Bad News/Good News/Keep the Faith

BonnieR · 05-22-2010, 10:33 AM

Think that is the best title for this saga! Will try to summarize. I had a chronic cough for a few months. No other symptoms of pneumonia or what not. Finally had scans. PET, CAT. They showed a few areas of concern. Nodules that lighted up. Consult with oncology thoracic surgeon. He suspected possibly 4th stage BC but even more possible, primary lung cancer! Only way to access this lobe for biopsy was to perform surgery. If it was negative, fine. If positive for primary lung cancer he would remove the lobe and that would remove the whole cancer. So I undergo chest surgery to conduct the biopsy. The frozen section comes back positive for bronchoalveolar carcinoma. They remove my right middle lobe and lots of lymphnodes. I spend a few more days in the hospital recovering from surgery and wrapping my brain around this new development. After 3 days the surgeon comes to tell me he has bad news and good news. The bad news is that the lab made a mistake. The good news is that I do NOT have lung cancer! Further analysis showed that the nodules were a chronic pneumonia of some sort! So the lobectomy was for naught. Can you even imagine my range of emotions?
I wanted to share this with you all for the cautionary tale that it is. And for the hope that it contains. Even the darkest moments can turn around. My husband would not accept the diagnosis until the final lab report was done, and he proved to be right!
I am going to take this reprieve and make the most of it!
And please, everybody, KEEP THE FAITH!

Rich66 · 05-22-2010, 10:45 AM

Wow! That's a wild ride. Was the nodule inaccessible via biopsy alone?

tricia keegan · 05-22-2010, 11:12 AM

Bonnie, what a roller coaster of emotions you must have felt.
Many congrats on being NED though!!!!

ElaineM · 05-22-2010, 11:13 AM

I am very glad and happy that you are okay, but I am sorry to hear you had to go through such an ordeal. Yes. This is proof that modern medicine is not always 100% perfect.
I already knew that. I had a few mixups of my own.
That is why I double and triple check new developments and often get other opinions and do research before I make decisions about my health care.
Take good care of yourself. Be happy that you do not have one more thing to deal with. Enjoy life.

caya · 05-22-2010, 11:46 AM

OMG Bonnie - that is horrible/fantastic!! Just glad you are okay...

all the best
caya

Becky · 05-22-2010, 12:26 PM

I just wanted to go whew when I read your post. What a shame to lose a lobe of your lung. Wow.

Lien · 05-22-2010, 12:43 PM

Dear Bonnie,

What a rollercoaster you have been on! I'm so glad it turned out well. But sorry you lost the lobe. Hope you do well on just one intact lung.

You are the 4th person I know who was (almost) diagnosed with lungcancer, and turned out to have something else. I know at least one other person who's friend had the same experience. In two cases scans showed nodules that looked exactly like LC, in one there was some doubt. In all cases biopsies were done and in all those cases doctors were flabbergasted because they had been so sure it was lungcancer.

Just goes to show that docs aren't always right.
I'm glad yours was wrong.

Love

Jacqueline

PinkGirl · 05-22-2010, 12:48 PM

holy chit!!!

Mary Anne in TX · 05-22-2010, 12:51 PM

I can't even imagine what you've dealt with! Good, bad, good, crazy. Bonnie, it's unbelievable the journey that so many take with this disease. Remaining hopeful and strong seem to be our greatest task. Best wishes and prayers, ma

yankeebikachic · 05-22-2010, 02:14 PM

Wow. I cannot even imagine the range of emotions you must feel. I'm sorry you had to go thru all of that, but thankful you are going to be just fine. And what a wonderful husband you have!

BonnieR · 05-22-2010, 02:24 PM

Rich, yes the location could only be reached surgically. Not by needle biopsy.
Lien, we have 5 lobes in our lungs. This was the small right middle lobe.
I have learned that the remaining lung tissue will expand and compensate for that which is missing. I will retain 90% function. Thank God.
Thank you all for your understanding. I knew you would get it.
The surgeon was suprised that I was not "happier" upon hearing about the mistake. I told him of course I was happy but would have preferred not losing part of my body by accident and needed time to process all that had happened.
And I was on Percocet post-op which has a way of making one morose.

ammebarb · 05-22-2010, 03:07 PM

Wow, Bonnie! Hope that you are recupering well, and when you have time to process the events, will be fully able to accept the reprieve and truly make the most of it---as you've said. Someone once told me that the cancer experience can make a person bitter and angry or more sensitive and appreciative...sounds like your experience is one that could do the same! I'm wishing you well...and thanks for writing about your journey.

Barb A.

Catherine · 05-22-2010, 04:11 PM

Bonnie, what a story. I am so glad you are okay. Thanks for sharing the story and the reminders how on top of things we need to be. I can not even imagine your shock about the "mistake." I understand mistakes....but they still make me angry. You were a good trooper and so was your husband.

All the best,
Catherine

Ellie F · 05-23-2010, 04:07 AM

Bonnie
So sorry you had to go through this!Very, very glad it turned out to be benign.I also understand mistakes but don't these folk understand the psychological misery, let alone the physical that
people endure!
Love and healing prayers
Ellie

Yorkiegirl · 05-23-2010, 06:12 AM

Bonnie I'm so sorry to hear all that you have been through. I'm just glad that you are OK. Prayers going out for you.

Patb · 05-23-2010, 06:38 PM

What a journey. My mouth was hanging open
when I finished reading this. I am so glad you
are ok but minus part of your lung and the
whole surgery thing. Take care and I guess
maybe second opinions are good.
patb

BonnieR · 05-23-2010, 06:51 PM

patb, you are so right about the second opinion! This was a rush job and I had reservations about the push. But everyone thought it was cancer and time was of the essence blah, blah. I said I wanted to see a pulmonologist first but the surgeon said "he will just refer you back to me". (I already had an appt with him for a few days later) I have since seen him, and of course he would have taken a more conservative route and treated me with antibiotics first! But he understood how the ball got rolling.
I think it was something of a perfect storm. And I was in the middle of it.

swimangel72 · 05-23-2010, 07:54 PM

Bonnie I'm so sorry you were in the middle of a "perfect storm".......I almost lost my gall bladder in the same way ......fortunately my brother-in-law is a doctor and slowed the process down which basically saved my life. I hope you are feeling OK now.......my first thought after reading your story is "get a lawyer"........must be my NYC instincts........I never did sue my plastic surgeon (who gave me mrsa)......so I shouldn't talk, but still, perhaps talking to a lawyer might help you get some closure?

BonnieR · 05-23-2010, 08:53 PM

Kathy, good point. It would be enpowering. I believe the measure of damage would be how this affects my future functioning and that is still not clear. And, of course, if it honestly looked like cancer on the frozen section, then it might just be "one of those things".

And then there is the fact that I woke up at one point in my hospital room with an IV running in my wrist right above my lymphedema bracelet that says "no needles". And despite the signs on my chart and over the bed.
I was lucky to get out alive!

michka · 05-23-2010, 11:21 PM

Dear Bonnie, what a story! You sure didn't need that. I am happy you are well. I can't get over the quote "the surgeon was suprised that I was not "happier" upon hearing about the mistake". The tone of your posts is very positive but he can't ask you to be "happy". Relieved but not happy!
I hope what they told you about the recovery of your lung is true and that you will not feel the difference...and be able to forget all this and go on with your life. Michka