Questions: Mother just diagnosed with extensive SCLC

[SC7454]

So, I stumbled onto this web site when I really needed it. My mother was just diagnosed with extensive small cell lung cancer (lymph nodes engaged in one lung, center of chest and above, neck, with spread to liver and some spots in bones). My mother is 52 and has never really liked her life, is not exactly a 'strong' person and is prone to depression. I however, am a completely different strong, analytical person and as soon as I found out...I dove into all the information I could find. Which of course, as you all know didn't spell out a pretty picture...but I won't lose hope. She was diagnosed last Wednesday and started chemo yesterday. The doctor has not shared the details with her yet beyond where it is (survival rates, details of how fast moving, etc.) because he feels that she is in too 'fragile' of a state right now...which I agree. However, she knows I know the details because of the research I've been doing. So, here's the dilemma...she's started asking me questions. If I tell her what I know, I really don't feel like she is strong enough to handle it and she will most definitely say 'screw it' or possibly harm herself (not exaggerating, that's just how my mother is). If I let her find out in pieces from the doctor (I asked him to start sharing more with her as we go along because she's in denial and I've told him she isn't listening to what he's saying), I know she is going to be mad and hurt and feel like I conned her into doing something she didn't want to do (the chemo). What's disconcerting to me is she is hearing things that the doctor never said. For example, the doctor told her yesterday that this treatment will help her and could extend her life. I took that as helping her symptoms and extending her life like he said. Later that night, she told a friend on the phone (I was there) that he said it could cure her. This upsets me, but I don't want to make her think I'm shooting down her hopes if I tell her more?? Which is SO not the case, it's not what I want to do. P.S: She does not use the internet, etc...so she looks to me for information/research. Thank you

[Shelleym]

My mom was diagnosed with extensive SCLC a little over a year ago. She was very passive person and also had bouts of severe depression, and my fears about her reaction to her diagnosis were similar to yours. After all, she didn't even want to go to the hospital even though she could barely breathe. But she surprised us all and decided that she wanted aggressive treatment.

I don't know what your mom knows about her treatment, but has she spoken with a social worker from the hospital? The social workers affiliated with the hospital where my mom was treated were invaluable to all of us. And the one who saw my mom regularly is the one who discussed her diagnosis -- and her prognosis -- with her.

Only you can determine whether your mother is strong enough to tell her the details of her diagnosis. But keep in mind that she might be stronger than you think. I never in a million years thought my mom would choose treatment after her diagnosis. She hadn't been to a doctor in about 30 years, and everyone was convinced that she would simply choose hospice care rather than invasive medical treatment. Just goes to show how people can surprise you when they're staring death in the face.

You and your mother will be in my thoughts.

[Don Wood]

Welcome! I can't improve on Shelley's excellent advice, and from experience. Don

[sharyn]

The mere fact that your mom "heard" something entirely different from her doctor... you heard "can extend life"... she heard "can cure you"... tells me ALOT...

This is my very strong take on it, Mom cannot deal with the possibiity that she may die. The way she is dealing with this disease is to feel she can be cured.Let her continue to believe this.... This is her coping mechanism taking over, this is her minds way of protecting her from something she can't handle... I hope I am making sense. I would not share any facts with her that would make her think she can not beat this... it would not benefit her at all. I am sorry to be so blunt and matter of fact, but I feel strongly about this. Sharon

[Addie]

First thought....when my mother was diagnosed 20 yrs ago with colon cancer...she was a bit of an ostrich about how serious it was. It has already spread to the liver and lymph system....and her oncologist gave me what I think is VERY GOOD advice, which may apply to your mom as well.

He said, "People will absorb as much as they can WHEN they can!" The point was to NOT force feed my mother the details of her situation. She'd start to "get them" as she was able.

My mother too, told her best friend, after surgery to remove part of her colon, that she, "Doesn't have cancer anymore. (She) just has *spots* on the liver".

Catch my point? Those spots were tumors. Mom wasn't ready to face that then...but later on, she did accept that she still had cancer. We let her come to it all in her own time. She lived 2 yrs. 3+ months with her cancer and this was a long time ago! Maybe her oblivion to some of it kept her around longer...who knows?

Now...from that example....I have small cell l.c. too, limited when diagnosed about 15 months ago. You can read my bio below....but I'm now on my second relapse and it's in my brain. I started radiation yesterday.

Statistics on the internet are DISMAL. I decided up front to ignore them, and rather just search for information about treatments, what to expect from chemo, etc. You don't have to tell your mother EVERYTHING you read and find out...because if she really wanted to know, she'd be sitting in front of the computer herself, wouldn't she?

But you can learn things that will help her get thru treatment....like drinking lots of water, staying hydrated. Also, keeping her appetite up and eating protein daily during chemo, as that is what rebuilds healthy tissue. If she doesn't have much of an appetite...then let her eat whatever appeals to her...even if it's only ice cream and Fruit Loops! The point is to keep her weight and strength up.

I'm sure you'll find it tough having to hedge the full truth of some of this...but you know your mom best and between you and her onc, you should be able to determine how best to help your mom through this while allowing her to maintain some hope.

Without hope, I don't know that any of us would survive this stinkin' disease...but other than spending a lot more time at my doctors, or masked/strapped to a table getting my brain toasted...my life isn't all that different than it was pre-diagnosis. I still play golf a little, I knit, I clean house (only when I can't avoid it any longer, though ) and other than being bald...people tell me I look and act the same!

Tell your mother to think of this as a chronic illness...nothing worse. You treat it as needed. Stay as positive as you can. That would be my BEST advice.

I hope some of this wordiness helped. I'm on steroids these days and it makes me.....ahem....chattier than usual!

Best wishes to your mom and you...and let us know how things go.

[daggiesmom]

This is tough being told you have such a horrible disease. You rock and real. You don't listen to what they tell you. You sit there and feel like you wanna just disappear. That's how I felt. Then, gradually, you realize that this is a Chronic condition that you have to adjust to. Go with your mom to her appointments, if you can, and listen, take notes. If she's not internet capable, fine, in her case, that might be good. Forget about statistics - they are outdated. Take it one day at a time, listen to the doctor and what he recommends and try and keep an "upside" to all of it. The treatments can work and extend her life. Many people here on the board have her same condition and are typing away!!!!!!! Please have hope, it's so important. Let us know how you're doing, ok?

Joanie

[Patkid]

Look at how wonderful our members are.

We have nothing to add to the above posts except prayer and support for you and your mom.

Brian and Pat

[SDianneB]

Sorry to hear of another person stricken with this beast, and I send my best wishes to your mom.

I'm with Shelley -- if you can find a good social worker, they are sometimes miracle workers with things like this. Also, if the place where she is being treated has a counselor, try that. Maybe it will help her to talk to a 3rd party before eyeballing with her own family. Whatever the case, social workers are often thought of as just people who help patients get on welfare or whatever, but they do SO much more, and may be of great help to your mom.

I want to know everything. And when I come across the statistics, as long as there is a 1% chance, I don't see any reason why I shouldn't be in that 1%! If I'd have thought to do it, it would be interesting to have a chart of all the different web sites and sources and compare all their stats on LC - we'd see amazing differences, I bet!

Many good wishes and prayers to your family.

Di

[bunny]

the input from Sharyn and Addie and Di and everyone else is so perfect. just know that I feel for you, and am praying for you. it's so hard.

xoxo

amie

[Ann]

Although I'm sorry to read of your mother's diagnosis, I'm really glad you found your way to our wonderful group. As you will find, this is a wonderful place to find information and support. My husband had sclc. Although he was always a very strong and optomistic person, he never wanted to hear about the statistics. He never asked the doctor how much time he had. I talked with the doctor and was given a time frame, but since Dennis never asked me, I never told him. Please, take some good advice and don't drive yourself crazy doing too much internet research. I did all of the research at first and felt completely hopeless and helpless when I would read statistics. Each person is different and each responds to treatment differently. I think you should just follow your mom's lead on this one. If you feel she wants more information, find a way to give it to her. If this is hard for you to discuss with her, I think a social worker would be wonderful. The fact that she is receptive to the idea of treatment makes me believe that she really wants to fight this monster and win. Just hang in there and give your mom lots of love and positive support. remember, someone is always here to listen if you need to vent!!!

[gerbil runner]

Nobody has a crystal ball. Your mother is young, and some people respond unbelievably well to chemo. My mother also has extensive sclc, and everyone in our family has been shocked by how hard she has fought. Chemo and radiation bought her a pretty good year before brain mets were found. Even now, if her onc. suggests chemo she will do it!

A good social worker could be a godsend. As for yourself, be honest when asked questions, but try to remain positive. Most statistics are woefully outdated. Be as supportive of your mother as you can, and treasure every day.

Despite complications, my mother has survived almost 2 years after diagnosis. She is firmly grateful for the "extra" time, and willing to fight for more. Your mother may do even better - she has little to lose with sclc by trying.

[Larry]

There's not really any thing i can add that has not already been said so i'll just venture and say your mother may have internal fortitude that could surprise you and good luck and were all hoping for the best.....