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Long time reader, first time talker


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I have been reading the posts daily for about eight months now but wasn't sure how to ask my questions. My siutation is quite different than anything I have read. My mom age 62 was diagnosed Nov 03 with a carcinoid tumor and "spot" too high up in the lung for a biopsy. They went into to do surgery and the "spot" was a cancer free floating lymph node. Good news but, when they tested the other lymph nodes they came up with NSCLC origin unknown. So surgery was stopped and she was left with the carcinoid. She left the hosp in Jan of 04 on 4liters of Oxygen which she remains on. Her six weeks of Chemo and Radiation was concluded in May of 04. Since that time CT and x-ray have shown a spot on the adrenals a spot on the liver and recently small plueral effusion and pericardial effusion caused by the radiation? She also has developed CHF after all of this. She can walk only short distance and then is very winded. She sleeps constantly. She never was able to go back to work after her surgery.She was told she is not a canidate for any trials because of the two different types of cancer.

My questions is that they have done NO OTHER treatment or even seem concerned about the new spots. She has now lost 20lbs in the last six weeks but she still eats good. She is slightly confused but is managing well. I read statistics and she should not be here let alone doing so well. Should I be more aggressive and ask her to have more tests to see what the new things are? Or should I let this go since she has the attitude that if she doesnt know than it isnt happening. My fear is that something has been misdiagnosised or that maybe realistically the new things don't matter in the big picture or what if more can be done? What do you experts think?

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Wow, that is a hard question for me. I really don't know what to tell you.

Have you received a 2nd opinion? I hope so because that has helped so many people. If not you should definetly get one.

What town do you live in? Maybe someone on here can recommend a doctor or cancer hospital they feel could help her.

You can post your question to ask the experts on this forum. They may be able to help you.

All I can do is send prayers to your mom and hope that she starts to get some positive results.

Keep us posted. So glad you decided to come out for the shadows and join our group.

Hopefully, someone on here can help you with her 2 types of cancer issue.

Maryanne

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Hey Becky, and welcome.

It's good to hear you have been finding comfort in reading messages on the board, and it's nice to see you finally post. My advice is to be aggressive with your questions and your search for answers. In my experience here, I have seen this is not a disease you can play a waiting game with. Be hard nosed with your research, your questions, and your demands. And if you can swing it, and you're not totally satisfied with your mom's doctors' efforts -- second opinions never hurt. Take care Becky, and keep us posted.

David P.

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Welcome Becky,

You are really in a dilema.

I agree with the rest, another opinon is definately in order.

There are a few posters here who got no place with the first doctor but through a second opinion they were able to get a plan going and are doing quite well.

Kathy

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It nice to just "vent" to people who know what it is like to have a life that is unsure from moment to moment.

I told my mother I thought that maybe we should have asked more questions at the last onc appt in june(which would have been hard since she talked non stop. I think she did not want to give the doc to get a word in to talk to her). She says that it doesnt matter anyway and all they would have told her is that she is going to die. She told me she was fine and not to worry. It is none of my business.

She also reminds me that I am POA for financial not medical so I wont have to worry about any decisions. She will not speak at all with me anyways about any possible arrangements,wishes or plans in the event she becomes very ill. She has spoke with her boyfriend.

I dont have a problem with the boyfriend making decisions and representing her. But, how can I help someone who will not let me and definetly doesnt WANT my help. How do I just sit and wait day after day to see what is going to happen? I have been doing this now for almost two years.I am beside myself with this waiting to hurry up feeling. Any more advice?

Just because she doesnt talk about it or have any idea of how sick she is does not mean it doesnt exsist.

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I don't know if this is appropriate or not, but have you tried talking to/enlisting her boyfriend? I'd hate to think this is a "respect her wishes" situation, because it seems like there is more that she can do. but it might be. I'm sorry you're going through it and I wish I could impart some wisdom. hang in there, I hope you find some peace with the situation.

xoxo

amie

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Helplessness combined with intense fear is the worst feeling. I'm so sorry you find yourself in that situation. I don't know what your relationship is with your mom's boyfriend, but sounds like he may be able to have greater influence on your mom than you'd like. That makes trying to talk with your mom even harder if you and boyfriend don't see eye to eye.

Eveyone's given great advice. Sounds like a second opinion is needed. Your mom sounds like she has closed her mind to that suggestion. But you may be able to reach her through letters. People can often read your words more objectively than they can listen to them. They can read in private, without feeling defensive and mull over the ideas without having to give any immediate response. Also, when you take your time to write it all out, you can say it without intense emotion and say it just the right way.

Maybe try writing to your mom about how much you love her and how important it is for EVERY cancer patient to get at least a second diagnosis. Ask her if she would consider doing that to help you feel peace of mind and better accept her way of dealing with her health issues. Try not to even mention the boyfriend unless he is supportive of your stand - otherwise any mention of him will only set off an alarm in her mind that she needs to defend him and her feelings for him. Then she won't focus on what you need to tell her.

If nothing works, it will be very hard for you to accept that she is in control of her choices and you may not be able to influence her. Please come back often and share your feelings with us. Ultimately, the only person you have control over is you - if you can't change the situation, with support and friendship you can help change the way the situation makes you feel.

Best wishes,

Leslie

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Again as you have read over and over she needs a 2nd opinion. Writing a letter to her sounds like a great idea as I say what I most feel and can do it best in a letter. It gives you time to say exactly what you want her to hear without interuptions that may make you forget some of the things you really want to say. I think it also gives the person the letter is written to a more complete understanding as she thinks over the letter. Believe me she will read it more than once.

Please stay on the board and let us help you. Yes, reading helps but actually getting into the board will help even more.

Welcome to the best support group for lung cancer on the net.

God Bless you both,

Jane

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