The Colon Club

I posted a few days ago introducing myself and sharing my story; 34 yo woman, mother of 2, diagnosed with stage IV colon cancer Mets to liver in March 2015, underwent colon and liver resection, nearly 2 years NED.

My most recent scan showed a growing nodule indicative of lung mets. However, my biopsy came back negative... the surgeon and oncologist agree that we should move forward with a lobectomy given my history and how the nodule presents (I also had a 1 point jump in CEA from 1.5 to 2.5).

My question- are false negatives common? My doctors said “he sees them” but didn’t give me specifics, unfortunately I was flustered when he gave me the news and didn’t ask about it. Also, does it seem reasonable to proceed with surgery given all of the factors?

I’m concerned that I’ve just been handed a big platter of false hope and want to keep my expectations in check.

Thanks for any and all advice, experiences and comments.

Beccaschocked wrote:My most recent scan showed a growing nodule indicative of lung mets. However, my biopsy came back negative... the surgeon and oncologist agree that we should move forward with a lobectomy given my history and how the nodule presents (I also had a 1 point jump in CEA from 1.5 to 2.5).

Hi and welcome. Where are your being treated at? I would highly recommend a cancer treatment center for 2nd opinion if you have not already done so.

Know that you are still in a low category regarding that lung met'.

Please know that you are not alone here.

Lee

Beccaschocked wrote:... Also, does it seem reasonable to proceed with surgery given all of the factors? ...

As others have said, it would be a good idea to get a second opinion on this from a highly qualified professional.

When I had a similar thing happen to me a few years sgo, I got a second opinion from a pulmonologist, who sent me off to have a PET/CT scan. The nodule did not light up on the scan, so he said that it was unlikely to be a met. A year later, my oncologist agreed and said that the nodule wasn't anything to worry about.

Did you have a CT guided needle biopsy? Core biopsies can sometimes not get enough of the nodule to yield a diagnosis. It can happen, especially if it is small. Sometimes people attempt a repeat biopsy or a different method (surgery), but the latter is probably the same as just taking it out. There's also the option of short term followup with CT (with or without PET) but it sounds like your oncologist would prefer not to wait. Second and third opinions could help. Wish you luck.

As others have recommended, maybe a repeat biopsy or second opinion at a cancer hospital. Another set of eyes on it from a different hospital might have a different approach. Second opinions are a valuable thing to look into to before a lung surgery!

Personally, I lean towards the recommendation of your medical team to undergo the lobectomy.

Why?

Your lung module grew markedly in size from 6 mm to 12 mm with a corresponding rise in CEA; the appearance of the nodule as described as round and regular in appearance - is more characteristic of a problematic lesion.

Core biopsies are not always 100% accurate. The inaccuracy of a CT guided core biopsy owes to the fact that a tumor/nodule has both atypical cancer cells and normal healthy cells. The needle can “miss” striking atypical cancer cells, depending on where the needle penetrates the nodule. A false positive occurs when the biopsy draws a core of healthy cells from a nodule that is otherwise infiltrated with cancer cells. A core biopsy is only as accurate as the sample of tissue drawn and extracted.
Karen

O Stoma Mia wrote:

Beccaschocked wrote:... Also, does it seem reasonable to proceed with surgery given all of the factors? ...

As others have said, it would be a good idea to get a second opinion on this from a highly qualified professional.

When I had a similar thing happen to me a few years sgo, I got a second opinion from a pulmonologist, who sent me off to have a PET/CT scan. The nodule did not light up on the scan, so he said that it was unlikely to be a met. A year later, my oncologist agreed and said that the nodule wasn't anything to worry about.

Was yours also growing quickly? Did you have an increase in CEA? Just curious if anyone has actually had a benign Nodule that behaves so much like cancer.

Thank you so much for all of your responses!

I go to Virginia P. Piper cancer center. So far, I’ve gotten opinions from two surgeons, my oncologist, and a tumor board. All gently recommending I move forward with surgery.

I tend to agree and want it out ASAP! but I also don’t want to make a rash or fear based decision.

Thanks!

Beccaschocked wrote:...Was yours also growing quickly? Did you have an increase in CEA? Just curious if anyone has actually had a benign Nodule that behaves so much like cancer.

My nodule had been there from the very beginning and stayed the same size for 4 consecutive CT scans. Between my 4th and 5th CT scan it increased in size somewhat. At that point in time my CEA was <1.0 -- i.e. no increase over previous CEAs. In my 6th CT scan there was no further change in size of the nodule.

Just a quick add on here :

I had a wedge resection via VATS ( minimally invasive surgery ) of a single met, which was confirmed intra-operatively with pathologists standing by.
IF it was not a met, but another primary lung cancer, the surgeon would have done full open chest surgery and lobectomy.
This is maybe something to ask your surgeon about as another option ?
Biopsies are not 100% all the time, so my surgeon did pathology on the resected section itself and had the whole thing to look at.
My met was on the lobe margin and easily accessible for VATS ... some nodules may not be.

Generally surgical oncologists prefer a "when in doubt take it out" philosophy if there are any questions about the patients situation.
Since you have had prior liver mets, I doubt they would want to " wait and see " with this.

They are your experts and know your sitrep best, so I would be inclined to listen to their advice.

Best wishes moving forward
CRguy

MissMolly wrote:Personally, I lean towards the recommendation of your medical team to undergo the lobectomy.



A false positive occurs when the biopsy draws a core of healthy cells from a nodule that is otherwise infiltrated with cancer cells. A core biopsy is only as accurate as the sample of tissue drawn and extracted.
Karen

That would be a "false negative" wouldn't it?

Agree with Miss Molly. My thoracic surgeon said biopsies are good for positive results but they are not accurate for negative. It has to do with the "sampling" process. It's too easy to grab a piece of tissue that doesn't have cancer cells even though there's an active tumor.

I've had a few lung tumors, three cancerous and one benign so I think I can give you some advice.

First of all, I was diagnosed with two lung tumors, one in the bottom of each lung. They were both removed by wedge resection (using a VATS procedure) because of their location. Then about 10 months later I had something show up in my right lung. It was also removed by wedge resection (VATS again), but it turned out to be a benign granuloma, so no cancer whatsoever. Then a year later I had another something show up in my left lung. That time the entire lower lobe was removed, again with a VATS procedure.

The difference in the latter two cases is that my CEA did not increase with the benign granuloma. What made them think it was cancer was that it was growing fairly quickly. But, when the next one appeared, my CEA started going up -- 1 point every few months. My docs and I felt very strongly that it was a lung met so we didn't even bother with a biopsy. The good news is that I've been clear since then and that was 4 years ago!

I'm assuming they can't do a wedge resection because of your lung met's location. In that case, see if the surgeon can try to remove it with VATS. Your pain level and recovery will be a lot faster. You stand a good chance of returning to your NED status after this surgery (and a few months of chemo) so stay strong and look at this as just a little bump in the road!

Also, if you need any advice about the surgery itself, feel free to PM me or ask here. One other thing, in case it matters to you: I am a runner/hiker/mountain climber (in other words, very physically active), and no one would know about my lung surgeries based on my athletic performance. I got all my lung capacity back in a year of training.

Hope this helps!
Juliej

Juliej thank you so much for sharing your experience, it is reassuring to hear from others who have walked this road. It also affirms our decision to move forward with surgery.

The surgery is technically a VAT, but a lobectomy rather than wedge. Unfortunately my nodule is in a tricky area, making a wedge surgery impossible.

I’ll be sure to update this thread when we get the pathology report back.

As others have stated, biopsies are not 100%. I had biopsy samples taken from a polyp found in my appendix last year. Due to only part of the polyp accessible to my GI doctor's colonoscopy scope, the amount of sampling was limited. The pathology came back as high grade dysplasia. I followed my CRC's advice to have a right hemicolectomy. Post surgery pathology came back as appendicial cancer in situ.

So sampling is critical in getting an accurate picture of what is going on in the tissue in question.

As far as something changing on a CT that is benign, I saw this on one scan with two hemangiomas in my liver. The two areas were noted by the radiologist to have slightly grown. The change is pretty small and the doc and I chalked it up to sampling variability as the CT scan takes images of you in slices. It was probably a combination of how I was positioned on the table and where the scanner slice was taking the image.

Beccaschocked wrote:Juliej thank you so much for sharing your experience, it is reassuring to hear from others who have walked this road. It also affirms our decision to move forward with surgery.

The surgery is technically a VAT, but a lobectomy rather than wedge. Unfortunately my nodule is in a tricky area, making a wedge surgery impossible.

I’ll be sure to update this thread when we get the pathology report back.

Yes, please give us an update when you get the report!

My last surgery was a lobectomy so I know where you're headed. I recovered just as quickly from it as from a wedge resection although they kept me in the hospital a day longer. Ask your thoracic surgeon for an "incentive spirometer" and start using it to strengthen your lungs before surgery. Let me know if you have any questions about anything!

Hugs,
Julie