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Post by Blossom/Jackie W. on Jul 16, 2007 20:20:25 GMT -5
....been a rough day psychologically. Actually; if the truth be told it's been a rough 6 weeks; if not longer. But then many of you know what that's like (and in some cases worse) so I shouldn't complain and; I'm not. I don't know much more than what I knew; he -- ; maybe even less. He didn't get a "piece" (didn't/couldn't see it) becasue of where it was located. He did do the lavage (wash) had the fluid tested ...no cancer cells. Good you say? Nope. It's only accurate 10% of the time. UNLESS; it's very definite then it comes back positive. I think he knows (as do I) he's now out of his realm of expertise and referring me on as he should. Next stop....the surgeon...meet and greet....meanwhile he's booking the nuclear test (VQ scan) and another CT scan for September or October (since the surgeon may want it plus there's about a 6 week wait for a CT scan) The VQ isn't as booked or far behind. I don't know "how" to feel quite frankly; been wrestling with this one all aftrnoon. The reality is; or was....I have a nodule, possibly a small second one in the other lung and an area like crystalized glass. (At least they can see blood flow through that one) One of the danged things is changing and growing; so far quite slowly. Maybe it's cancer, maybe it isn't. They wouldn't really know w/o removing it and taking a lobe with it But; that's another issue yet to be dealt with and still down the road.... A needle biopsy is out due to the risk of infection and possible lung collapse. (From his perspective.... though you never know with the surgeon) Anyway; now you know what I know. I won't go into the visit itself; suffice to say I was "graphical" in my summary etc.....and asked where in his class the surgeon graduated....top or bottom and reminded the Dr I hadn't asked him yet.... (didn't cuss though other than H - -- a few times ) I've talked to the kids....I'm sure they think I'm "holding back" but I'm not. I'm sure it's hard for them being so far away.... Now you know what I know......NOT bloody much! Meanwhile I've got things to plan and do; here with you and other areas...... I can't/won't stop now! But Gr-r-r-r-rr- It frosts my "whatever"
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Post by cocojax on Jul 16, 2007 20:24:10 GMT -5
Sorry Jackie, how frustrating. I can't say much, other than we are all here for you. Couldn't leave it without a couple of swear words for you.. &%$**, #@%&&*, and the big one ^&^&^&^%%%%%....
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Post by LindaNY on Jul 16, 2007 20:27:54 GMT -5
Oh dear Jackie. I'm so sorry that doctor couldn't come up with a good diagnosis. It's good that he finally admitted it's out of his area of expertise and will refer you to a surgeon. In my humble opinion, he should have done that first. You are taking it very well. I would have been totally pissed off and given him hell.
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Post by cheryl on Jul 16, 2007 20:33:39 GMT -5
Jackie, Oh Crap - I would've been soooooo peeved. Making you wait even longer. You are one strong strong lady and I wish I could give you a big big hug. I'm really glad he's referring you on and I hope you finally get some answers. I'm with ya.
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Post by Blossom/Jackie W. on Jul 16, 2007 20:36:19 GMT -5
Linda; He didn't openly acknowledge it's out of his area.....but it is. Let's face it....they can only do so much as Respirologists or Pulmonologists...I'm AM glad thpough that he's being "aggressive" about it. I'm sure there's an element of guilt in there with the ego thing since he mucked up the first time and missed it by 3 months.
Coco/Ellen.......I'll 2nd that! (what you said).
Really guys I'm O.K. with it. What can you do that hasn't been done? And; I really was ready for the "C" prognosis today. It's worn me out ......So it's both good and bad.....
Could be worse......
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Post by morningstar on Jul 16, 2007 20:41:08 GMT -5
I am with Linda and Coco the &*())_*^ what in the (&%# does he think he is not doing.
Grrrrrrrrrrrrrrrrrrrrrr is right. And a lot more. Have you considered going to Georgia and staying until you found out. And where may I ask is he going to get a surgeon ?
We are here boss Lady. I fly couldn't have landed in this room today without landing on one of us. Hang on tight WE HAVE ONLY BEGAN TO FIGHT
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Post by bobbioh on Jul 16, 2007 20:43:22 GMT -5
Oh Jackie Im so sorry,I will keep you in my prayers and keep sending you positive thoughts. Hang in there it may still be nothing it is a possitive thing that the wash came back negitive. I can only imagine what your going through,And I wouldnt want to be in your shoes. But if I ever was I can only hope I handle it half as well as you have,You my friend are a rock and give me stregth just knowing you. take care bobbioh
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Post by Blossom/Jackie W. on Jul 16, 2007 20:46:22 GMT -5
You guys are just wonderful; you truly are. I'm O.K; really.............gotta try to get some sleep..... Be well....that's an ORDER !
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Post by morningstar on Jul 16, 2007 20:49:25 GMT -5
WELL SAID BOBBI. AMEN
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Post by LindaNY on Jul 16, 2007 21:25:19 GMT -5
and many more for you girl.
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Post by larrynz on Jul 16, 2007 21:41:15 GMT -5
That is not good news, not knowing is very stressful, I hope you get to see a proper Doctor soon.
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Post by the bear on Jul 16, 2007 21:49:38 GMT -5
I can add nothing except my prayers. Hugz, as ever, bear.
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Post by John on Jul 16, 2007 23:03:50 GMT -5
Jackie : Sorry for the no info. It kind of makes you want to blow up a smile!! Here's one ] you can have! take care my friend Your Angels will be praying for you .
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Post by virginia on Jul 18, 2007 17:00:10 GMT -5
for you Jackie...
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Post by sue on Jul 19, 2007 9:28:32 GMT -5
Add my good thoughts and prayers with the others Jackie!
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Post by Blossom/Jackie W. on Jul 19, 2007 11:51:57 GMT -5
Thanks guys. I've still not heard anything. Mind you I told him on Monday that I'd give his office till Friday and if they hadn't called me; I'd call them....Figures
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Post by Deleted on Jul 19, 2007 18:42:40 GMT -5
I just found this site and was amazed that the one thread I hit was this one.
Blossom, I have been going through something very similar. My Dr. has been watching some nodules for a year and a half. He said they had grown and I had to have a PET scan. I went for the PET scan and they said two spots had lite up. One over 2 cm and one 7 mm. They were new. They weren't the ones they were watching. He sent me for a needle biopsy and after laying on the table for an hour and a half they came in and said they now think that because I have arthritis I might have it in the ribs and that caused the nodules to have glowed. They were very evasive, told me that from the first CT scan 30 mos. ago. (it was 18 mos. ago they got that wrong) it hadn't grown very much at all and true cancer would have spread quicker. I was relieved to get off the biopsy table but knew something was wrong.
I should have spoken up then. After reading the reports again I realized that the two spots that lite up were new ones, not the one from 18 mos. ago.
I cancelled my appt. with my original pulm. and made an appt. with another Dr. Twenty minutes after I called he called and told me that he had talked to the radiologist that did the PET and he said I have to go for a bone scan. My husband and kids told me to go so I did.
Sure enough it wasn't the arthritis that lite the nodules up. I had to go back in for a biopsy. I went back in and laid there for quite a while and they were upset that I hadn't brought the most recent CD of my most recent CT. I explained that I had just been in there and I thought they guided the needle with the CT machine. I got mad and asked if I was going to be sent home again. She said the nodule was small and I didn't need it. Radiologist came in and said because PET lite up I did. I was ready to scream.
They did the needle biopsy, and said they hoped they got enough it was so small. They punctured 3 times. Two days later they call and say they didn't get enough so I have to go to see a surgeon right away. They want an open chest biopsy.
Does anyone know what that is? I have asked on the U.S. COPD forum and I didn't get a response but after reading here I have a feeling that someone might know. I think they are sick of me complaining and I can't say I blame them one bit. I have been kind of whiney about it. I have been so angry I could scream.
I hope you have found out Blossom and my prayers are with you.
Linda
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Post by Blossom/Jackie W. on Jul 19, 2007 18:56:47 GMT -5
Wow! I just read this. If you don't mind I'm gonna re-read it in the morning (plus there's something I want to check on first before responding) I'd love to compare some notes here and maybe some other posters can clarify even more. Sounds like you've really been put through the mill...
Till tomorrow.....
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Post by Blossom/Jackie W. on Jul 20, 2007 13:02:31 GMT -5
O.K. Linda2; and I thought I had it bad as in "whose on third?" You must have been fit to be tied. I found that interesting re" "arthritis lighting up" makes me pause and say Hmmmmmm. (I have osteoarthritisi n my neck) BUT I'm not sure how that could impact a scan considering) Mind you it's one of the few things (scans) I've done a lot of reading on. You asked about an open chest biopsy.... I extracted this from Med Line..... An open lung biopsy is surgery to remove a small piece of tissue from the lung. The sample is then examined for cancer, infection, or lung disease. "How the test is performed An open lung biopsy is done in a hospital operating room under general anesthesia, which means you are asleep and pain-free. A tube will be placed through the mouth and into the airway that leads to the lungs. After cleaning the skin, the surgeon makes a cut in the chest area and removes a small piece of lung tissue. The wound is closed with stitches. A chest tube may be left in place for 1 to 2 days to prevent the lung from collapsing. When you wake up after the procedure, you will feel drowsy for several hours. You may have a mild sore throat from the tube. You will feel some discomfort and pain at the incision site. Why the test is performed The open lung biopsy is done to evaluate lung problems seen on x-ray or CT scan." Here's the link ......When you wake up after the procedure, you will feel drowsy for several hours. You may have a mild sore throat from the tube. You will feel some discomfort and pain at the incision site. Why the test is performed Return to top The open lung biopsy is done to evaluate lung problems seen on x-ray or CT scan. Here's the link..... www.nlm.nih.gov/medlineplus/ency/article/003861.htm
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Post by cheryl on Jul 20, 2007 13:28:18 GMT -5
Sometimes I really hate this disease
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Post by cocojax on Jul 20, 2007 13:58:58 GMT -5
I think you are right Cheryl, I hate it all the time.
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Post by Joyce7 on Jul 23, 2007 14:42:06 GMT -5
The medical professionals do anger me frequently, and I am a strong believer in asking questions. I hate this for you Jackie. I know you are worried and angry too. Please keep us updated and until you know where you stand with it all....you know we will all be praying and thank goodness you are a woman of strength. I read a meaningful thing and keep a copy of it here at work and at home. You are a woman of strength:
A strong woman works out every day to keep her body in shape..but a woman of strength keels in prayer to keep her soul in shape.
A strong woman isn't afraid of anything...but a woman of strength shows courage in the midst of her fear.
A strong woman won't let anyone get the best ofh er...a woman of strength gives the best of her to everyone.
A strong woman walks sure footedly...but a woman of strength knows God will catch her if she falls.
A strong woman wears the look of confidence on her face...but a woman of strength wears grace.
A strong woman has faith she is strong enough for the journey...but a woman of strength has faith that it is in the journey that she will become strong.
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Post by Blossom/Jackie W. on Jul 25, 2007 7:39:53 GMT -5
I like that Joyce; thank you; also for the kind words. I'm gonna print it off and post it by my computer.
As it stands right now I've a VQ scan on the 31st of this month; I'm still waiting to hear what date I see a surgeon and the date for another CT scan (for the fall)
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