Dad just diagnosed...

[Aubree]

Hello all. My father just called me last night, and with the help of my mother broke the news as gently as he could that he has just been diagnosed with SCLC. It really doesn't seem real. My brother works in cancer research, and my sister is a nutritionist, and will both undoubtedly be supportive and helpful just by the sheer nature of what they do for a living and the fact that we are an extremely close family. I live, however, half a country away from my father, and don't have a career in anything that would be helpful. I have been told that just by being strong and loving my dad, that will be enough. How can I be strong when I feel like I am tearing apart inside every time I think of my Daddy going through the extremely hard (and painful) process of treatment? If there is anyone out there who can perhaps give me some words of wisdom, or some advice on the best way to be there for my dad, I would appreciate all you have to offer.

[Bev'sSister]

Hi Aubree and welcome.

Right now the information is so new to you. As time goes on and your Dad begins treatments your mind will begin to settle down. Just by coming to this site will give you invaluable information to pass on to your Dad and your family. You are not alone in this. My sister has sclc/ext. and if you will read my profile, she is doing pretty good. I freaked out when I found out, but have settled down and am able to come to this site and get so much support and advice..not to mention the information everyone is so willing to help with.

Take care and Pray a lot..and keep us posted.

Love,

Bobby

[MsC1210]

Aubree,

Sometimes just being the one who does NOT have all the background and knowledge is the best thing. You will be able to offer Dad so much in the way of encouragement and support of a completely different kind than your siblings. With each of you able to offer him and your Mom so many different types of support and HOPE, it will make this journey much more bearable.

Please also read some of the survivor stories and good news postings. There are so many wondeful people here who are surviving and thriving. There is no reason to think that Dad will not be one of them.

As overwhelming and upsetting as this is right now, it will get easier to cope once the treatment begins and things get into a routine. For now, just let your Dad know you are there for him, cheer him on and remember, there is HOPE..

Keep us posted

Sending lots of hugs and positive thoughts to you

Christine

[Adrian]

Aubree, firstly, I am sorry you have to be here, but welcome.

My sister and you have a very similar situation as my father was very recently diagnosed with stage IV NSCLC with brain mets. Leslie (who posts here too) lives in DC and everyone else is in LA. Our family has always been an uncommonly close and loving one anchored by my gentle and thoughtful father. I know its been incredibly hard for her to be away from dad.

When our old lives officially -- and out of the blue -- ended 1.5 months ago (seems like much longer) as a family we had to figure out how we were going to keep living in the face of our worst nightmare.

Like you, even now I am still coming to terms with the (un)reality of it all. At the same time, I am also trying to come to terms with the reality that this is the most real and powerful thing I (and my family) have ever dealt with. (until the day of dad's diagnosis I'd never had my legs cut out from under me in pain and sadness)

When the first or second wave of shock subsided, our family together had many conversations about how we were going to move forward. We concluded that even though everything is uncertain, we have to live (and adopt the mentality) that we are a family whose husband/father is and will continue to be a survivor. On the one hand, that has required us to be as informed as possible---but on the other, it has been to make sure that to the extent possible we embrace the day-by-day approach. No jumping ahead to what the outcome "has to be" and no more jumping back to "I can't believe this is happening." We know there will be good days (hopefully lots of them) and bad days: and there will be days when you are freaking out even though "nothing" has changed---and there will be days when, I expect, your siblings or mom---possibly your dad---will be doing the same. When that happens, your role will be to get them back to the place where they can move forward. Get them back to "today." There will be times to cry. Personally, I have tried to limit those to times when the circumstances, not my emotions as such dictate that its time to cry. (but certainly, a good cry from time to time feels great.)

Certainly your brother and sister will be invaluable resources in ensuring that your father receives the best treatment period---which is the treatment he deserves. but that doesn't mean they (your siblings) have all the angles covered---and that doesn't mean that you are disallowed from learning and questioning what is going on with his body if that is what you feel you would like to do. And above all, it doesn't mean that your role is any less important when it comes to keeping your family emotionally strong.

Finally, I should add, that in many ways it is critical to keep being the family that you've always been. My family has been one that has always loved to laugh and joke---my dad especially. In fact, the last thing he wants is for us to "mourn" him while he is in good health (cancer aside). So we laugh and joke about anything, even (perhaps especially)cancer.

Be strong. Please keep us posted on how he and your family are doing. What's your dad's staging?

[Aubree]

Thank you all for your very kind replies. I am already glad I am here. Adrian, I believe my father is in stage 3A. That was what I was told last night, and I believe that is the answer you are looking for. I know that he has a tumor on his left lung, and it has spread to some of the lymph nodes around it, though they don't believe that it has spread anywhere else. PET and MRI are scheduled for Thursday, so hopefully we will know more on Friday. I appreciate knowing that your sister is in a similar situation to mine. How does she cope with being so far away, and how does she stay well-informed? My father promised me that he will keep me informed of everything that happens, but I understand that sometimes things get lost on the way home from the doctor and before you can get to the phone. Thanks so much for your support. I'm afraid I'm having a harder time dealing with this than I would have hoped.

[Adrian]

You are handling it as well as can be expected. How can you not freak out at first? When I first found out about my dad, I felt like I was dying--rolling around on the ground in pain. But then you realize you're not dead, and neither is he, and its time to start figuring out how you are going to help in the critical effort to take back precious (lung) territory.

Seriously, IIIa is not the worst place to start---I'll trade you! BTw, as pointed out below, are you sure its small cell and not non-small cell?

As for my sister, I'll let her answer for herself as she will doubtless have something useful to add.

[karenlaureti]

Hi Aubree!

My Dad also has SCLC Limited. Are you sure they staged his cancer? Because Small Cell Lung Cancer is either limited or extensive. Anyway, I just wanted to tell you that My Parents live 14 hours away from me too. It has been difficult, but I believe that you will be amazed at the strength you will get for your Dad. I am a super sensitive person and my Dad is everything to me, yet, somehow when I speak with him, or am around him, I become a stronger person, like god knows I need to be. Try if you can to visit every couple months as this helps a lot. When I see my Dad and go visit, it puts me at ease. I know what you are feeling and will pray for you and your family. E-mail me anytime if you want.

[Aubree]

I just spoke to my Dad. You all are right, it's NON small cell. I wasn't able to process that detail last night I guess.

[missyk]

Hi Aubree and welcome to a wonderful place none of us ever wanted to be...and I'm glad you found us.

Don't worry about not getting the cancer type right the first time you heard it...We weren't sure with Mom for the first week or so because it rattled us so much.

The only difference I see in your family relationship is that Mom had all of her kids within 30 miles of her...but both my sister and I have a medical background and my brother does not and we are an extremely close-knit family. I actually think he had it easier (if there IS an easier in all of this) because he didn't LOOK at the statistics and nonsense the same way my sister and I did...he just kept loving Mom and THAT is the most important thing.

Learn what you can so you can advocate for your dad...but don't let the learning override loving him and supporting him in all the little ways that you can think of.

I'm so sorry you're having to deal with this from a distance, I can only imagine how difficult that must be for you.

Sending prayers and please, keep us informed on how you and your dad are doing.

[Leslie]

Hi Aubree--

I'm Adrian's sister. I'm so sorry to hear that you are going through this too. It is really, really hard being so far away. I'm in DC, my parents are in LA. I just moved about 9 months ago--right after getting married. We found out that my dad had Stage IV NSCLC the same week that I started a new job. (There have been a lot of changes in my life recently.)

I am lucky in that my employer is being very flexible--so I'm flying home every 3-4 weeks to visit. I also talk to both my mom and my dad several times a day--along with my brother. I think you will find that everyone has their own role to play in this horrible drama--and you will find yours as well. The most important thing that I think I've learned over this past month has been how critical it is to stay in the present. Cancer is a painful reminder about the fact that we never have certainty in life....even before cancer came into your life, you didn't have any guarantees. Cancer puts that into stark relief. Jumping ahead and trying to anticipate how all of this turns out is a dangerous exercise--mostly because, you really don't know what is going to happen....lots of people live with this disease and manage it as a chronic condition. And your dad can be successful as well.

I often feel that I am not in a position to offer advice to folks at this point--given that we are only 1.5 months into this and I am still learning too but please feel free to send a private message if I can help.

I will say that the one thing that has helped is to keep planning my trips home. I was there last week--and I already have my plane tickets for my next visit in 3 weeks.

While you may not be there physically, you can do family conference calls--you can send messages--and you can be in very close contact. My mom, brother, and I have found that the family conference calls are very, very helpful...

In strength,

Leslie

[Kirsty]

Hi Aubree

Yes that's a feeling we all remember - the instant transition from "it's OK" to "it's very definitely not OK". It does pass, but it takes time to get used to a new world. One thing I've found when keeping in touch long distance is that it's so easy to end up spending far too much time talking about the cancer and what it may or may not be doing this week, and not talking enough about living. However old your father is, and however much the disease is affecting him at the moment, there are options and choices. What he needs to know is that his family will support whatever decisions he makes. Don't for a minute think that just because you are a long way off, or because you are not in the health business, that your support and love aren't important to him. They are, and "being strong and loving" will be enough.

[recce101]

[ Aubree ] I just spoke to my Dad. You all are right, it's NON small cell.

Hi, Aubree, and welcome to the LCSC! I'm glad you got the small versus non-small sorted out -- they're two rather different animals, and it does make a difference in the specific treatments offered. But some of the terminology is weird, I agree, and I'm still trying to get parts of it figured out. When I first heard this non-small cell thing my reaction was "tell me what I HAVE, not what I DON'T have!" Next thing you know someone will be asking you what TYPE of non-small cell -- adenocarcinoma, squamous cell carcinoma, BAC (don't remember how to spell the first part), etc., because that makes a difference too.

You've already received some great advice from some of our best and brightest "been there, done that" and "am there, doing that" folks. Please post often, ask questions, and remember there is no such thing as a stupid question on these forums. The LCSC will be like an extension of your family. Best wishes and Aloha,

Ned

[Nova]

Hi, and glad you found this site. It's a very "comfortable" place to be when you find yourself in this nasty situation.

My husband was Dx'd in January with small cell -limited.

The first few weeks are all a blur to me now. It's wayyyy too much to absorb, so don't worry if you can't remember all of the information you receive.

Welcome here,

Nova

[dscherer]

Welcome to a wonderful site though I am sorry you have to be here. My mom was diagnosed in Feb 07 with sclc Limited. It is so much info to digest. I researched as much as I could. I asked lots of questions. JUst being there for support is the most important thing.

I send prayers to you and your family,

Dana

[fillise]

Aubree, I'm a daughter living about 8 hrs away as well. I called home every day for probably a month before my mom let me know it was too much! Now I'm down to a call every two or three days. You just have to find your way. Trust me sometimes your dad will want to talk with someone who doesn't throw all sorts of medical jargon at him. He will also need to talk about the normal aspect of life. There is much you can offer and don't underestimate the power of that love and support!

Susan

[ztweb]

Welcome. I am so sorry that you need to be here, but I want you to know you have come to a wonderful place.

Some advice...

Get all the information that you can.

Send mail...it will make you and he feel better.

Take cancer breaks. Cancer is a wave that hits you hard....and it is good to have some time where you say to yourself, "Today I will not let you rule me."

Read the good stories here for hope and peace. There are amazing stories here, and it can get you through the toughest days.

Come here to vent. We are here for you.

Love...love with all of your heart. It gives power.

If you are one who prays....do it, and do it lots. God grants amazing wishes, as can be evidenced by many here on this site.

Blessings,

Jen

[Aubree]

Thank you all so much for your replies. I had a hard night, and yet I feel guilty for saying that given what my father must be going through. I've been breaking out in hives, not sleeping, and feeling sick to my stomach, and I feel so guilty and selfish for it. I have actually been avoiding research thus far because I am truly afraid of what I will see, for I know there will be bad statistics, and given my level of stress right now, I don't think it's wise. Maybe I should. I'm at a loss of what to do next. I did find out that my Dad has Squamous Cell Carcinoma. Tomorrow he will meet with the radiologist, and have a PET scan and brain MRI, and on June 18 he will go to the Dana Farber Institute for his second opinion. I'm scared of tomorrow, but trying to be strong for Dad. I think I called him 10 times yesterday, but he didn't seem to mind. Thanks again for all your help, it is truly appreciated!

[Kasey]

Hi Aubree,

I responded to your Dad's first post the other day. I just want to let you know that I HAD squamous cell as well. I thought I read you mention SCLC. I'm not sure that is what you meant to say if he has squamous. I believe that would be NSCLC. At any rate, notice I said I HAD it. We will be able to offer more info once all the tests are done and a profile can be submitted. In the meantime, keep us updated as more info becomes available. Just know that this disease can be conquered. Keep the faith and don't get your cart before the horse right now.

Kasey

[Nick C]

Sorry you are here, but now that you are welcome.

Just be supportive. A lot of "whatever you want"s right now...it'll help the patient get better.

Hang in there, don't worry about the details right now, you have doctors, you have medical folks in the family...your dad will be well informed and taken care of, no doubt.

[Lady Salt]

Hi Aubree,

I am very sorry to hear what you are going through. Sometimes I believe that in some emotional way it is much harder to hear this kind of diagnosis for the people that love the patient than for the patient him/herself.

Trust me when I say that the best thing to offer is your ear. Call and ask questions and let him talk. He may go on forever about little things, he may not talk until you probe, and ask. You dont need any kind of degree to do that, in fact, having too much information and knowing too much may cause you to do most of the talking, give too much advise and listen too little.

That doesn't mean that you shouldn't get information. By all means, learn all you can.

Express your love often. In many occassions that will be enough.

I know it is hard but be strong, optimistic and positive. Please keep us posted!

[Aubree]

Hey Everyone. I just wanted to post to all that we got the results back for my dad's PET scan and his brain MRI, and the excellent news is that the cancer has not spread to any other region of his body outside of what they had already known, which is the upper lobe of his left lung and the extreme bottom part of his trachea. I have never been good with anatomy, so for now, until I see it written, that is about as accurate as I can make it (you can find him in the forum as well, his name is Rod - he has his history of dx written). There was additional good news that despite the fact that my dad had a two pack a day smoking habit for 35 years, and the upper lobe of his lung is completely collapsed, his lung capacity is somewhere between 85 to 90%. He is also in great health otherwise, and once my sister the nutritionist fattens him up a bit more, he will be in pretty good shape for when the radiation and chemo starts sometime in the next two to three weeks. He meets with a Dr. at Dana Farber Institute on June 18, so the future looks good for him. I have taken all of your advice very seriously, and have tried to just be there. We laugh and joke a lot! So if that is what my roll is to be, I am fine with that. We talk most every day, and I'm glad my cell phone minutes roll over from month to month. My sister-in-law will also help me pack care packages (she is a nurse) that are appropriate for the stage of treatment he is in at the time. I am also planning many small trips to visit every other month or so. Thank you again for your support, and I will keep you all posted as I get info. God bless!

[tjrasMOM]

Aubree,

I'm sorry you had to find this site...but believe me, it's blessing to be here. My mom was just given her confirmed diagnosis last week. We thought it was pneumonia. The first mention of cancer changed my life forever. I feel as though I'm barely ahead of you as far as a "coping stage" if there is such a thing. I'm scared, angry, pissed off, depressed, sad, guilty...you name it, the feelings are there. I do live very close to my mom and try to see her daily. There is nothing like watching a parent suffer. Especially when they are young....my mom is 59. This board has already saved me from MANY panic attacks....even though I've never experienced a true panic attack, lately I feel as though it could happen any minute. I was amazed at the support I received here. Some days I just sign on & read everyone's profiles.....sometimes I just read every post again and again. It gets me through the hard times. It helps to talk to others who are going through the same thing....I hope you find your strength on the days you need it....and I hope you allow yourself to cry on the days you need to let it out. Today is one of those days for me. But we start chemo on Thursday.....I've said again and again....it's time to get our battle gear on and FIGHT!!

[Nick C]

Around here, all that sounds like fantastic news, continued prayers for improvement on top of an already very good outlook!