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Latest - they don't know what to do with me.


Nancy B

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My pulmonologist called me last night (9:35 pm) and said that he, my oncologist and two lung surgeons went over my case at their "tumor board". They all studied the PET scan and basically walked away shaking their heads saying they would think about what to do.

My "really hot spot" (his words) is right where the rest of my lower left lobe attaches to the bronchia. There is just no way to get a piece of it without removing the rest of my left lung. They considered just radiation, but they still don't know for sure what it is, so they don't know what chemo to use. Once again, the words "very rare" were used again. Leave it to me to be "very rare"!!!

I meet with the surgeon on Friday am and hopefully by then this group will have decided what needs to be done. I was going to get another opinion, but so far I have 4 opinions (kinda) from 4 very good docs. Will keep you posted and, gosh, any ideas or recommendations are very much appreciated.

Love and hugs to you all,

Nancy B

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Wow, Nancy. I always new you were a "rare" gem! But this kind of "rare" isn't exactly what you want to hear.

I'm sure they are all very competent and will come up with a good game plan soon. Sounds like they don't want to put you thru more than you need to since they aren't sure what it is...

Prayers that by Friday you have some solid answers and simple solutions to get past this and back on the road to recovery! I'm sending loads of positive thoughts your way.

Hugs,

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Well, for crying out loud Nancy - I have absolutely no ideas either. Things are never simple, are they?

Just wanted to let you know I'm thinking of you and hope that by your appointment on Friday, things will fall into place and you'll know what to do.

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Nancy,

Geez Louise, this is never simple, is it? I know another surgery certainly wouldn't be your first choice, but it would be out of there and you'd all know what you're dealing with. My surgeon would not do a biopsy because he said he was 80% sure it was cancer and it had to come out of there, so that's what we did.

Whatever you all decide, I'm hoping for the very best outcome for you.

Cindy

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Those tumor conferences are wonderful, and I would even guess there may have been other doc's involved in your situation as well. I know my doc's will talk to lots of doc's regarding (rare) things that have popped up on me as well. So, I agree with the fact that you don't need a second opinion. I know my team of doc's always go the extra mile, and I'm sure your's do also. We are very lucky to have a wonderful team of doc's.

I don't know what to say Nancy, other then, wait until Friday and see what the surgeon says. :roll: As much as I would hate to see you go through surgery again, we have to remember that is still an option. Maybe not a great option, but it's another ONE, over and above chemo or radiation. SO the so called good news here is, your still in the drivers seat because you STILL have THREE OPTIONS! :wink:

Will continue to keep you in my thoughts and prayers.

((((((((((((((((NANCY))))))))))))))))

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You have great doctors reviewing your case. Have faith in them. That's what I would do anyway. When I was sick in December I had a similar situation in that it too was a rare situation and they had many consults as to how to handle my case. I think the more they consult with each other and brainstorm, the better off you'll be. Keep up the fight.

Joanie

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I feel your pain.

Somewhere in all this is the silver lining.

Last visit to my oncologist, staff kidded how big my file was--

:wink: I reminded them that a big file was a good thing. They agreed!

seriously, hope your visit is productive.

gail

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Thank you everybody for your thoughts and prayers. I went for a Nuclear Stress Test this morning, a must in case I have to do surgery. First, they couldn't find a good vein, then I am on the treadmill - I thought maybe they think I am training for a marathon!!!!! (I mean up hill and nearly running to keep up). Well, I am taking the rest of the day off and treated myself to a very nice lunch and going out to dinner with girlfriends tonight. I do know how to pamper myself.

Thanks again for all the thoughts and prayers and please keep them coming. I need you guys.

Love and hugs,

Nancy C

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hi Nancy. this is not unlike what happened to mama suki: a spot lit up on a PET in about 2003, but it was in a spot they could not biopsy without taking the whole lung. she watched it for two years, and it NEVER grew, per the CT, although the SUV got ever so slightly higher.

then, in 2005, another spot showed up in a "clearer" place in her lung, that they were able to biopsy and confirm as more NSCLC. they removed her whole lung, and the 1st spot was, in fact, cancer.

not sure how this helps you, but it's similar so I thought I would recap. she's doing just fine, by the way, as is NED as of March.

keep us posted, and good luck!

xo

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Bunny, thanks for the info. If it is nsclc I will be quite content to watch it (no surgery!), but if it is sclc, I need it out of there right away. I am really anxious to hear what the docs decide to do. Boy the waiting is rough. I am so glad your Mom is doing well - she functions OK with just one lung?

Hugs,

NancyB

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Jeez Nancy, what a predicament. You need to know whether it is NSLC or SCLC. I guess they will have to take the rest of your left lung so they will know what kind of follow up chemo to apply.

You could just zap it with cyberknife and not do chemo. You may be able to get away with that if it was NSCLC, but probably not SCLC.

I guess I would ask for a completion pnemonectomy, find out what it is and do chemo. If you have just part of your lower lobe left, it probably won't be missed that much in terms of pulmonary capacity. Of course, having to do another surgery will be no picnic.

You have my best wishes and prayers.

Don M

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Nancy,

This is not the results expected. Sounds like you have a great team of doctors. They are evaluating the situation very carefully. I know Huntington is an excellent hospital with top notch doctors. Did you ask if there is a possibility for inflammation, that lights up on a PET as well as scar tissue.

You are in my prayers each and every day!!!

Please keep us posted...

God Bless and hugs,

Karen

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