Need Your Experience/Input

[Blossom/Jackie W.]

to make a good decision. I also need to be methodical and practical....

I sure as heck don't mean to monopolize a topic here and I promise to try and keep it at bay for all of our sakes BUT; basically I currently need input from several sources.

Here's the situation briefly. I'm in a study that includes having a CT scan (done back in Dec) Two labs and one Dr messed up. No one reported a nodule plus a crystalized mass area on my lungs till 3 weeks ago. They arranged for another comparative scan (should have been done 2 months prior had they seen it)but I had it a week ago...today I was told the nodule has grown a slight bit (this makes it now 6 months since the 1st scan) and the mass mass may have changed (but the Dr thinks it's a red herring) He wants to a a bronchoscopy Friday morning and take a piece.

This afternoon I called him back becasue I forgot to tell him that I have mild aorta valve regurg and the brochure says to talk to your surgeon if you take meds before dental work ...I do.

He called me back, checking the AHA recommendations as we spoke...it wasn't clear, said I could have the meds in the IV etc ...then said he didn't realize it said that (the caution things) in the pamphlet he gave me. (Been awhile since he looked at it) THen; he proceeded to say "since I have you on the phone" ....Radiology thinks they see a nodule now on your other lung but I don't see it. I'll have to get together with them to show me.

Right now the guy is 0 and 3 and I'm scared of the proceedure itself let alone him doing it. This is a WELL respected specialist, written up in many journals and an active member in the Respirology community. But bloody hell; I've gotta tell you....the prospect of them/him going in and all does NOT make me feel good.

Maybe I'm justifying trying to get out of having it done (the bronchscopy; and/or maybe I have no faith right now in who's doing it. He's also gone ahead and is booking a nuclear test (in case of a potential lobectomy at a later date - to help save time) Granted he may be trying to make up for lost time.

Have any of you had this done? What was it like? Do you think I should cancel till I try to arrange another opinion (which could be a bit)

Please let me know; I only have another day to think about this and I need to try and make the "right" decision.

Thank You
Jackie

[larrynz]

I have no experience to call on that would help you, but this guy sounds like he wants to do the best he can for you.
It boils down to one thing "Do you trust him"

If it was me I would go ahead.

[cocojax]

Larry is right I think Jackie, sounds like he is trying to do the best for you. Waiting is only going to add more stress and pressure to you..
JMHO...

[morningstar]

Jackie,

I have no expirence in this to be able to help you. My advise if I was to give some. Talk to DH and your kids to see what there thoughts and feeling are. May you find the answeres your seeking.

Rose

[cheryl]

Jackie,

I've never had a bronchoscopy. But it does sound like this doctor is trying to do his best by you. Have you been with your GP for a long time? Could you ask your GP for his honest opinion on this doctor. Don't worry about the nuclear scan - that one's easy.

[chrisw]

Hi Jackie,
I have never been just where you are, so it is hard, no - impossible, to give advice from that side. However I have been hanging around the Efforts list for quite a while now and have picked up a lot from them.
As far as I can tell there is really nothing else that they are going to be able to tell unless they go in with a bronchoscope to have a look and take tissue samples.
The procedure is probably not a fun way to spend the afternoon, but I think it comes under the heading of minimally invasive surgery, and it is generally the same procedure that I volunteered for when I tried to get into the Emphasys clinical trial - they said I didn't qualify but I had volunteered! What I am trying to say is that I don't think you should be scared of the bronchoscopy itself.
That said - if you weren't scared of what they may find, then you simply would not be human. I believe that most investigations like this show that it is NOT cancer, and in any event cancer is more curable than COPD!
I think it is going to be preferable to go ahead with this now, rather than procrastinate for a second opinion, only to be back at the same place a couple of months later.
So - I recommend that you hold on to our hands real tight, squeeze them as much as you need - and go ahead.
We will be there for you as you need us!
Hugs
Chris