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Introducing myself and my cancer


Fuzzy

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I'm 56 and was a longtime smoker that was screened every year for lung cancer (my mother died at 54 of adenocarcinoma)

In 2018, a nodule was found on the right lungs lower lobe adjacent to the major fissure. At that time, it measured 8x5 mm and after a PET scan showed no uptake, I was told we'd watch and wait. In October 2019, another CT scan was done-now the nodule was 12x8. Because of its location, my pulmonologist sent me to see a thoracic surgeon-who removed my right lungs lower lobe. my lung collapsed a few days later and after three blood patches failed, he went back in and did a wedge resection on my *middle* lobe. Finally he did a pleurodesis which did the trick

Now the fun part: Pathology couldn't find the nodule that started all this-but they found a level seven lymph node that had a carncinoma (unknown type); two level 11 nodes were clean. On Friday, I had a pet scan to see if the primary tumour was from other than my lung (I've had a colonoscopy and endoscopy-other than a 4mm polyp, all came back good) I'm treading on eggshells right now,  

My question: how in hell can you * not* find a nodule?  


BTW, other than pain from the surgical site, I feel pretty good-even with a nice bit of my right lung removed

 

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Wow. That is a new one on me. I thought the normal process was to do a biopsy during resection. If benign do a wedge resection, if malignant do a lobectomy.

Wishing you the best. And very puzzled.

Peace

Tom

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Tom:

The nodule was in a difficult place that pulmo wasn't happy with trying a needle biopsy.  I'm staggered they couldn't find the nodule after surgery and during the pathology.  

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Hi Fuzzy and welcome here! The elusive nodule is very strange!  I can see why you're treading on eggshells.I had a similar sized nodule that  couldn't be needle-biopsied and also wasn't amenable to wedge resection due to its location. Fortunately my lobectomy  was unremarkable and the little bugger was found with no problem.  Keep posting and let us know how you're doing. 

BridgetO

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Hi Fuzzy,

Welcome to the club nobody wants to be part of.

Like you my pulmonologist found a nodule (8mmx5mm, believe it or not) in my lower right lobe.  A pet scan was inconclusive and although we tried a CT Guided Biopsy the doctor doing the test decided that the nodule was too small and hard to get a sample from so he didn't want to risk a pneumothorax for a failed biopsy.  So, off I went to the surgeon who explained that they would do a wedge to remove the nodule and test it for malignancy and if so, they would remove the lower right lobe.  Well, it tested positive and my lobe was removed.  I did suffer a collapsed lung the evening of the surgery only because a nurse's aide knocked the chest tube pump off the bed rail, it fell to the floor breaking the vacuum in the tube pump and I immediately felt the pain, so my heart goes out to you on that one.  BTW, in my case they got a replacement pump in a matter of a couple of minutes switched me over and the pain left almost as quickly as it first hit me.  

Now, having said all this, I'm confused by a couple of things (and I believe your story is accurate).  I would have expected the wedge resection first to test the nodule for malignancy.  If it was negative you'd get sewn back up, if not then the lobectomy (which I'm glad you're recovering from so well).  That is my first disconnect from what I and others in cases similar to yours found to happen.  Second, it's odd that a lymph node has an unidentified cancer.  Could it be that the lymph node had a growth and it was removed and sent out for biopsy?  I'm just not clear on that part.  Hopefully you'll be hearing more about that lymph node soon.  

In the meantime, rest up, keep hydrated, use the spirometer every hour (or less), keep your head elevated in bed and do as much exercise as you comfortably can (simple walking in the house, no weights or strains).  And please update us on the findings from the lymph node and the missing nodule.

If you have any questions feel free to ask.  You and I (along with many others here) seemed to have gone through the same type of treatment, so there is a lot of experience we can share with you.

Lou

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Welcome Fuzzy.  I am just now facing surgery for a left lower lung nodule.  PET scan is in the next week, follow up with nodule specialist in the week after and consult with the thoracic surgeon.  It is so encouraging to hear that you feel well after the surgery.  Thank you!  I cannot shed light on anything right now but I sure can understand your frustration.  WTH?

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  • 1 month later...
On 3/9/2020 at 7:02 PM, LouT said:

 

first surgery done was removal of entire lower right lobe as node was very high up (on the major fissure) Tissue was sent for biopsy along with removed lymph nodes.  Nothing was found-oddly-in lung tissue which stunned both surgeon and my pulmonologist .  the only cancer found was in a lymph node (level 7)  after two pet scans 

I was sent to MSK due to my local hospital being overrun with Corona.  

 

Onco there were really stunned at the nodule NIT being found, he's never seen it in thirty years of practice.  

 

 

 

On 3/9/2020 at 7:02 PM, LouT said:

 

 

 

Fuzzy,

Welcome to the club nobody wants to be part of.

Like you my pulmonologist found a nodule (8mmx5mm, believe it or not) in my lower right lobe.  A pet scan was inconclusive and although we tried a CT Guided Biopsy the doctor doing the test decided that the nodule was too small and hard to get a sample from so he didn't want to risk a pneumothorax for a failed biopsy.  So, off I went to the surgeon who explained that they would do a wedge to remove the nodule and test it for malignancy and if so, they would remove the lower right lobe.  Well, it tested positive and my lobe was removed.  I did suffer a collapsed lung the evening of the surgery only because a nurse's aide knocked the chest tube pump off the bed rail, it fell to the floor breaking the vacuum in the tube pump and I immediately felt the pain, so my heart goes out to you on that one.  BTW, in my case they got a replacement pump in a matter of a couple of minutes switched me over and the pain left almost as quickly as it first hit me.  

Now, having said all this, I'm confused by a couple of things (and I believe your story is accurate).  I would have expected the wedge resection first to test the nodule for malignancy.  If it was negative you'd get sewn back up, if not then the lobectomy (which I'm glad you're recovering from so well).  That is my first disconnect from what I and others in cases similar to yours found to happen.  Second, it's odd that a lymph node has an unidentified cancer.  Could it be that the lymph node had a growth and it was removed and sent out for biopsy?  I'm just not clear on that part.  Hopefully you'll be hearing more about that lymph node soon.  

In the meantime, rest up, keep hydrated, use the spirometer every hour (or less), keep your head elevated in bed and do as much exercise as you comfortably can (simple walking in the house, no weights or strains).  And please update us on the findings from the lymph node and the missing nodule.

If you have any questions feel free to ask.  You and I (along with many others here) seemed to have gone through the same type of treatment, so there is a lot of experience we can share with you.

Lou

 

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Apologies for not getting back sooner-It's been a madhouse tase last two months!

 

update:

 

I'm getting treatment starting tomorrow.  Radiation and chemo simultaneously.  chemo will be  Carboplatin/Alimta every three weeks for four cycles. Radiation was originally 30, but dose was increased slightly and treatments reduced to 20 to keep me from coming out often with this virus about.  

 

 

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On 3/9/2020 at 3:09 PM, BridgetO said:

Hi Fuzzy and welcome here! The elusive nodule is very strange!  I can see why you're treading on eggshells.I had a similar sized nodule that  couldn't be needle-biopsied and also wasn't amenable to wedge resection due to its location. Fortunately my lobectomy  was unremarkable and the little bugger was found with no problem.  Keep posting and let us know how you're doing. 

BridgetO

Treatment starts tomorrow!!  I'm glad/apprehensive that it's FINALLY started.  Last PET scan 11 days ago showed no hotspots except a lymph node not removed during surgery-and not far away from a node that was removed and found to be cancerous.  

both oncologists are optimistic about results!

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Fuzzy,

Glad to hear that you are beginning your treatment.  How's the healing going from the surgery?  It sounded like you're moving a long well in that department.

Lou

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  • 2 weeks later...
On 5/10/2020 at 12:32 AM, LouT said:

Fuzzy,

Glad to hear that you are beginning your treatment.  How's the healing going from the surgery?  It sounded like you're moving a long well in that department.

Lou

Tom:

 

I'm healing quite well, still a bit of stiffness and some areas numb- but little actual pain.  

I've had 10 radiation treatments, and get second cycle of chemo next week (Carboplatin/Alimta) 

So far the worst effect is tiredness...but I've been told second chemo is where hair loss usually begins.  I've had some nausea, but it';s easily controlled

Cheers!

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  • 3 months later...
On 3/9/2020 at 3:09 PM, BridgetO said:

Hi Fuzzy and welcome here! The elusive nodule is very strange!  I can see why you're treading on eggshells.I had a similar sized nodule that  couldn't be needle-biopsied and also wasn't amenable to wedge resection due to its location. Fortunately my lobectomy  was unremarkable and the little bugger was found with no problem.  Keep posting and let us know how you're doing. 

BridgetO

Bridget

 

all done treatment and have my pet scan Tuesday. When they did surgery, they found one level seven node was cancerous, but not grossly oversized. A pet scan just before chemo and radiation showed another nearby node lit up-so that got zapped with radiation.  I did carboplatin and Alimta one cycle every three weeks ( four treatments) I handled it fairly well.  Radiation gave a good case of esophegitis but that’s mostly gone now.

 

im a nervous one waiting for my pet scan.... 

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On 3/9/2020 at 5:26 PM, Tom Galli said:

Fuzzy,

I’ve heard of phantom nodules but a missing module is a first. 

Stay the course. 

Tom

All done with PETscan Tuesday. More than a bit nervous though I’m feeling pretty good physically

 

 

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  • 2 months later...
On 9/5/2020 at 7:27 PM, LouT said:

Fuzzy,

Fingers and toes crossed that you'll have a good outcome with your latest tests.

Lou

Lou:

I hope this finds you well and fighting on! Please forgive me for not updating earlier as my wife had done health issues wanting attention-she’s fine now!

Im doing pretty well...pet scan showed nothing lighting up-I was beyond thrilled with that. 
 

A few weeks later in October i had some loose coughing and brought up a bit of phlegm/mucous with a tiny amount of blood in it ( a few spots)  I went to MSK where they did a follow up ct scan on 26 October (6.5 weeks after the pet scan )which was fine except for 

“A new 0.9 x 0.6 nodular opacity in left anterior upper lobe possibly infectious/inflammatory”

Of course, I’m thinking the absolute worst but doctors don’t seem overly concerned as I’m due for another follow up ct scan on 9 December-one previously scheduled after my PET scan in September. 
 

I don’t consider myself a wimp, but now I’m on eggshells waiting for two weeks from now-and I’m hesitant to dump what’s likely ( hopefully) nothing onto folks like yourself who’ve gone through far worse  

still, I’d like your opinion. 
 

best wishes

 

pat

 

  

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On 5/10/2020 at 12:32 AM, LouT said:

Fuzzy,

Glad to hear that you are beginning your treatment.  How's the healing going from the surgery?  It sounded like you're moving a long well in that department.

Lou

Forgot to add that as of now, healing is nearly complete. A rare twinge of tightness is the surgical area but no pain at all. 

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On 9/5/2020 at 3:50 PM, BridgetO said:

Let  us know your results. Fingers crossed for no "light up" on the PET.

Bridget

No light up!!!

 

but some coughing brought up a tiny bit of blood-CT scan showed a 0.9 x 0.6 cm nodular opacity that they said is “possibly infection or inflammatory”.... it wasn’t on the PET scan from six weeks earlier, so doctors don’t seem overly concerned ( of course I’m scared to death!)

 

I have a previously scheduled CT scan on the 9th of December.  I’m more than a bit apprehensive. 

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Fuzzy,

I never try to out-diagnose the doctors on anything, but if they are not that concerned about it then it is likely with good reason.  The PET Scan being negative is certainly a positive in your favor here.  Please try and focus on what you know and "the now".  As of right now your doctors believe that there is some inflammation or possibly some small infection.  Your PET Scan was negative and you're being watched very closely.  So try and relax and keep focused on the next parts of your treatment and the outcome you are looking for.  This always sounds like easy advice to give and harder to do, but folks here helped me through some scary times and they were right about always going one step at a time.  Stay strong and keep moving forward, you're doing well.

Lou

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