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My stepmom was diagnosed in late July with SCLC and in August found out it was in the spine. I don't know what to think. They told her there is no treatment, which is fine, but is on pain meds and other treatments for her bone strength, etc. It seems like since she found out she has just made a complete turn for the worse. Prior to knowing in July, she was happy and showed no symptoms. In the month and half since her diagnosis she has started having severe pain, can't stand up, has a hard time breathing, is super tired, etc. I want to help her, my dad wants to too, but to me I feel like her body is already giving up. I don't think she would admit that, and I don't want to put words in her mouth. But I don't know, is it possible to go that far downhill so fast? I just feel for my dad, he loves her so much and I want her to be pain free and happy as long as possible. My dad had a heart transplant 10.5 years ago, and I hate this stress on him. On top of everything he lost his job and insurance in Sept. He has found insurance to get him through until another job, but he doesn't have the money to keep it up for long.

Can someone give me some insight. Is this disease that bad that it spirals down so quick?

Also, if anyone has any advice on how to let a 5 year old know what is going on, I would gladly accept it. I know she knows something is up, but I don't know how to tell her or if I want to. But, that said we are going home in 3 weeks and she is going to notice grandma is acting different I am sure.

Thanks for any help,

Heather

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Hello Heather, Sorry about your stepmother's condition, but you have come to the right place for help, information, and support. I don't know the answer to your question about it spreading so fast to the spine. What tests or scans has she had? (CT, bone, PET?) I think that she should get a second opinion re: what can be done for her preferably from a cancer center. Don't know what state you are in, but there is probably one not too far.

Muriel

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Hi! My wife had a large met on her spine and they radiated it to relieve her pain and stop any further damage. Your stepmom might ask about that, and why they wouldn't consider it.

Yes, this disease can spiral down real quick in some cases, but linger in others.

I think your 5 year old understands more than you know. It may suffice to just tell her, if you haven't already, that grandma is very ill right now. If it gets near your mom's passing, you could then tell her grandma may have to leave you in order to get well. Keep it simple. Keep us posted. Don

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Heather -

I am so sorry. Yes, this disease can spiral down very quickly. It did for my mom who was one of the healthiest people I have ever known. I felt like we never got a chance to really fight it. She had radiation and chemo, and we never got a break. She too was stage IV with mets in the spine, and lost mobility quickly even with physical theraphy, etc.

It stinks. It really does. Radiation did wonders for my mom's pain...and when it reallt started to spread, the morphine drip made her "feel like herself again." The first priority should be to control the pain.

Have you spoken to the doctors yourself? educate yourself as that is probably the best thing you can do for your stepmom and dad.

Thinking of you,

Holly

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Heather:

I'm so sorry you are having to deal with all of this. I can certainly understand your concern with your dad and the heart transplant too! Good gracious!..... yes, the disease can spiral quickly. Sometimes I swear when the diagnosis is made, it's almost as if the body gets permission to bring on the fatigue, pain, etc. full bore -- it sure seemed that way with my mom as well.

I don't have any children of my own, but perhaps the following link might help you talk with your children about your situation:

http://lungcancercap.org/kids.htm

Many hugs and prayers,

Linda

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Heather,

I'm very sorry about your StepMom. Please read my profile, you will see all my husband has gone thru. I also question, who told her there was absolutely nothing to do???

Even though it has spread, SCLC reacts well to chemo and radiation. And I take it that she hasn't had any of these treatments before.

Talk to your dad and Stepmom, and if they haven't already, get another opinion! Have the hosp. where your SM is at and tell them you want one......

Also where ever your SM is going, ask to talk to their Social worker, she needs support - that's their job!!!!

SCLC does spread quickly, but with treatment, it can be held in it's place....

Also with your daughter, I know my girls reacted differently, when their grandfather dying of bladder cancer.

My youngest who was 7, was afraid to go near or talk to "grampy", it's ok. Sometimes if they're scared, a child may regress, my youngest is going thru some of that now with her daddys' cancer.

Just let her be her, she knows you're there w/ her.

Also if you can, can you tell me more, where are you located, what dr/hospital told your SM and dad that info. What other tests have been done.....

Please also know, this is a wonderful place to go for support and advice and to vent!!!

Grace

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About talking to kids:

I went with simple and blunt. No euphimisms. I said, Granddaddy is sick. He has cancer. He may die soon. He loves you. He is glad that he gets to see you now. The children handled it well. My son with Down syndrome knew this was important and kept saying Granddaddy. Chanting it over and over. It tore me up. I had to tell him again and again. But it takes him many reptitions to learn something and he KNEW he had to learn this.

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I am so sorry you are dealing with all of this right now.

I was as honest as I could be with my kids when Mom was diagnosed, without being overly dramatic. I tried to keep it fairly straightforward, but I was honest about my own feelings. I heard a speaker say recently that in helping our kids with such issues, it isn't what we SAY that is important, but how we LISTEN. Check in on their feelings, etc, without trying to force our own on them. Be open to what they have to say.

Prayers for you and your family.

:) Kelly

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Thanks all for your replies. As much as I have dealt with health related in my family, this is the first terminal cancer we have been dealt.

As far as I know, my stepmom has had a CT scan (which was what originally caught it as she was getting ready for sinus surgery in July), a PET, lung biopsy, and one other test on her bones but I forget what that was. Her daughter is still in treatment for breast cancer, so they have been attending the same cancer center in Ohio, which has specialists from U. of Michigan that come down. She had a second opinion appt scheduled but when they got the results back from the MRI the doc pretty much told her, here is the cancer and no amount of treatment that will put the cancer in remission, and because of what her daughter went through she doesn't want to do treatments that will just prolong the agony. Her doc told her with treatment 12-18 months, without 6-12. My sister has tried to talk to my dad about taking her to the Cancer Treatment Center near Indy, but they won't go. Right now, its not a case of treatment, just letting it run its course.

I understand why she feels the way she does about treatment, but in the same my dad will be heart broken and so will I and all her grandkids. But I don't want to come across as selfish either.

Thanks for letting me post here and for the feedback. Its hard to find a site like this, and I have really needed it. After the diagnosis I cried myself to sleep for 2 weeks straight. I know I will need your support towards the end too, thanks for being so welcoming!

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Hi~

Welcome. I wish we all would meet under better circumstances.

I would still get a 2nd opinion. Are you close to the Cleveland Clinic?

Here are some things that come to mind:

*Cyberknife- for spots by/on spine. Check out www.cyberknifesupport.org. They have docs who you can email and they are very quick to respond.

*Vertobroplasty-for vertebrae that is affected by cancer.

Keep us posted.

Kelly

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My dad passed away this year from Stage IV lung cancer. I don't post on the boards much but my 5 year old daughter was is only grandchild. She was the light of his life and I realized after awhile that I had to be honest with her. He was staying with us for the weekend and his breathing got so bad that he continuously stated he wanted to die and had to be rushed to the emergency room. She saw it all and I told her Grandpa is very sick but that doesn't mean he doesn't love you and you dont need to be afraid of him. I also told her that it was not the kind of sickness that any child could get so that she knew she could be by him. As he got worse the more scared she got but she would hold his hand, give him hugs and read with him but that was about it. I think she knew something was wrong but she still loved him with all of her heart. Just be as honest as you feel you can be without being scaring them so that they can be a part of what is going on.

Robyn

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Hi Heather,

I'm so sorry you and your family are going thru this. It is really hard, and I do relate.

I think the choice of not having treatment is your step moms decision, but it is one that should be made with all the facts laid out in front of her...

She knows how hard chemotherapy can be, she has seem someone suffer- but has she seen anyone survive? Has she seen the hope at the end of treatment when someone with her same diagnosis goes into remission?

Yes, the statistics are disheartening, but from experience and from just being right here on this website, I have seen people survive and be cancer free when they were given only months to live.

Talk with her about it. Give her hope, facts, and survivor stories, and then respect her decision and be there for her.

In my own experience, just watching what my dad went thru (and he lost his battle with cancer) if faced with that diagnosis myself 3 years ago, I would have said "no way" ....but since that time, I've seen many others go thru that same treatments and more and come up the otherside, cancer free and living life again! It can be done. And for me, I'd try, I'd give it my damndest because there is always that chance that it can be beat- because it HAS been beat by others.

Please keep us posted, and keep posting. We will be here for you

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Heather, I would just like to extend to you and your family my support and best wishes. It sounds like your stepmom has made up her mind and you have to find a way to deal with that.

I do however, think that all cancer is treatable as long as one has the strength to undergo treatment and I would get a second opinion before I decided to let the disease take its course.

Don M

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One more thing, I wanted to comment on your five year old.

My son was 3.75 when grandpa was dx. and a month shy of his 5th birthday when grandpa died.

During that time, I didn't discuss in too much detail the ups and downs of the treatment rollercoaster, but my son could tell, just by the way I acted, if it was a "good" day or a "bad" one.

I told him the truth, in a way that a 4-5 year old could understand. When he asked me if people die of it, I answered honestly and said- "sometimes." When he asked if Grandpa would die of it, I answered, "I pray not, or not today!" and then explained to him that we were going to live alittle differently than other people. We were going to treasure every single day, every single moment and have joy in all those moments, that God had a plan and we were going to love each other like crazy until it was time for grandpa to go and live with God.

Hope that helped.

I'm praying that your little girl sees grandma as a strong fighter who is going to beat her cancer!

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Hello Heather.

I apologize for not having seen your post earlier and welcomed you then.

I cannot add to the wonderful words of wisdom you have already gotten here. I simply want to extend my support and let you know you and your family are in my thoughts and prayers.

My best to you,

Chris

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Heather,

I know this is hard.

You should get a second opinion...many therapies do improve quality of life.

Re: a quick spiral, a friend had pancreatic cancer and was given 6 months, but lived a wonderful 4 years.

My mother was not ever given a "time line" But lived 1 month after diagnosis...but was fine for the first 28 days of it.

It can happen either way, maybe try as best you can to be prepared for both.

But either way I just said a prayer for you and your family.

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She really should consider at least radiation to relieve the pain of bone mets. Most of the people here have had a great deal of relief from the pain with relatively few side effects.

Just keep supporting her and your dad, regardless of their decision.

Best wishes,

Karen

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My thoughts and prayers are with you and your family now.

There was a time early in my Mom's fight that I told my Brother that if Mom only had a few months left, I would want her to pack as much living into the last few months as she could and forget about treatment. Mom was never given any time frame, she took every treatment option offered, and still packed a whole lot'a living in her last seven months.

Can you go with her to appointments? My Dad, Brother and I always went to appointments with Mom. And we always had a slightly different slant on what was said by the doctors. As hard as it is for us to wrap our brains around this, it must be even more overwhelming for them.

There was a period before my Mom started treatment that I tried to get her to ask for some anti-depresents to get her through the day because she didn't feel like doing anything. She took an anti-anxiety which helped her sleep and calmed her down when she got really worked up. Maybe that is something to look into. I think a good part of this battle is mental.

I hope you can convince your StepMom to get another opinion. But if you can't, as hard as it is, the best thing you can do is support her decision and support your Dad through it all. We always told my Mom that whatever her decision was, we'd support her 100%.

Take care of yourself.

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