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Debbie2003

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  1. When my lung nodule was found by accident by CT Scan, they did a PET scan right away. When it didn't light up, they waited one month and did another CT Scan. The nodule disappeared. There is another one that stayed the same. So they will monitor that 3, 6, 12 month intervals. I agree like the others than 3 months seems too long to wait. Obviously it's not good to rush into a biopsy if there's a chance that it's not necessary, but I don't understand why they can't at least do some other tests. I was lucky that I was already under the care of an oncologist for a blood issue. He was the one who took control and did the PET and follow-up CT scans. My pulmonogist was useless. He still uses only X-rays for diagnosis and we all know things often don't show up on x-rays until late stages. Good luck to your friend...
  2. Fay - I think anyone who has battled a chronic disease can understand your frustration over the medical care you are getting. I have the same problem with a non-cancer related lung disease that I have. I can especially relate to your frustrations about incorrect scan measurements and so on. I've experience the same inept medical personnell and "lost" files and reports, doctors not caring and/or giving incorrect information. I've even seen SOMEONE ELSE'S scans placed in my file by mistake! A patient literally has to stay on top of every single thing, which is a full time job and exhausting to say the least. It's painfully frustrating to have to fight a disease when you feel the people you are PAYING to help you, end up hurting you. Dean said it best when he wrote "And each of us had a couple of weeks where it seemed like we had daily battles with folks WE SHOULDN'T HAVE TO BATTLE WITH!" The medical community is supposed to be helping you and not making things worse. So your "rant" is understood by everyone here I'm sure.
  3. I am a true "outsider" myself since my nodule turned out to be inflamation not cancer (so far?) but I wanted to say that Dean it's so important for you to do what is best for you. And if coming to the board reading certain things puts stress or negative feelings on your body, then it was smart of you to avoid it for a while. Having said that though, you are definately not in anyway an outsider here. You are a main part of the group. And your choice of treatment is a valid one with some studies backing it up so I hope you never feel judged. I know people who wished they would have done the same thing. Everyone has to make their own choices and no one knows which choice is right. But the only choice everyone can agree on is living each day to the fullest. Good luck and keep the positive thoughts flowing.
  4. Jay - don't be mad at your Dad. He's just looking out for you. I wouldn't let my daughter go either, and she doesn't have cancer, so don't think it's because of that. He's just protecting your best interests. The internet can be a bad place for some situations. Your Dad is just being a smart parent. We all should have thought of the idea about the chaperon first before you mentioned it to him. Next time you bring up the topic, ask him what conditions he would be willing to let you go. I'm sure something can be worked out. But don't get mad either way at him. There will be more trips for you in the future, so it will all be okay either way.
  5. Yeah SURE!!!!! LOL!!! The trip sounds like a great idea. Please count me in for a contribution too.
  6. I'm praying for your Mom. I just wanted to also add that no matter what you're doing, if you are doing it out of love, then it is the right decision. It sounds like you are listening to your Mom's wishes and doing what she wants, which is always the right way to go. But having said that, I also want to add that after my Dad died (not of cancer, but of heart disease) I questioned every single thing we did. He was in a coma so that brings up a lot of decisions the family must make. I would have times that I regreted things and wished we had made different decisions. But after time (it's been 5 years now) I realized that questioning yourself and the decisions the family makes is part of the process of dealing with trauma. It's perfectly normal. You'd question your decisions no matter what they were. It would be more disturbing if you WEREN'T questioning everything. So don't be to hard on yourself and just realize that it's natural. You're a good daughter and you want the best for your Mom and that's wonderful. Take care and remember everyone here is thinking about you and your family. And keep hoping for a change for the better because it can still happen.
  7. I am new to the board and came here not knowing anything about LC. Greg was one of the people who always responded to my posts and answered my questions, no matter how small the question was. I was always so impressed that he would reach out to a stranger even though he had his own battle going on. Only a special person would do that. His children will carry on that spirit of giving. Hopefully Greg's family can find some comfort knowing how much he will be missed and how much he affected everyone here. He faced a disease head-on that many people aren't able to face - and he did with bravery, honestly and humor. I don't know many people (including myself) who could show the kind of strength and resolve he displayed. His strength and his humanity will live on inside the children he loved so much. My prayers go out to everyone in Greg's family.
  8. Hi Greg - Well, it's 2:00 a.m. in California and I'm hoping that when you read this on Sunday, you will feel 100 times better than you did this evening. I'm sorry that you are going through this. And I'm sure whatever decision you make is the right one for you. Let us know how you're feeling. Take care
  9. I'm so sorry for your loss. I will pray for you and your family. Reading the posts from people who knew Lenny makes it clear that he was a special person. I hope you get some comfort from knowing how much everyone here loved Lenny. Take care of yourself and please know that everyone here will be there for you during this difficult time. Debbie
  10. Do you get PET scans to monitor things? Just to clarify, when all of you say to get frequent "scans" - are you meaning CT Scans or PET Scans? She did have one PET, but my understanding is that they are just going to do follow-up CT Scans. Does that sound right? Would she need anymore PETS?
  11. What do you all think would be an appropriate scan schedule? They haven't said anything specific, but on her CT Scan report the radiologist suggested doing scans at 3 month, 6 month, 12 month, 24 month intervals. Does that sound right? Is that frequent enough?
  12. I'll ask about that treatment. Maybe that would be an option. Yes, waiting is the hardest part. I feel a sense of urgency about it, but her docs don't seem to feel that way. They did at first with the larger nodule, but once that disappeared, they seem to be uninterested in the other one. I just hope that they aren't "assuming" that it's nothing because of all her other lung problems. I know other people who have emphasema, pulmonary fibrosis, AND cancer all in one lung. It does happen.
  13. They don't know what specific lung disease she has, but it is an inflammatory type like sarcoidosis. She is on O2 therapy, Prednisone and Imuran to keep the inflamation down and prevent scarring. They ruled out UIP/IPF but are still investigating. She has many docs, but one is thinking it could be a airways-type of disease. To complicate things more, she also has mild/moderate emphasema. As far as what her docs are recommending, they really aren't suggested anything specific other than waiting and doing follow-up scans.
  14. Hi - My Mom has posted here before using my screenname. I have a question to ask....she has a 4mm lung nodule that the docs want to "monitor" over the next year. Well, after reading some of your posts, I'm wondering if that's a bad plan. Many of you have mentioned that waiting only ended up making things worse. I'm not sure if you remember my Mom's situation, but basically she isn't well enough to have invasive surgery unless it's absolutely necessary. Her docs don't want to do a biopsy on the nodule. She has limited lung capacity as it is. The nodule is in the upper right lung. She had a larger one in the lower right lung, but it went away, so they're thinking it was an inflammation. I guess I'm wondering if the waiting game is the best way to play this....so I'm turning to you because truthfully I trust you all more than her doctors.
  15. Just to update everyone - got back from the oncologists tonight regarding the CT scan he ordered after abnormal PET Scan. The new report says pelvis lit up because of "severe sigmoid diverticulosis with suggestion of mild diverticulitis". So I have to go to a gastro and get a colonoscopy. I'm not sure what that disease is but I've seen it mentioned a few times and I'll start doing the research. As for the neck, there is a nodule on parotid gland so I will have to get a biopsy and see another specialist. Now here's the strange thing... the 2 lung nodules (which was the reason this whole process got started when one doctor accidentally noticed a nodule on lung on a CT Scan, then ordered the PET and so on.) The big nodule has shrunk and the report says it "resolved itself" and that it was probably an infection or an inflammation. And the 2nd one that was 4mm is unchanged. It will have to be monitored. But the fact that the bigger one is gone was shocking. So for now, I'm off to see more specialists. (Which brings my doctor count to about 17!) Just wanted to thank everyone for all of their answers to my various questions over the past couple weeks. You are truly kind and loving people to help me and reassure me when I needed it the most. You're all special here on this board.
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