i even approached this situation with positivity. I constantly tell myself that im not statistic but lately my prognosis has been mentally beating me to my knees,  ive lost whatever hope and motivation i had when i started. 

I desperately want to "live like i was dying" but i lack the purpose and the drive. Does anyone have advice on how to find joy in the moment and take advantage of the time you have left? 

Thank you so much for taking the time to read this. 
 
 

Hey there my friend. Please to meet you. Sept of 2018 I had a cough and a lot of congestion working as a paramedic. I was diagnosed after an exray of the lungs as having an neuroendocrine carcinoid lung tumor with other spots. I had the lobectomy and now they will monitor me. I felt the worse waiting to be diagnosed. After I knew I excepted the worse scenario then hoped for the best. I found it helped me to realize I had cancer and could die but we are all going to die of something. Sometime and somewhere. But not today. Right now we have and no one knows beyond that. I control what I can and except what I can not control . You can control if you live , fight, and find enjoyment right now. I was upset cause I was a paramedic for over twenty years and thought this is not fair. But guess what , cancer is never fair. But love is . Reach out and except the love others offer.  We are lucky to be here to live today. This site offers a lot of information. I found links and a doctor speaking at a seminar in New York . He explained a lot and a lot of the symptoms I was feeling that my oncologist was dismissal of. I found that helped a lot. I am always here to talk listen or help in anyway I can  . Pleased to meet you my new friend.