Bad News/Good News/Keep the Faith
 

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!

Re: Bad News/Good News/Keep the Faith
 

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

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

Re: Bad News/Good News/Keep the Faith
 

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.

Re: Bad News/Good News/Keep the Faith
 

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

all the best
caya

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

Re: Bad News/Good News/Keep the Faith
 

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

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Re: Bad News/Good News/Keep the Faith
 

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

Re: Bad News/Good News/Keep the Faith
 

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!

Re: Bad News/Good News/Keep the Faith
 

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.

Re: Bad News/Good News/Keep the Faith
 

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.

Re: Bad News/Good News/Keep the Faith
 

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

Re: Bad News/Good News/Keep the Faith
 

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

Re: Bad News/Good News/Keep the Faith
 

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.

Re: Bad News/Good News/Keep the Faith
 

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

Re: Bad News/Good News/Keep the Faith
 

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.

Re: Bad News/Good News/Keep the Faith
 

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?

Re: Bad News/Good News/Keep the Faith
 

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!

Re: Bad News/Good News/Keep the Faith
 

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

Re: Bad News/Good News/Keep the Faith
 

Bonnie,

I am glad it was not anything. I can not imagine how you must feel. You are in my prayers.

Amelia

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WOW, what an experience. Just want to send a hug and hopes for smooth sailing now.
Wow. I'd be really p'od.
More hugs,
Dian e

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Wuff Bonnie, what a story and what a great attitude on your end. Don't know if I would/could be as gracious.

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Bonnie,

I missed this thread because my niece was visiting in May - I let her use my computer most of the time after she found out that mine allows unlimited connection time.

When I was staying in the hospital overnight after my hysterectomy, the first girl who was checking on me after midnight also attempted to put the cuff on my bad arm. I yelled at her (which I'd hardly ever done in my life) and she stopped.
She's evidently not very experienced because none of the other staff made the same mistake. I asked one of the nurses about it, and she said that by the look of my chest which was covered with gause all across, she could tell that I'd had bilateral mastectomy. That's why she was extra careful.

I'm sorry that you have lost a lobe of your lung unnecessarily. But I'm happy that the test result was good. Seems we've been making the same statement several times - that we are the very few who would be happy to receive some pretty bad news as long as we are cancer free.

Really need to be careful when staying in the hospital. One young volunteer had taken me to the wrong station one time when I was receiving therapies (PT, OT, ST) after my brain surgery. The physical therapist was frantic when she finally located me.

Re: Bad News/Good News/Keep the Faith
 

Cautionary tale for sure! In more ways than one... WOW. Yeah, if you don't retain a lawyer (which I don't know if I would either...), maybe at least consider reporting the experience (doctor and hospital) to the State Medical Board?

I learned from your story:

1. I have a cough currently and will be getting a chest x-ray on Monday. I WILL NOT "pass go" without a second and/or third opinion if we see anything... (PET/CT scans in the last 2 months were clear, so we really think this is simple allergy or respiratory virus).
2. Wear my right lymphedema arm in a plaster cast for the rest of my life so that incompetent boobs don't accidentally stick it with needles when I am under sedation during or post surgery.
3. There is nothing "perfect" about a storm.

I am glad you came out alive, but oy what a story. Thank you for shooting a warning shot! I am sorry that this happened to you.

Re: Bad News/Good News/Keep the Faith
 

Brenda, this is why I posted. As a cautionary tale in the event another of us is in the same boat (in the perfect storm!).
I had a younger friend here who died of lung cancer. She always told me "don't settle for just a chest xray because it does not show enough". But the other side of that is, once we have had cancer, no stone goes unturned and maybe assumptions get made and there is overreaction. In my case, for instance, it would have been more prudent to wait and give me antibiotics to see if the nodules went away. But, no, the push was on. Compounded by the fact the area could only be biopsied surgically.
So I went against my instincts and did not get another opinion before agreeing to the biopsy. I know with cancer, time is of the essence, but still....not always.
I sincerely hope this helps you next week. Please let me know what happens. And please, too, always keep the faith!

Re: Bad News/Good News/Keep the Faith
 

Thanks again for all the info and buyer beware advice! ...But my docs and surgeons would never let me settle for only a chest x-ray, having been a mets patient for the last 6 years. We have become pretty adept at diagnosing every little thing that appears in my body. Not to say that we couldn't be tricked by something at some point, but we are pretty good at due diligence... in my experience. That said, I appreciate your experience and WILL NOT let myself or medical team become complacent or overly anxious.

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Brenda, wow, you switched your photo up on us!
Yes, it sounds as though you and your team are better coordinated. This was my first big foray into the land of "what if..." and I learned alot from the experiece!

Re: Bad News/Good News/Keep the Faith
 

Bonnie,

Whew!

Joan

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OMG Bonnie! What a story!!
Sounds like the tornado has passed and now you are back to blue skies!!

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Bonnie,
I am so sorry to read your posts!
That are nightmarish to say the least.
I at first reading was shocked that you could or would be a stage IV....then as I read the full story I was just horrified.

I can only relate in a very small way...I had a ct scan which showed a nodule ...have been watching it for 5 yrs. now (also had pneumonia twice years ago). Also in a bad location to biopsey...so we watched it first by treating with a strong antibiotic (which did not change the size etc.) but it did in the year get smaller. Now have another one we are watching and it is not changing. At first I was very concerned waiting those months...but the dr. did slow down the process saying we are observing and in three months will go back and check again. With no change - we moved to 6months, while all the time I will admit I was a bit worried.

I have to say - what you have gone through sounds very much like you should at the very least consult with a professional attorney.

Once again I am deeply sorry that you and your husband had to endure such stress. But on the positive side, I am so thrilled you are NED. I wish you a speedy healing.

Best Wishes,
Jean

Re: Bad News/Good News/Keep the Faith
 

Jean, you and I have always had a similar story! It certainly sounds as though your team is taking the more measured, conservative approach. And one which the pulmonolgist who I am NOW seeing (after the horse is out of the barn!) would have recommended. Additionally, the final pathology never did exactly pin point the organism that was present. It seemed to be an old pneumonia. I intend to send it to another lab for clarification. Just letting the dust settle before I start persuing other paths.
Thank you so much for the kind words. Please let me know what you learn as you go along. I will keep you posted as well if there are new developments.
And keep the faith!

Re: Bad News/Good News/Keep the Faith
 

Bonnie, I too entirely missed this thread originally. Jeez....

You and I (and probably too many others as well) have learned in life, or have a tendency... not to listen as closely to our own intuitions when in doubt... It is so hard to keep everything in focus at such times.

It does shake up our ability to trust, and it doesn't help to have the surgeon who was erroneously confident in the first place come in and say something that self-centered to you.

Thanks for explaining it so clearly, so that we all can learn from your experience.

The legal path isn't easy, yet I too wonder who might be next with that surgeon... and think that some kind of slap might be important in that regard.

Best to you in your recovery,

AlaskaAngel

Re: Bad News/Good News/Keep the Faith
 

Bonnie,
As I was reading your story, I was so glad to see it was NOT Lung cancer..Man; I can't believe that you needless went thru the surgery and to top it off they put an IV in your "No" arm. Unbelievable.
Relish your good health.. I am soo very happy for you.

Kris...