No confirming diagnosis

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OldDave
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No confirming diagnosis

Postby OldDave » Sun Nov 19, 2017 1:40 am

Mid summer a cat scan revealed expanded lymph nodes which was deemed to be lymphoma. A subsequent biopsy of the lymph nodes showed almost all dead cells but the few alive indicated colon cancer. Following was a colonoscopy, a P.E.T. scan, a bone marrow test (which indicated 0.2% lymphoma). None of these tests showed any evidence of colon cancer. My oncologist ordered an additional lymph biopsy so they could gather cells to test for future use in determining chemo drugs. The second biopsy was more extensive, they removed 11 samples and all the cells were dead. I've had 3 months of chemo treatments for colon cancer. Has anyone had a misdiagnosed colon cancer based upon biopsy/lab tests? I was never sick at all until I started with my chemo, now I can't walk the dog, or leave the house due to unexpected and unannounced intestinal events.

Pemba
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Joined: Thu Aug 24, 2017 7:52 am

Re: No confirming diagnosis

Postby Pemba » Sun Nov 19, 2017 5:19 am

I don’t quite understand, why did you have a cat scan in the first place? And where you diagnosed with colon cancer based of the biopsy of one lymph node? You said you had a colonoscopy also, did anything show at all or was it clean,
25Y
15mm polyp
Next scopy: 2020

OldDave
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Re: No confirming diagnosis

Postby OldDave » Sun Nov 19, 2017 11:17 am

Thank you for the inquire and response. I had a mild stomach ache for a couple months. Not really bothersome, just noticeable. My family physician prescribed Omeprazole and said that if it isn't better in 3 or 4 weeks, we'll have to do a cat scan. It revealed enlarge lymph glands. Since then the colonoscopy failed to show colon cancer as did a P.E.T. scan. The first biopsy of the lymph node results stated that very few useable cells were harvested, most were dead cells, but the cells they could evaluate were colon cancer cells. Last month another biopsy showed only dead cells from 11 samples taken from the lymph node. I don't know much about anything but it seems like I'm going through some extremely difficult therapy based upon the few cells that have been available. Incidentally, I have an appointment at the James Center at The Ohio State University on December 6 for an additional opinion. One last note, I had a colonoscopy in February of 2016 which was clear. That was performed as a matter of course for an older patient not due to any symptoms. Perhaps I should mention that I''ll be 75 next month. Up until I started chemo I played golf 3 times a week (walking, no cart) and walked my sweet dog for about 2 miles a day.

Lee
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Joined: Sun Apr 16, 2006 4:09 pm

Re: No confirming diagnosis

Postby Lee » Sun Nov 19, 2017 3:16 pm

Do you know what type of chemo you are on?

Lee

Edited to add. Get a 2nd opinion at a major cancer treatment center or cancer hospital. Forward all info them. Is there one near you?
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

OldDave
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Re: No confirming diagnosis

Postby OldDave » Mon Nov 20, 2017 11:52 am

Thanks for the reply. Going to the James Center at Ohio State on 12/6 for second opinion.
Chemo is Folfox.

KElizabeth
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Location: Omaha

Re: No confirming diagnosis

Postby KElizabeth » Mon Nov 20, 2017 4:09 pm

Maybe a liquid biopsy would be better. I ammot sure the cost but its less invasive and would likely ave a better observable sample.
Female age 38- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 -current
CEA at recurrence:10.1/august, 2015
CEA: 1.9 February, 2016
CEA: 16.4 March 2017
CEA: 90.1 October 2017

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: No confirming diagnosis

Postby Bev G » Mon Nov 20, 2017 5:41 pm

Hello, and welcome to the Colon Club. I can't believe you're going through this. FOLFOX is composed of very tough drugs (as you've found out) and to put you on that without absolute evidence you have colon cancer seems extreme to me. I have stage IV colon cancer and my husband had stage III lymphoma (which has been cured through a stem cell transplant. Lymphoma can be very tricky to diagnosis. His biopsies had to go to three different hospitals to get the diagnosis down. Given your negative colonoscopy I think it would be far better for you to get to a comprehensive cancer center before continuing with the FOLFOX, and let them go through all the data and figure out what's up.Have you had a CEA done? Have you been having GI symptoms?

We''ll stand by you while they're getting this figured out.

Best wishes,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

zx10guy
Posts: 146
Joined: Mon Jan 07, 2013 12:54 pm

Re: No confirming diagnosis

Postby zx10guy » Mon Nov 20, 2017 6:53 pm

Assuming the biopsies were correct, this could be a CUPs (carcinoma of unknown primary) situation. There was one member here who was dealing with CUPs. CUPs is a rare circumstance but can happen.

OldDave
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Re: No confirming diagnosis

Postby OldDave » Mon Nov 20, 2017 7:07 pm

Thanks for the responses. My colonoscopy was clean and the pet scan failed to show anything but the lymph nodes in the abdomen. I will check on the liquid biopsy. Any suggestions are welcome, I am adrift at sea without a rudder at this point. My upcoming visit to Ohio State's James Center should provide some answers. I feel like I'm gong through some pretty uncomfortable chemo based upon that one biopsy. With the lack of available cells to check I think it's inconclusive. Until I found this site, I felt as though I was alone in this. For all your sakes, I wish I was alone but I appreciate all the kind responses.

veckon
Posts: 110
Joined: Thu Jul 27, 2017 7:44 am

Re: No confirming diagnosis

Postby veckon » Mon Nov 20, 2017 8:04 pm

OldDave wrote:Mid summer a cat scan revealed expanded lymph nodes which was deemed to be lymphoma. A subsequent biopsy of the lymph nodes showed almost all dead cells but the few alive indicated colon cancer. Following was a colonoscopy, a P.E.T. scan, a bone marrow test (which indicated 0.2% lymphoma). None of these tests showed any evidence of colon cancer. My oncologist ordered an additional lymph biopsy so they could gather cells to test for future use in determining chemo drugs. The second biopsy was more extensive, they removed 11 samples and all the cells were dead. I've had 3 months of chemo treatments for colon cancer. Has anyone had a misdiagnosed colon cancer based upon biopsy/lab tests? I was never sick at all until I started with my chemo, now I can't walk the dog, or leave the house due to unexpected and unannounced intestinal events.


Having been through FOLFOX, which also obliterated my health, it is beyond shocking to hear it has been administered to you without definitive evidence of advanced colon cancer. It just about put me in cardiac arrest once. I’m 27 and was healthy before treatment. My original biopsy was actually redone internally by MSK because of the extremely slim but real probability of this happening. I am glad you are getting a second opinion. I had several “second opinions” done before settling on MSK.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering


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