tubulovillous adenoma with high grade dysplasia

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kathydowd

tubulovillous adenoma with high grade dysplasia

Postby kathydowd » Thu Feb 11, 2010 11:35 am

Hello, I am looking for some advice. I am 40 yo female who recently had rectal bleeding. I went for a colonoscopy and they removed a Large polyp which the doctor just called yesterday and told me it was a tubulovillous adenoma with high grade focal dysplasia and that I am "on the line" for cancer. I am very scared by this and a little confused. I have to go back in 4 weeks for another colonoscopy to make sure all of the polyp was removed. I have no colon cancer in my family and am wondering if anyone else has had this diagnosis and how it turned out. Should I go for a second opinion? Thanks for your help.
:?

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KarMel
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Re: tubulovillous adenoma with high grade dysplasia

Postby KarMel » Thu Feb 11, 2010 12:56 pm

That is exactly what my biopsy said after my colonoscopy. However, the doctor who did my scope said it just looked "ugly", and she wanted me to get a CT scan to make sure nothing else was going on. My CT showed mets already in my lungs and liver. Therefore, on to surgery I went.
Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"

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Bev G
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Re: tubulovillous adenoma with high grade dysplasia

Postby Bev G » Thu Feb 11, 2010 1:13 pm

Hello:

Thanks for sharing your question with us. I too had an "ugly" polyp on colonoscopy in mid-December. It "looked" very suspicious to both the GI doc, the colorectal surgeon, and my husband, who is a doc. I had a colon resection done about 5 days later, removing a 5.5 x 4.5 x 2.5 polyp. It turned out to be a moderately differentiated cancer which had already gotten to 2 of 20 nodes and my liver. The pathology came back on my colonoscopy biopsy a day later--- the result??? Benign adenomatous polyp! I'm not trying to be scary. The thing is when they take a sample, it's just a sample, the findings depend on what part they've sampled. As it turned out, on the surgical pathology, the VAST majority of my tumor was composed of benign cells, a very small percentage were malignant, and the GI doc at the colonoscopy just didn't happen to grap them. I guess it just doesn't take many to really mess you up. Don't take ANY chances with follow-up!!

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
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Re: tubulovillous adenoma with high grade dysplasia

Postby helen098 » Thu Feb 11, 2010 1:29 pm

I don't want to scare you but I have two reports of tubulovillous adenoma
and ended up with stage 3 colon cancer
mine was described as the cancer was in the middle so when they took parts for the test they came back negative. I had three colonoscopies and they could not remove my growth as it was too flat.
I think of it like a rollo candy the camarel was the cancer center.
go back for the second and even thrid colonoscopy if need be.
my colon doc only addmited to me later that even though the reports were negative he felt something was not right.
I hope everything works out
stage 3A surgery 6/6/6 finished chemo jan 07
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Re: tubulovillous adenoma with high grade dysplasia

Postby weisssoccermom » Thu Feb 11, 2010 1:42 pm

Kathy,

Make sure that you go back for the repeat colonoscopy. Also, ask if the polyp was tested in various different sections, not just on the outside. In addition, I would ask for a CT scan and depending on where this polyp was located an endorectal ultrasound. This would only be done if the polyp was located in the rectum. If it was, then the EUS can detect whether or not it appears that the polyp has grown into the rectal wall and/or any pelvic nodes are affected.

Basically, if this diagnosis is confirmed, it means that this tumor was precancerous - it had gone from benign to becoming precancerous - a precursor to the polyp definitively becoming cancerous. I know colonoscopies are not a lot of fun, but please, don't put it off. If this polyp was in fact in the rectum, it's highly likely that you can get by with a flex sig in 4 weeks and won't need the full blown scope. If it was located higer up, then a scope is what you will need.

Right now you're doing the right thing. Even if other tests are ordered and a follow up proves that nothing more is left (they got all the polyp out) you will still need another scope in a year or two. This just proves that your body is quite adept at making polyps so don't ever put off having another scope down the road. It just isn't worth it.

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Re: tubulovillous adenoma with high grade dysplasia

Postby kdowd » Thu Feb 11, 2010 2:05 pm

Did any of you who responded have any symptoms leading up to these diagnoses?

helen098
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Re: tubulovillous adenoma with high grade dysplasia

Postby helen098 » Thu Feb 11, 2010 2:18 pm

no symptoms no family history just an unrelated anal fistula which did heal and took 5 operations to get rid of
stage 3A surgery 6/6/6 finished chemo jan 07
11 5FU/12 Levcouorin/10oxaliplatim
port removed jun 07
anal fistula surgery oct 05 may 07 feb 08 sep 08 jun 09

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Re: tubulovillous adenoma with high grade dysplasia

Postby KarMel » Thu Feb 11, 2010 7:48 pm

I can't really say I had that many symptoms. I was checked for colon cancer because I was found to be mildly anemic on a routine blood test and subsequently had a positive fecal occult blood test.
My stools were a little looose for preceding week or two, but I really didn't think anything of it. Looking back now, I can see where it fit into the picture.
Stage IV, April 2009.
Treatments...multiple .
Currently none
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Re: tubulovillous adenoma with high grade dysplasia

Postby Polarprincess » Thu Feb 11, 2010 11:12 pm

hi, i am assuming that since they actually removed the polyp that they biopsied the entire thing to make sure there was no cancer in there, but i agree, make sure to ask and to see the reports.Sounds like you may have caught it just in the nick if time. My first biopsies said the same exact thing, but they also noted on the report suspicious for malignancy although my polyp had not been removed yet. by all accounts it looked benign so the docs were shocked when it came back with a cancer in it. when it was finally removed, pathology came back with 1 lymph node involved, no spread anywhere else. my symptoms were a vague abdominal and back pain, a stretching like feeling in the area where it was, and bleeding.
42 y/o Diagnosed Stage IIIa (T1 N1 of 26 M0) July 2008
LAR July 24 2008
Supposedly benign polyp with
invasive tubulovillous adenocarcinoma
12 cycles Fulfox
28 days chemoradiation
Finished April 20th 2009
Currently NED

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Re: tubulovillous adenoma with high grade dysplasia

Postby garbovatwin » Sat Feb 13, 2010 10:35 am

Yes indeed. Do not miss a follow up scoping. Hopefully the one doing the procedure will be a GI surgeon rather than a 'regular' screener as he may be more in tune on what to biopsy and where.

When they found my dysplasia and the cluster of polyps still in there, it was found by my GI surgeon and missed by the initial screener.

Good luck.

jamiana
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Re: tubulovillous adenoma with high grade dysplasia

Postby mardrobe » Sat Feb 13, 2010 3:36 pm

I had a Tubular Adenoma four years ago and a flat tubulovillous adenoma two years ago. My doctor didn't believe I needed a followup for two to three years, but now that I am at two years I am uninsured and unemployed with no income, so I imagine I will just need to take my chances as I can't provide the check ups and medications my wife needs. She is the cancer survivor. Don't wait too long as no one can know what their future situations will be.


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