Introducing Myself

[John75]

I've been lurking through this board for about a week but wanted to introduce myself. My mother was diagnosed in February with stage 4 adenocarcinoma with mets to the lymph nodes and brain. She had the brain tumor removed a couple of weeks later and is set to start radiation this week. Obviously this has been a really difficult time but its even harder because my mother does not want to ask any questions. She even cancelled her second opinion. The doctors are not very helpful at giving information and my family is afraid to ask difficult questions because my mother doesn't want to hear the answer. So far her attitude is good and we're afraid that hearing any more negative information will kill her strength right when she needs it most. I'm glad that I found this board because it seems like it will be a place to ask questions when my mother won't. Thanks for listening.

[MO_Sugar]

John,

You need to convince your Mom that in this case the more you know, the better off you are. She needs to know what to expect, what to watch for and what type of treatments offer the best results.

Don't be afraid to ask, get it set up with the DR. where they will give YOU the information if need be.

Knowledge is POWER!!!!

God Bless,

MO

[Donna G]

John welcome. It is good your Mom has someone looking for info for her. In the beginning it is very hard being told you have lung cancer, many of us feel we have been given a death sentence. It takes a while to come out of the fog. "Fog" can be good for a while to help with coping. Keep us posted. Donna G

[niececola]

Hi John,

I am sorry that you have to be here, but very glad that you found us. The first few weeks and months can be completely overwhelming when learning of a LC diagnosis. My mom is Stage IV, currently doing well on a clinical trial, so we are very hopeful at the moment.

Like your mom, my mom did not and still does not ask a lot of questions about her treatment. Her onc never discussed in detail her prognosis and my mom never asked. I think if she had pushed it, his answer would have been pretty direct, that is just the feeling I get. And there is no way my mom could have handled that information. But I was concerned b/c maybe she should know what the prognosis is or what the medical journals are saying, maybe she would do things differently if she had that information. My mom also did not seek a second opinion and pretty much left it to me to guide her. She still asks me what chemo she is taking. And I agonized about the second opinion, but for her, getting a second opinion was too much to deal with and she just wanted to proceed with treatment. So, basically I do all the research and come here often to make sure I have not missed anything. I still wonder why her onc will not do chemo and radiation at the same time, but have learned here that some get both together, some don't and for now, I do not push the point. Reality has slowly set in and we are slowly starting to talk about life issues, etc., which we never did in the beginning. It took a while to get to that point, but I think most eventually do, it has to be part of the journey. If the day should come that she is not responding to treatment and I feel her onc is not working his hardest for my mom, then the time will come to discuss other options and second opinions, but I think my mom would be ready for that now, where as 7 months ago she would never even consider it.

I am sorry for rambling on. We have been through so many changes in the last 7 months, ones that I would never want anyone else to face. But you are and you can get through it. If your mom is like mine, there is probably no point in fighting her about the second opinion, but if your mom is not going to ask the questions, someone has to. I asked my mom to let her onc know I was going to be calling regularly and I do. My mom also let him know up front she didn't want to hear any time frames, etc. and he has respected those wishes and has told me when and if the time comes, he will be very direct with my mom. And after months of worrying about doing the right thing, I am at peace with her "lack" of in-depth knowledge of her disease. For some, researching and being well informed are their way of taking their lives back and taking control of the disease, for my mom, it would be too much to take in, she knows she is in for a fight, even if she didn't say so in the beginning. And while not knowing what the stats are, which if you have not heard already, they are CRAP, outdated and incorrect, then she never has to push those nasty numbers out of her head and she can just focus on getting better and fighting.

If you are not comfortable with her doctor, than find another. Some have very different bedside manners, but at the very least what you can expect is an informed, thorough explanation from her doctor.

If you ever need to talk or have any questions, please feel free to PM me anytime.

Blessings,

Denise

[Don Wood]

John, glad you are here. You can get much info and support here, so avail yourself freely. But, your mom or someone (yourself maybe) needs to be able to ask questions about treatment options, what to expect, etc. You don't have to ask for a prognosis because they really can't tell you -- everyone is different -- and they will quote from statistics, which are not helpful. My wife was given 9 months (we asked), but she is already 17 months out and doing fine right now. But, you really do need to be free to ask questions and if the doc doesn't provide answers, your mom needs to seek another doc. Good luck Don

[Carla]

I am still struggling with the role of being the person that asks the questions and knows the worst -- I think at this point it makes sense for it to be me because my dad is too tired and still wiped out from the surgery to read up on stuff and my mom just doesn't deal anyway. When the surgeon first started telling us in the hospital (day after diagnosis) about this spinal tumor that was threatening paralysis (don't even walk to the bathroom) I felt my brain start to shut down and then something took over and I was able to listen to him -- whereas my mom saw that I was paying attention and let herself shut down for a couple of days. Well, the point is it is a hard role reversal because my dad has always been the person who is organized, knows what is going on, the one to whom we go for advice, so I feel funny taking over some of taht, even though I think they are glad to let me at this point . But I also feel wierd because although I know you can ignore the statistics, I don't think they have much of a grasp of how bad it might be, but then again maybe it won't be all bad -- I am the one to borrow trouble, although I know I shouldn't -- so we are supposed to have this meeting with the oncologist this week where we will get the game plan, and I will go armed with all the questions, and I guess that is how it is going to be for a while. I just hope I will have the wisdom to know when I am getting a good answer/bad answer/etc.

This is kind of rambling, too, but this post hit home because I think there is a certain amount of not hitting them will all the possible bad news that is not a bad thing although I don't want to sugar-coat anything, either. I plan on taking my cue from how the oncologist handles the discussion, I guess, and go from there.

[paddy]

Welcome John. I hope the radiation helps your Mom in her fight against this awful disease. Prayers and positive thoughts coming your way.

Paddy.