The Colon Club

Hi all,
I was here in 2012 when I was diagnosed with Stage 1 colorectal cancer at age 39. You all were incredibly helpful and I'm sorry to have disappeared after surgery and recovery. My case was straightforward: 4 cm tumor in rectosigmoid junction removed with 12 inches of colon and neighboring polyp at same time. Annual colonoscopies since, due to age at diagnosis (39) and extensive family history (but Lynch negative). First 2 were clean, but most recent one in May revealed 4 new tubular adenomas. Oncologist takeaway was that we will continue annual scopes because my colon "likes to make polyps." CEA was 1.0 at diagnosis, .3 after surgery, .8 at last draw in March.

This summer, I developed a feeling of chest tightness after a period of being ill with fevers and chills. Chest X-ray revealed abnormal fullness in AP Window, and a CT was suggested.
CT revealed 1 cm nodule in left lung, along with a neighboring 4 mm nodule. Also significant AP window adenopathy and 2 enlarged hilar lymph nodes (both around 2 cm).

Needle biopsy of lung nodule inconclusive.

Referred to pulmonary oncologist who recommends bronchoscopy with lymph node biopsy. He thinks this all may be related to an infectious or inflammatory process, but cannot rule out concerns of colorectal recurrence or a new primary cancer. I am having the bronch on Monday.

Has anyone had lung mets or distant lymph node mets after a stage 1 or 2 diagnosis? Has anyone had a bronch with lymph node biopsy? I have not had a CT of abdomen and am wondering if that should have been ordered to look for other nodes or liver involvement, but I guess the biopsy will tell us if we need to look for those. I welcome any and all thoughts, anecdotes, words of wisdom from all the warriors on here!

Thanks,
Mrs Notes

Hi Mrs N,
I have no advice but as a fellow stage 1 RC I know this situation is one you hope will never happen. Hopefully the onc is correct and it is just inflammation. Wishing you all the best for Monday.
(((hugs)))
Jan

I was Stage IIIC so I can't answer most of your questions, but I have to ask have they run a PET scan and if not why? That is a question I would ask your doctor. From my experience this should have been done before any type of needle biopsy.

RedTexa5,

They have not done a PET scan and I was wondering about that myself. I suspect that the reason may be the size of the lung nodule (1cm) which may not light up on PET and give a false negative, but I am stumped why they haven't done one for the lymph nodes. It may be too late to rearrange things, but do you think I should ask for a PET before doing the bronch/biopsy?

Mrs N, I'm a stage 1, ultra-low rectal, with a distant met as of May of this year. I was asymptomatic, but my CEA had been trending upward (2.9,4,4.6) during the Dec of last year through the first four months of this year, so a PET was ordered. They found a 1.5cm solitary met in the UL lobe. Time wise, it was 22 months after my original diagnosis and 17 months after the TEM surgery. A "curative intent" lobectomy with two lymph nodes were removed. The nodes were both negative. I've chosen to do a precautionary six months of Folfox+Avastin. I'll have a mid-treatment CT in a few weeks and hopefully we'll see nothing new.
From what you've told us, I think your gut instinct is right on! I would think both a CT and PET would be in order asap. But I certainly hope they don't find anything! Hoping the nodes are just inflamed and the nodules are benign.

I would ask for a PET, I believe both my liver ones were under 1cm.

Found this on my thread, scroll down to the red highlighted area in my one post
viewtopic.php?f=1&t=50104&hilit=ongoing&start=75

I see what you mean. At this point, I've only had a CT of the upper chest. I will ask for PET. Don't even know if something could be in liver.

I also think I now understand the significance of the lymph nodes being "rounded" rather than oval. The only thing CT imaging of nodes can really do is measure size and shape, so larger than 1 cm are suspicious, and rounder rather than oval are suspicious. Any nodes with a short axis measurements larger than 1 cm are HIGHLY suspicious. I've got 2 nodes that fit that criteria. So now I know why the onc. is wanting the biopsy.

Hope to know more tomorrow. Thanks for the advice and support.

Sorry for not getting back to you sooner, but depending on the machine they should be able to get resolution on a 1 CM mass, if your local hospital doesn't have a machine of sufficient clarity I would go some were that does. You don't say were you are so I don't know if you have national healthcare or not, but even in countries that have a single provider system you can often go to a major medical center and get better scans. Just a thought, but what you have outlined as far as your treatment is quite different from what was done for me.

I am actually at a major medical center (Vanderbilt) and feel very good about the cancer center and team here. They absolutely have the scanning equipment, so that's not the issue. I suspect that they have not offered a PET because it would not be able to give a definite diagnosis of malignancy, as "hot spots" on PET can be false positives. If the nodes are the only things that light up, we'd be no further along than we are now. I think the oncology team feel that even if they get a PET first, they will need some sort of biopsy to confirm cancer type. If the nodes are negative, there may not be a need for the PET. If the nodes are malignant, they'll know exactly what kind of cancer they're dealing with and can then do a PET to see if there is further activity. That's my guess. But I will ask tomorrow.

I really appreciate the feedback and all of the experiences. I think every onc. and cancer center has a different protocol with these things, and there is no one-size-fits-all approach. But thanks to your sharing your experiences, I do plan to ask tomorrow about a PET and see what they say. I am eager for the EBUS tomorrow, because I know that within 48 hours or so, I'll have a definite answer.

Thanks again,
Alyssa

Well you are at a major medical center so I would ask the why they are proceeding as they are and then perhaps get a second opinion.

Just wanted to report that the EBUS today went well. The Dr. was able to obtain tissue from 2 lymph nodes (one hilar and one AP area). He told me that the tissue appeared to contain some granulomas (benign) but that we will not have a definite path report for 2-3 days. He is hoping that this serves to reassure us all. After the procedure, I was VERY grateful that this is how we proceeded. Since there is a good chance this is all infectious/inflammatory, a PET in advance would just have raised more questions than answers. Now, in 48 hours or so, I should know what we're dealing with. If this is metastasis, there will be a lot more to work up, but hopefully the news will just be good. He did say he would repeat the CT in 3 months even IF the tissue was completely benign, out of an abundance of caution.

Thank you for all the good thoughts and advice.

MrsNotes

No PET for my husband yet either. Not sure what to think yet. When I asked chemo was just finishing & he said Everything would light up sooo. Good luck. Hopefully nothing!

I was stage 2 in 2012 (surgery and chemo) then mCRC to liver (1 met) in 2014. So it does happen even with the early stages. Best advice I can give is to do as your docs advise and figure out what it is.

Elise

Pathology from EBUS came back and is good news. No cancer in either of the lymph nodes biopsied, and one had a positive stain for histoplasmosis. I have no idea when I was exposed to histo, but it's apparently quite common in Middle TN. Perhaps my low white blood counts (side effect of my MS medicine) made me more vulnerable.

I cannot thank you all enough for the advice and support. I caught a glimpse of the fear that comes with a stage IV diagnosis. It reminded me to live each day to the fullest. You all have my deep thanks and admiration.

Gratefully,
Mrs. Notes