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What is the Truth anyway???


-Cheryl-

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Hey Folks,

I am so disillusioned right now. I went to see my surgeon for a post follow up. I told him I recently met with my onc and had a CT. He asked how it read, I told him my onc said that "there was some slight changes in the nodules in my left lung, but no other cancer was seen anywhere." He called to get the report, then announced, "Well it says here that there is slight growth in the nodules and a mediastienal lymph node is enlarged on your wind pipe!" Tears filled my eyes and I was dumbfounded. Why did my onc not tell me? All he said was lets meet in 1 month... and "the slight growth is probably just the angle of the picture taken...kind of like take a picture of an orange, the size will vary." My surgeon sounded concerned and asked..."Why am I out of the loop? Let me talk to him first." He also said the x-ray he took that day looked better since the last one he took . These nodes have been there since the begining, but never lit up on a PET scan. I am supposed to meet with my onc next week on Wed., for my 1 month follow up. I guess I am feeling lost? What is next? Anyone out there know? My onc suggested at my last appt to wait and watch. But that was before I knew about the lymph node! I mean, I have adenocarcinoma- with BAC features. Isn't this the pattern, for it to spread into the in other lung? What is so weird is I have been feeling so good lately. Perhaps the alternative stuff is helping there. Help!

Cheryl

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Cheryl

Doesn't it just suck! This is YOUR body - you should be told exactly what is going on every step of the way. I hope things get sorted out. One positive is that you are feeling well - I don't doubt that it is all the alternative things you are looking at. My mum is doing the same, and coping really well with her chemo. She is also keen to explore alot of the things that you have been doing. You are an inspiration!

Take care, and I hope your doctors can get their act together!

Karen

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Cheryl,

Yes, this is the pot calling the kettle black b/c I am a known neurotic worry wart. :) But what I want to say is don't panic yet because you really have no news, right? The surgeon just read the report, did he see the scan like the oncologist did? Also from what I have read and been told, lymph nodes can look enlarged just b/c the area is inflamed. And weren't you told the xray looked better?

I know you cannot relax, I know this SUCKS (excuse my language). But I also know that you are a fighter, you are doing remarkably well. Hang tight, keep fighting and please write after the oncologist appt!!

And yes, I do feel hypocritical saying not to worry :) I feel for you and am praying.

Love,

Andrea

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Boy do I hear you Cheryl. Lately with John doing so well I admit we have become somewhat lax. Last onc. apt. we did not ask for a copy of the scan report (stupid) he went over it with us. From the questions he asked, I should have suspected something. Last Thursday, John had a 6 month check up with the radiation oncologist, no big deal so I didn't go (again, stupid, stupid, stupid). He comes home and tells me how concerned the Dr. was about the mass in the mediastinm, how the Dr. told him how critical he was when he first saw him, how he's surprised he's still here. What the hell?? Long story short, the medical oncologist downplayed the report for us and from now on I am back "on watch".

All the very best to you and Jack.

Rochelle

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Seems like my medical oncologist downplays things also, Thank goodness for my pulmonary doc, he goes over things with a fine tooth comb and can hear the difference in my breathing from visit to visit and is always Johnny on the spot calls when he says he will, wish everyone could have a doctor like him.

Praying for you Cheryl.

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Cheryl, so sorry you have to go through these conflicting reports. I agree -- take a deep breath, and see what comes of all this. Each specialist looks at things with his/her own eyes, own experience, own limitations. So it is not always surprising to hear different things. But you can move forward to find out what the truth is and what needs to be done. My prayers are with you. Don

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Hi Guys,

Thanks for helping me through yet another bump in the road of life. I must say that I was very depressed for a couple of days, but the members on this board really inspire and motivate me. I feel selfish when I do feel sorry for myself because many are far worse off than I. When I look at my life...I feel so blessed. I have a cantankerous (is that a word?) husband who always puts me ahead of his own needs, a pofession that I would get up everyday and do for free ( If I could afford too), Critters galore, and a home that is comfortable. But most importantly, I have a lord that provided me these things and will continue to take care of me. I just need to trust in my God. I will let you guys know what my onc says. I am praying for all of you as well.

Cheryl

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Hey Folks,

I am so disillusioned right now. I went to see my surgeon for a post follow up. I tell him I recently met with my onc and had a CT. He asked how it read, I told him my onc said that "there was some slight changes in the nodules in my left lung, but no other cancer was seen anywhere." He called to get the report, the announced, "Well it says here that there is slight growth in the nodules and a mediasteinal lymph node is enlarged on your wind pipe!" Tears filled my eyes and I was dumbfounded. Why did my onc not tell me? All he said was lets meet in 1 month... and "the slight growth is probably just the angle of the picture taken...kind of like take a picture of an orange, the size will vary." My surgeon sounded concerned and asked..."Why am I out of the loop? Let me talk to him first." He also said the x-ray he took that day looked better since the last one he took . These nodes have been there since the begining, but never lit up on a PET scan. I am supposed to meet with my onc next week on Wed., for my 1 month follow up. I guess I am feeling lost? What is next? Anyone out there know? My onc suggested at my last appt to wait and watch. But that was before I knew about the lymph node! I mean, I have adenocarcinoma- with BAC features. Isn't this the pattern, for it to spread into the in other lung? What is so weird is that I have been feeling so good lately. Perhaps the alternative stuff is helping there. Help!

Cheryl

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Glad you're feeling better. Wish I could join forces with Jack and go speak with your Docs about the importance of accurately reporting the results of the scans, and communicating with one another and YOU.

Cheryl, if you have pure BAC, or a BAC component to your cancer then areas of malignancy may not show up in PET imaging. I posted under the General Forum some information on something called NeoTect Scanning that was used by UC Davis when I was enrolled in one of the clinical trials -investigating BAC patients only- using the drug, Iressa. They chose to use NeoTect scans alternating with CT scans to follow patients in the study (I was told ) because NeoTect is more sensitive in picking up Lung Cancers, especially those that are well to moderately differintiated. It's something you may want to check into if you have enlarged or abnormal lymph nodes via CT that are not correlating with increased uptake on PET scans. I understand your frustrations....I've dealt with this same kind of thing off and on, and it is incredibly frustrating.

You hang in there, Cheryl...

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Guest Karen C

Cheryl, I think Don is right. Every specialist looks at things differently. The surgical oncologist isn't a radiologist and he didn't see the actual scans - so his perspective could be just a little different.

All the same, though, I'd stay right on top of this one. And tell the oncologist next time to lay it all on the line.

Keep us posted, and try not to worry. You are doing so well. And don't compare youself to others. I hate it when anyone tells me that other people have it worse off than I do (my mother, for one). That may be true, but that still doesn't mean your own situation merits concern.

We are about you very much.

God Bless,

Karen C.

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